Polymyositis & Dermatomyositis Support Group

Polymyositis (PM) is a type of chronic inflammation of the muscles (inflammatory myopathy) related to dermatomyositis and inclusion body myositis. The inflammation is predominantly of the endomysium in polymyositis, whereas dermatomyositis is characterized by primarily perimysial inflammation.

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angie1026 10/01/2011

I'm in a real funk and cant seem to get out of it. I was in the E.R. on Thursday night with horrible stomach pains. I gave them the low down on my condition and that my GP thinks I have gastritis from the steroid I'm on. We are trying to ween me off the steroid but obviously that has to be done slowly. I'm on 8 mg of Medrol now and I'm supposed to go in to get labwork in two weeks to see how my CK numbers look on the lower dose. It is just tearing my stomach apart. My GP also thinks I'm developing an ulcer from it. The only way to stop it is is to stop the steroid which we are trying to do but that takes time and is dependent on how my body handles that. Anyway, they did an ultrasound of my gallbladder, liver, and pancreas and that all looked good. They diagnosed extreme gastritis, changed me from Nexium to Protonix, and sent me home. Never did a stomach CT or anything related to my stomach. ??? Thanks guys..

So on top of the pain I still have from the DM I am having horrible GI issues. I'm schedule to see a GI doc on Oct. 14.

I see my rheum on Tuesday when we will discuss starting Methotrexate. I saw my dermatologist last week and he thinks I need to start that asap. He thinks I will do better all the way around on that. I really want to discuss doing the shots with my rheum because I just can not handle anymore stomach issues right now. I'm scared to death of how the mtx is gonna affect me. Side effect wise.

It just seems like the problems are compounding right now and will get worse before they get better. I'm just so depressed. I know there are people out there a lot worse off than me and I shouldnt complain but I'm just so tired and I'm only a about 6 weeks into all this. How am I going to do this????

brendacaytonwhite 10/01/2011

i have been wondering about the stomach issues also. At first I was in so much pain that I thought there had to be something wrong and I brought it up to my Neurologist who has me on the Prednisone and to my primary and they both said that it is normal. Now my stomach only bothers me when I have eaten something, no matter how small. It feels as if it is churning it along my intestines or stomach. It is so weird. I do suffer with gas 24/7 which in itself is embarrassing since I can't control when it decides to release itself. I take Metimucil each morning, which may be contributing to the gas. I have also developed a problem eating garlic. It now causes me to have heartburn, so I will be avoiding that.

I do believe that the stomach pain is due to the steroid though since my stomach also has become enlarge to the size of a 6 month pregnant woman. I still prefer the steroids though because they are helping so many other things.

I do hope that you feel better and you many be able to relieve some of your discomfort with no fashion stomach remedies. I have gone back to baking soda in water for the heartburn and gas and it has helped. Gas X is a joke. It never helps me.

deleted_user 10/01/2011

Angie, I'm so sorry you are feeling so yucky. I have had gastro problems for the past year and think it is from this disease, 6 months of constipation and bloat and pain then 6 months of diarrhea and bloat, and pain I can't decide what's worse. When my rheumatologist talked about methotrexate pills or injections I was concerned about taking the pills for two reasons, first I thought I may not absorb it well because I had diarrhea all the time, I felt I wasn't even absorbing any nutrients from the food I ate. Also, I had such intestinal distress from just eating I didn't want to add a medicine that might add to it. So, we went with injections to start and I feel good about that choice. He said most people seem to move from the pills to the injections anyway. Do you know with all of this no one has even suggested checking out my digestive problems, one dr checked me for parasites because I asked her to. My digestive issues have gotten better (not completely gone but better) since I've been on medication. I hope you get some relief soon! Hang in there!
Love and Light,
Maruska

lexisgirl 10/01/2011

I'm sorry you are feeling lousy. I agree that a Prednisone taper has to be slow but when you are having serious side effects, you need to step it up....regardless of you CK level. That means your DM might be miserable until you can find something else that will work. The bad news is I believe most replacements take several weeks to kick in. If I were in your shoes, I would ask him what the taper would be if you were having a severe allergic reaction to the Prednisone and that is the taper you want. Because if you are in the ER, it is clear it is causing you a side effect that isn't okay.

That said, Methotrexate has done the trick for me. Before I got PM, I did have reflux so I was already on Protonix. When I started all the meds, we had to adjust my medication. I found name brand worked better for me than generic. I am not sure why. I have settled on Nexium now and it works like a charm. Not to say I still don't have problems when I eat wrong though. And I would go straight to the MTX injection. The pills will probably wreck havoc with your stomach. At first, I was nervous about giving myself shot but it isn't a big deal at all. Make sure you get 30 gauge needles. They are teenie tiny. Most time time, I don't even feel it.

