Response to Prednisone?

[pogoman]

Today I finished the second of 5 days of IVIG treatment.
They called thursday to let me know I was scheduled and I went in early saturday.

I think I am showing a slow improvement, less pain and noticeably more energy but probably need to wait a week or two to confirm.

No side effects so far, a bit of a headache today about an hour after finishing the doseage.
Today they ramped it up a bit faster so I was done in 3 hrs instead of 4 1/2 hrs the day before.

 

[pogoman]

Well I can definitely say that the IVIG treatment has been effective and I apparently do have necrotizing autoimmune myopathy.

The pain has been slowly but steadily going away every day since the last treatment on Wednesday.
I have been able to stop all pain meds except to taper off the strong stuff so I'm not getting brain fatigue.
IBS symptoms are also improved and I am sleeping much better.
I am continuing on methylation and mito supplements as they seem to still help with energy.

I found out the last day of treatment I am to do 5 days of IVIG each in January and in February then see the neuro beginning of March.

 

[sp2000]

Its in relation to if this indicates my noninflammatory myopathy is autoimmune related.
My neurologist started me on pred after I let him know I was feeling worse and wanted to try it.

There is a new subset of myopathy called necrotizing autoimmune myopathy or immune mediated necrotizing myopathy, I just got a copy of my muscle biopsy from last year showing muscle necrosis and atrophy.
My neuro also had me do the HMGCR antibody test for the statin caused variant but it was negative.
The thing about these types of necrotizing disease is inflammation is not present, which fits my biopsy results.
I have high CKP (mid600s) and the inflammation tests have all been negative.
Because NAM is fairly new, there's only a couple of antibody tests and something like half are diagnosed as ideopathic.

http://archneur.jamanetwork.com/article.aspx?articleid=2398134



Thank you, I will bring that up when I contact him on the pred results.
The literature indicates monotherapy is not usually successful unless started early

Hi Pogoman,
Would you mind telling how your side effects started? Have you used Saw palmetto / Finasteride /Accutane etc in the past?

 

[pogoman]

Hi Pogoman,
Would you mind telling how your side effects started? Have you used Saw palmetto / Finasteride /Accutane etc in the past?

I've used saw palmetto in the past but not the others.

It started with a bunch of minor problems back 20 years, I realized much later I had muscle pain symptoms as a teenager.
First major symptoms were muscle pain from working out along with idiopathic anemia, low testosterone, high trigs.
Then came a myopathy diagnosis in my legs along with neuropathy and increasing spine issues.
The ivig helped with symptoms but did not slow the myopathy so I stopped after 10 months.

Currently on rituximab, did nerve studies/emg and my neuro found abnormal readings in my calf muscles now, not just the knee muscles as before.
He told me he will research possible genetic causes and tests that I might take.
Did a thoracic MRI yesterday ordered by my physical medicine doctor to see if getting en epidural shot would help the pain.
Was unable to do the lumbar mri because of back pain and my sinuses slammed shut and I couldn't breath.

 

[SWAlexander]

Hi pogoman. You talk about low testosterone. Any other hormon problems like low cortisol and lower vitamin D levels?
Do you have problemes walking steps, up the hill?
I have severe thoracic and lumbar problems and Tarlov Cysts and a L4-L5 fusion.

 

[Pyrrhus]

Related discussion:

Anti-inflammatories may reduce symptoms in the short-term, but may not in the long-term
https://forums.phoenixrising.me/thr...hort-term-but-may-not-in-the-long-term.80492/

 

[pogoman]

Hi pogoman. You talk about low testosterone. Any other hormon problems like low cortisol and lower vitamin D levels?
Do you have problemes walking steps, up the hill?
I have severe thoracic and lumbar problems and Tarlov Cysts and a L4-L5 fusion.

I've been taking vitamin D for a few years now, I did test low around a decade ago.
Don't know if I ever had cortisol tested, thryroid panel was normal years ago.
I don't have back problems during the day, I work as a truck mechanic so I am on my feet all day at work.
But lying down in any position to sleep, my back and neuropathy start acting up.