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started IVIG this week

Discussion in 'General Treatment' started by viggster, Mar 25, 2018.

  1. viggster

    viggster Senior Member

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    Just thought I'd let folks know I started IVIG this week. Two grams per kilogram induction dose followed every three weeks by 1g per kg. This is the emerging dosing schedule used for small-fiber neuropathy. If you download the latest "IG Living" magazine (yes, it's a thing!), there's a short article on the growing evidence for IVIG in small-fiber neuropathy. I do have biopsy-confirmed SFN and biopsy-confirmed inflammatory myopathy, meaning my immune system is inside my muscle tissue causing damage.

    http://www.igliving.com/

    When I got sick 5-6 years ago, I stopped sweating. Well, today I woke up with natural BO for the first time since then. I think it's pretty clear my autonomic dysfunction is autoimmune and I'd say the overnight pit-sweat is a sign that IVIG has begun to work. At least that's how I'm interpreting it.

    I'm on regular Medicare + a secondary insurance policy, so all my doctor had to do is write a letter to Medicare. No prior authorization required. I'm not sure how many doses of IVIG I'll be able to get before Medicare starts asking questions. We'll see.
     
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  2. Learner1

    Learner1 Forum Support Assistant

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    That's great! That's a high dose. How'd you tolerate it?
     
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  3. Silencio

    Silencio Senior Member

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    Very exciting Brian.. keep us updated. Did you discover this at NIH or outside doctors, and can any neurologist do the biopsy correctly or is there one you recommend?

    Did you do the pneuovax vaccine to get covered by Medicare?
     
    Last edited: Mar 29, 2018
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  4. viggster

    viggster Senior Member

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    I had a muscle biopsy at Stanford in January that showed the inflammatory myopathy, and a skin biopsy last fall that showed the small fiber neuropathy. I repeated those biopsies at NIH but they'll be doing a lot more with the samples, especially the muscle. There are six or seven experiments planned with the muscle tissue...discovery-type experimental work. I hope they learn lots. Muscle biopsies themselves are pretty standard so I'd think any hospital could do them. There are two types of muscle biopsies and now I've had experience with both. At Stanford I was knocked out with propofol and had a two-inch incision. I was unconscious and don't remember anything. At NIH, they did a punch biopsy with local anaesthetic. I was awake for that. It was...intense. They completely numbed the thigh muscle but there's still a lot of sensation when the punch needle pushes through the fascia. The advantage is that you don't need to go under, and it can be done outside of an OR. They did it right in my patient room. And the scar is much smaller, a small circle.

    My doctor did not have to do a vaccine challenge. I think with regular Medicare (not a managed Medicare plan) the doc makes a 'local determination' that I need IVIG and Medicare has to pay for it, at least initially. At some point I think Medicare is going to ask for more justification, but the process was much easier that what I hear people are going through with private insurance to get IVIG. Because I'm getting the infusions at a hospital, they are covered under Medicare Part B, which is better than Part D as far as expensive drugs like IVIG are concerned.

    I tolerated it pretty well. Some extra aching on the first two days of infusions, and a pretty bad neck/headache this weekend. But no fevers or nausea.
     
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  5. RYO

    RYO Senior Member

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    @viggster
    I agree that needle muscle biopsy was intense. I hope they make good use of samples.

    Can you describe some of the symptoms you are experiencing related to SFN?

    I really hope you improve on IVIG. Keep us posted!
     
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  6. viggster

    viggster Senior Member

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    Thanks. I think the main SFN symptoms have been:
    - Numbness and tingling in feet, legs
    - Sensitive skin (went through a period where even clothes were painful; better but still a problem now)
    - Stopped sweating. I think this is related to SFN.
    - Intense pain in legs, which is probably more related to the inflammatory myopathy than the SFN but who knows.
     
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  7. duncan

    duncan Senior Member

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    I think that is awesome.

    I am hoping I can get IVIG, but I have to go the vaccine rout because I am Subclass 1 deficient, Unfortunately I did not quite qualify when I tried. I guess my immune system has to tank even further before I can begin.

