Sjogrens World Forums

Sjogrens Topics => Living With Sjogren's => Topic started by: racheld724 on October 14, 2013, 06:10:05 AM

Title: Sharing Methotrexate Experience
Post by: racheld724 on October 14, 2013, 06:10:05 AM
I am 30 years old and have been suffering from Sjogren's symptoms for years.  Mainly fatigue leading to muscle loss, depression, etc.  I also have endometriosis and lumbar degeneration with stenosis.  I was a collegiate athlete and a competitive triathlon, pretty much active my entire life.  Never could find a reason for my extreme fatigue, weird bouts of weakness, stiffness, and several other symptoms.  Eventually, I had the right test done,  an ANA test (and it was positive), leading to a rheumy referral, to a lip biopsy (positive).

I took prednisone for two weeks to simply see if my symptoms improved.  And, they did.  Actually I didn't know how bad things were until taking the prednisone. On it, I was actually doing everything I wanted to do without having to ration my energy. 

This was a clue to what meds may help.  Started with plaquenil for 6+ months.  It did nothing.  I shifted my focus to an even cleaner eating lifestyle, eliminating food intolerances and allergens.  STILL NOTHING!  Last year, my rheumy suggested Methotrexate.  I considered it for a few minutes, and declined.  Deciding to gruel through life, with a hope of feeling better some day. 

Here I am a year later, with no improvement and my fatigue is now accompanied with this thing called "joint pain."  I never thought I would suffer from arthritis, ha!  Anyway, my husband came with me to the rheumy appointment this time, who was still suggesting Methotrexate.  The doc's deduction was that it comes down to quality of life.  My husband stated that my personality is to gruel through things, but if this med could help, maybe I should try it.

I felt like I was giving in.  I don't want to deem myself as "sick"  I consider myself healthy.  I cried all day Saturday and took my first dose Saturday night. I did not have any issues that night.  The next morning I felt hungover (tired, headache, queasy stomach, a little weak and shaky, some stomach cramping in the p.m.). Nothing that I couldn't handle.  Today is Monday, I am still feeling a little queasy and shaky.  But am feeling relieved and hopeful that this med works.  I am also taking 1mg of folic acid on the non-methotrexate days.

I hope this post is helpful.
Title: Re: Sharing Methotrexate Experience
Post by: Joe S. on October 14, 2013, 06:16:16 AM
Welcome. I have had to use alternatives because of reactions. Here are some tips that may help you manage your life with this health challenge.

While I am glad that you found us, I do not like it that anyone else should have to deal with this health challenge. I am more frustrated when I see younger people with this illness understanding that there is so little that is being done to help us. I believe that the medical model for Auto Immune disease is wrong. I use alternative therapy because of bad reactions to Plaq and MTX.

Sjogrens: Dry eyes, dry sinuses, dry mouth, dry skin, and dry bum.

You may or may not be faced with other health challenges related to this disease that the doctors do not tell you about. Auto Immune (AI) diseases love to bring their friends. If you have one, eventually you will have more than one.

I like also suggest that people with AI diseases read Spoon Theory on the web. It helps to explain how our lives have changed and helps us understand how we can manage the changes to our lives.
http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

1. Do not Panic: Anxiety can make your symptoms worse. I suggest that you read and practice the exercises in the book Feeling Good by David Burns. The book is on Cognitive Behavior Therapy (CBT). It has information on dealing with depression, grief and other mental health issues that you may face in living and managing this disease.

2. Breathe: For as long as you live always remember to breath. When we are in pain, our muscles go into a splinting action. I know that it is hard but we must remember to breathe through the pain.

3. Meditate: Meditation can help you deal with pain and symptoms. When you can do it for 15 minutes you will be at that stage. Here is a very easy meditation technique that will help you as it has helped me. Find a safe comfortable position and close your eyes. With your eyes closed, look to the top of your forehead. As you breathe in, think I am as you breathe out, think calm. Repeat as needed. Meditation can be as good as sleep.

With Sjogrens we tend to have a lot of infections so wear your polar fleece mumps scarf to bed. This will help your body to fight these infections. This link will help with the gland issues: http://www.chakraforce.com/Tonations.html#228.

Omega3, D3, C, Multivitamin, Probiotics seem to provide general support to our bodies when we are facing AI diseases. I like to add an 8oz glass of carrot juice every day to help my body generate endorphins.

I take what I call the Fabulous Five supplements and I wish I had known about them when I got my first AI disease. They are Alpha or R Lipoic Acid, Acetyl-L-Carnitine, Biotin, PQQ, and Co-Q10. As with any drug or supplement, do your own research and consult with your healthcare professional.

Sip-Swish-Swallow are the three Ss of Sjogrens.
Title: Re: Sharing Methotrexate Experience
Post by: SjoAmy on October 14, 2013, 07:27:53 AM
Welcome! 

I just started on Methotrexate 3 weeks ago.  My first two weeks were pretty rough.  I had swelling with red skin, then sometimes red hot skin -- my possible malar rash turned all shades of red & pink, no hiding that!.  Fatigue was off more than on, but yesterday I had the fatigue from he&&!  I couldn't get up!  My joint pain has decreased A LOT.  All my joints hurt before taking Methotrexate. 

You're not alone...I was an avid boxer.....my trainer said I could have had a career in it.....but Sjogren's hit my lungs first, before cursing my joints.  I can't box and then reach for an inhaler!  It was so embarrassing.  I used to help lead the class.....can't do that when you are waiting for your lungs to come back.

That folic acid should help.   If you have a problem that is NOT on your Methotrexate day, and you have already taken your folic acid....go to your drug store and pick up a bottle of OTC folic acid.  They come in 400 or 800 mcg.  To give you perspective, 1000 mcg = 1 mg.  Take 1 and monitor your symptoms.

Being on Methotrexate, isn't easy in the beginning.  You'll have plenty to fight through.
Title: Re: Sharing Methotrexate Experience
Post by: Nancy60 on October 14, 2013, 09:40:42 AM
Hi Racheld,

I, too just started MTX about 7 weeks ago. I've been diagnosed with Sjogren's since 2005 and held out on starting on MTX since about 2007.  I finally got to the point that nothing else was working and I was gradually getting worse and worse. I had problems with nausea and diarrhea and headaches with the pills so after a month my doctor switched me to injections. (I was already taking 2-3 mg of Folic acid that helped the nausea and headache some, but not the diarrhea. The injections don't hurt, you use a tiny needle for them, and I don't have side effects now. I am starting to see improvement in my joint pain and stiffness, and other than being fatigued for a couple days after my shot, my energy level has definitely improved! 

I hope you find improvement too. It can take 6-12 weeks to show improvements, but hopefully you will notice some improvement sooner than that. And be sure to communicate any side effects that are bothersome to your doctor, ask about Folic acid like Amy mentioned (my doctor told me not to go over 3 mg Folic acid, but there seems to be some variation among doctors, so talk to your doctor about how much to take), and if your having side effects that aren't improving and are bothersome ask about injections. By the way injections are better utilized by the body than pills. 

Good luck, and I hope you start getting relief.

