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I'm not taking steriods. Still trying to find a AP Dr. in my state. My Dr. says that prednisone will bring my levels down. Will AP therapy also bring them down? What happens if your levels stay high for a long period of time?
[user=1958]anjoe[/user] wrote:
I'm not taking steriods. Still trying to find a AP Dr. in my state. My Dr. says that prednisone will bring my levels down. Will AP therapy also bring them down? What happens if your levels stay high for a long period of time?
I know I'm asking lots of questions here but mostly here are really helpful and I've learned so much about autoimmune disease here. I just want to find out from others what I can expect from each day living with PM/DM. I appreciate any and all replies. God bless and thanks so much. Please forgive if I post lots of ?'s.
Prednisone never did anything for my husband's muscles. It must work for some because they always try to throw it at you but it definitely didn't do anthing for my husband. If you haven't started, I really wouldn't if I were in your shoes.
anjoe,
Prednison leached my bones to the point that now I have brittle bone desease. Broke some ribs just from either a hard cough or a bump to my back. Never knew how it happened. So if you are just now starting go the total route of the antibiotic protocol. I have been there with many meds that are blackboxed and other ones that can cause cancer. If I had known about AP, I would NEVER, EVER taken the meds my rheumy offert me for over three years.
Eva:D
Eva Holloway
Usually steriods are used to control pain and inflamation. I too would wait and not take them if you dont have too. keep us posted
musher
Agree with Musher and the others. Prednisone is OK to address short term inflammation, but longer term is generally detrimental to the body and really only masks symptoms. A proper AP will address the root cause of rheumatic disease.
We found that high dose prednisone did bring the CPK numbers down, but with many, many side effects, and it is not the long term solution. Doctors will eventually want to swap in imuran or methotrexate to replace prednisone in the long run. All of these are not getting to the root of the problem, tho.
TischDid AP Therapy bring your muscle Enymes down or closer to a normal range? I also have diabetes 2 to handle also along with high muscle enymes. My family doctor is really pushing for the prednisone but I am still being stubborn and wanting to find a doctor to talk to about AP therapy. It I can't fine one, then I'm seriously thinking about doing natural, herbal antibiotics instead on my own to boost my immune system.
Hi,
SEB (my BF – who was diagnosed w/PM) had extremely high CPKs at the onset of illness – up to 14,000 at their highest, accompanied by debilitating proximal muscle weakness and wasting). The prednisone helped get them down in the 1200 range. But they never got back to normal (<200), and as soon as he started weaning off the high dose, they shot back up. The high dose was completely unsustainable. A combination of IVIG infusion and lower dose prednisone was used over many months before we even found out about AP.
He still has elevated CPKs (1500-2000), but has made many improvements.
How high are your CPKs and what is your level of weakness? If it is not debilitating I would continue to seek out an AP doc before resorting to prednisone, especially if you have the added diabetes complication.Tisch
Tisch Thanks for your info. I only have slight muscle weakness in both legs, can't take tub baths and have to push myself up from a sitting position with my arms. I'm still refusing prednisone. I don't feel that I'm getting weaker but the rash has spread more on my fingers, hands, legs and now I have some on on both of my sides. I don't know what my enymes are. Guess I should call and ask my doctor. I'm so new to this. He just told me that they were still highly elevated since I refuse to take steriods to bring them down. He told me that if I would take them then my levels would come down within a month. I'm still looking for a AP Dr. in my state that will take insurance. Keep me posted on improvements etc.
I'm just learning about different types of treatments. Do you know of anybody that has gotten IVIG for DM and has had good results? I hear that it's rather expensive. I would like to know if it can help the PM also that I have? Appreciate any answers…You have been all so helpful on my journey through this….
Anjoe,
I'm telling you about the IVIG because my husband has been on it. The combination of IVIG and IV antibiotics turned everything around for him.
I've been reading a lot about the use of IVIG therapy for autoimmune and immunodeficiency diseases. Does insurance cover this? I'm not 100% that I would go that direction but, am curious about how it may complement what I'm already doing.
Maria
[user=977]mschmidt[/user] wrote:
I've been reading a lot about the use of IVIG therapy for autoimmune and immunodeficiency diseases. Does insurance cover this? I'm not 100% that I would go that direction but, am curious about how it may complement what I'm already doing.
Hi Maria,
I saw an immunologist in May of last year and he was suggesting I have IVIG that could be infused in his office. In order to get it approved by insurance, however, he ran a ton of immune function tests. He had to prove I was immune-deficient, he said, in order to gain approval for IVIG. As it turned out, I wasn't as immune-deficient as he thought and so there was no point in pursuing it.
Dermatomyositis and polymyositis patients tend, on the whole, to be fairly immune-deficient and IVIG is more likely to be approved for these diseases as they have been shown to have some benefit. I would think, therefore, that poor immune function would have to be documented with labs before they could be approved as was the case for me. Was that the case for your hubby, Parisa?
http://en.wikipedia.org/wiki/Intravenous_immunoglobulin
Peace, Maz
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