Recent CIDP diagnosis
February 18, 2018 at 4:31 pm
I was recently diagnosed with CIDP and registered on this site, and I’m not sure where to start. There’s a lot of information here!
Around last October, I started noticing persistent numbness in my toes (both feet). I went to my regular doctor after Thanksgiving, and he ordered a nerve conduction study, which showed neuropathy in both legs. A friend of mine who is a doctor sent the study results to a neurologist he knew, and his initial diagnosis was CIDP. I then went to see the neurologist in mid-December, and he did a lumbar puncture and blood tests, and started me on Prednisone right away while waiting for the test results. The lumbar puncture showed that the protein in my spinal fluid was at the upper end of the normal range, so he felt confident about the CIDP diagnosis.
So in mid-December, I started taking 60mg of Prednisone per day, dropping by 10mg per week. I saw him again a month later when I was about to drop to 20mg/day, and instead, he told me to take 40mg every other day for a month, then 30mg every other day for 2 months. (I’m in the middle of the 2 months right now.). My first question to throw out there would be: is this typical? The dose seems lower and the tapering faster than what other some other people are doing.
In November and December, my symptoms had progressed from numbness in my toes to pins and needles, pain, feeling like ants were crawling on my feet, burning, and other sensations, and it had spread from my toes to the balls of my feet and into my arches. After 10 weeks of Prednisone at the doses I mentioned, it is somewhat better. Mostly back to just numbness in my toes again. I’ve had occasional, minor symptoms in my hands—it seems to come and go. I don’t notice any loss of strength in my feet or hands.
I’m a cyclist, and I’ve been riding my bike mostly indoors on a trainer in my dining room. I have no problem riding for 45 minutes to an hour, although I had to buy bigger cycling shoes to give my toes more room. Shoes or even socks that are a little tight make my symptoms worse. Also, when my feet get hot, that seems to aggravate it. Is this common?
My last question: does anyone have experience with a liquid supplement called Nervestra? I thought maybe it was helping at one point, so I’ve been taking it a couple times a day all along. I can’t really say for sure if it’s making a difference, so I can’t really recommend it to anyone. I guess the only way to find out is to stop it and see if there is a dramatic change. But my symptoms seem to vary from day to day anyway, so it’s hard to tell.
Any advice would be greatly appreciated!
February 19, 2018 at 12:46 am
The tapering of the Prednisone does seem rapid to me, as I took it for about a year, as I recall. But treatment for CIDP must be individualized, as there is a lot of variation in cases and in how individuals respond to various treatments. Some people have trouble with Prednisone, but it never bothered me. As the Prednisone was tapered down, I was put on My ophenolate Mofetil, which I took for two or three years (I forget, exactly).
It is common for symptoms to persist in the feet. My case is not active, but I have permanent residuals in my feet. At home I seldom wear shoes or socks for that reason. When I am out, I can walk normally but the more I walk the more my feet hurt. I just live with it.
February 19, 2018 at 8:54 am
Have you talked to your neurologist about trying IVIG as your treatment? I first started on Pred when I was first diagnosed and I didn’t see much improvement and I HATED the side effects of Pred… side effects to me were almost worse than my CIDP. So my neurologist started me on IVIG (immunoglobulin IV). I was started on the loading dose recommended for my body weight and then over time slowly tapered down the dosage and I have been able to increase the time in between my infusions. I am lucky as my insurance covers the infusions. I also have not had any side effects at all except a mild headache and feeling a little tired for a day or two after the infusions. I am not in remission but as long as I get my IVIG every 4 to 5 weeks I don’t have any active symptoms of my CIDP. Since I started IVIG pretty much right after I was diagnosed my body didn’t have a lot of time to attach and cause permanent damage to my nerves. I am hoping to go into remission one day but as for now, if I stop the IVIG I get symptoms again. My doctor said some people’s CIDP burns itself out over years and years… I am hoping I am one of those people. I was diagnosed in March of 2011 – due to a H1N1 flu vaccine I received. I have been on IVIG for 7 years now and doing good. I get Gamunux C 10% solution. Everyone reacts differently to IVIG and some people have side effects and for some it doesn’t product any good effects but I really think it is worth a try if your insurance covers the infusions. I get to forget about my CIDP for 4 to 5 weeks and live my life pretty much as i did before the diagnosis. Just a little bit slower as I do have some mild weakness in my muscles. Good luck.
February 19, 2018 at 11:11 am
I have never been prescribed Prednisone but I received IVIG of Gamunex every 3 weeks since November and by the end of the 2nd week just prior to next infusion I usually can tell it is time for a fill up. I notice I don’t walk as smmothly as I do a few days after each treatment.The main residual I have is the burning and tingling of the feet. The shoes make a huge difference. At work I switch to Sketcher GO Walks when they are bothering me alot. It is in violation of the safety rules but I get away with it so far. I don’t think my feet will ever be normal but i can live with that. So many have to live with pain. Mine is more of discomfort since I don’t have normal sensations in the feet.I wish all well and successsful treatments.