Nancy
Title: Re: Sharing Methotrexate Experience
Post by: CMNK12 on October 14, 2013, 10:42:10 AM
   Hey and welcome,
   I too started MTX some months ago. I was an avid runner prior to sjogrens and I used to try to power through all of my flare ups too. I never wanted to admit defeat. I thought somehow if I just took my meds then all would be fine and I could be like everyone else. My best piece of advise is to listen to your body and slow down when it is screaming at you. We all just want to be our normal selves, but it is about finding a "new" normal and making peace with that person.
     The MTX requires an adjustment period, it will get better. Let your doctor know if it gets too rough, may require dose adjustment. I had very bad headaches and as my dose went up..just could not tolerate higher doses. Good luck and take care. CK
Title: Re: Sharing Methotrexate Experience
Post by: Chris on October 14, 2013, 05:01:42 PM
Hello and welcome!
I too, "gave in" and started methotrexate last year! I Am up too 8 pills per week. I will drop to 7 this week since my hair loss has increased. 
I hope it will help you to feel better!
Hugs
Chris
Title: Re: Sharing Methotrexate Experience
Post by: Tharrell on October 14, 2013, 05:23:17 PM
Wow, I didn't know mtx could cause so many side effects! I have heard about hair loss. I too had to start mtx. I started with 2 pills, then 4 and finally 6. I have had absolutely no side effects at all, maybe just a tad more in loosing hair but nothing I would call excessive.
I did manage to get of prednisone finally! I still have joint problems and I know rheumy won't be happy to hear that. I do my first six week blood work on Thursday and hope everything will be ok.
Meds sure work differently on everybody!
Title: Re: Sharing Methotrexate Experience
Post by: eye2dry on October 14, 2013, 05:45:15 PM
  I was having very noticeable hairloss before my sjogren/RA diagnosis.

It was one of my symptoms along with fatigue,joint pain, etc......

I first started on Plaquenil, then added MTX/

My hairloss stopped after these 2 meds.

I have very little hair in the drain or in my comb nowadays

So.......you can also have this weird side effect.....it's not suppose to be this way.


Also, I took my MTX at night on Friday in case I had any nausea or headache

then I would be in good shape for work Monday.


good luck.
eye2dry
Title: Re: Sharing Methotrexate Experience
Post by: Ark mom on October 14, 2013, 08:41:10 PM
Hello and welcome to our group!  I really hope that MTX works well for you.  I took it last winter for about 4 months.  I was having pretty good success on it but just not enough.  I had some hair loss, but that wasn't a big deal for me.  It took a few weeks for my body to adjust to MTX, and then I felt almost normal on it.  I even went back to playing tennis, which I normally play 2-4 hours per week year round. 

Don't give up hope.  There are lots of people here who are doing really well on the drug, and there is a good chance that you will, too.  If not, there are several other drugs to try.  Personally, I tried Arava next, without more success, and now I am on Cellcept (crosses fingers). 

Nice to meet you!  Take care. 

Title: Re: Sharing Methotrexate Experience
Post by: irish on October 14, 2013, 09:48:04 PM
I took Methotrexate for about 4 months back in 2005 and I could not believe how much better I felt. I have pictures from that Christmas of me with 2 months of Metho under by belt. I looked healthier than I had in a a few years.

Then in Feb I got sick and hadMRSA and it was discovered that I had mycobacterium kansasii. This is a bacteria that is found in the air, soil and water and is part of the tuberculosis family but is not contagious. I had tubercles in my lungs, spleen and liver and had to quit the Methotrexate. It turns out that I had low t-cells and no one knew it so that made me really high risk for infection. Just my luck.

I hope people give this drug a chance as when it works it is wonderful. Make sure to have your lungs monitored by a pulmonary doc thougH as one of the side effects is lung fibrosis. We always have to be proactive and take care of ourselves. Irish
Title: Re: Sharing Methotrexate Experience
Post by: Sleepy In Seattle on October 15, 2013, 08:46:39 AM
I have been on it for about 18 months now and it has helped me SOOOO MUCH. I also am a "slog it through" kind of person - very active - and very opposed to taking medications - especially ones as toxic as Mtx. But it became necessary (I won't get into that whole long story), and I wish I had started sooner.

Do be aware that side effects may get worse before they get better - but for most of us, they DO get better over the course of a few months.

These tips helped for me:
- always take  it on a full stomach
- take it at night so you sleep through the worst of the side effects (I usually sleep really well on Mtx nights!)
- if one weekly dose is wiping you out for a couple of days, ask your doc about splitting the dose in half and taking it two nights - I take 10mg Monday nights and 10mg Thursday nights, and that works REALLY well for me. Very effective, and almost no side effects
- taking a daily biotin supplement might help some with the hair loss.
- if you are somebody who drinks at all, you might want to cut that back to almost nothing. I always enjoyed a glass of wine with dinner, but now I only have maybe half a glass (on non-Mtx nights) maybe once or twice a month. The Mtx is very hard on your liver. I also drink a TON of water to help my body recover.

So far, my only lasting side effect has been the hair loss - it's way thinner, and has taken on a fine, dry texture. I HATE IT, but it's better than feeling awful all the time. I am working with my stylist to find some new cuts and maybe some color to make it look the best it can. It's not awful - it's just that I always had thick, shiny hair and now it's just kinda drab. Small price to pay....

Weirdly, I also have been way healthier than ever, despite being on the Mtx. I know it is supposed to suppress your immune system, but it seems to make mine work better. I used to get EVERY SINGLE VIRUS that floated around...and I have not been sick once in the last 18 months. That is downright MIRACULOUS....I have nursed my daughter and husband both through several nasty viruses and never once got sick myself. Go figure! I do get a flu shot every year, but still...I was worried I'd be sick all the time on Mtx, but it hasn't proven to be the case, at least so far. I am grateful and hope it continues that way!

Best of luck....
Title: Re: Sharing Methotrexate Experience
Post by: SjoAmy on October 15, 2013, 11:27:37 AM
I am not sure if the flu shot is a live vaccine.....

People on Methotrexate or Cellcept should NOT receive live vaccines.

Title: Re: Sharing Methotrexate Experience
Post by: Sleepy In Seattle on October 15, 2013, 01:04:42 PM
The shots are killed-virus, the nasal mist is live and you're right - people on Mtx/Cellcept/etc should NOT have it. I always double-check with the nurse just to be sure.  :)
Title: Re: Sharing Methotrexate Experience
Post by: SjoAmy on October 15, 2013, 03:50:16 PM
Ya know when I went to see my PCP, he offered the flu shot to me & I said " You realize people on Mtx shouldn't have live vaccines.". He's learning that I know a little bit  ;)  He said "I won't chance it.  You have an uncanny way of being right.  I'm still gonna check it out tho.". I said " Go ahead and do your homework doc."  ;)

Sometimes you are your only defense.  Knowledge is life giving power.
Title: Re: Sharing Methotrexate Experience
Post by: Chris on October 15, 2013, 04:00:02 PM
I always say....doctors are just humans with a degree!
Title: Re: Sharing Methotrexate Experience
Post by: Nancy60 on October 15, 2013, 06:23:04 PM
People on MTX should not have the Flu Mist but the Flu shot is recommended because of the immunosupression. The shot is a killed virus. Just wanted to clarify for those concerned about being exposed to flu who are immunosuppressed.

