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.
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!
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!
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.
Fight like a warrior my friend.
Sending strength and patience with your self
Happy holidays, Shawna
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!
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.