My Doctor Wants To Put Me On Medrol, Help!

[meganlatebird]

I need advise. I've been seeing a rheumatologist because I tested positive for rheumatoid factor. In the porocess of ruling out other possibilities, my doctor tested me for celiac because I had just started eating wheat again, after two years of being nearly gluten free, and had been experiencing nausea. The celiac panel was negative (which isn't too surprising since I have been nearly gluten free for two years) except for anit-reticulin antibodies which was 1:40. My doctor decided on the basis of the test and the nausea, that I probably have celiac, but that I have RA too! And now she wants me to start on Medrol (a corticosteroid). The counter-inidcations for Medrol advise not to take it if you have inflamation of the intestines. I am hesitant to get started on steroids, since my RA symptoms are mild and most of my symptoms fit celiac better (fatigue, headaches, stiffness, numbness in my hands and arms, nausea, esp. when eating wheat, and indigestion when I eat anything with gluten). My concern is that the steroids could make the celiac worse and also could cause other problems that are worse than the RA symptoms I have--and that the possible celiac problem is being ignored. My doctor said I could try going gluten free but that it is really difficult, and that the steroids might enable me to tolerate gluten anyway. That doesn't seem like good advice to me, since a senstivity to gluten may have triggered the RA symptoms in the first place and could certainly make them worse if I continue to ignore it.

What should I do? Follow my doctors instructions or my own instincts that say the celiac thing should be followed up on before doing anything so drastic as taking steroids?

Thanks,

Meganlatebird

[emeraldskies]

Did it give any specifics about the intestinal inflammation? I looked at a description of the med, and could only find warnings about colitis, which is in a different part of the intestine (the large intestine). Normally, corticosteroids are used to reduce inflammation in the body. Your body makes a natural version of this, cortisol. The main reason I would avoid it is your body tends to lower its production of cortisol if you take a medication containing it. If you stop using that med after taking it a couple of weeks or longer, you will become very exhausted, may have trouble sleeping and coping with stress, and may have increased inflammation as a result. This will eventually be reversed, but it takes awhile. So, my advice would be to only take it if the RA becomes too uncomfortable to bear. Sometimes the doctor doesn't know the situation as well as you know your own body.

[gf4life]

You could go back on the diet and see if it helps. You could always try the medication later if the RA symptoms don't go away on the diet. Then you wouldn't necessarily have inflammation in the intestines, since you wouldn't be eating gluten. Don't take the medication if you feel it will do more harm than good. It isn't like you will die if you don't take the medication, right? Your ultimate goal is to alleviate your symptoms. The diet might be enough to do that, and it is at least worth a shot.

And I have heard the "the diet is really hard to follow" line from doctors before. It is challenging, but not impossible. It is a bit harder to stay gluten free when you eat away from home, but not from lack of trying. Maybe if more doctors would encourage their patients to try the diet for their health, then the food and restaurant industries would make gluten free foods readily available! The law of supply and demand.

[Claire]

I need advise. I've been seeing a rheumatologist because I tested positive for rheumatoid factor. In the porocess of ruling out other possibilities, my doctor tested me for celiac because I had just started eating wheat again, after two years of being nearly gluten free, and had been experiencing nausea. The celiac panel was negative (which isn't too surprising since I have been nearly gluten free for two years) except for anit-reticulin antibodies which was 1:40. My doctor decided on the basis of the test and the nausea, that I probably have celiac, but that I have RA too! And now she wants me to start on Medrol (a corticosteroid). The counter-inidcations for Medrol advise not to take it if you have inflamation of the intestines. I am hesitant to get started on steroids, since my RA symptoms are mild and most of my symptoms fit celiac better (fatigue, headaches, stiffness, numbness in my hands and arms, nausea, esp. when eating wheat, and indigestion when I eat anything with gluten). My concern is that the steroids could make the celiac worse and also could cause other problems that are worse than the RA symptoms I have--and that the possible celiac problem is being ignored. My doctor said I could try going gluten free but that it is really difficult, and that the steroids might enable me to tolerate gluten anyway. That doesn't seem like good advice to me, since a senstivity to gluten may have triggered the RA symptoms in the first place and could certainly make them worse if I continue to ignore it.

What should I do? Follow my doctors instructions or my own instincts that say the celiac thing should be followed up on before doing anything so drastic as taking steroids?

Thanks,

Meganlatebird

<{POST_SNAPBACK}>

I am new here but can't resist a reply to you. Go girl - with your instincts! I am a retired Rehabilitation Therapist and I can tell you that one should take medicine only as the very last resort. Your body is already under attack. Giving it yet something else to respond to is probably not the way to go. If celiac is suspected go gluten free - absolutely. A neurologist told me this week that a single grain of gluten in a petri dish with intestinal mucosa will attack almost immediatley and that attack will continue for days - even weeks. This stuff is poison to a celiac. I went semi gluten free years ago but only to the point where my worse symptoms went away. Big mistake! Recent diagnosis of spinocerebellar ataxia (i.e. damage to the brain) illustrates that the attack by gluten antibodies was still going on because gluten was still present though in small amounts. Gluten FREE is a must. Your RA may well improve in a few months. If your hands are affected do exercises with your hands in warm water. It will help you maintain flexibility. Good luck. Claire

[lbsteenwyk]

Definitely try the diet first! Steroids have some nasty side effects and sometimes they are hard to get off of, too. It doesn't sound as though your symptoms are that bad. I would never take a steroid med unless as a last resort.

