Sunday, April 10, 2011 desparte asks

Q: methotrexate and RA

Ihave been on mtx for about 9 years, the first 7 on the pill forms and then turned to the injectable due to bad stomach isseus. I am now getting really bad acid reflux and stomach pain again and stopped the mtx for one week it was a litlte better took it last nigth and this am it all started again. I have tried prilosec, nexium, they all give me bad headahces! I also taek enbrel. For the past 2 weeks I have had extreme fagitue, all my joints hurt, my blood work looks okay I am not sure what to do. The dr says maybe switch to remicade, but I want off teh mtx, but I now it works best for the Ra yet i feel so terrible on it, any ideas?

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Answers (2)

V, Health Guide

4/10/11 9:13am

Hello, Desparte,

If it were me, I would tell the rheumatologist exactly how awful the MTX makes you feel. If it is hurting your stomach that badly, I would think it would be time to change meds. I am not a doctor, but I would be surprised if your doctor didn't agree. You don't need any GI problems heaped upon what you have already. So sorry, you are going through all this. Let us know how things go and if you are able to swith meds soon, because what you are taking now does not seem to be doing its job.

Blessings,

desparte

4/10/11 12:39pm

Thank you for your kind words. i do have an appt with the RA doc this coming friday. I have always had problems with teh mtx headache and feeling and stomach issues, I just thoguht that was part of the med and it goes away after 2 days. I took the enbrel and feel somewhat better today, but it will not last, that is why he thought last time maybe switch to remicade, but I Think you ahve to take the mtx with that also so not sure what we will do or even if I will seek a second opinon, i have thryoid issues and interstitial cysitis on top of all of this and going thru menopause so severe hot flashes and headaces alot!! Seems like when it rains it pours, I am a little concerned about my heart alos, seem to have a lot of chest pain but I belive it is from teh acid refulx but am looking at seeing a new dr, for that an internist my family doc has me typed cased, over weight, female menpausol and so na dso on.

Thanks agian,

Becky

Lene Andersen, Health Guide

4/20/11 12:58pm

I was on methotrexate, as well and had to quit because of the stomach issues, so I know how you feel.However, the thing about methotrexate is that you have to taper off it very, very gradually, because it's quite common to experience a severe flare if you quit cold turkey.

I have a couple of suggestions for you. First, check out my post on managing side effects for tips on managing the stomach problems. Something that has helped me tremendously is acidophilus (i.e., probiotic). Get the good stuff from the health food store, keep it in the fridge, take a capsule once or twice a day with meals and it might help. I would also recommend that you try a stomach medication that isn't quite as strong as Nexium, e.g., Pantoloc. I have been on that for years, but due to strong side effects, I cut them in half and take them every 12 hours instead of once a day. It's kind of unorthodox and I've been told that I shouldn't cut them in half, but it works for me with much less side effects.

In terms of the chest pain, you should definitely get it checked out. Given how bad your indigestion and acid reflux is, you're probably right that it is a digestive issue, but you should never ignore something that could be a cardiac symptom. RA comes with a higher risk of heart disease and stroke, so it's a good idea to be extra vigilant.

good luck! Please keep us posted on your progres?

desparte

4/20/11 2:58pm

Thanks for the response, I have seen in about my heart and it is good, I do take probictics a very good and strong one. I take folic acid now too.

Right now i am on a short dose of a medrol pack, my knee got so bad I could not bend it, I am not sure what that was from but I was on my feet for 12 hours straight.

I see the dr next Tuesday, for the Ra stuff and will talk to him, I was not aware that it casue muscle pain and tight tendons, it has been very bad and I have never been told that RA could cause this.

I am still thinking of remicade but want to make srue all my symptoms are from teh Ra and not somehting else.

My achillies and chins are terrible, makes it hard to do anything, adn my neck is bad but he says that is the degentertive arthrtiis,

It is very hard mentally hard on me and I am afraid I am starting to get very depressed, I have now also been on low doese thryoid but they say the level now for that is optimal so who knows.

I Just want a day once a year where I do not feel pain, and I want my active life I use to have back.

