IVIG FOR PMR

[jwb43]

Has anybody tried intravenous immunoglobulin infusions For PMR? My rheumatologist wants me to try it. It's very expensive and I'm not sure if insurance will cover it.

[SheffieldJane]

I am from the UK and all my research and everything that I've read on here leads me to the conclusion that there is one drug and one drug alone that has any impact on PMR as it reduces harmful, painful, mobility limiting, ,inflammation and that is Prednisalone.

Unless you have a complex medical background that indicates the above treatment, I would suspect that it is an expensive experiment that comes to naught. I have an open mind but it would really have to be sold to me as an answer for auto immune diseases. I would have expected to be aware of a lot of publicity surrounding its proven efficacy.

Tell me I'm wrong, I really wish there were more options for us!

[PMRpro Ambassador]

Given the cost and risks - why isn't your rheumy trying Actemra?

[jwb43 in reply to PMRpro]

And bad side effects from prednisones I would have the same problems with Actemra.

[PMRpro Ambassador in reply to jwb43]

That is a pre-conception on your part. You can't know until you try. Tocilizumab does not resemble pred in any way, shape or form

[jwb43 in reply to PMRpro]

Yes but he knows how sensitive I am to side effects of all medications. Also there are several lawsuits out right now that the actemra has caused Mini problems that were not revealed to the General Public.

[PMRpro Ambassador in reply to jwb43]

The lawsuits are more based on the fact that the non-declaration made it look better as an option for RA than other biologics which DID declare the potential side effects. The rates aren't significantly different in fact. All drugs have side effects - everything.

But it doesn't matter what we suggest here - you always have some reason for rejecting it. We've told you the options for PMR and GCA - there is no more we can suggest if they aren't acceptable to you. No-one LIKES taking pred and its side effects. No-one LIKES taking any medication - but we all look at it on balance. With pred I have a good quality of life, without I don't. That outweighed my problems with pred when I had them. If I were offered tocilizumab because pred didn't work for me, I would try it. THEN I would make a decision as to whether it was worth it for me. But that is our personal decision and one I can't make for you. But neither can I offer unendless suggestions that are all going to be turned down with a get-out.

[jwb43 in reply to PMRpro]

I have tried dozens of different treatment protocols and I'm sorry that they did not work for me. Life on prednisone would probably debilitate me more than living with the pain. I would try actemra if it were offered. And it may come to that. Sorry if I wasted your time offering suggestions. I won't bother you anymore

[PMRpro Ambassador in reply to jwb43]

That isn't what I said - but I have done my best. I'm sorry if you feel I have failed you.

[jwb43 in reply to PMRpro]

You have helped so many people on this forum. No one disputes your vast knowledge of this topic. But you and dozens of other doctors have discovered that some people just can't take powerful medications. I appreciate all your advice and we may find out someday that it's not even PMR anyway

[piglette in reply to jwb43]

Hi jwb, If you were trying dozens of different protocols for PMR I am not surprised they did not work. Steroids really are the only thing, although modern biologicals are now being put on the market, such as tocilizumab. Why don't you ask your doctor rather than waiting to be offered it? I think we pretty well all have side effects from drugs to a greater or lesser extent. Some people seem to think that they should be able to take a tablet and it works with no other effects, sadly life and drugs are not quite like that. I was reading an article today about drugs for older people and it seems most of them are taking more tablets to counteract side effects than the number of tablets to fight the original symptoms.

[jwb43 in reply to piglette]

I did ask her about the actemra and she was the one that told me she didn't think I should take it because I am so susceptible to side effects more so than most people. I don't like being this way at all I would give anything to be able to take prednisone without having such bad heart palpitations and many other side effects. But I'm a keep asking her until she lets me try it.