October 11, 2017 at 2:33 pm #113392
Hello to all,
I was diagnosed with CIDP 2015. It was a big damaging event. IVIG assisted but I had damage to nerves/axons that is permanent (had to quit working because of the disability).
My question is this? Have any of you experienced smaller relapses that don’t quite build up to the big initial onset or other “big” attacks? I seem to experience “tiny” relapses (some would say, episodes). I’ve had two specialist and they seem helpless or clueless as to what and why? I just want to know if this is common or usual for others diagnosed with CIDP (or variant). I am on my second round of IVIG after this last “event” which seemed to kick in after I ran a low-grade temp with no other symptoms for about 2 days in early Sept. Thank you to anyone with some insight and for sharing. Andra MarieOctober 11, 2017 at 3:23 pm #113393
Why are you not on IVIG routinely for your CIDP? I need to get it every 5 weeks or I have symptoms. I tried to push out to 6 weeks and all the sudden I had weakness, tingling, and other symptoms. Went back to every 5 weeks and I function normally. So I just keep getting the IVIG routinely and don’t have any problems.October 11, 2017 at 6:51 pm #113394
Insurance does not always want to pay $$$$. Staying on it is not always best for every patient. Everyone is different. Second Neurologist is cautious.
IVIG is harsh on kidneys and it’s only helpful with some symptoms and will not repair permanent damage etc.. Thank you. Best wishes.October 12, 2017 at 12:32 am #113395
Although I have had CIDP since 2013, I am only becoming aware of the implications and diverse symptoms of this disease thanks to the Forum. My experience has been that the Neurologists do nothing to enlighten you about the disease because they know so little themselves. “You have blah blah blah and this is what we will prescribe. Have a nice day.” I am on my third Neurologist who finally is on board with learning and seeking proper treatment. I have been cruising on Prednisone all this time and for the most part it has controlled the symptoms and I have been reasonably functional. Fatigue is a separate matter.I have incurred some permanent nerve damage but still get around fairly well. Glad I do not have to work. Helps to be retired. There have been minor flare ups that have been treated by boosting the Prednisone and then lowering the dose gradually. That is until recently. I was experiencing severe pain that started gradually and increased over the course of a week. I contacted my Neuro who fit me in within a couple of days. He immediately boosted Prednisone to 60mg every other day which has helped. Although he prefers Prednisone, he is scheduling me for Home IVig. 5 full days to start and then determine what is necessary after that….assuming all goes well. He has treated patients with IVig not just for CIDP. I informed him of the Foundation and he was grateful for the information. I am standing by waiting to hear if my Insurance approves and when the home treatment will begin. I don’t even want to think about the cost if it is approved. If it works what choice do I have? I have seen information about Subcutaneous IVig which seems interesting. Being alone, this whole experience has turned my life into more than my worst nightmare. Finding the Forum gives me hope and a better understanding of what is happening. Thanks to all Participants in the Forum for your input.October 21, 2017 at 12:01 am #113419
Pretty sure IVIG is FDA approved for treating CIDP, so if insurance declines, suggest appealing their decision. You will find the same is true for plasma exchange should the IVIG not help and doctor moves to PE. I was diagnosed in 1996 and have been through this a few times and won each appeal, so persistent. Good luck.October 21, 2017 at 6:52 am #113421
Thank the great powers that be for the Foundation website. In particular the Forum. I wonder how many uninformed Candidates there are out there stressed and struggling. Neurologists are not much help in this regard. Since I found this site I have been informing my Neurologist about the Foundation and any matters of interest. He is a good man and open to help.
In any event I am about to embark on my first IVig this Monday. Insurance, Humana, was a slam dunk approval. It will be 40mg of Previgen at home for five days and then 40mg one day every three weeks. Seems to me that this will be a lifelong process of taking the med. So what! Beats the alternative (if the ins. continues to pay)Until now I have been on Prednisone for over 4 years. Previgen has only been approved by the CDC for a couple of months but has been around for a while in other countries (of course). It is less harsh on the system, supposedly, but still has its potential side effects. Ya know, I took statins for years and now they suspect that may have contributed to my CIDP. There is not a shopping market full of choices. You start getting into maybe this or maybe that or a combination of the two. Most importantly get a Neuro that has as much experience as possible. Not easy! I am pretty fed up and hope the IVig will turn things around. I have lost some of my leg strength, but hope to salvage what is left. I can get around a bit but the pain in the feet and legs starts in about ½ hour.
