Reply To: Anyone with Sensory Predominant CIDP?
I made a mistake in my reply, i meant to say that I have PE every six weeks. The plan is to have PE every three weekends over two days if I don’t get Rituximab and if contractually my consultant can’t administer it to me if I have paid for the drug (we need to check NHS rules). PE is a big help and has reduced my many symptoms but six weeks is not often enough. Week 1 say is my treatment week and then weeks three and four I will notice a big improvement. Symptoms then start creeping back week 5. I had numbness in my feet and hands when the condition started 18 months ago and I don’t suffer with numbness any more but where my hands and feet were going numb at the start my sensation in my finger tips and toes isn’t quite as sharp as it is further up the fingers and feet. I’m aware of that when the pin prick test is done. After the first IVIg I had improvement for two weeks but after the second treatment I had improvement for only one week and nerve conduction studies showed only boarderline improvement. That’s when I was taken off the IVIg and put on Prednisoline. That caused a flare up in symptoms plus a bone scan showed I have osteopenia so I was taken off the steroids. I’m in the UK by the way but am having difficulty getting funding for Rituximab in circumstances where PE costs £1,000 per day and Rituximab £2,500 and if it works I may only need it every 10-12 months or never again. If it works it would clearly save £1,000s of pounds. My CIDP started in July 2016 with a whole host of bizarre symptoms and I started IVIg in the December. I started PE in June last year and nerve conduction studies after only theee weeks showed between 50 and 100% improvement. I hope this helps. You have had it a long time. How have you been coping? I would be interested to hear how you get on. Cyclophosphamide is very immunosuppressant but my consultant won’t give it to me on safety grounds. I really hope we both push this horrible thing into remission.