[Tunaboy]

I've read for some people, such treatment has reversed the PN or made it go into remission. My first neuro recommended Prednisone but after doing more research on the horrible side effects, I passed. But now i'm wondering if I made a mistake and should have taken it when my symptoms were mild. Can immunsuppressants allow the body to heal quicker?

[madisongrrl]

Originally Posted by Tunaboy

I've read for some people, such treatment has reversed the PN or made it go into remission. My first neuro recommended Prednisone but after doing more research on the horrible side effects, I passed. But now i'm wondering if I made a mistake and should have taken it when my symptoms were mild. Can immunsuppressants allow the body to heal quicker?

Some people on this message board have done small trials of Prednisone. I don't recall any successes. At this point, I would try Prednisone for a few months if someone offered it to me since it doesn't look like my full body burning is going away anytime soon

[JoannaP79]

Originally Posted by Tunaboy

I've read for some people, such treatment has reversed the PN or made it go into remission. My first neuro recommended Prednisone but after doing more research on the horrible side effects, I passed. But now i'm wondering if I made a mistake and should have taken it when my symptoms were mild. Can immunsuppressants allow the body to heal quicker?

http://www.neuropathy.org/site/DocSe....pdf?docID=944

Hi Tunaboy, hopefully the attached link comes through on this message. Someone kindly sent this to me yesterday. It was really informative ref how some immune mediated neuropathies may be tackled. It is however confusing as many of us don't know the exact type of neuropathy we have and the mechanisms behind it. I don't at this point anyway. So knowing which exact treatment may be best is difficult. Trying to access it may also be a problem. I already have a diagnosed autoimmune condition so I'm convinced my neuropathy is autoimmune. I had one corticosteroid shot a few months ago and it had no impact on my neuropathy. I don't think one corticosteroid shot will cause you problems in terms of side effects so one shot of that may be worth considering? I'm no expert but just wanted you to know that one corticosteroid shot caused me no problems or side effects at all.

[Tunaboy]

Originally Posted by JoannaP79

http://www.neuropathy.org/site/DocSe....pdf?docID=944

Hi Tunaboy, hopefully the attached link comes through on this message. Someone kindly sent this to me yesterday. It was really informative ref how some immune mediated neuropathies may be tackled. It is however confusing as many of us don't know the exact type of neuropathy we have and the mechanisms behind it. I don't at this point anyway. So knowing which exact treatment may be best is difficult. Trying to access it may also be a problem. I already have a diagnosed autoimmune condition so I'm convinced my neuropathy is autoimmune. I had one corticosteroid shot a few months ago and it had no impact on my neuropathy. I don't think one corticosteroid shot will cause you problems in terms of side effects so one shot of that may be worth considering? I'm no expert but just wanted you to know that one corticosteroid shot caused me no problems or side effects at all.

Interesting article. I don't know why but I have never had good reactions to steroids. Also, when I had surgery before all this started, I was given IV steroids and now i'm worried that might have been a factor.

[en bloc]

It ALL comes down to what the root cause of the PN is. if the PN is inflammatory based, then steroids can be helpful. If it is autoimmune in nature, then IVIG can be helpful. Both carry risks.

Steroids can (and usually will) cause permanent damage to various things, including bone density, skin (causes paper thin skin), blood sugar (steroid induced diabetes), weight gain, glaucoma, moon face (and other fat pad swelling), and potassium loss...and that is NOT the end of the list. Patients (like myself) can end up with Cushing's syndrome and in some cases the body completely stops producing it's own cortisol.

IVIG carries risk of stroke (but it's not a huge risk). There are many side-effects like headache (very common and can be very bad), chills, tachycardia, etc. The biggest problem with IVIG is the cost. Not sure where you got $3 for an infusion...it is far more than that. My current infusion (once a month) is in excess of $30,000!! And that is not even the actual dose for neuropathy (it would be double).

But again, it all depends on the cause and what you're treating to know whether it would be helpful. If SFN is documented by skin biopsy, the IVIG is know to help increase fiber density, especially in autoimmune cases.