Nancy
Title: Re: Sharing Methotrexate Experience
Post by: racheld724 on October 19, 2013, 02:54:52 AM
Thank you everyone for your input.

I made it through week 1.  I am taking the Methotrexate Saturday evenings.  I started to feel a better from the metho by Thursday, and best on Friday. 

...remaining hopeful.
Title: Re: Sharing Methotrexate Experience
Post by: sewandsew on October 21, 2013, 10:59:00 AM
I've been on MTX for a few years with few problems.  When I changed rheumy he added Leucovorin to minimize the side effects.
Title: Re: Sharing Methotrexate Experience
Post by: meow on October 21, 2013, 02:42:20 PM
I take folic acid every day. Is there some reason not to take it on MTX day?
Title: Re: Sharing Methotrexate Experience
Post by: eye2dry on October 21, 2013, 04:55:39 PM
Yes, I was told to take my folic acid everyday/

Did your rheumy tell you why to withhold it on MTX day?

eye2dry
Title: Re: Sharing Methotrexate Experience
Post by: SjoAmy on October 21, 2013, 06:06:40 PM
I take folic acid every day. Is there some reason not to take it on MTX day?



Because folic acid and Mtx are made structurally alike, to the point where they compete for the same place.  As a result Folic Acid decreases Mtx effectiveness.  Yet Folic acid relieves Mtx symptoms.

MTX is labeled as an anti-metabolite and an anti-folate.   Competition with DHFR and MTHFR.

Di Hydro Folate Reductase.       Methyl  Tetra  Hydro  Folate  Reductase.   Enzymes in the body.
Title: Re: Sharing Methotrexate Experience
Post by: Sleepy In Seattle on October 22, 2013, 08:47:26 AM
Every doc is different, of course - but mine said it's okay to take them on the same day, just not together. I take all my vitamins in the morning, and my Mtx at night. Seems to work fine!
Title: Re: Sharing Methotrexate Experience
Post by: harrigan on October 22, 2013, 08:53:40 AM
Flu jabs are safe and advised for anyone with immunosupression - either as a result of illness or treatment for an illness.  I have had one every year since starting methotrexate, with no problems.
Title: Re: Sharing Methotrexate Experience
Post by: meow on October 23, 2013, 02:14:49 PM
Every doc is different, of course - but mine said it's okay to take them on the same day, just not together. I take all my vitamins in the morning, and my Mtx at night. Seems to work fine!

Me too.
Title: Re: Sharing Methotrexate Experience
Post by: SjoAmy on October 23, 2013, 03:31:38 PM
My apologies, I thought this thread was about Methotrexate.

If you guys want to do a vaccine debate....do it on another thread....so those dealing with Methotrexate have somewhere to go.

Anyways, was supposed to go to PT today, and I had MTX last night....and I have had the most profound fatigue that just doesn't want to lose lift.

Every time I want to try to eat, I get the most phenomenal stomach cramps. Makes making something to eat frustrating.  Anybody else on Methotrexate with problems like these?
Title: Re: Sharing Methotrexate Experience
Post by: Nancy60 on October 23, 2013, 05:54:52 PM
SjoAmy,

When I was on the pills, yes. Terrible stomach cramps, nausea and diarrhea. And fatigue for a few days afterwards. I've been on the shots for about 5 weeks and all the GI symptoms have cleared. I'm still somewhat fatigued but its not as bad, and by the 3rd day I actually have some energy, more than I've had in years!  You might want to consider the injections if you're having GI issues. The fatigue didn't really start getting better for me until a couple weeks ago and I started it in July. So it takes some time.

Nancy
Title: Re: Sharing Methotrexate Experience
Post by: racheld724 on October 24, 2013, 04:00:11 AM
I am on week 2 of Methotrexate. 

I have had a sore throat for 3 days and can hardly swallow. Feeling weak and shaky at times.  I do not have a fever, actually my temp is below "my normal- 97.6," down to 96.8.

I know this must be connected to the methotrexate. I do not know if it is a side effect or an infection. 

I contacted my rheumatologist...waiting for a call back. 

Any experience?

I want to be able to say, "These things happen in the beginning of the drug therapy, and I will get the hang of it."  Is this true?
Title: Re: Sharing Methotrexate Experience
Post by: Sleepy In Seattle on October 24, 2013, 08:46:09 AM
It is often the case that side effects go away or are greatly reduced after a couple of months.

I had to split my dose - so I take half of it (7.5mg) on Monday night, and half (7.5mg) on Thursday night. MANY fewer side effects that way, at least for me. You could ask about that possibility.

It could also be that your body was already really depleted of folic acid, so it's hitting you harder. If you're taking supplements for a while, that might help eventually.

Also, are you taking the full dose? My doc had me start at a low dose, then gradually take more and more...I think we started with 10mg/week (total), and built up to 25mg/week. That was a couple of years ago...I have been doing really well so we are trying to reduce it again now (I am down to 15mg/week total and doing well so far).

In the end, some people find that they just CAN'T take the oral form, and they do injections. That is always a possibility.

But yes - two weeks is not long, and it might get a LOT better, if you can tough it out for a while.

Sorry you're having trouble.... :(
Title: Re: Sharing Methotrexate Experience
Post by: SjoAmy on October 24, 2013, 03:19:21 PM
This is odd & interesting.....

I like to have a Monster Energy drink every now and then.....and I noticed something very weird.....I have better days of Mtx endurance when I ingest one....needless to say I've been ingesting more Monster.....I wonder.....Tuesday and Wednesday downright suxed....and had no monster.  Today morning was bad....got much better after I had a monster.  Maybe its all those B vitamins in there.

Anyone else have this interesting phenomenon happen?

Title: Re: Sharing Methotrexate Experience
Post by: Nancy60 on October 24, 2013, 07:42:48 PM
Never tried any of the energy drinks. Just coffee and diet coke, which I've just about given up!  I got where I hated to rely on them for my energy but had to have something to keep going. It was hard getting off of them but I am down to a cup of coffee in the morning only and drink water or herbal tea now.

Nancy
Title: Re: Sharing Methotrexate Experience
Post by: SjoAmy on October 24, 2013, 09:46:03 PM
I am on 5 mg of MTX per week......5 mg in one dose tore up my stomach for 6 hours straight.  So my doc divided the dose.  I take 2.5 on Mon & Tues.  Which is better than before, but Tues & Wed I get tears in my stomach for pains.  Unbearable.  Lasts 2 hours - 3 hours, even with Folic Acid intervention of 4.6 mgs of Folic acid a day.  That's supplement only.......probably higher with my nutrient count.
Title: Re: Sharing Methotrexate Experience
Post by: racheld724 on October 25, 2013, 06:53:41 AM
Sleepy in Seattle,

Thanks.