As an aside I attended a Chapter Meeting in Atlanta a week ago. It was a fantastic learning experience and a chance to meet other CIDP and GBS patients. I strongly suggested keeping your radar tuned for one near you.
Good Luck to you. Each of us has to fight our personal physical demons defined under the same umbrella.
The volunteers cannot get enough accolades for the work they do !!!!!October 21, 2017 at 6:26 pm #113422
GAVol, I think the use of IvIg for GBS and CIDP is “off label,” but it is nevertheless generally accepted.October 21, 2017 at 8:38 pm #113424
I think the use of IvIg for GBS and CIDP is “off label,” but it is nevertheless generally accepted
At least for CIDP, I think IG is FDA approved, at least for some brands. As for insurance, you can appeal denial, but search their medical policies online for IG and CIDP. It was listed as allowable treatment in mine.
.November 3, 2017 at 9:49 pm #113481
I have begun the Ivig process. The initial load was five contiguous days. I tolerated it well. Since the infusion was completed on 10/27 I have felt worse than I ever have. Is anyone aware that that this can happen. How should I feel? Same, better, temporarily worse? Other? I was told by my Neurologist and Infusion Service that the decision process to proceed for each phase is entirely mine. I want to be sure I have as much knowledge as I can gather. This should not discourage anyone about to embark on this process because each person is different. .
Retired, five years on Prednisone with flare ups (pain), still can walk, balance on each foot. have feelings in feet, never fell, work on small home projects. Recent flare up not responding as well as in the past. Decided to try IVig.November 4, 2017 at 8:37 pm #113485
My initial IG was also a 5 day TX. I tolerated well and no issues other than some headache. I saw considerable improvement by day 4. Everyone is different. Have also read some do better with some brands of IG than others. Did not feel worse afterward, but these days get kind of tired after infusions.
Prednisone does nothing for me except nasty side effects.November 5, 2017 at 11:27 am #113489
Thank you BryanF and CER100. My name is Bill F. I can’t thank you enough for your responses. I have begun day 8 today 11/5. As of yesterday I was still miserable and discouraged with a lot of pain. I noticed that Anxiety is a definite trigger for me. Going to hang in and hope. Dr. and Visiting Nurse both said I must have lots of hydration and calm down.
I am extremely grateful for this site, and It would be nice somehow if the system was able to organize not only by topic but by other CIDP types. I looked and I found we have about 14 active CIDP Participants…. Sadly how many more CIDP patients are out there not knowing this Forum exists. Considering that this is available Nationwide there are not many people involved. I think what also happens is Participants start feeling better (hopefully) and no longer visit the site. Alumni so to speak. Its too bad because they could offer so much of their experience.November 6, 2017 at 12:10 am #113492
Hydration has been stressed repeatedly to me with the IG TX. I’ve been told to do so the day before, day of and day after. Also not just H2O but include electrolytes. It seems to help with the headaches.November 6, 2017 at 7:34 am #113493
Thanks CER100. Ironically Headaches have not been an issue for me. At best some minor headaches periodically but I have had hypertension for many years and I think the stress had more to do with it. As Participants say, everyone is different, BUT WE ALL HAVE A COMMON THREAD. Besides Hydration, I will include electrolytes going forward. Certainly no harm. Taking a 5 day prescription of Valium to calm me down also helped smooth out my body chemistry. I know that all addictive drugs should be taken with caution and only as needed of course.
Thanks to the feedback from the yourself and other Participants I have decided to keep up the IV’s and in fact yesterday was the first day that the pain subsided and I started to feel better. That would be 8 days after completion of infusion. That might help others who experience what I have. I am a very anal person and need to have answers. Patience is not my Virtue.
