Author Topic: Sharing Methotrexate Experience  (Read 18811 times)

Sleepy In Seattle

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Re: Sharing Methotrexate Experience
« Reply #45 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. 
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

racheld724

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Re: Sharing Methotrexate Experience
« Reply #46 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. 

SjoAmy

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Re: Sharing Methotrexate Experience
« Reply #47 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.

LucyD

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Re: Sharing Methotrexate Experience
« Reply #48 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.
Dxs: Sjogren's - seronegative, UCTD, soft tissue joint pain, Hypothyroidism
Medications: Plaquenil 400 mg/day, Restasis, Synthroid, Cytomel, Celexa, Deplin (L-methylfolate) (for MTHFR genetic defect)
Age: 65

LucyD

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Re: Sharing Methotrexate Experience
« Reply #49 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
Dxs: Sjogren's - seronegative, UCTD, soft tissue joint pain, Hypothyroidism
Medications: Plaquenil 400 mg/day, Restasis, Synthroid, Cytomel, Celexa, Deplin (L-methylfolate) (for MTHFR genetic defect)
Age: 65

LucyD

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Re: Sharing Methotrexate Experience
« Reply #50 on: November 27, 2013, 07:25:24 AM »
SjoAmy, hope your hip feels better.
Dxs: Sjogren's - seronegative, UCTD, soft tissue joint pain, Hypothyroidism
Medications: Plaquenil 400 mg/day, Restasis, Synthroid, Cytomel, Celexa, Deplin (L-methylfolate) (for MTHFR genetic defect)
Age: 65

Sleepy In Seattle

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Re: Sharing Methotrexate Experience
« Reply #51 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.
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

genko_b

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Re: Sharing Methotrexate Experience
« Reply #52 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

LucyD

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Re: Sharing Methotrexate Experience
« Reply #53 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...
Dxs: Sjogren's - seronegative, UCTD, soft tissue joint pain, Hypothyroidism
Medications: Plaquenil 400 mg/day, Restasis, Synthroid, Cytomel, Celexa, Deplin (L-methylfolate) (for MTHFR genetic defect)
Age: 65

Sleepy In Seattle

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Re: Sharing Methotrexate Experience
« Reply #54 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
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

slccom

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Re: Sharing Methotrexate Experience
« Reply #55 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

racheld724

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Re: Sharing Methotrexate Experience
« Reply #56 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.


debbie

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Re: Sharing Methotrexate Experience
« Reply #57 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                                   

racheld724

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Re: Sharing Methotrexate Experience
« Reply #58 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.

Sleepy In Seattle

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Re: Sharing Methotrexate Experience
« Reply #59 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!!!!
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