I do hope your doctor is able to help you Tuesday. As we all are figuring out, we have to be in control of our medical care. Sometimes doctors need a little help understanding what we are feeling and what we need. Demand a quick taper and get on another drug pronto!

angie1026 10/01/2011

Good point about asking my rheum what he would be doing if i was having a severe allergic reaction to the steroid. I dont want to do anything stupid but at the same time, my stomach issues are just getting worse and worse. My GP is worried that I have an ulcer and if the problem continues it could perforate which would not be good at all. I never felt like the steroid did much for my pain but it did bring my CK levels back down to normal range. I guess I cant say it didnt help the painat all but not a whole lot. The pain seems to be worsening as I taper so maybe it was helping more than I realized but I just cant take it anymore. That is why my derm thinks I need to get on Methotrexate asap. He thinks it will help with my pain more. Does Mtx also help with the CK levels? I wasnt sure about that.

I'm definitely going to push for the quick taper (as safely as possible obviously) and for the injectable Mtx. I have heard some docs only do the injectable for higher doses and I think my doc likes to start off at 10 mg and go from there. Does anyone know if I can do the injectable Methotrexate at 10 mg?

Thanks everyone. :)

deleted_user 10/01/2011

I started at 15mg Angie. I don't know if they do it for 10mg. I am on 25 mg now.

La7de 10/01/2011

Hi Angie,
I'm sorry you are feeling so lousy and I understand being fed up with it. Prevacid is the stomach med that worked best for me, but it's expensive so I quit it and am just on Zantac (ranitidine) now and I have no stomach pain. When I was on the MTX pills I did have a lot of nausea for 2 days each week, but now that I am on the injectable I have no side effects! Hang in there Sweetie, it will get better. Sending prayers.
Hugs,
Lauren

nanny1611 10/01/2011

I'm so soory to hear of your current difficulties, Angie. I will pray and ask the Lord to give the doctors the wisdom they need to treat your situation. Here's hoping that you will be feeling better soon. Best wishes to you.

lexisgirl 10/01/2011

I didn't start the injections until 17.5 mg. I was trying to be "brave" and deal with the pills. They work you up slowly in your dose so you don't have as many side effects. If you start on 10 mg, it probably won't be long before you are on a full dose of 25 mg. It looks me a few months. I didn't know the MTX taking down my CK until I was at 25 mg for about 6 weeks.

deleted_user 10/02/2011

I have never been on steroids but still have some type of gastric distress everyday....I've had all of the diagnostic testing but all showed normal...I discussed with my GI about the PM, who said that if is muscular (PM), there is nothing we can do..(?)...I'm always feel bloated with abdominal distention...I think some of it is due to the fact that my lumbar muscles no longer support what little abdominal muscles I have....

eddiesgal 10/03/2011

Angie, I've used Prilodic

Angie, I am so sorry you're feel so poorly and hope that the doctors can find something to take away a lot of the discomfort. I take Prevacid and lot of Tums for stomach distress. Sometimes they work wonderfully and others, no so much:(
Blessings,
Kim

me3mae 10/03/2011

Do you take zantac or anything like that? When I started with prednisone I also took zantac and it helped with some tummy stuff.
I don't think I've had any big probs on mtx pills. My mom took the shots for a different illness. Folic acid will help you keep your hair from falling out. For me the hair loss of mtx was the last straw and I went a bit crazy and felt horrible. I could deal with the aches, pains, the temporary wheelchair and handicap sticker, but hair loss was a step to far. Slowly I came to see it wasn't the end of the world...my mom kept saying no one could see it.... but i never did quite beleive her. Good luck.

angie1026 10/03/2011

I started taking Zantac about 3 weeks or so ago. That didnt help much so my doc switched me to Nexium. That seemed to help for a few days then it was back to business as usual with my stomach issues. The doctor in the e.r. switched me to Protonix. As long as I eat bland foods and dont eat too much the pain is tolerable. Will see what the rheumatologist has to say tomorrow. I'm really gonna push for the Mtx injection. I dont see why he should care. I'm the one that has to take it. I just cant handle one more thing causing me stomach isues. My GP thinks I probably have an ulcer and he is concerned about it becoming perforated if we dont get these stomach issues under control. I'm scheduled with a GI doc on the 14th. I also have a big problem with constipation right now. Ugh...

eddiesgal 10/03/2011

Sorry about the computer once again having a mind of its own:)
Blessings,
Kim

deleted_user 10/04/2011

Angie- try taking Pro-Biotics! It has helped me soooo much and it is all natural! I take it 3 times a day. With all the drug crap we are putting into our bodies it is great to go all natural and balance everything out. Iuse a brand called "Raw Pro-Biotics"..remember they have to be refrigerated tho!

deleted_user 10/04/2011

stomache pains all the time,i thought it was the prednisone,then i got down to 5mg.and still the pain,methotrxate injections, and placquinil,terrible stomache pains,then my dr. increased the prednisone,to 30 for my rash and my pains went away and so did most of the heartburn,so im thinking its the disease not the meds

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