    I hear so many stories of IVIG helping. Yes, those are anecdotes, but even anecdotes are data bits, and we don't hear too many success stories when all is said and done. IVIG appears to be a wellspring of hope.

    Please keep us posted.
     
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  8. Murph

    Murph :)

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    Yay for stinky sweat!

    may your relationship with the deodorant spray be long and rewarding..

    :)
     
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  9. ebethc

    ebethc Senior Member

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    @viggster

    how did you feel after the IVIG? any reactions?

    how long did the infusion take?
     
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  10. PDXhausted

    PDXhausted Senior Member

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    @viggster

    That's so great that you get to try this and Medicare covers it! I hope it provides you some relief!

    Did you have any fatigue in your muscles at all (i.e. do they feel like sandbags after exertion?) or was pain/tingling the more noticeable symptom?
     
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  11. jpcv

    jpcv Senior Member

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    What about your blood work?
    Did you have altered CPK values?
     
  12. RYO

    RYO Senior Member

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    I think it is very interesting that we have very similar symptoms. I have similar issues with burning type discomfort in my feet and legs. I sweat much less. I have chronic aching in my legs. My first open muscle biopsy didn't show inflammatory myopathy. I am not sure how long it will take for NIH to complete muscle analysis on recent punch biopsy. Also, my muscle atrophy is limited and likely related to inactivity. It sounds like your muscle atrophy is much more prominent. I had very mild issues with skin sensitivity.

    It would be enlightening if NIH could deduce which virus triggered this event. As I recall, we both suffered from viral illness in late Spring / early summer of 2012.

    If you don't mind, could you let me know which doctors you are seeing at Stanford? Perhaps you could send me a private message.

    Thank you!
     
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  13. Cort

    Cort Phoenix Rising Founder

    That's great. Sivieri told me having a positive biopsy was basically a must to get IVIG.

    Good luck!
     
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  14. viggster

    viggster Senior Member

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    Three days, about five hours each day. The infusion center at my local hospital is very comfortable and the nurses are great. So it wasn't tough being there. The recliners vibrate. :)

    Felt extra-tired the first two evenings. The first two days after I was finished, I had a bad neck/back-of-the-head ache. But no fevers or nausea.

    Yes, easy muscle fatigueability has been part of my illness. More worrisome was the atrophy & weakness though, which are probably due to the inflammation the biopsy found in my muscle tissue.

    Yes, my CPK has been around 300 for the past few years. That's considered mildly elevated.
     
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  15. viggster

    viggster Senior Member

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    Well I spoke too soon about how easy things have gone. Got a bad neck/headache starting on day two after treatment ended, and bad diarrhea on day three. Both are not unusual with IVIG. So now that I'm 6 days out from the end of the three infusions, I'm still having adverse effects. They can take a few days or longer to materialize.
     
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  16. Learner1

    Learner1 Forum Support Assistant

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    What support meds are you on?
     
  17. Gingergrrl

    Gingergrrl Senior Member

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    The post-IVIG headache/neck pain is inevitable in my experience, and is often 1-2 days delayed, but varies in severity. Sometimes it is a minor annoyance and other times (for me) it is most excruciating head pressure where you would do anything to stop it.

    How fast was your infusion speed (sorry if you said this and I missed it)!
     
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  18. viggster

    viggster Senior Member

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    They maxed out at 120 (cc's per hour? Some other unit??). Started at 30 and worked up. Each 40 g bottle took about 5 hours.
     
  19. viggster

    viggster Senior Member

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    They gave me Tylenol and Benadryl before each infusion.
     
  20. Learner1

    Learner1 Forum Support Assistant

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    You might need better support. I am given Solumedrol at the beginning, and take naproxen and benadryl throughout the infusion, which goes slow, and is followed by 500ml saline. I'm only on 55g, But its a 10 hour process.

    The next 4 days, I take naproxen and Quicksilver Colorado Hemp oil (CBD) for headache pain, dexamethasone to minimise neck and brain swelling, benadryl and ketotifen to calm mast cells, and ondansetron and CBD oil for nausea.. I taper off it after 4 days, but still have some symptoms for up to 7 date after IVIG.

    This keeps it manageable. If I back off on the drugs, its not good.
     
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