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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My ODD Flare

Krissytin
Krissytin
Or was it a flare?!...My doctors still don't know. I have had a biopsy done for it and they said it could be the planquenil so don't take that anymore. Or it could just be a regular Dermatomyositis flare..cause of flare..we dont know! Lovely. Just lovely.

So I went to a convention during the weekend before Halloween. I was taking one hydroxychloroquine (sub for plaquenil) 200mg twice daily. Been taking this since around March of this year. Wasn't taking prednisone or any other drug besides the higher dose of Birth control they put me on back in September. Friday I was feeling fine, then Friday night rolled around and I broke out in the uh..that area down there. I used menostate to calm the itch but that didn't help.

Then Saturday came and I was still fine besides that one issue that still lingered. Then Sunday was just awful! I felt like I had a high fever, My face was all red(oddly it didn't itch though) My back had a rash that went diagonally across it. I had the same mark on my stomach, my hands had red dots on the palms and dry skin started to peel off. back of hands were red with a deep rash. Fingers itched like crazy, not only did my finger itch but my toes! My Toes were itching so badly too!! Then I got Mouth ulcers they developed Monday morning. my mouth was really swollen. I couldn't talk, it stung to eat or drink.

I did go to the doctors that Monday and she treated me and I went to see the dermatologist the next day, got the mouth wash so that I was able to eat soft foods and drink a bit.

I wished I knew the cause of all this. I was in the sun for about 20 mins average the most on all three days I was at the convention. Not sure if its something in the hotel I was staying at? I don't know, this disease still confuses me!! And its hard to explain to people. Its not like having allergies.

So They have me on Prednisone started with 60mg now I am down to 20mg. I am also taking hydroxyzine and famatodine. Everything has cleared up completly since about 2 weeks ago. So I am doing better. Just ANNOYED Very ANNOYED That I do not know The exact Cause of this darn flare!
trpt1
trpt1
Hi Krissytin. I am sorry to hear of the weird difficulties! I do not think doctors completely know what causes a flare. I know that over time, I have experienced flares when tapering prednisone. I must make sure to take my sparring drugs while tapering, but even that is not a guarantee of no flaring.

I know all too well about down there! I regularly take metronidazole gel for five days, once every two months thanks to the reoccurring bacterial infection caused by our good friend prednisone! I originally thought that I was having yeast and I just used monostat, but it did not go away - it was bacterial not yeast. I just call into the OB/gyn when necessary and run in for a five minute exam. I have the same prednisone infection problem every time.

Infections happen with this disease. Be careful because many infections are medication side effects. I am glad you cleared up and are doing better. I will put in a prayer for you for the flare. Keep us posted.
nanny1611
nanny1611
Sorry to read of all your difficulties, Krissytin, but glad that you seem to be "on the mend." My neuro told me that flares can be triggered by illness, disease, stress, virus, surgery, trauma, etc. Obviously it's quite difficult to stay away from these triggers. After all, we are constantly exposed to germs, and who doesn't have stress, and life often metes out trauma. Somewhere in my research, I even read that myositis patients should avoid toxins, such as those found in normal household cleaners (phosphates, etc.). So I even try using naturals ways to clean as much as possible. I don't think anyone except the Lord knows the cause(s) or triggers of these diseases. So we all just try to do the best we can. Sorry for your ordeal. Here's hoping that you will continue to improve.
deleted_user
deleted_user
Krisstyn, I am so sorry to hear of your flare. It can come out of nowhere and you need to know you are not at fault... You did not do anything to cause this... I am so glad you are feeling better now.
Fight like a warrior my friend.
Sending strength and patience with your self
Happy holidays, Shawna
pluggingon
pluggingon
Krissytin, I couldn't believe my eyes as I was reading your experience. Here's why: November 12 and 13 I had IVIG infusions and when I got home the second evening I began getting very itchy fingers and toes. Next it invaded that area down there. Then from my toes the rash spread up my legs to the knees and also half way up my arms. The itch was incredible! It lasted about a week and the rash is pretty much gone now too. So, to read of your very similar experience was amazing. I was fortunate not to have involvement of the mouth. Seven years ago, when getting chemo for Non-Hodgkins Lymphoma, I developed Mucositis, which was the most painful experience of my life! I'm glad your flare has cleared up! When you find out the cause, please let us know!
Krissytin
Krissytin
@ trpt1; What sparring drugs do you take with Prednisone? I thought Plaquenil was the one I was suppose to be on, and they haven't put me on anything else. Kind of worried. :/

Thats crazy pluggingon, experinced just about the same thing! Isn't so weird?! lol never had I had my toes itch before like that, it was nuts.

I'll keep caution while using cleaners. I think that could be what trigger it from the hotel and their cleaning that and being around 100+ people in a crowded area every day.

Keeping my head high and fighting on! You got nothing on me DM!
trpt1
trpt1
Hi Krissytin. I take Mycophenolate Mofetil which is considered a second line med for DM. The med has worked well for me. I am also on prednisone. I switched to the Mycophenolate after having a bad reaction to MTX.

Plaquenil is commonly used for DM according to the TMA. Your doctor would know the best meds for you. The Myositis Association website is a good place to read up on current meds used for DM, PM and IBM. The site also has good articles on our disease.

I hope you are feeling better. Keep us posted.
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