Hi I am in Glasgow QEUH getting my last of iv steroids today. This has been 2nd lot since January 2017 when diagnosed. I was told if these steroids don’t get a good effect on me, they suggested plasma exchange? Has anyone went through this procedure before?
still not on ms meds yet to see ms neurologist on 11 Feb.
Julie xx
Hi Julie,
Very surprised they are giving you steroids so soon after your first lot; you’re only allowed them three times per year I think it is.
Obviously, you have an aggressive form of MS but if your doctors are talking about plasma exchange this could be just what the doctor ordered (sorry for pun).
As long as it with the introduction of Stem Cells into I think; somewhere near your nose.
It sounds frightening but it’s the nearest thing to a ‘cure’ they have found. There was a programme on the BBC all about it; I’ll try and find it and get back to you.
George
Loads on it called Human Stem Cell Transplant (HSCT) http://www.bbc.co.uk/search?q=HSCT
Even i’m getting excited for you.
George
Hi George this is it -
Plasmapheresis or — plasma exchange — is a process involving the following steps:
This blood-cleansing procedure is a successful method for treating some autoimmune diseases — such as myasthenia gravis and Guillain-Barré syndrome — because it removes the circulating antibodies that are thought to be active in these diseases. Side effects of plasmapheresis therapy include occasional infection and blood clotting problems.
Because multiple sclerosis (MS) may also involve an autoimmune process — where the body is attacked by its own immune system — and because damaging factors have been found in plasma from people with MS, plasmapheresis has been tried as a treatment for MS.
This was suggested to me back in '98, wasn’t too keen on signing the waiver. There are more treatments available now. I think maybe you should try and ring the neuro’s secretary and get your appointment brought forward. Who suggested it?, it was actually my neuro because at the time it was such a postcode lottery that she couldn’t prescribe anything, and was attempting to trial plasmapheresis. Long time ago, so not sure about any positive results, but , would imagine it would be more widely employed had it shown signigicant improvements.Purely my own opinion, neuro could not give me any postive examples, should say any at all, positive or negative, but the waiver frightened me to death! Think I would want the neuro’s input before deciding. I am sure that in the intervening years they have better ways of ensuring the safety of the plasma, as it is from . various sources, which is what scared me to death, as the waiver basically absolved anyone of any resposibility and also any duty of care! I think you need far more information before deciding. Good luck, Hope the steroids do the trick!
Alison x
Hi Julie
That is very soon after the first steroids to be given more. I thought that two lots of steroids were all that was recommended within a year. The danger with too many high dose steroids is osteoporosis in later life.
You must have had a giant sized relapse as your first attack of MS. You haven’t said what form your relapses(s) have taken.
I’m not familiar with using plasmapheresis as a way of attacking the symptoms of a relapse. I can see the theory behind it, but I suspect you’d have to be in a pretty bad way to do it.
Don’t forget, there is no cure for MS and no definitive way of curing the effects of a relapse. If plasmapheresis were successfully used to reverse a relapse, I would expect it to me more common.
Hopefully the current IV steroids will do their job and you won’t be faced with the decision.
Sue
Julie,
Yeh I’ve heard of this before; it’s not HSCT but the doctor’s know what they are doing.
G
Hiya. I’ve not heard of plasma exchange but I just wanted to reassure you in case you have steroids again. When I was first diagnosed 11 years ago I had 5 relapses in 6 months and was treated with steroids each time. It took time and 4 relapses for me to be moved from a normal neurologist to an MS specialist but once I was, I started DMD’s (Rebif 44) and I one more relapse just after starting and then no more for 2 1/2 years.
I was worried as I had read that you shouldn’t have steroids more than 2 time a year. My MS specialist neuro said, you have them when you need them and we work out how to stop your relapses so if you look at 10 years, you haven’t had more than 1 a year never mind the 2/3 that you are ‘allowed’.
So my point is it’s the long term that matters, not short. Yes more than 2 or 3 lots of steroid every year is not good but if they get your treatment sorted out (and there are loads more options available now) you won’t even have 1 dose a year.
Take care
Sue
x