Twiggy
Your Replies
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May 25, 2018 at 2:34 pm
Hi, I’m glad you are receiving treatment. Your life will gradually get back to normal. I have a vortex port with two chambers for plasma exchange. It was very painful for the first couple of days after surgery but now I am completely at ease with it and forget it’s there. I don’t worry that with some outfits it is visible because i’ve adopted it as part of me now and it makes treatment much easier. I am fairly slim particularly the top half of me and so it’s quite prominent. I can go jogging with it and it doesn’t restrict my life in any way.
Regards
March 12, 2018 at 2:28 pmAlthough I am getting better (my nerve conduction studies are now within ‘normal range’) it’s frustrating that a cluster of very unpleasant symptoms persist. I have CISP and am in a lot of pain much of the time in my feet and my head. In cases where there is improvement and treatment assists, I think it’s difficult to get chaemotherapy trestment which could push it into remission. Does anyone have any experience of this type of treatment for CIDP/CIDP? I have been receiving conventional treatment since December 2016 (I have had IVIg, been on steroids and now have regular PE). The tiredness is also a feature and I need much more rest now. I just don’t have the stamina. There are days when I get home from work as well as other times and have to go straight to bed so it still very much affects my quality of life
Regards
February 10, 2018 at 9:28 amHi, that’s the first time I have heard of a connection with the herpes virus and CISP. I’ve not read it in any of the literature either. CISP is extremely rare so I don’t think one can say most people. I’ve not been tested for it. I think you should be confident with your diagnosis because having a diagnosis is a big help and it’s not helpful if someone tells you you should have herpes too to fit the diagnosis. CIDP is on a wide spectrum. I had a frustrating time also getting a diagnosis. My GP had no idea my symptoms were neurological, I had to tell her that (I came to my own conclusion after talking to various people) and the neurologist she sent me to was a Parkinson’s specialist (and subsequently told me he had 12 CIDP patients) and yet insisted nothing was wrong. All the numerous blood tests kept coming back normal and astonishingly for a neurologist he told me I didn’t need any further tests. Luckily my uncle is a neurologist. He lives in Austria and when I caught up with him he couldn’t believe my then neurologist hadn’t requested NCS. It was quite a battle and I got a second opninion from another neurologist and then went and saw my neurologist again and when the NCS showed pronounced demyelination I changed neurologist.
Regards O
February 9, 2018 at 1:47 pmI wish you all the best. I think when I was having IVIg improvement started pretty quickly. With plasma exchange I feel improvement weeks three and four. My consultant says 40% of cases go into spontaneous remission but I have given up on that! What is a big help if you aren’t one of the 40% is knowing that you aren’t alone. I’d never heard of CIDP/CISP and no-one I spoke to had either so it took a while to get my head round it. What is also a comfort is that there is treatment out there although finding the right one and frequency can be a lengthy and frustrating process because everyone is different. There is even potential remission through immunosuppressants. That’s what I’m hoping for one day but if i’m not that lucky I just have to resign myself. Let us know how you get on.
Regards O
February 9, 2018 at 8:02 amHas anyone been “cured” with immmune suppression?
February 8, 2018 at 10:50 amHi
Yes I imagine you can’t wait for the IVIg and I imagine you will get some improvement. Presumably you are in the States? Does your insurance pay? After that you need to find out how often you need it. PE apart from having a line inserted in your groin each time is pretty harmless. It drains away your plasma and you see it filling up in a bag and it’s dark yellow. Clotting Levels become an issue but it’s all monitored. I have my next PE the week of 26th February but I go into hospital on the Sunday. I wish you all the very best and please stay in touch because I have never come across anyone with CISP and we may be able to pass on useful information to one another. Do you have any idea why you might have got this? I always blame it on chronic stress that I went through. The problem with CISP my consultant has told me is that because it’s so rare no drug company will pay for trials and so it’s trial and error for the patient and clinician. Once you have tried the three frontline treatments (steroids (I know you and I can’t have these), IVIg and PE) you can then look at immunosuppressants but they come with an obvious risk. Do let me know how you get on with IVIg and similarly I will let you know about the Rituximab.Regards O
February 7, 2018 at 5:15 pmI 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.
Regards O
February 7, 2018 at 1:26 pmHi,
Yes I have CIDP (chronic inflammatory sensory demyelinating polyradiculoneuropathy) It is very rare (one case in 1m). I have had IVIg (borderline response) twice, been on steroids (no luck) and now I have plasma exchange every three weeks, originally over 5 days several times, then over 4 (just the one time) and then over three days it three wasn’t enough so I am going back up to 4 days when i’m next in hospital. We’re trying to get funding for Rituximab (not easy) and if we don’t have luck there I will have a Portacath inserted and I think the plan is every three weeks of two days of PE. I get a lot of pain, sharp, cutting in pain, stinging sore feet, pain and prickles in the hands (feet and hands also go purple (autonomic neuropathy), burning, prickles, crawling, tightness and pain in my nose, forehead, head, shooting pains in my head, cutting in pain in my neck etc, tightness, pulling etc around my gums too. I hope this helps. People who respond to PE generally respond to Rituximab which in some cases pushes the condition into remission. It’s a long road! I work.
O.
