I couldn't agree with you more. I honestly think they just don't get it. They can't empathize. And if it's not that, then it's worse: they just don't care. It's really deplorable. They need to change the protocol. I'm not a fan of such powerful meds with horrible side effects, but a very short and immediate course to stop serious, longterm damage might be worth it.



Hi Sven, if it makes you feel any better- I was started on prednisone and developed Cushings Syndrome as a side affect from the prednisone. It was horrific and taken over 2 years to semi-recover from it. I was wishing they had tried a strong pain Med treatment first! Although prednisone was thee only thing tried that helped the excruciating foot pain it made such a mess of me in other ways I that I still struggle with. I'm very interested to know if the IVIG helps so please do keep us posted. And if anyone reading this comes across any medical journal articles discussing IVIG as a treatment please post link for me as I would like to print for my Drs. Thanks. I hope we all find pain relief but more importantly root causes to disease modify if possible![/QUOTE]

Hi everyone,

Just wanted to give an update. I can honestly say I am feeling better...I am def. not cured but the major burning has subsided and its been about 3 weeks now of good days. I still have issues with my thighs hurting...alodynia mostly...and only when I wear pants...but my hands and feet feel mostly good. I just had my second round of IVIG 2 weeks ago(150 grams of Gammunex)....and the doc wants to do at least 4 or 5 total...after that she said we can make a decision to stop or just extend them to 6 week or 2 month intervals.

I am still taking gaba...but down to 300mg at night for sleep....but no opiates anymore or benzos that they had me on. I have been doing alot of yoga too...about 2 to 3 times a week and I think itat first made my symptoms worse but now I think it is helping with the healing process.

I am right at a year into this battle...my pain started last sept (2015)...I remember seeing a real good neuro 3 months into it and he said it would last a year to a year and a half...and then I would start feeling better. Guess that guy had a crystal ball in his office somewhere...

Anyway...I'll keep checking in and let me know if you have any Qs that I may answer.

Hope we all get answers to this complicated health issue and get our health and lives back.

Sven

Thanks for the update!! Glad you are having a positive experience this early into treatment. I honestly don't know of many people pushing infusion intervals out to 6-8 weeks (even when doing good). The antibodies in IVIG have a half-life of only about 21 days...hence why treatments are typically scheduled every month.

It will be interesting to see if your symptoms start to return after the 4 week mark. I, personally, have increased pain the last week before my next infusion...right at the half-life (3 week) mark. It's NOT a horrible/unmanageable difference, but certainly noticeable. I can't imagine what I would feel like if I waited another 2-4 weeks before the next infusion. Talk to your doctor about this and what studies have shown for this treatment interval. It may work fine for some people, and not very good for others...after all, we are all different.

Please keep us updated.

Thx EB...I will discuss the different options and why with my doc. I see her in December after my 4th treatment. I also wonder if my body is healing on its own...I guess that may never be known. I know that my skin biopsy test result were pretty dire and the small fiber nerves heal vary slowly so I just don't know.

But I am thrilled with the diminished pain...if I get off the the gaba I may get back to working which is my goal.

I'll keep updating.

Sven

Hi Sven,
Glad that the treatment is working and hope you will be able to return to your work soon!

Hi Sven,
I just went through this thread and wanted to know if you are still happy with IVIG ?

All the best

Nicolas