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.
But I am feeling a bit nauseous and I really don't want to take because im afraid of being more nausea. I see my rheumy in a few days. I read that some people rather receive the injections of methotraxate,.
I have been taking MTX for at least 6 months. When I first began, I had a lot of tummy trouble...especially diarrhea, I have IBS & Gastroparesis (slow stomach) as well as PM. So, I suspected too much fatty dairy, and I think I was right. I began eating Fat Free dairy (yogurt, milk, cheese), for a month. This helped my stomach accept the MTX better. Then, I moved up to 1%, then 2% on all dairy. Now, I don't have a problem with MTX, but I think I have a general problem with whole dairy, so I stay at 2%.
Hope this helps.
Purr,
=^.,.^=
I don't use the injectable MTX...I have to inject for diabetes, and when I need infusions, so I try pills first. Pill-form MTX works okay for me.
Hugs,
Purr,
=^.,.^=
I wasn't feeling all to well but knew I had to eat something earlier so I grabbed a smoothie and I do feel a bit better. Besides that smoothie I've been cutting off most dairy products but eggs and I drink coconut milk, I'll also have cheese on occasions. but yeah I do have the occasional diarrhea, which doesn't bother me since I am always seem to be constipated ever since i was little and its a nice relief , bleh srry tmi.
I have been taking mtx for a few weeks in January, I had to stop for a bit because my white blood cells were low. I started back up on feb 20th and take 6 pills 2.5mg once a week.
Buttercup Kitty is my cat. She's 13 years old, and looks exactly like this picture. I borrowed this pic, and her name....Rowl.
Just a little fun. Helps me deal with PM when I'm feeling low.
I take folic acid every day. Don't why you shouldn't. I'm told it helps keep my hair from being affected by Prednisone.
Purr,
=^.,.^=
It is a drug that seems to take time to get used too. The side effects have gotten better as time goes by. I do the equivalent of 25 mg by injection. The day after, I give myself a day off. Sometimes I have a neck ache (hurts to hold up my head), sometimes a headache, sometimes nausea. Always food tastes rotten. I have learned to take it easy. It is the day I catch up on my DVR shows or watch movies. I take naps if I am tired (sometimes I sleep most the day). I have found I don't do well standing long so I don't go shopping or things of that nature. And I'm not always the "sharpest tool in the shed" that day but I can certainly participate in conversations. I don't do complex projects though.
I found the best thing for me is to have some hashbrowns before I take my MTX and go to bed. I take my shot and try to be in bed within the next 30 minutes. That way, I sleep through most the ick. For some reason, the hashbrowns are what helps make me feel better the next day. My Oncologist told me it probably helps to have something substantial in my stomach. Mashed potatoes don't to it. Toast doesn't help either. It is just hashbrowns. Over time, I have gotten so I don't eat hashbrowns every Saturday night before my shot but I do make sure I had a large dinner and if it has been too long, I eat something else. Not a salad. Not a piece of fruit. We are talking some hardy carbs to soak up that MTX.
I was told to NOT take my Folic Acid the day after my MTX. One of the ways MTX works is it depleted the Folic Acid from our system. If you are taking a supplement that day, you are really counteracting the effectiveness of the MTX. Not our goal. I only take Folic Acid once a week, usually the day after my shot (Sunday). I take 5 mg all at once and that is it.
I was also told I can shift my MTX dose from time to time. I was told to only move it 1 day per week. I've done that if I am on vacation...or have a big event planned. But it can take some time because 1 day movement a week can be a problem. I try not to change it if I can help it because it isn't something I want to play with. If you are feeling bad today, maybe you could take it tomorrow instead and hopefully you will feel better.
As far as the nausea, I highly recommend the injections. It will help a ton. Until then, don't be afraid to ask for an anti-nausea medication. Before I moved to the injection, I was seriously nauseated for 4-5 days. I would feel better just in time to take another dose! The anti-nausea medications worked for me...but they did make me sleepy which wasn't a good deal for me since I had to work. There might be other anti-nausea medications you could take that wouldn't make you drowsy.
So long message. Let me know if you have any other questions I can answer. I hope you get feeling better soon.
The MTX did give me a headache for the first couple of months, but only the day after I took it. I found if I drink extra water the day I take it and the day after it helped.
I have no side effects anymore. My ck levels have been "normal" (around 160) for two and a half years.
Best of luck to you.
Mare
Mare
I take 1 MG (??) of Folic Acid every afternoon. I'm not saying my dosage is correct. I just was never told not to take it the same day as I take the MTX. I take 6 MTX pills on Sunday night with dinner.
PS: I have to inject insulin 2x thanks to Poly. Plus, I had to have 4 infusions of Rituxan, and 4 infusions of Iron. I'm beginning to feel like a pin tomato. Stick me here...stick me there...Wah...
We all know the feeling of being stuck too much...blood test here, blood test there, here a shot, there a shot, everywhere a shot shot.
I think I'm going bananas...sigh. 1/2 of one for potassium daily.
Switching to Fat-Free dairy helped me get passed the MTX side effects. Took about a week, I think.
Purr,
=^.,.^=