My horrid sore throat (felt like strep) went away mysteriously.  I guess it was a side effect.  It lasted for 3 days, and poof...gone.  This week has been different from last, it is a weird feeling. This week has gotten to the point where it takes a lot to lift my arms to wash my hair; however my nausea has decreased.  I have no idea what to expect.

I am taking a starting dose of 15mg and 1 mg Folic.  GI issues are not too bad.

Rachel
Title: Re: Sharing Methotrexate Experience
Post by: Carolina on October 25, 2013, 01:11:38 PM
Hi Rachel,

I'm late to this discussion, but I understand how hard this is to accept, adding a new medication like Methotrexate.

If you can tolerate it, it is certainly worth trying.  Many people I know rely on it for a quality of life and relief from suffering and progression of their illnesses.

I do understand the resistance.  I resisted the treatment I'm currently in progress with.  Unfortunately the first two months of treatment produced such difficult side effects that we've had to change the product.

It is interesting to me that while it is the SAME treatment, different manufacturers prepare the treatment slightly differently, and evidently that can make the difference between difficult and increasing side effects and no or tolerable side effects.

I can still feel the resistance to the entire idea of the treatment, somewhere in my mind.  In my case, no because of the nature of the treatment, but because of the horrendous cost of the treatment.

I don't have to pay the cost.  Only about $4,000 of it per year.  I couldn't do it if I had to pay the actual cost since is it $140,000 a year.  And for some reason that number just upsets me.   How can I be taking a treatment (it's a blood product, not a medicine, per se) that is so expensive?

I also am in the process of having my neurologist run tests to determine whether or not neck surgery will help my neurological problems.  I am terrified of that surgery, and very resistant to it.

And yet, we must all change and come to terms with our quality of life issues.

Hugs,  Elaine
Title: Re: Sharing Methotrexate Experience
Post by: lelandlms on October 31, 2013, 08:45:04 AM
After posting two weeks ago about a sudden painful onset of migrating joint pain in both arms, shoulders and hands for 5 days....I went to Rheumy who said it's inflammatory RA. I had had a positive RA factor for many years but until this year did not have any real joint pain. He offered me Methotrexate injections and a chance to think about it but right then and there I decided I needed to start sooner rather than later. Being a nurse I had no qualms about doing the injections esp later knowing that most of the drug is utilized by the body when injected. He also advised Folic acid with B12 which I ordered and started yesterday. I gave myself the second injection yesterday. So far I can't really tell of any side effects, still fatigued to some degree but I have had that since early summer. In addition I still have some Iritis in both eyes and am on Pred Forte four drops a day. Both Rheumy and Ophthamologist feel that the MTX will help clear that up also as I have had it since May. I have to admit I was angry at these darn autoimmune disease for a few days, and now adding another medication, but I am all about quality of life and not suffering when there are meds available which can help. Being in medicine I know side effects can clear after being on meds for awhile and I need to be patient and give it time to work. I am hopeful it will help my joint pain which is mainly in my left shoulder and finger and the fatigue. I appreciated reading all the posts about peoples experiences with MTX today.
Title: Re: Sharing Methotrexate Experience
Post by: racheld724 on November 07, 2013, 03:11:38 AM
Carolina,
Thank you for your straight forward, yet empathetic response. Having support from people who understand is different from support from someone who wants to understand. 

Oh the journey...


Forum,
4th week of the Methotrexate.  My hair is starting to fall out more than usual (clumps in the shower & I can touch my scalp easier).  Thank God I have thick hair to start with!  It's Thursday of week 4, I have definitely been sleeping a lot better, which I never realized that I had issues until actually getting some real rest.  Days are still unpredictable. I take the metho Saturday evening.  Sundays I feel a little sick, Monday's seem to be when it hits me the hardest.  I am hesitant to mention overall improvement being that this is a day-to-day thing...but yesterday I felt well enough to cut the grass!
Title: Re: Sharing Methotrexate Experience
Post by: quietdynamics on November 07, 2013, 03:31:38 AM

racheld724
...You mowed the grass!!! How wonderful. Doesn't it feel great to actually be able to DO something. At least go to bed tired from an activity accomplished...yeah.

I am just so happy for you. PS...it was a rid on mower...wasn't it?

I am not taking Methotrexate...but, my hair has been ...I am going to use the word 'shedding' because that is gentler for me.
I find if after a shower I put it up wet in a sloppy bun..with mousse (no hair blower) it will look fuller...but, I cringe when it is time to comb from shampooing...geesh. And I wear it up so I do not shed on people and places.

Be careful not to overdo, which of course is what I do when I have a really good day.
Easy to give advice...I do not have to take my own...of course neither do you...lol
Title: Re: Sharing Methotrexate Experience
Post by: racheld724 on November 07, 2013, 03:47:10 AM
quietdynamics,

That's exactly what I was telling myself yesterday, "Don't overdue it or you will pay."  And then the voice said, "Even if you do nothing you might pay, so move along."  Oh, how our minds work!
Title: Re: Sharing Methotrexate Experience
Post by: racheld724 on November 24, 2013, 04:21:04 AM
I went to my 6 week initial follow-up after starting 15mg methotrexate.  My doctor and I agreed that there have been some positive changes.  My side effects of the metho have decreased (nausea and fatigue, I'm still losing hair).  However, I have been recovering better from activities that once would have made me fatigue for days.

Now, I am starting a new/maintenance dose, 20mg.  Anyone familiar with experiencing another round of side effects from the metho? 

Side note:
My rheumatologist said that I should get the flu vaccine/pneumonia (injection form).  I think it depends on your current health state and what you and your doctor decide.
Title: Re: Sharing Methotrexate Experience
Post by: Sleepy In Seattle on November 24, 2013, 08:56:23 AM
When my dose moved up, I did get more hair loss but not other problems. For me, once my body got used to it and got over the side effects, it was not a big deal to increase the dose - though we did split it over two days a week instead of one. At one point I was on 25mg/week (down to 15 now).

Taking daily B-complex supplement and also a biotin supplement helped a bit with the hair loss, but it's still kind of lousy. And the texture of my hair has totally changed.  :( Oh well - it's worth it.  :P

I do get a flu shot every year - be sure to get the shot, not the nasal mist. On Mtx, you need killed-virus vaccines, never live-virus.
Title: Re: Sharing Methotrexate Experience
Post by: SjoAmy on November 25, 2013, 11:35:40 PM
http://www.ncbi.nlm.nih.gov/m/pubmed/7612033/ (http://www.ncbi.nlm.nih.gov/m/pubmed/7612033/)

Methotrexate study, resulting in end-stage liver disease.
Title: Re: Sharing Methotrexate Experience
Post by: Sleepy In Seattle on November 26, 2013, 08:31:22 AM
http://www.ncbi.nlm.nih.gov/m/pubmed/7612033/ (http://www.ncbi.nlm.nih.gov/m/pubmed/7612033/)

Methotrexate study, resulting in end-stage liver disease.

