Muscle Enymes?

[mschmidt]

Maz,

Thanks for the reply.  I know for sure that I have low IgA,  and my llmd told me he wants to work on bringing up my immune system.  Not sure what that means but, I see him again February 1st, and will ask.  I'll also ask the nurse Humana is sending over tomorrow.  Believe it or not, SHE has SD, and has had it since 1985!! She's coming over “off the record” tomorrow to talk about my experience.

 

[anjoe]

Yes, Parisa. I'm also interested in knowing what antibiotic is being used with the IVIG treatment. What a blessing all of this information is becoming. It's like I'm learning something new each day. I have a RA Dr. Appt. on 2/4th and I'd like to discuss other alternatives than just saying that I have to take steriods. It's becoming a more difficult journey with each doctor that I see.

 

 

 

 

I am 50 years old. 6 months of weakness in legs, going up steps or getting up from sitting position. Diagnosed: Polymyositis/Dermatomyositis after muscle biopsy 12/09 Refusing to take steriods from advice of family doctor. Looking for a Dr. that will give AP or IVIG Therapy and will take my insurance. What a rare search this is becoming:crying:

[Trudi]

[user=977]mschmidt[/user] wrote:

Believe it or not, SHE has SD, and has had it since 1985!! She's coming over “off the record” tomorrow to talk about my experience. 

Wow!!

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[carries]

Hi! Look into IVIG therapy. My cousin has a muscle autoimmune disease and this therapy is working great for her….along with cellcept…booooo! But the IVIG is what is really helping her…the cellcept is just maintenance.

[mschmidt]

I actually think I would qualify because my IgA levels hover around the mid 50's…normal range is 70-400.  I'll talk to Dr. F about it. 

I'm still HIGHLY suspicious of Celiac disease, although I haven't been able to prove that in my blood tests to doctors.  But, I just read that if you have low IgA, it can produce a false negative result.  So, I'm going to have Dr. F do an IgG tTG test on me, which should be positive.  Yes, I'm also doing the Enterolab stool test.  My only question to all the celiac people is:  How long do I need to consume gluten for the tests to be accurate?  I read somewhere that I need to ingest it consistently for 2-6 weeks.  Is this true? I've been gf for a while now.

 

[Parisa]

To qualify for IVIG, you have to have a condition that they believe responds to it (it is very, very expensive).  And sometimes you have to prove that traditional approaches have failed (I guess that failed Cytoxan course actually did serve a purpose!)

The following conditions can qualify:

[*]Guillain ? Barre (GB) Syndrome [/*]
[*]CIDPN (chronic inflammatory demylenating polyneuropathy) [/*]
[*]Idiopathic Thrombocytopenia [/*]
[*]Multifocal Motor Neuropathy (MMN) [/*]
[*]Myositis – Dermato and Poly [/*]
[*]Lupus [/*]
[*]vasculitis syndromes [/*]
[*]Gamma globulin deficiencies See this link for more detailed descriptions and conditions I left out:

http://www.bcbstx.com/provider/pdf/medicalpolicies/drug/504_003.pdf

My husband qualified with a positive EMG for myositis.  If you are gamma globulin deficient you would need the proper lab work.  I know some Lymies have CIDP and qualify that way.

It's important to go to a practitioner that will actually prescribe IVIG. Some doctors aren't interested or it's outside of their little box.  My husband's doctor used an infusion company that specializes in IVIG to get the insurance authorization.  The infusion companies make good money off of this so they are motivated to get patients qualified.

[/*]

[Parisa]

Carrie,

Now that your cousin is doing so well on the IVIG see if she can't start weaning off the Cellcept.  That's supposed to be one of the goals.  My husband's rheumie really, really wanted him to do methotrexate with the IVIG and we just kept saying let's see how it goes without it.  The rheumie no longer brings up the methotrexate issue as my husband has done so well. You have to be strong to take on these doctors.

[carries]

Parisa,

 

Thanks! I will definitely tell her about that…..Before the IVIG…she was on pred. and cellcept…weened off both way too early and she was back to square one and couldnt even walk…….then thats when they decided the combo between cellcept and IVIG….so hopefully there goal is to ween her off eventually just hopefully not too soon. She is only 23 and I 'd hate to see her on such meds as cellcept for long periods of time. Thanks for the tip I will share this info…..:):)

[Davit]

I have been taking steroids for far too long and they don't help my muscles at normal doses, I would advise against taking them.

[Davit]

Hello, I haven't been here in a long time , been busy fighting infection.
RA is still pretty much in remission but I keep getting reoccurring Staph infection. I remember some talk of IVIG here. Thought it might kill two birds with one stone. Any Ideas?

Davit

[Trudi]

[user=1539]Davit[/user] wrote:

Hello, I haven't been here in a long time , been busy fighting infection.

Hi Davit–

I noticed that you haven't posted.  I'm so sorry that fighting the infection kept you off the board.  Hope things are going better–I missed your comments–

Take care,

Trudi

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[Author]

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