GAVol
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July 16, 2008 at 3:01 pm
Hello to all.
Thanks for your responses.Sue, thanks for the article,it was informative and I’ll retain it for reference. I too had the sural nerve biospy, but other than numbness in the side of my foo, I’ve never had any problems from that. I was on 2000mg a day with Neurontin for aboyt 6 months. Hoping to try Lyrica when I see the neuro in two weeks.
Regarding the IVIG Emma, I took it for about 8-10 weeks at home. Since the same company provided the IVIG and the nurse, I assume it was always the same brand. Its been since ’96 so I can’t remember the brand. Initially, I didn’t keep a very good diary. There was no response to the IVIG at that time. Hoping something in my body has changed and I will have a positive reaction this time.
Christie, it is my understanding that the difference between remitting and progressive CIDP is that progressive never entirely stops or goes into remission, whereas remitting does. I may be wrong on this, so anyone feel free to correct me if I have it wrong. I have been on Hydrocodon for about 2 weeks now and it helps, but think I am going to need something stronger, as this has barely put a dent in the pain.
I have never had a full remission since the ’96 dx so I hope Tim is right about pain coming with remission. Let’s hope for the best
I did find Jennifer’s diary and read about her stem cell trip. What a stong and brave person. All I can say is wow!
Good luck to all and thanks for your input. It is appreciated.
FredJuly 13, 2008 at 11:43 amDawn,
Thanks for the reply and information on the stem cell. I was on Rituxan for 9 months. Have not tried Lyrica, but will ask my doctor about it next visit. I would like to visit Jenns site to get more info on her stem cell proceedure. Does she have a www. web site or do I find it on the CIDP site? Thanks again.
FredJuly 12, 2008 at 1:16 pmThanks for your replies. I see many posts that indicate good response to IVIG which is wonderful for those who respond to that treatment. When first diagnosed, IVIG was the treatment of choice, but after about 3 months and no improvement, I was switched to plasma exchange which helped for a while. Then it went to oral steroids for about a year. Imuran, Avonex, Rituxan, and cytoxin did not help so I was then switched back to plasma exchange with 2000mg of cellcept daily and 1gram of IV solumedrol after each plasma exchange. This slowed the progression for about 3 years, but then seemed to lose its effect.
I agreed to try the Tysabri which is an MS drug because it is supposed to effect B cells while the other drugs target the T cells. The progression is still on the move, so I am now wondering if the pain is from the disease progressing. I asked my doctor to try IVIG again, hoping I may have a positive result this time. I have been on Lortab and now Vicodin for pain, but neither helps much. I was also on Neurontin a few years ago, but did not respond to that either.
My diagnosis is Progressive CIDP. This is my first experience with pain. Guess I am lucky as I have read posts on the old site talking about pain. I am frustrated that my doctor keeps telling me that there is no pain with CIDP. Maybe he’ll listen better if I can tell him about the responses from other.Sorry to ramble, but it is helpful to hear from others who have the disease and understand what it is really like.
Hope you guys and your children continue to do well. Thanks.
FredFebruary 4, 2008 at 10:43 amGood luck Steven. Keep us posted on your progress.
FredFebruary 3, 2008 at 12:15 pmLInda,
Please look at my post today to steven about PP. I’ve had a bunch and have learned a few helpful things over the years. PP has worked wonders for me. I hope you read my post. Best of luck to you and feel free to e-mail me if you have an more questions about the procedure.
FredFebruary 3, 2008 at 12:04 pmHi Steven,
PP has kept me functioning at a reasonabley normal life for over ten years now, so I am very high on the procedure. I have had over 350 PP’s since
1986. I have tried many other treatments including oral prednisone, IV solumedrol, cytoxin, imuran, cellcept, ivig, and avonex, none of which helped me any where near what PP has done for me.I realized we all respond to each treatment protocol differently, so what has worked for me may not be the answer for you.
I just want to reassure you that PP isn’t bad. The needles are usually 16 or 17 guage if they do venipuncture, or you can have a vas cath surgically implanted. I had five of those early on, but they all got infected, so I have done the vein deal the past 5 years whith virtually no proplems with my veins. Make sure you are very well hydratred for the procedure as this makes the veins eaaier to locate and the exchange flow better.
My most helpful PP protocal has been a 3 leiter 5% albumin exchange, with 1 gram of calcium glutonate during the PP to reduce any side effects such as numbness and tingling. I do ocassionaly get chills, but a few warm blankest take care of that. They run my procedure over 90 minutes and I have no problems. After the PP I get 500mg of IV solumedrol. Early on, I would be a little tired and “washed out” after the treatment, but that went away after the first few peocedures. Now, when I finish, I get a coke and head to the car and drive home, no problem. I am now doing PP weekly as I have had a bad flare, but my procedures have streached out as few as once every six months when things a calm.