This is a study of ONE INDIVIDUAL who also had a rare, genetic disease that affects the lungs and liver, and often results in end-stage liver disease all by itself. Hardly something most of us should be terribly concerned about....and not a good reason to reject Mtx as a viable course of treatment.
Title: Re: Sharing Methotrexate Experience
Post by: LucyD on November 26, 2013, 05:49:08 PM
I am on my second week of methotrexate. I took three 2.5 mg tablets (7.5 mg total) tablets last week (my first week) and I took three 2.5 tablets yesterday. Next week I am supposed to double the dose. I am very worried about side effects too, so I am very grateful to read everyone's post here to learn of people having good results and also possible side effects. Last week I did not notice any side effects, but today I felt pretty lousy - headache, exhausted, nausea, but then that is how I feel a lot with the Sjogren's. And, over half of the people in my office are sick with something right now and I have been sneezing too - so not sure I feel lousy from the MTX or from whatever is "floating" around. The days I don't take the MTX my doctor has me take 1 mg folic acid.

I see my rheumy in 3 more weeks so will ask her about taking the MTX by injections. Does anyone know if it is a lot more expensive to fill it that way?

Like you Rachel, and others who have posted, I was very against the MTX and declined it last time my rheumy suggested it, and still am a little afraid of it but for me it also became a decision of quality of life. I am tired of being so darned tired and my rheumy told me it should make me less tired. And the joint pain and inflammation were getting unbearable some days. I used to be very athletic too, and will try to power through anything.
But, it was time for me to give it a try.

Good luck. Please keep all of us posted on how you do with the methotrexate.
Title: Re: Sharing Methotrexate Experience
Post by: SjoAmy on November 26, 2013, 06:12:20 PM
We are all just "one individual".....especially if our docs don't know anything about Sjogren's yet.

My liver enzymes went sky high.....AST is 360.....ALT is 80.

both are out of range......AST is 10x what it oughta be.

We suspect Methotrexate in that.....but AST is so darn high that we think it is Methotrexate + something else.

Pharmacist told me liver enzymes at those levels are not anything to play with.  She also told me that elevated liver enzymes happen in 15% of Methotrexate users, according to package info.

Good doctors publish articles about rare cases.  You may not have the rare case happen to you....but it is worth knowing just incase it happens to you.   Its happening to me.....and I wish I had been told about this before starting Methotrexate.
Title: Re: Sharing Methotrexate Experience
Post by: LucyD on November 26, 2013, 07:34:48 PM
SjoAmy, I hope your liver enzymes go down. Are they taking you off MTX? My doctor told me that liver damage from MTX is reversible. Good luck.
Title: Re: Sharing Methotrexate Experience
Post by: SjoAmy on November 26, 2013, 09:21:03 PM
Not yet.  He wants to rerun the test in two months, establish a pattern.

Pharmacist said two months could be too late.

Have not gotten my usual URI this year.....that has gotta be Mtx. 
Title: Re: Sharing Methotrexate Experience
Post by: Sleepy In Seattle on November 26, 2013, 09:33:41 PM
Oh I definitely don't mean to imply that nothing weird/rare happens to individuals, believe me - I am one of them! But it's still important to know that the chances of those things are really tiny and shouldn't make you afraid to try and improve your quality of life. In that particular case, you have a better chance of getting hit by a car running your daily errands than you do of having that particular disease. It is more of an anecdote than actual data on methotrexate use.

And of course it is crucial to monitor your liver while on Mtx - it is very hard on the liver, and if you have liver damage from autoimmune disease or undetected hepatitis, or any number of other things, it's critical to catch it early as all those things CAN interact with Mtx usage. I go in for tests every 3 months for just that reason, as I think most of us do.

But the vast majority of people - and there are THOUSANDS of us - using Mtx for rheumatic/AI conditions (including rheumatoid arthritis, psoriasis, Lupus, Sjs, etc) have only minor side effects once we adjust to the drug, and it provides a lot of relief. It's got a lot more history and data than most other similar drugs, which I find comforting.

I know it's a poison - but it's a poison that relieves a lot of suffering for a lot of people. I was terrified of it, and refused to take it, despite my doctor's advice - and went deaf in one ear as a result because the diseases were not being controlled by Plaquenil alone.

Everybody has to make their own choices...but I think sometimes we freak ourselves out about every little rare drug reaction that MIGHT happen: meanwhile FOR SURE these diseases are eating us alive. 
Title: Re: Sharing Methotrexate Experience
Post by: racheld724 on November 27, 2013, 03:46:12 AM
I need a little reassurance.  This has been hard. I have lived a life of pushing through things regardless of what my body tells me.

I was supposed to leave today (4.5hr drive)  for a holiday visit with my mother and brother.  I had everything scheduled and taken care of so I did not have to worry about anything but driving there. There have been winter weather advisories that have caused me to wait until now to make the decision whether or not to make the trip.  Weather is not the best, but should not be hazardous.  HOWEVER, now I feel like I can't go.  Freaking me out. 

The increase in metho has made more fatigued...making me feel more anxious about my day-to-day activity level and abilities. I am going to cancel the trip :(  I feel like I need to spend this holiday time resting and rejuvenating.  I feel guilty because I CAN make the trip; but I don't know if it is best.  The AI disease common mind battle, " Is it all in my head?"  Then I try to reassure myself that the hair loss, bacterial infection, yeast infection, and eye allergies are not in my head...they are here.  I spent last week going to 3 different doctors and the week before 2 doctors.  I could make the trip and feel worse; or I could also stay home and possibly experience the same thing. Ahhhhh! 

The whole spoon theory is playing out.  I might have enough to take my dog hiking; but may not have enough left to do anything else or maybe I will???  I know things will get better, I am just tired of it right now.  Apologizing for my rant.

For those who haven't read my previous posts, the start dose of metho 15mg for 6 weeks was starting to show promise, my rheum just moved me to a maintenance dose 20mg.  So, I am experiencing some initial side effects again. 
Title: Re: Sharing Methotrexate Experience
Post by: SjoAmy on November 27, 2013, 06:49:02 AM
The side effects are a bummer.  My hip is acting up today and really the last place I need to be is in the cold waiting for a bus.  But that is what I gotta do to get the test kit for A1AT then, that is what I am going to try.  I might peeter out half way through tho.
Title: Re: Sharing Methotrexate Experience
Post by: LucyD on November 27, 2013, 06:56:58 AM
Oh Racheld, I can relate and I am so sorry you are struggling with your decision and this illness. I often struggled with trips to visit my daughter in another city about a 4 hour drive away. People who do not understand this illness just do not understand the spoon theory. I have often erred on the side of pushing myself to make the trips and then been so exhausted and out-of-it I didn't really enjoy the trip or even pushing myself through the trips, only to return home completely exhausted and having to spend a week recovering. I recently took a trip (8 hour drive) with my daughter to visit my cousin, and was so tired, I had to take naps while there, telling them to go ahead and enjoy the planned activities only to return home completely wiped out and in pain.

If you are feeling like you can't make the trip and you need the rest, please don't feel guilty for taking care of yourself.

I am still trying to learn how to let myself take care of myself and rest when I need to, despite possibly disappointing others.