Thanks

Becky

Lene Andersen, Health Guide

4/21/11 7:19pm

it sounds to me as if methotrexate is not suppressing your RA. I had the same sort of experience with methotrexate, not just in terms of the stomach upset, but also that it wasn't doing enough. I then started Enbrel and got my life back. The pain was reduced significantly and this allowed me to build my life again.

you mentioned that you are on both Enbrel and methotrexate - is Enbrel alone not enough? If that is so, switching to another biologic may help you. You may want to consider talking to your rheumatologist about your options in terms of self injection vs. infusion. I started on Enbrel induces side effects, had to switch to Humira, which is also self injection. It depends on what works best for you - some people prefer self rejection even though it means taking the drug more often, whereas others prefer going to an infusion center every six weeks and getting it over with in one fell swoop.

Good luck! Please keep us posted?

desparte

4/21/11 10:16pm

THe mtx works good for me but the side effects are too much, If i could take 17.5 or 20 I think that would be great, the enbrel by itself was not enough, I am wondering if some of my pain is also the fibro. Tonight my shoulder is burning it has been bad for a long time, as well as m y neck but he says that is not RA and my hips i get bursitis and cortsione shots and he says that is not the ra, so who knows. the fatigue and my feet are I have really bad erosins on my feet. What is really weird is that my blood work always says normal sed rate as well as c-reacitve protien.

I did have the anti-ccp test and it came back very very high as well as the rf factor and a few other things, so back to the dr again, just don't know what to do it is very hard to make up all the decisons he just ask me what do you want to do?

So not sure.

I still do stuff but it is hard so we will see

thanks

becky

Lene Andersen, Health Guide

4/22/11 11:46am

the Anti-CCP test is a more reliable indicator of RA then some of the other blood test, so it sounds to me as if you definitely have it. That said, fibro can be a complicating factor and sometimes, it can be hard to figure out what is RA pain and what is fibro pain, but you'll learn to tell the difference. I have both RA and fibro and in my experience, fibro is better once your RA is on the control. If your doctor believes your RA is under control - i.e., no swollen joints, etc. - then it's possible that the majority of your pain is from your fibromyalgia. Talk to your rheumatologist about getting a prescription for Lyrica and possibly one of the antidepressants that is used for fibromyalgia (e.g., Cymbalta) to see if that improves matters.

Still, you have to make a decision regarding the treatment for your RA and I actually like that your doctor's asking you to make that decision because you are the appropriate person to do so. It's your body and your life, after all. Has he given you all the information you need in order to make the decision? If not, go back with a list of questions and ask about pros and cons of different types of treatment. You mentioned that you think you would be doing better on a lower dose of methotrexate and it's definitely an option, but would Enbrel and a lower dose of methotrexate control your RA sufficiently to protect you against further erosion in your joints? That's a question for your rheumatologist, but given that one of your joints went nuts and you needed Medrol to deal with that indicates that it may be time for you to switch medications. It happens - your body develops a tolerance to a medication or decides it doesn't want to respond the same way.the good news is, as I think I mentioned earlier, that there are a number of different choices among the Biologics. It might be a good idea to try another one. Is there anything in particular that worries you about switching meds?

desparte

4/22/11 12:31pm

Hello,

I have tried a lower does of mtx and enbrel and No it wa snot enough but I do not like the side effects of the mtx my stomach is bad from it, but lately i have increased the folic acid in hopes that might help.

My dr is good but I just don't know what i want to do, I want the best meds with the least side effects but who doesn't. part of my problem is excepting that I do have this issuse nad it is okay not to be able to do all I use to but I miss the active life I once had.

I took the enbrel last night and the leg muscles started worse so maybe that is realtead I do not k now. I have dealt with bad achilles tendons and the tendons in teh front of my foot and severe muscle and chin aches and have been told this is nothing to do with teh ra, the hip buristis I have been taking once in a while cortsione shots but also told this is not ra so it makes me wonder what i need.

since I took the short course of prednisone I have felt soem better as far as fatigue, I have been having really bad headahces and pressure and no one can find that. after reading about fibro I sound more like that, so not sure although the ccp test on my was very high up int he 500's. i have very bad neck pain which he said is degenterative not RA and it is like well we don't do much for it, but the prednisone helped that so much. all back now that i am off the med though.

