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.
Day 29 on 60 mg pred. I am not complaining, I am so very thankful to finally be on meds for the pm. Just wanted to share (and vent) and let you know how I am feeling.
I am suffering the sinuses too, feel like i am talking thru my ears. I researched the olive leave spray, but due to my high blood pressure (I am on increased meds for it) figured it was not for me. So purchased a homeopathic nasal spray. It helps a little.
My voice is now very shakey, I feel like i sound like a lamb baa baa. Hubby tells me it doesn't sound like that, but that my voice is raised in pitch. I have difficulty getting my mouth/tongue around some words and really have to slow my speech down to get the words out sometimes. Words disappear from my mind and I am unable to think of the word I want to use.
The hardest thing is the breathing. I used to do the belly breathing at yoga. Now can't get the breath down there, almost like the diaphram is not working. Just short. sharp breaths, especially if I try to walk or exert. When resting I do try to breath as deeply as I can, but its nowhere near what I used to do. Guess these are some of the side effects of pred.
This morning I should have gone to the lab for my bloodwork. I could barely make it out of bed. (I actually just went and lay back on my bed) My body was just so weak. With my new found patience I decided that the bloodwork could wait until tomorrow, after all what's another day. (Day 30)..... Today we rest.
Had to share some of this especially after reading some of your posts referencing some of the above. Your posts made me feel not quite so alone with all of this. God bless you and keep you all well.
Love Sonia
I am suffering the sinuses too, feel like i am talking thru my ears. I researched the olive leave spray, but due to my high blood pressure (I am on increased meds for it) figured it was not for me. So purchased a homeopathic nasal spray. It helps a little.
My voice is now very shakey, I feel like i sound like a lamb baa baa. Hubby tells me it doesn't sound like that, but that my voice is raised in pitch. I have difficulty getting my mouth/tongue around some words and really have to slow my speech down to get the words out sometimes. Words disappear from my mind and I am unable to think of the word I want to use.
The hardest thing is the breathing. I used to do the belly breathing at yoga. Now can't get the breath down there, almost like the diaphram is not working. Just short. sharp breaths, especially if I try to walk or exert. When resting I do try to breath as deeply as I can, but its nowhere near what I used to do. Guess these are some of the side effects of pred.
This morning I should have gone to the lab for my bloodwork. I could barely make it out of bed. (I actually just went and lay back on my bed) My body was just so weak. With my new found patience I decided that the bloodwork could wait until tomorrow, after all what's another day. (Day 30)..... Today we rest.
Had to share some of this especially after reading some of your posts referencing some of the above. Your posts made me feel not quite so alone with all of this. God bless you and keep you all well.
Love Sonia
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My 6mo twin DD's are EBF and just started rice cereal on the first. Everything has been going fine except this morning one of them had a diaper rash (lots of redness around her anus). I read this as one of the signs of an allergy. BUT I did just buy a different brand diaper yesterday (which they have used randomly before w/no issues). Do you think its the cereal or the diaper? Im ready to start...
http://www.drugs.com/sfx/prednisone-side-effects.html
Steaming helps the sinuses for me - I stand over a boiling water from a coffee kettle!
Sorry to hear about the shortness of breath and tiredness. We are all so different with our reactions! I was a nervous wreck, couldn't sleep for days! I got Cushing's syndrome with the moon face, weight gain and relocation of body fat to the abdomen. I have ILD so it helped with my breathing!
Hang in there, so proud of you for sticking to it. We have to manage the disease with these meds, but also manage the side effects as well -:)
Be sure to discuss all of your symptoms with the doctor. I hope your sinuses will get better soon. There are so many allergens in the air. The lack of rain may cause allergens to stick around longer this season. Just like Madison, I also steam to open my sinuses. I will also use artificial tears for my dry eyes.
This disease and prednisone has caused dehydration, dry skin, very dry body parts, brittle hair and bones. I take calcium, vitamin D for bones. I use this wonderful prescription rinse for dry mouth called, NeutraSal which restores Ph. You would love the product if you have dry mouth. Your doctor could call 866-963-8881 to get product information. You can read about the product on www.neutrasal.com It works wonders for Sjogren's. I also use a product called, Rephresh, (otc) for the other dried up body part. Prednisone gives me a female infection once every two months. I take acidophilus which helps too. For my hair, I use Wen by Chaz Dean. The Wen product does wonders to add moisture to my brittle hair. I am able to avoid breakage and excessive hair loss with Wen.
Sorry if I sound like a commercial for products. I am glad to share what works well for me. Remember to always discuss any product you want to use with your doctor before using the product. Anyone with allergies must be particularly careful. Good Luck.