Similar to you, I am just starting on methotrexate. You are a little ahead of me. I am in my 2nd week at a low dose of 7.5 mg and am supposed to go up to 15 mg. next week. I felt very lousy the last few days since my 2nd dose of 7.5 (with headache, bad fatigue, upset stomach) and am fearful about upping the next dose. I hate that this is a poison, but will continue to try it in the hope that it will calm down the autoimmune attacks and symptoms and relieve the fatigue eventually. I have to trust my rheumy and I try to remember the what so many others have posted here about how much it has helped them with minimal side effects. This is all so scary.

Let us know what you decide! If you decide not to take the trip - enjoy your rest and know you are taking good care of yourself.
Title: Re: Sharing Methotrexate Experience
Post by: LucyD on November 27, 2013, 07:24:50 AM
Racheld, I am sorry - when re-reading I see that you did decide to cancel your trip. Do NOT feel guilty - enjoy your restful day and taking care of yourself.
Hugs
LucyD
Title: Re: Sharing Methotrexate Experience
Post by: LucyD on November 27, 2013, 07:25:24 AM
SjoAmy, hope your hip feels better.
Title: Re: Sharing Methotrexate Experience
Post by: Sleepy In Seattle on November 27, 2013, 08:27:39 AM
In case it helps you guys who are just starting the Mtx, it probably took me 2-3 months to really see the side effects (fatigue, achiness, etc) go away...but they eventually did, and now I (mostly) have my life back. I never did have stomach problems, though...I know some people switch to injections because of that.
Title: Re: Sharing Methotrexate Experience
Post by: genko_b on November 27, 2013, 09:34:09 AM
Hi folks:

Just checking in about methotrexate use. I have posted this in other threads, but it bears repeating.

Last year I almost died from a reaction to methotrexate, which I had been taking for years. My lungs filled with fluid and it took a while to determine what the problem was. Fortunately I stopped taking the methotrexate and another immunosuppressant as soon as the pneumonia-like symptoms appeared, as I had been taught. Otherwise I might not be here to write this.

My chart now has a huge note on it about the methotrexate reaction. MTX was very helpful in controlling my RA and now I'm feeling the lack of it, but I'd rather have the fatigue and joint issues than not be here at all.

Once we have been dealing with moderate to severe autoimmunity issues for some period of time we become "medically complex," and a real challenge for our doctors. Each of us presents a unique mix of symptoms and sensitivities, and it is important as my one doc always said to treat the patient and not the disease.

I am blessed to have doctors who think out loud in front of me, offer me all my options, and fully involve me in the decision-making. I've learned to have a great deal of respect for how much doctors do not know.

I wish you all the best with the methotrexate - it can work miracles for those it agrees with - and just encourage you to pay attention to what your body is telling you. If you develop any lung congestion at all, stop the MTX (and any other immunosuppressant if an infection is possible), call the doctor, and get it checked out. Most likely it is a cold or something similar, but it is important to confirm that.

Take care,

Genko
Title: Re: Sharing Methotrexate Experience
Post by: LucyD on November 27, 2013, 10:49:34 AM
Thank you Sleepy in Seattle and Genko_b for your feedback on the methotrexate. Sleepy in Seattle, your post gives me hope and Genko_b, yours does too, but good advice to proceed carefully and be alert to side effects/symptoms. I am sorry you experienced such a life-threatening complication from it. I think I am still in the scared and angry stage, having only recently been definitively diagnosed with Sjogren's and my rheumy is still trying to figure out if anything else. Have been on Plaquenil for over a year, and it helped a lot at first, then pain, swelling, redness, fatigue, and other symptoms got much worse. Then I also tell myself that with this diagnosis nothing is really different -- I have felt like heck for many years -- the only difference is that now I know what it is. But I guess that knowing brings fears of what might lie ahead. And also having to accept that I won't be healed if I just eat a little healthier, find the magic supplement, determine what food intolerance is causing all of these problems...
Title: Re: Sharing Methotrexate Experience
Post by: Sleepy In Seattle on November 27, 2013, 04:25:44 PM
I think this is a beast we struggle with for the rest of our lives. It sucks, but most everybody carries SOME kind of burden, and many are worse than ours. I don't know if I will EVER "accept" the diagnosis...  :P
Title: Re: Sharing Methotrexate Experience
Post by: slccom on November 27, 2013, 06:47:30 PM
Racheld, rest. Enjoy. Read a good book. Find a restaurant or buffet open tomorrow. Do NOT feel guilty!

Hugs, Sharon
Title: Re: Sharing Methotrexate Experience
Post by: racheld724 on November 28, 2013, 03:11:27 AM
Thank you everyone for your support.

I ended last night in a full blown anxiety attack.  I should have listened to that little voice saying, "take a chill pill" all day.  But I refused.  I waited until I absolutely had to.
I hope someday I will learn.

Methotrexate users: I just got my 6 week blood work back.  Numbers have not change a whole lot regarding CBC, creatinine, etc. 
I am an extremely clean eater, no processed foods. I did an elimination diet about a year ago, where I found out I can't eat bananas, chicken, eggs, potatoes, milk, and several other things. I eat fresh fruit and vegetables (fiber), onions, garlic, and ginger tea daily and take a high quality supplement of probiotics.  Soon to add Biotin for my hair loss.

Haha, I shouldn't get ahead of myself, just when I think I have control or input with this disease, I am quickly humbled by the unpredictable.

Title: Re: Sharing Methotrexate Experience
Post by: debbie on December 01, 2013, 06:53:21 PM
 Hi Rachel,

Let me share my MTX experience.
I have Lupus SLE, RA and Sjogrens. For years I had every symptom you can imagine, joint pain, muscle pain, my skin hurt, headaches, my lungs were acting up, my lupus brain fog was real bad, my hair was falling out like crazy.  I was a mess and in severe pain.
My rheumy tried everything, but nothing helped UNTIL he gave me MTX.
After taking it for about three months, the pain was tolerable(sp?), the brain fog was pretty much gone, my hairloss STOPPED.
About two months ago I had to stop the MTX, because I also have Autoimmune Hepatitis and my already damaged liver can not tolerate the  MTX anymore.   
Now I am back in awful pain, my hair is falling out again and I can NEVER go back on MTX and not on any other Lupus meds for that matter, because my liver won't let me.
I wish I could put that MTX shot into my thigh right now, because I know in a few weeks I would feel better.
The only thing I can take right now is a two week Medrol regimen, but only when I am in a bad flare.
So if you can, give it a try, it might help you as much as it helped me.

Debbie                                   
Title: Re: Sharing Methotrexate Experience
Post by: racheld724 on January 21, 2014, 04:00:00 AM
Update:

The methotrexate (20mg maintenance dose, 3 months total) has been working.  I can go to bed tired and wake up the next day rested.  As before, I would go to bed tired and wake up even more tired.  I still have to be careful not to overdue it, but it's one of those things where you don't realize how bad you feel until you get a taste of feeling better.

I do try to steer clear of sick people, however I went to my in-laws on Christmas Eve (12 grandkids, and brother/sister-in-laws). Pretty much a house full of loving, but full-of-germs people (Try to say that without sounding harsh, but I have to think about these things).  Long story short, I ended up with the flu.  I could not take the methotrexate until my symptoms subsided for an entire week.  Two weeks, no methotrexate, but I was still feeling okay (other than the flu). 