I guess I know I need to do something more just not sure what and he never really knows the answer just keeps telling me that my hip pain, achiles, pain an dall that is not ra and changes meds will not help me, and then says well want do oyu want to do. Good giref I do not know. I have an appt for another opinon but not tell the end of May.

I see my a thryoid speicalist next week as they have me on teh lowest dose of thryoid and the blood test says it is perfect now.

I never understood why don't I have a high sed rate, never had that not even when i was not on meds, and the only joint I ever see swollen in my left big toe that is how it started out and my right thumb

Who knows, sorry for so many long remarks

I appreicate any advice and encouragement.

Becky

Lene Andersen, Health Guide

4/22/11 7:19pm

One of the reasons I switched from Enbrel to Humira was that Enbrel gave me horrible muscle pain. It aggravated my fibromyalgia so much that I was in completely unreasonable pain levels. One of Humira's side effect is "warmth," it sort heats you up from the inside which is excellent when you have fibromyalgia. I do get some muscle pain with Humira for a couple of days after my shot, but because I get it further apart than Enbrel, it simmers down again pretty quickly. You may be experiencing the same thing, which means switching to another medication could improve your quality of life.

I'm not quite sure how your doctor is telling the difference between degenerative arthritis in your neck versus possible damage from RA in your neck, but then again, I'm not a doctor. You may want to try getting a stiff collar that can help support your neck and thereby reduce pain. I'd also suggest that you ask for a referral to a physical therapist who might be able to help you get some relief with various treatments and who can also recommend a specific collar that can give you the best support. Heat is also good for sore necks and try to avoid bending your neck too much when you read, etc.

I'm glad you're getting a second opinion - it sounds as if you can maybe benefit for another pair of eyes. I wouldn't get too hung up on the blood test, if I were you - a good rheumatologist will make a diagnosis based on medical history and physical exam and use blood test as more confirming test than anything else. They may even make a diagnosis of RA in absence of blood tests.

I understand that you're having trouble accepting a diagnosis - it's hard to wrap your head around being diagnosed with a chronic illness. I do think that you are perhaps caught in a bit of "paralysis by analysis," thinking so much about everything that you haven't reached a point where you can actively do something about the problem. There comes a time where you have to jump in the deep end and hope for the best and given the fact that you already have joint damage, is essential that you get the treatment that can control your disease so you don't risk any more damage. Given the muscle pain you seem to get from Enbrel, you may want to consider trying Humira - it's not certain that you will have the same result that I did, but it's worth a shot. This way, you're treating your disease while you try to find acceptance.

desparte

4/22/11 8:40pm

Lene,

thank you again for your responses, it has been quite a day, I saw the foot dr who said I had too many issues and he can't tell if the new orthdics the other person made are right are not, but he did say he thinks my problems are the ra and not the fact that I have tight muslces, he also said my calf muscles are very very tight they measure so sort that it was almost a srugery to lenghten them.

I will ask about humria, I am not sure the muscle aches are from enbrel just seems weird for 7 years it didn't do that, but ya never know.

My lower back is bad and I know that is not ra so who knows. I do beleive like you said i am over thinking! i am tired of it all, I never erally thought much about fibro so we will see.

I guess I just want a quick fix an I know how bad meds are with me I react to EVERYTHING with bad reactions so we will see.

It helps to talk to someone that is for sure, I always here well you look great! I don't have the destoryed fingers or toes but the xrays show erosions that happend beofre I started all my meds trying to get diangosed and it also showed a little bit more but not much, so we will see.

I have lots of appts next week so we will see, I am interetesed in what the thryoid guys says as well as the ra dr and I also see an interneist next week for blood pressrue and headhaces, one of these days I am positive a break will come and I will look back on this and think good grief!!

I can't thank you again for all your information and time you have taken to respond to me, it helps.

have a wonderful easter weekend

Becky

Lene Andersen, Health Guide

4/25/11 11:02am

I hope all your appointments will succeed in getting you some answers. Please let us know how things go?