Was wondering if other people have this horrible Dermatomyositis with Panniculitis disease. I was told it was very rare to have both of them together. Doc wants me to do ivig treatments. How do these treatments work.
Hi, I’m sorry I just saw this. I’ve never heard if Panniculitis…
I have had IVIG treatments. Basically the ivig Is infused while you relax for a few hours (normally between 6-8) each treatment day. You can bring snacks and things to keep you busy. I don’t remember how many they give in a certain period, I think it was two days in a row then a few weeks break. But it’s been a while.
It seems to help many people.
Positive thoughts coming your way!
I have polymyositis with psoriasis I have Panniculitus on one foots toe nails, clearing up with psoriasis cream, takes a long time it kinda looks like I have French manicure
I’ve never heard of panniculitis. I’ve had IVIG. You need to do some research and read up on it. Be a very informed patient. It can really help some people but not others. It’s also vey expensive and time consuming. Some insurance allows for home infusion-with a nurse. That lowers your risk of infection from being in a hospital or clinic setting. You need to drink lots and lots of water for several days before and a week after. You also need to drink water throughout the infusion…you will not be getting hydrated through your iv. You need pre treatment of Benadryl. If you get a headache you need to inform the nurse ASAP. Some get asceptic meningitis from it. This doesn’t mean it doesn’t work for you or that your dr should give up. There are different brands and some work for one and not another. You, yourself, need to write down the brand. One can also be pretreated with periactine. The Myositis Association website is a great resource. IVIG is not a medication…it is a blood product. That is very important to know.
Thank you so much for responding. My first treatment is June 9th for 4 days then again in 6 weeks. My doctor is in Pittsburgh, Pa and I live in Morgantown, WV.
My husbands insurance will only pay for me to go to Pittsburgh, however it will pay for Morgantown if a doctor there will rewrite the script. They sent me to Pittsburgh because they treated me for what they thought I had and the meds was not agreeing with me. My home docs was on target except for not finding the polyarthritis and now had tested positive for p155/140, this is the reason for the IVIG treatments.
As far as the panniculitis goes, it is inflammation in my fat cells. Which caused my muscles to atrophy andhad severe body weight loss. In 6 months time I went from 214 lbs to 120lbs. I looked like a skeleton. With me being persistant to find answers and a very caring pcp and dermatologist and sending me to Pittsburgh to a specialist that deals with my dx's things have gotten better. In the mean time the stomach biopsy took 6 months to heal and 4 days later I rolled over in bed and one of hard lesions from the panniculitis bursted and is still healing from last September 2013. It it was so deep I could see my fat cells and had to doctor this myself everyday. Took lots of antibiotics, ointments, bandages, not bending over, hard to wear clothes, plus the nodules have hardened and calicified and made it hard for me to move my arms. Many doc appointments every 2 weeks. The panniculitis is a complication of the dermatomyositis. I also have fibromyalgia, Elhers -Danlos , inflammatory polyarthritis, osteoarthritis and many other chronic illness's.
Thank God the open wound is almost healed. But the best part is having a loving God and many people praying for me and being positive helps, even though I was in terrible pain. I started to gain my weight back and now at 165lbs,a good weight for me.
People do not give up when you run into a brick wall with docs, meds not working. Keep pushing thru the pain and remember to laugh! It helps, God knows I feel your pain and your sadness.
God Bless all of you !
So you’re fancy Jerry? 
jerryg7 said:
I have polymyositis with psoriasis I have Panniculitus on one foots toe nails, clearing up with psoriasis cream, takes a long time it kinda looks like I have French manicure
You can add me to the list of people praying for you! You have a positive attitude and that’s great!!
sewcrafty59 said:
Thank you so much for responding. My first treatment is June 9th for 4 days then again in 6 weeks. My doctor is in Pittsburgh, Pa and I live in Morgantown, WV.
My husbands insurance will only pay for me to go to Pittsburgh, however it will pay for Morgantown if a doctor there will rewrite the script. They sent me to Pittsburgh because they treated me for what they thought I had and the meds was not agreeing with me. My home docs was on target except for not finding the polyarthritis and now had tested positive for p155/140, this is the reason for the IVIG treatments.
As far as the panniculitis goes, it is inflammation in my fat cells. Which caused my muscles to atrophy andhad severe body weight loss. In 6 months time I went from 214 lbs to 120lbs. I looked like a skeleton. With me being persistant to find answers and a very caring pcp and dermatologist and sending me to Pittsburgh to a specialist that deals with my dx's things have gotten better. In the mean time the stomach biopsy took 6 months to heal and 4 days later I rolled over in bed and one of hard lesions from the panniculitis bursted and is still healing from last September 2013. It it was so deep I could see my fat cells and had to doctor this myself everyday. Took lots of antibiotics, ointments, bandages, not bending over, hard to wear clothes, plus the nodules have hardened and calicified and made it hard for me to move my arms. Many doc appointments every 2 weeks. The panniculitis is a complication of the dermatomyositis. I also have fibromyalgia, Elhers -Danlos , inflammatory polyarthritis, osteoarthritis and many other chronic illness's.
Thank God the open wound is almost healed. But the best part is having a loving God and many people praying for me and being positive helps, even though I was in terrible pain. I started to gain my weight back and now at 165lbs,a good weight for me.
People do not give up when you run into a brick wall with docs, meds not working. Keep pushing thru the pain and remember to laugh! It helps, God knows I feel your pain and your sadness.
God Bless all of you !