[nettiebeads]

I I am hesitant to get started on steroids, since my RA symptoms are mild and most of my symptoms fit celiac better (fatigue, headaches, stiffness, numbness in my hands and arms, nausea, esp. when eating wheat, and indigestion when I eat anything with gluten). My concern is that the steroids could make the celiac worse and also could cause other problems that are worse than the RA symptoms I have--and that the possible celiac problem is being ignored. My doctor said I could try going gluten free but that it is really difficult, and that the steroids might enable me to tolerate gluten anyway. That doesn't seem like good advice to me, since a senstivity to gluten may have triggered the RA symptoms in the first place and could certainly make them worse if I continue to ignore it.

What should I do? Follow my doctors instructions or my own instincts that say the celiac thing should be followed up on before doing anything so drastic as taking steroids?

Thanks,

Meganlatebird

<{POST_SNAPBACK}>

I agree with what others have been advising - diet first. It's not impossible, sometimes it just takes forethought and sometimes some creativity. The fact the the dr. thought the steriods might enable you to tolerate gluten means she really doesn't understand the disease. Let her know you understand her reasoning for the drug, but your research suggests that going gluten free might help to alleviate your problems. Plus excersize. I work in a small office but two of the ladies are RA - one does the prescribed routines and the other one doesn't. Guess which one has more problems? The one who doesn't move her body as she should. I think your concerns and fears are justified - listen to your body and your instincts.

[plantime]

Stick to the diet and do exercises. I have celiac and RA, and I noticed a difference in the inflammation levels when I went glutenfree. Have you used the ibuprofen treatment for mild symptoms? The steroids are not where I would begin for treatment. I don't think the medrol will hurt your small intestine, I took a course of it for an infection about a year ago, and it did not bother my gut at all. It is an option for you, but I suggest starting with the glutenfree diet and exercises.

[meganlatebird]

Wow! Thank you so much for all your responses--and for the encouragment. I really appreciate the encouragment and learning that the diet may help with the RA symptoms is itself encouraginig. I don't think I have ever been completely gluten free because gluten was hidden in some foods I was unaware of--like tamari almonds that were actually made with soy sauce that had wheat in it. It will be interesting to see what happens with the RA symptoms when I've been gluten free for a while. And yes, I don't think my doctor understands celiac disease because she told me that after you have been gluten free for about 6 weeks, you can usually start introducing gluten back in the diet and can tolerate it better .

[nettiebeads]

Wow! Thank you so much for all your responses--and for the encouragment. I really appreciate the encouragment and learning that the diet may help with the RA symptoms is itself encouraginig. I don't think I have ever been completely gluten free because gluten was hidden in some foods I was unaware of--like tamari almonds that were actually made with soy sauce that had wheat in it. It will be interesting to see what happens with the RA symptoms when I've been gluten free for a while. And yes, I don't think my doctor understands celiac disease because she told me that after you have been gluten free for about 6 weeks, you can usually start introducing gluten back in the diet and can tolerate it better .

<{POST_SNAPBACK}>

Doctors usually don't get much training in nutrition and autoimmune disorders that are treated by diet alone. I'm sure in other ways she may be a very good dr. I had an internist tell me I could probably eat wheat again. She was very good at treating my ulcer and such, but I did know better than her regarding the wheat. Glad we could help, let us know if the RA improves. And this is a wonderful forum for support, encouragement and to keep one from feeling so isolated because of celiac disease.

[Susantg3]

Boy where do I begin? A positive RA factor along with symptoms warrents tx to prevent damage to the joints. Once the damage is done, short of sx, the joints are damaged forever. Short blasts of steroids have been used for tx of the inflammatory bowel symptoms and can be quite helpful. Long term use is a concern as you can become steroid dependent, end up with real brittle bones, diabetes could exacerbate, and on and on. there are several medications for RA, all have potential problems, but not doing anything cements in joint damage for good.

Sue G

[meganlatebird]

Susan,

So, you think I should go with the steroids? You seem to be talking from experience. Do you know someone who has experienced joint damage because they didn't do the steroids? I have a friend who went on steroids and ended up with really bad joint damage, while on the steroids. She thinks the steroids made her worse. Given her reaction to steroids, I am scared to take them. The inflammation in my joints has been going on for some time and I don't have any joint damage yet. I am afraid the steroids could change that. Maybe I am overly cautious. I never take meds unless I really need them. I have only taken advil about three times in life, for extreme inflammation, and each time it has worked like a miracle for me. I am afraid that if I start taking stuff when I don't seem to really need it, my positive response to it will be weakened when I really do need it. I know the new protocol with RA is to hit it hard in the beginning, rather than waiting for it to get bad and the damage already done, but I don't know whether that tactic has really proven itself to be effective yet. Do you know anything about that?

Anyway, thanks for your response. After all the nays regarding steroids, it is brave of you to weigh things the other way. I am thankful for feedback and views from whatever direction to help me make the wisest decision.

Meganlatebird