I know everyone wants to protect their privacy these days but I think it helps further to give some sense of connection…
Acceptance76 is Bill F from GA/FLNovember 6, 2017 at 9:55 pm #113495
Hi Andra Marie and you too Chirpy if you reading the responses. Jeff in Houston here. Been a while since I have been on the board. I had somewhat the same question? I am almost a year in with my cidp (Dec. 4) and have been getting iVig every 2 weeks since early Jan. of 2017. My treatments of Gammunex (sp) have not been particularly eventful like they are for some. I sometimes notice no difference in my condition and other times feel a bit of a bump…until this last infusion. Our home was destroyed by Hurricane Harvey (yes, not a good last year for me 🙁 and we are still salvaging what we can from the house. I spent a couple of hours the evening of my latest infusion cleaning some exterior pots and a set of wind chimes. I then felt a tightness and bloated feeling in my stomach followed by a severe headache. That led to what is hard to explain but from my head to my toes it felt like I was being electrocuted with stabbing pains, not unlike how my first symptoms were when this all started but also different. I tried a hot shower and then lay still but it just got worse. After about 4 hours I gave in to a Tramadol pill (I have taken 4 of these since this all started, not into pill taking) and it calmed everything down. Next day I felt like I had been in a car accident, sore muscles, lingering headache but a whole lot better. A day later back to where I was before the infusion. I only would have a minor, short headache after infusions, nothing like this time. I believe my cidp has been the slow progressive type, although my neuro does not believe in different “types” of the illness. It has taken almost a year for me to feel the soreness in my knee and hip joints. I still maintain daily living skills such as work but not without the daily bouts of tight calf muscles and burning inflamation in my upper leg muscles. But either I have gotten used to it or it is just not that bad. I hate to even complain given what others are dealing with but I now have 2 or 3 questions for those like me and if others might have any insight. So Andra Marie, I would say I had my first “major” relapse but probably have had smaller ones over the last year. My questions are 1) Has anyone experienced an episode like I describe above? 2) My white blood cell count has dropped quite a bit to below normal, nurse says iVig can lower wbc but sending me to a Hematologist to check things out. Anyone one else have the same issue?, 3) Is it time for me to find a good physical therapist to work on the joints and muscles? I feel better after long walks, and finally has anyone else had success with Tumeric supplements for the inflamation? (ok, sorry that was 4 questions) Chirpy Birdy, you were so nice to me when this all started, I am happy for you that your every 5 weeks regimen has kept you sympton-free and hope that can be me someday. Brian F, if you are reading, sounds like you are hanging in there as well. Take care everyone and share if you can. Good luck Andra Marie (We need another Houston chapter meeting!:)
Jeff (fellowcidpguy)November 7, 2017 at 7:58 am #113497
FELLOWCIDPGUY…. Hello Jeff (Andrea Marie and Chirpy). Before I begin I don’t think that you need to apologize for complaining. I hope that is what the Forum is about. It sounds like you are relatively new to CIDP and you should protect yourself in any way you can from further progression and try to be comfortable where you are. I have only recently been involved in the CIDP Forum (Oct.) and continue to learn so much thanks to your recent post and several others as well. It is similar to another Support Group which has helped me tremendously to overcome another challenge for over 20 Years.
I am not that far along to help with my experience with IVig as has been indicated in my earlier posts (although 4 plus years on Prednisone). In addition to my learning as much as I can, I am hoping that by telling my experience as I go through IVig (starting 10/23/17) to providing updates. It might help someone else that might experience the same thing but not intended to mean that applies to everyone. It can be intimidating not knowing what to expect. I have been using a Visiting Nurse, which was recommended in the Posts, and that part of the process has been a positive experience.
I have a great Neurologist who is overworked but is willing to do research and think out of box. He is willing to listen to what I bring to the table. I have fired two because I was not satisfied with their generic approach for treatment and lack of providing information. I don’t know if I like the answer “there are not different types of illnesses”. If your Neuro is referring to within CIDP, I would beg to differ. Just my opinion.
Tumeric is something that I would also be interested in learning about along with other supplemental medications. As to Cramps/Spasms, I have been involved in athletic activities most of my life, and PT seems to be something that has to be approached with care. Unless they are knowledgeable about how to approach CIDP patients they can cause unnecessary discomfort. Stretching is good, no doubt. When I have spasms, usually during the night, I apply large heating pads to the backs of my legs (low to med setting). It usually works. I recently started sleeping on a heated mattress pad which has held spasms at bay. Of course overdoing it will bring it on for me.
As an aside, I am so sorry to hear about your home being destroyed. Oh No HoustonI I have a home in FL on the East Coast and managed to escape any significant damages this past season. It’s like “who needs this?” when you are already battling CIDP ! You sound resilient. I believe that a lot of things can be replaced but the items with sentimental value are the real treasures. Hopefully you have been able to recover many of those.
THANKS AGAIN TO EVERYONE PARTICIPATING IN THE FORUM. NEWCOMERS STICK AROUND AND LET US KNOW HOW YOU ARE DOING.
Phew. OK I’m done.
Acceptance76 Bill F GA/FL
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