February 19, 2018 at 9:49 pm
Thanks, everyone, for the input and good wishes! This is a new world for me. The good news is that today, I got an appointment at the Vanderbilt University Medical Center for a second opinion. It is a Center of Excellence for treating CIDP, and it’s about a 2 hour drive from where I live. The bad news is that the appointment is 4 months from now… But at least I’m on the calendar.
Has anyone noticed whether or not alcohol makes the symptoms worse? I enjoy a glass of wine almost daily, but that would be easy to give up if it made a difference. I might try going without it for a week to see if I notice anything.
My CIDP hasn’t progressed to the point where many people are on this forum. I hope there are better days ahead for everyone…
February 20, 2018 at 10:33 am
Alcohol is a known contributor to nerve damage. However, that result seems more appropriate to chronic abusers, not occasional users. Personally, I totally stopped alcohol intake. Of course, you’d likely never know the result because there are too many other variables.
Good luck with your 2nd opinion.
February 20, 2018 at 5:17 pm
Regarding alcohol, I have a link from the Scottish NHS, somewhere, where they address alcohol consumption and CIDP. Basically, they said, since CIDP already affects your balance, excessive drinking will make that worse : ). Moderate alcohol consumption, they went on to say, was just fine.
My original doctor started my on 80mg of prednisone in December of 2017. It really never helped me and I sought a second opinion in late March of 2017. My current doctor started me on regular doses of IVIG in April of 2017 and he also started tapering the steroid doses. Happily, next week will be my last week on Prednisone!!!!! Hopefully then I can get rid of my fat face and belly.
As a precaution, once I’m off steroids, he said he will continue the IVIG treatments as is to make sure the CIDP stays in check in the absence of prednisone.
Overall, my arms and hands seem to have healed rather well. I still have some residual weakness in my calves, and my feet at the end of the day hurt with the added bonus of numb toes.
At this point, I think the numbness in the toes and foot pain is here to stay. The other issue I have is fatigue. I built myself up to handling 8, even ten hours at work, but after that I am worn out. I often go to bed to at 7:30 or 8 and get up at 5:30am. I find 10 hours of sleep allows my body to recuperate to an extent.
But, at the end of the work week, my day off is a lost cause, as I need to rest and rebuild my strength.
This is the damnedest malady I’ve ever had. I’m grateful that I progressed from not being able to walk to now resuming a 50 hour work week and being able to meet the physical needs of the job once again.
I think, though, I will have to come to grips with my foot pain and fatigue as the long term effects of CIDP that just will not go away.
February 21, 2018 at 11:27 pm
I think alcohol makes my symptoms worse. I drank a few days in the week before a flare in early 2017, so I quit drinking for nine months. Around the holidays this year, I tried to reintroduce at under a half a glass at a time and I felt like some of my symptoms had a minor flare. I may be off the sauce for good. On the upside, at a cocktail party, I can eat more snacks knowing I’m not drinking the calories 🙂
February 23, 2018 at 8:45 am
BryanF, I’m with you on the fatigue. I drink lots of coffee in the morning to get going but it just doesn’t do it for me. I am especially fatigued 3 to 4 days after my second day of infusion. unlike you, if I go to bed early i wake up too early and can’t go back to sleep, I get up at 5:30 AM and usually fall asleep around 9:30PM but I am still fatigued almost constantly. My bloodwork is all normal and indicates no vitamin/iron deficiency. I’m trying to learn to live with the fatigue but I find it more and more difficult with still working a full time job. Thank God for my wife who takes care of all the housework and doesn’t nag me to do things when I need to just rest alot on the weekends.
February 23, 2018 at 9:15 pm
dsfritz1-my neurologist explained to me that the muscles are atrophied and thus get fatigued rather quickly, thus giving us our run down feeling. As you heal, things should get better.
And in hindsight, they have. When I first went back to work, I was shot after 4 hours. Now I can tolerate 8 hours.
Progress is incremental. Its there, but it is hard to see until it has accumulated over the months.
Best of luck in your recovery
March 12, 2018 at 8:29 pm
Hi John, My name is Jeff and I live in Houston. Was diagnosed like Bryan in December of 2016. It helps me to follow Bryan’s progression as we started our lives with CIDP at the same time. At the beginning for me, it was the unknown that was so hard to understand so all the folks who have replied to you here helped me quite a bit. To just understand more and really to accept more. I was never prescribed steroids, which I am thankful for, and what has worked for me has been the drug Lyrica to control what Chirpy Birdy calls the creepy crawleys that the nerve activity can cause. I get IVIg infusions of gammunex once every three weeks. Takes about 3 hours. Everyone is different with their symptoms but it helps to hear from others that for whatever reason got this rare condition. A positive attitude is important but there will be times that you will need to play the “why me” card and that’s ok. Just know that for most on this board things have improved, slowly but surely. It is a shame that it takes so long to get into to see the experts and I was lucky to be diagnosed early. I think it is why I have not had it too bad and I have improved within the first year. If you have questions, get on this forum and ask. My questions were also answered and at times helped talk me off the ledge. Good luck with the CIDP expert meeting, hope you find a doc that helps you.