I took my next dose after returning home from a Florida trip (was the best trip, health-wise than ever before).  I was fine until 4am. Then, I collapsed twice trying to get to the bathroom, before becoming violently ill (vomiting, diarrhea, and dripping sweat). For the rest of the day, I was in bed, sipping electrolyte drinks and eating saltines.  Every time I would get up, I would feel sick again. And I was running a fever (100 degrees).   

I am much better today, still have to be easy with my stomach.  What gives????  This did not happen with my very first dose.  Anyone else experience this?

I do have a rheumatologist appt.  in 2 days.  But I am not sure he will be able to give me an answer.
Title: Re: Sharing Methotrexate Experience
Post by: Sleepy In Seattle on January 21, 2014, 07:56:34 AM
Hmmm...well, I am glad the Mtx is working for you, but sorry you had that experience with it.

When I have had to be off it for a while (virus, whatever...), I do notice an uptick in side effects the first couple of doses back on it, but nothing as bad as what you're experiencing. You may need to start back with a lower dose and work back up to the maintenance dose. I am interested to hear what your doc says. Did you continue to take folic acid while you were off the Mtx?

One change I have made since being on it is that I get my flu shot EVERY YEAR as soon as possible. I doesn't protect me from EVERY virus, of course (I managed to get a flu-like bug this year anyway), but it at least helps protect me from the most common ones.

Also, if I am going to fly, or be in a situation where I KNOW I am being exposed to germs, I may skip or delay a dose of Mtx so my body has a chance to fight off the virus first.

I probably mentioned it before, but I do take my Mtx on two nights a week instead of one... I take 7.5mg on Monday night and 7.5mg on Thursday night (I am only on 15mg right now but was on 25 for a long time, then 20 - now we're trying 15 to see if it's enough). I like that routine because I feel like ti minimizes side effects, keeps me on a more even keel, and doesn't knock my system AS low as the one-dose routine did. Other than the one virus I had this year, I have been MORE healthy on the Mtx than I was before - I seem to get FEWER viruses.

Anyway - just something to think about. Splitting the dose might also be a way to help you ease back onto it after being off for a while. It just doesn't whack you quite so hard that way.

But of course we all do react differently to it...there's no knowing what's best until you try. :(

I hope you feel better soon!!!!
Title: Re: Sharing Methotrexate Experience
Post by: BonusMom on January 22, 2014, 02:32:17 AM
I started MTX  two weeks ago.  My Rheumy's has me titrating up slowly. Currently, I am taking 2 2.5 mg pills every Friday evening. No side effects. I also take 1 mg Folic acid on non-MTX days.

I learned in short order that Prednisone is not for me. I had two courses back to back, was an emotional basket case and ended up with systemic candida. It was awful.
Title: Re: Sharing Methotrexate Experience
Post by: racheld724 on January 22, 2014, 11:34:23 AM
Sleepy in Seattle:

I went to the Rheumy today.  I will be splitting the dose into a.m. and p.m.  Yes, I took took the folic while I was off the methotrexate. 

The next day, I was back to normal...other than severe lack of appetite. But it's coming back.


Thanks!
Title: Re: Sharing Methotrexate Experience
Post by: Carolina on January 22, 2014, 06:04:49 PM
Dearest racheld,

 I haven't put in my two cents again until now because I don't take methotrexate or plaquenil, so I don't really "know" what that's like.

But I DO know what it's like to take something that is supposed to help, only to find that it isn't at all easy.

It takes true grit to deal with our conditions, Rachel.  Oh how we wish we could 'pop a pill' and have instantaneous relief.  Isn't that what happens on the commercials? (Yes they read really fast in a low voice through the 'bad stuff', but hey, that can't happen to me!).

I've had that a few time with an antibiotic, and maybe a headache medication.  Oh, and Salagen worked right away with no problems.

But I've been through the entire adjusting and so forth to many medications, and also had to give up completely on some due to reactions.

The fact that we share the entire process here is so useful to everyone who reads your post.  And look how many joined in, also new to methotrexate.

We KNOW that we are all different, and that each of us will react possibly in a different way to the same medications.

But there is great value in experiencing the journey with other people.  Eventually we will all have to deal with side effects and long processes of trial and error, given that we have chronic conditions.

I saw that Bonus Mom tried Prednisone and had terrible side effects.  Right now I'm taking Medrol, and it is my salvation.  Both are similar steroids......and we each react differently.

This is a journey, as I keep saying.  We simply don't know what it around the bend until we get there.  We didn't choose it.  People who think they 'chose their journey' are just very very lucky in the journey they got, so they don't know it wasn't a choice.

We know.  And we continue.

Thanks for sharing.

Hugs, Elaine



Title: Re: Sharing Methotrexate Experience
Post by: racheld724 on January 23, 2014, 04:18:30 AM
Well said Carolina!


Bonusmom:

Not sure if the methotrexate will work for you, as we are all different.  I wanted to let you know that I started with 6-2.5mg tablets for 6 weeks (started to notice a very slight decrease in fatigue from the AI).  I then was moved to 8-2.5mg for maintenance.  From the start of the Methotrexate Therapy, the day after taking it I would feel slightly hungover (heavy head, slightly weak, nauseous).  Each day following, the side effects decreased in severity and each week they decreased overall.  Only this past week I experienced severe side effects.  But the change I feel in my body outweighs a day of even that severity of side effects.

I am pretty sure the severity may have been due to reintroducing the methotrexate at 20mg after 2-weeks of nothing. That, in combination with the fatigue already present due to the trip and traveling. 

I am learning that when in doubt, call your rheumy AND ask your pharmacist.  Thankfully, I have a great rheumy and easily accessible.  Now, I just have to remind myself to call him with concerns, and stop feeling like a burden. 
Title: Re: Sharing Methotrexate Experience
Post by: angeldancer on January 23, 2014, 11:48:44 AM
Fabulous information.  I believe I am reaching the next level of needing help to control flares.  I want to do more than just survive.  I want to live.
Title: Re: Sharing Methotrexate Experience
Post by: Vegassjorgens on January 23, 2014, 07:08:37 PM
Welcome. I have had to use alternatives because of reactions. Here are some tips that may help you manage your life with this health challenge.

While I am glad that you found us, I do not like it that anyone else should have to deal with this health challenge. I am more frustrated when I see younger people with this illness understanding that there is so little that is being done to help us. I believe that the medical model for Auto Immune disease is wrong. I use alternative therapy because of bad reactions to Plaq and MTX.

Sjogrens: Dry eyes, dry sinuses, dry mouth, dry skin, and dry bum.

You may or may not be faced with other health challenges related to this disease that the doctors do not tell you about. Auto Immune (AI) diseases love to bring their friends. If you have one, eventually you will have more than one.

I like also suggest that people with AI diseases read Spoon Theory on the web. It helps to explain how our lives have changed and helps us understand how we can manage the changes to our lives.
http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

1. Do not Panic: Anxiety can make your symptoms worse. I suggest that you read and practice the exercises in the book Feeling Good by David Burns. The book is on Cognitive Behavior Therapy (CBT). It has information on dealing with depression, grief and other mental health issues that you may face in living and managing this disease.