The best news is that they have started using 19 ga cardio caths which are smaller, flexable once inserted and greatly reduce scar tissue at the puncture site and are virtually painless when inserted. If you can, get you doctor to prescribe 2.5% Lidocaine cream. Put a glob on each arm at the puncture sites and cover with large band aid about an hour before the procedure. This makes the arm numb at the puncture site and you feel nothing when the needle is inserted. Also, put an ice pack on the puncture sites a couple of times in the evening after the procedure to minimize brusing. The the day after and each day until the next procedure, rub the puncture sites with vitamine E cream which helps keep the scaring to a minimum.
Hope this is reassuring for you and mostly, I hope you are as successful with PP as I have been. Good luck and let me know how you do.
FredJanuary 13, 2008 at 2:56 pmHi Gabrielle and all,
I plan to talk about Tysabri with my doctor again the first week in March. I will be off cellcept about four months by then. I was concerned about the potential for PML, but the problem appears to be with patients taking both Avonex and Tysabri. My stent with Avonex lasted 9 months with no benefit so I stopped it and went back on PP and IV Solumedrol last year.
I have been lucky in that they have been able to use regular 17 ga needles in my arms the past 3 1/2 years, so my risk has been no greater than for other IV procedures. On a lot of the PP they have been able to use a smaller angiocath (sp?) in my wrist for the return which is nice. When they first began PP I had four vas caths “installed” and all became infected, so I understand that risk all to well.
I do get calcium IV during the PP to offset some of the potential side effetcts. I don’t have the weight gain problem with the pulse IV solumedrol and my doctor says the side effect potential is much lower than with oral streoids.
I’ll let you know about the Tysabri decision. I am also following another post about Tyasbri to see how Shannon does with it.
FredP.S. A hint for those taking IV’s for PP, IVIG or any repetitive IV, rub the IV sites with vitamin E cream every night before bed. It seems to reduce scar tissue build up at the puncture sites.
January 13, 2008 at 1:48 pmJoe,
Thanks for the info. Hope Shannon does well and sees benefit from Tysabri. Please keep us posted on her progress. Good luck.
January 9, 2008 at 2:48 pmHi Gabrielle,
Just read your post to Gene regarding ongoing PP. Am curious to hear what you’ve been told about the long term effects of PP. I have been on PP since 1996, with treatments ranging from once a day for 5 days, to weekly (my current protocal), sometimes I have been able to go monthly, but most often every other week when I am not trying other medications. I take 500 mg iv solumedrol with each PP. In total, I have had just over 350 PP since ’96 and have had no side effects thus far.
I was on oral prednisone for about a year and a half and like everyone else my weight went through the roof. Doctor stopped because of potential kidney and liver problems. From time to time I also get a separate iv solumedrol, 1 gram a day for three days as a “booster”.
Of all the treatment protocals we’ve tried, PP and iv solumedrol have worked best for me. No luck with cytoxin, avonex, imuran, rutixn or ivig.
I am approved to try Tysabri, but have some reservations about the PML potential side effect. Like you, I had GBS (85) and CIDP (95). Appreciate your input. Thanks
FredJanuary 8, 2008 at 12:24 pmBased on the replies you have received about the nerve biopsies, I must have lucked out. I had a sural nerve biopsy from my left foot which confirmed the CIPD diagnosis. I had no problems with the surgery and the only negative, was loss of feeling in an area about the size of an egg on the outside of the foot below the ankle and about 3-4″ toward the toes, which they told me going in, so I was prepared for it. For me its been a non issue. I have had no problems walking, etc., just the “numb” spot. Tissue sample testing was not an option when I had mine done, so I cannot comment on that test. Hope all, goes well for you and keep thinking positive!
January 8, 2008 at 11:53 amHello everyone. I’ve been off the site for some time now, but have been reading recent postings about Trsybri and Cytoxin. I have been accepted into the one touch program and was approved by my insurance company to try Tysabri, but after extensive research about the potential PML side effect, I’ve postponed this treatment until I see my neuro in March. It is made by the same company that makes Avonex, also an MS drug. I used this for nearly a year with no results so we stopped it. Cytoxin was also used for 11 months with no positive results, which seems to comfirm that we all react differently to diffrent treatment protocals.
I’ve had relapsing CIDP since 1986, and we’ve tried about everything out there. Tysabri is on the table now because it has been showing very positive results in several MS studies. My neuro runs one of the one touch programs, so I have made an list of additional questions I need to have answered before I go ahead with the treatment. He has stopped my Cellcept in preparation for Tysabri as patients with compromised immune systems or who are taking immuo suppressants are at higher risk for PML.
If any on you who may be considering Tysabri have any questions that your physicial has not been able to answer, I will be happy to add them to my list.
It’s good to be back on the site. My best to all.
