Author Topic: Sharing Methotrexate Experience  (Read 17730 times)

racheld724

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Sharing Methotrexate Experience
« 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.

Joe S.

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Re: Sharing Methotrexate Experience
« Reply #1 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.
bkn C4 & C5, herniation's 7 n, 5 t, 4 l, Nerve Damage
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SjoAmy

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Re: Sharing Methotrexate Experience
« Reply #2 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.

Nancy60

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Re: Sharing Methotrexate Experience
« Reply #3 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

CMNK12

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Re: Sharing Methotrexate Experience
« Reply #4 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

Chris

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Re: Sharing Methotrexate Experience
« Reply #5 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
47 year old mom of two. Sjogrens, Hashimotos,small fiber neuropathy, neurogenic atrophy(myocitis)
Armour, methotrexate, plaquenil, folic acid,
Vit D3',Claritin, ,Ivig, Rituxin

Tharrell

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Re: Sharing Methotrexate Experience
« Reply #6 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!
MCTD, sjogren's,dRTA,CVID, sero neg. ra,achalasia,Morvan’s syndrome,familial dysautonomia,POTS, MCI, IC. Occular neuromyotonia migraines,raynauds,B6,Florinef, propanolol,sodium bicarb, plaquenil,requip,B2,topiramate, synthroid,diazepam,trulance,enbrel,cevimeline,
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eye2dry

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Re: Sharing Methotrexate Experience
« Reply #7 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
medications: synthroid- Cymbalta- plaquenil- lots of supplements

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Ark mom

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Re: Sharing Methotrexate Experience
« Reply #8 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. 

41 yo with Sjogren's (sero-neg), FMS & sub-clinical Graves; Plaquenil, Evoxac, prednisone, Restasis, Cellcept, gabapentin, duloxetine

irish

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Re: Sharing Methotrexate Experience
« Reply #9 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

Sleepy In Seattle

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Re: Sharing Methotrexate Experience
« Reply #10 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....
Sjogren's, Lupus, Raynaud's, APS
Fatigue, Brain Fog, Autoimmune Hearing Loss, joint/muscle pain, dry mouth, clots in retina, etc
GF, "semi-Paleo" diet, Supplements, Plaquenil 400mg/day, Aspirin 325mg/day (for APS), Methotrexate 7mg/2x per week, Prednisone 3.5mg/day

SjoAmy

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Re: Sharing Methotrexate Experience
« Reply #11 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.


Sleepy In Seattle

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Re: Sharing Methotrexate Experience
« Reply #12 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.  :)
Sjogren's, Lupus, Raynaud's, APS
Fatigue, Brain Fog, Autoimmune Hearing Loss, joint/muscle pain, dry mouth, clots in retina, etc
GF, "semi-Paleo" diet, Supplements, Plaquenil 400mg/day, Aspirin 325mg/day (for APS), Methotrexate 7mg/2x per week, Prednisone 3.5mg/day

SjoAmy

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Re: Sharing Methotrexate Experience
« Reply #13 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.

Chris

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Re: Sharing Methotrexate Experience
« Reply #14 on: October 15, 2013, 04:00:02 PM »
I always say....doctors are just humans with a degree!
47 year old mom of two. Sjogrens, Hashimotos,small fiber neuropathy, neurogenic atrophy(myocitis)
Armour, methotrexate, plaquenil, folic acid,
Vit D3',Claritin, ,Ivig, Rituxin