2. Breathe: For as long as you live always remember to breath. When we are in pain, our muscles go into a splinting action. I know that it is hard but we must remember to breathe through the pain.

3. Meditate: Meditation can help you deal with pain and symptoms. When you can do it for 15 minutes you will be at that stage. Here is a very easy meditation technique that will help you as it has helped me. Find a safe comfortable position and close your eyes. With your eyes closed, look to the top of your forehead. As you breathe in, think I am as you breathe out, think calm. Repeat as needed. Meditation can be as good as sleep.

With Sjogrens we tend to have a lot of infections so wear your polar fleece mumps scarf to bed. This will help your body to fight these infections. This link will help with the gland issues: http://www.chakraforce.com/Tonations.html#228.

Omega3, D3, C, Multivitamin, Probiotics seem to provide general support to our bodies when we are facing AI diseases. I like to add an 8oz glass of carrot juice every day to help my body generate endorphins.

I take what I call the Fabulous Five supplements and I wish I had known about them when I got my first AI disease. They are Alpha or R Lipoic Acid, Acetyl-L-Carnitine, Biotin, PQQ, and Co-Q10. As with any drug or supplement, do your own research and consult with your healthcare professional.

Sip-Swish-Swallow are the three Ss of Sjogrens.
Title: Re: Sharing Methotrexate Experience
Post by: Vegassjorgens on January 23, 2014, 07:13:07 PM
Thank you for sharing this valuable information. Two weeks Back I got diagnosed with sjorgens syndrome. I have terrible symptoms . My whole body feels burning sensations . I never heard about this disease before. I am really shocked and worried. All my life I have been a very healthy person. I am having hard time coping with disease. Reading the info. You provide, may be I will read the book how to cope with it. Thank you so much.
Title: Re: Sharing Methotrexate Experience
Post by: Carolina on January 23, 2014, 07:43:23 PM
Hi Vegassjorgens,

Welcome.  Relax.  It takes some getting used to.  But this is mostly manageable, and here you will find out what you need to know and how to manage things.

It is a shock, for sure.  And to start out with some serious aspects of the Super Symptoms of autoimmune/immune mediated conditions isn't making it easier for you.

There are several medications that can help with the burning sensations.  The sensations are the result of your immune system producing 'things' which irritate you.  This can happen in several parts of our bodies.  You will find help.

Let us know what you are already taking and trying.  Ask lots of questions.  Share your ups and downs.

This isn't fun, we don't choose it, but it is manageable and there is plenty of life and good stuff ahead!

Hugs, and welcome again, Elaine
Title: Re: Sharing Methotrexate Experience
Post by: LucyD on January 25, 2014, 06:49:07 PM
Glad you are doing better on the MTX, Rachel.

When my rheumy first suggested methotrexate, I refused it. Like others who have posted, I was going to tough it out and get better on my own. Ha! At the next visit I was quite a bit worse despite the Plaquenil, and I decided it was a quality of life issue. If the MTX would work for me, it would be wonderful to have less pain, swelling, and fatigue. I started it on November 18, 2013 (7.5 mg for two weeks, then up to 15 mg.) I take 1 gm of folic acid the days I don't take the MTX. So I am now about on week 10 or 11. I actually feel more energetic the day after I take it and for a few days. That is a real plus.

But, I have developed diarrhea and nausea and it is getting worse instead of better. It started about four weeks ago (when I was on about week 7), but I thought it was a flu or stomach bug because I also felt chilled when it began. It is getting old. Of course I keep hoping it will get better. I called my rheumy and she said if one is going to have side effects from the MTX, especially diarrhea and nausea, it usually happens soon after starting the MTX. And there was a nasty stomach bug going around just then, so I decided to keep taking the oral MTX and see how things went. So, I am wondering if I just have a stubborn bug (but do those really last four weeks???), if this is yeast overgrowth in my gut (as my integrative medicine doc thinks it might be) or if the MTX is just slowly making my gut worse. Then I wonder if this is just symptoms of Sjogren's affecting the lining of my stomach and intestines.

Would be grateful for advice. I am thinking it is time to call the rheumy back and ask about trying the injections.
But I hate to give up on the oral MTX just yet.

Food is unappealing but I get hungry and my stomach growls so I eat apple sauce and saltine crackers. Not the best diet. Don't want to even look at salads or vegetables and normally I love those.

For those of you who switched from oral MTX to the injections, what were your symptoms that caused you to switch to the injections. Are the supplies and medicine for the injections more expensive?

In reading the posts here, I didn't know we were supposed to suspend the MTX if we were sick. Is that standard? My rheumy didn't tell me about that.

Thanks all -
Good luck Rachel.
LucyD

Title: Re: Sharing Methotrexate Experience
Post by: Petal on January 25, 2014, 10:05:49 PM
I have read and reread this post and others with great interest

I am starting  Mtx tonight and I feel as if I am giving in to the disease, but I've have had enough.

I'm to take 7.5mg with 3 x folic acid in between for 6 weeks then to increase the dose after blood work

Im quietly confident things will go good

Fingers crossed, Leanne


Title: Re: Sharing Methotrexate Experience
Post by: wifey1 on January 26, 2014, 08:15:38 AM
Racheld, I was just reading and catching up on your methotrexate experiences.  Just wanted to let you know that it's nice to see someone else around my age going through the same things.  I feel very young to be dealing with all of this... (I'm 32)

i've been on MTX (15mg) for about 6 months now.  I'm very sensitive to meds and dosage adjustments, so it's been a long, slow process.  My husband calls it my "methotrexate haze".  I'm typically not very good for about 18hrs after a dose.  The last few weeks, though, have been great.  I have to be careful not to overdo it or the side effects hit again, but as long as I take it easy I've been much better.  I'm also on prednisone right now though for a lung issue...wonder if that's somehow helping?

Honestly, though - at right around the 3 month mark on the MTX, I was able to push my kids on the swings without pain for the first time in a very long time.  Worth it for me!
Title: Re: Sharing Methotrexate Experience
Post by: LucyD on January 26, 2014, 09:25:02 AM
Petal I hope the MTX goes well for you. And Wifey1 I am glad you are doing better on the MTX.

Can anyone on MTX injections share info about the side effects that caused you to switch from oral to injections and are the supplies and MTX more expensive by injection?

This nausea and diarrhea is getting very frustrating.
Thanks.
Title: Re: Sharing Methotrexate Experience
Post by: Sleepy In Seattle on January 26, 2014, 09:38:03 AM
Just a nugget to add to the discussion - at my rheumy visit last week, she upped my folic acid intake from 1g.day to 3g.day - she thinks it might help with brain fog/energy level....I was attributing it to the Lupus/Sjs, but she said it might be from the Mtx - sort of a creeping, longer-term side effect (I have been on it almost 2 years).

I just started the higher dose of folic acid, so I can't say if it works or not yet....we'll see.

I guess we have to constantly adjust, and never give up!