March 15, 2018 at 9:46 pm
Hi, Jeff. Thanks for the reply! I’m still trying to figure this out, and answers are not coming very quickly. I’ve only seen my neurologist twice: once in mid-December for the tests/diagnosis/start of treatment (Prednisone), and once a month later to check my progress. I was supposed to have an appointment with him earlier this week, but his office called and cancelled it. They rescheduled it for sometime in May (!). In the meantime, I did manage to get an appointment at Vanderbilt University, which is a “center of excellence” for treatment of CIDP, but the first available appointment was in June (!!!). So I’m hoping that things don’t get worse in the next couple months…
As I mentioned in my first post, I started having symptoms in October of 2017—numbness in my toes. The symptoms got much worse in next couple months, as I described. I started on Prednisone in mid-December, taking 60mg/day for a week, tapering down by 10mg each week. After a month of this, at my 2nd appointment, the neurologist told me to take 40mg every other day. After another month, I dropped to 30mg every other day for a few weeks, but had to go back up to 40mg because my symptoms were getting worse. I’m still at 40mg every other day right now.
I have to say that overall, my symptoms have improved since November/December. I don’t really have pins and needles, burning, tingling, the feeling of ants crawling on my feet, electric shock sensations, etc. anymore. What I have now is mainly numbness in my toes and in the balls of my feet, and my toes ache a lot. I also have the constant sensation that my middle toes are being bent or pulled. The more I walk, the worse the discomfort. Also, the warmer my feet are, the worse it is. I am most comfortable in bare feet on a cold floor. I have had occasional symptoms in my hands, like tingling in different fingertips, but this has mostly gone away.
From reading other people’s posts on this forum, my symptoms have been very mild in comparison. (At least so far.) I have not noticed a loss of strength in my feet or legs, and I am able to ride my bike on an trainer indoors for an hour with no problems. I don’t feel fatigued at all when I walk a lot, just increased pain in my toes. I had to travel recently, and ended up doing a lot of walking in airports. My watch said I did almost 12,000 steps on Tuesday, and I felt OK at the end of the day.
I can live with the side-effects of Prednisone at the dose I am taking now, but I hope I don’t have to take it for a long time because of the long-term effects. I just had my annual physical, and my total cholesterol went from 190 a year ago to 246. My doctor said he believes that is from the Prednisone.
So I feel like I’m in limbo here waiting months for another appointment and hoping things don’t get worse again. I guess I’d like to learn more about any lifestyle changes I can make that might help—diet, exercise, etc. Any suggestions?
Thanks everyone for your input!
March 16, 2018 at 1:17 am
johnc, the dosage of prednisone is usually tapered down over time. I took it for about a year, but at the end the dosage was very small. During that time I was also taking mycophenolate mofetil. That drug takes awhile to take effect, which is why I was taking both at once. I continued the mycophenolate for two to three years after going off prednisone, reducing the dosage every six months.
March 19, 2018 at 8:52 pm
It appears that IVIG is the preferred treatment, seems to me that I read that stem cell treatment is being considered.Any comments on this?
I start my IVIG 11 April and am looking forward to it, fell last night in the bathroom, it took my wife and I 15 painful minutes to drag me to a place where could stand up and shuffle back to bed…….PeteM
March 20, 2018 at 12:56 am
Stem cell treatment is still in clinical trials as far as I know, and it is not available to everyone.
March 20, 2018 at 8:27 am
I was looking into Stem Cell Treatment but my neurologist said that he thinks that it would not be a good choice since I am doing good on IVIG. He said that they are seeing remarkable improvements with patients but that the risk of the high doses of chemo that is required for killing off the immune system is with high risk of other, life-long bad side effects on your body. He also said that some people go through SCT and don’t get any relief. So for someone who is doing good on their current treatment, he thinks it is too much to risk. But he does agree that they are doing great things in their research of SCT but for now the drugs used are so hard on the body. So i backed off and am just following the progress of SCT. I would love to someday stop my IVIG treatments but I guess right now I am not willing to take the risk of other complications due to the chemo drugs since I do have other options. So just do your research if you decide to look into SCT.
March 23, 2018 at 1:01 am
At the GBS/CIDP regional conference I attended last fall, the panel all agreed one should stay away from SCT at this time.
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