Hope this is helpful.

[Tunaboy]

Originally Posted by en bloc

It ALL comes down to what the root cause of the PN is. if the PN is inflammatory based, then steroids can be helpful. If it is autoimmune in nature, then IVIG can be helpful. Both carry risks.

Steroids can (and usually will) cause permanent damage to various things, including bone density, skin (causes paper thin skin), blood sugar (steroid induced diabetes), weight gain, glaucoma, moon face (and other fat pad swelling), and potassium loss...and that is NOT the end of the list. Patients (like myself) can end up with Cushing's syndrome and in some cases the body completely stops producing it's own cortisol.

IVIG carries risk of stroke (but it's not a huge risk). There are many side-effects like headache (very common and can be very bad), chills, tachycardia, etc. The biggest problem with IVIG is the cost. Not sure where you got $3 for an infusion...it is far more than that. My current infusion (once a month) is in excess of $30,000!! And that is not even the actual dose for neuropathy (it would be double).

But again, it all depends on the cause and what you're treating to know whether it would be helpful. If SFN is documented by skin biopsy, the IVIG is know to help increase fiber density, especially in autoimmune cases.

Hope this is helpful.

Thanks for the info. I don't know the exact mechanism of how IVIG works for some people, but I would think that since it stops whatever it is from attacking the nerves, this would allow the nerves to heal. Of course the treatment would have to continue for an extended period of time. I don't think I could just take pain meds, knowing that my nerves are continuing to degenerate.

[bluesfan]

Originally Posted by Tunaboy

I've read for some people, such treatment has reversed the PN or made it go into remission. My first neuro recommended Prednisone but after doing more research on the horrible side effects, I passed. But now i'm wondering if I made a mistake and should have taken it when my symptoms were mild. Can immunsuppressants allow the body to heal quicker?

Tunaboy
Speaking as someone who is on 3 different steroids (maintenance doses) for managing an autoimmune condition, they have made no improvement to my PN - including a spell of very high doses last Oct during surgery.

However that said I think it very much depends on what type of PN you have and what caused it. Steroids may be temporarily effective for some types. That's why getting as definitive diagnosis as possible is important. The long term effects of steroids are nasty and their use for PN should only be considered when all other options have been exhausted.

Thanks JoannaP79 for the article link - I haven't read it all yet but it looks to be one of the most comprehensive I've seen so far and deserves a more thorough perusal.

[Tunaboy]

Hmm..

Has everyone tried IVIG? It seems to be the most promising, with some people showing significant improvement or even going into remission. I am going to try to get this since I am in the early stages. So my question is, besides the cost, how come more people aren't on this treatment? It seems like the only solution to stop the body from attacking itself, thus allowing it to heal.

[Littlepaw]

I think cost is big thing with IVIG. It runs upwards of $3K depending on much is needed. If the PN is autoimmune then certainly IVIG would make a difference. For that matter, IMHO if it's early autoimmune-y, say a body's hyper reaction to something that maybe isn't a full autoimmune disease (think drug or viral reaction) then steroids knocking the immune system down a notch could be helpful before all the damage is done. I wouldn't be afraid of a short course of oral steroids. You're not talking long term. I think you'd know pretty soon if you had something that would respond.

[JoannaP79]

Originally Posted by Littlepaw

I think cost is big thing with IVIG. It runs upwards of $3K depending on much is needed. If the PN is autoimmune then certainly IVIG would make a difference. For that matter, IMHO if it's early autoimmune-y, say a body's hyper reaction to something that maybe isn't a full autoimmune disease (think drug or viral reaction) then steroids knocking the immune system down a notch could be helpful before all the damage is done. I wouldn't be afraid of a short course of oral steroids. You're not talking long term. I think you'd know pretty soon if you had something that would respond.

I've been told funding is a key issue for the NHS (UK). I am told it may not help and could cause more harm than good. You just dont know whether they are saying that just to deter you or not. I cant find enough on the internet about SFN and IVIG. I have searched all over for weeks and there aren't a great deal of studies or trials out there.