CIDP Diagnosed / Recovered / My Story
December 29, 2019 at 2:27 am
I hope my detailed experience will help someone here in the forum. I feel very fortunate things have worked out for me the way they have to this point. As of this posting I have been working out hard at the gym 5 days a week for over 2 weeks. I lift weights and do 5 miles of cardio. Generally 1 mile on the treadmill and then 4 miles on an elliptical.
My baseline will go back to April 2018 before I went in to have surgery done on my right shoulder. I was about 200 lbs and didn’t workout much that year due to remodeling going on in my home. In 2017 however, I ran over 900 miles outdoors and even ran a 5K in under 21 minutes during the summer of 2017.
April 2018, I had shoulder surgery and followed up with the suggested physical therapy (PT) that went along with it. Full recovery was 8 to 12 weeks. I was good at about 8 weeks.
June 2018, I went for my first run 2 months post-surgery and about a mile into the run I felt buzzing on the bottom of my feet similar to your foot falling asleep. I brushed it off and thought it was because I didn’t run for 6 months. Continuing through the rest of the summer, I started having the feeling of numbness on the bottom of my feet and tips of toes.
Fall 2018, I started to feel my fingertips buzz. I started seeing my chiropractor and massage therapist thinking that would resolve things but it didn’t. As it got worse I contacted a neurology department and made an appointment with whoever I could get because most wait times were like 6 months! Luckily I got a guy in a month.
December 2018, met with a neurologist and he ordered basic blood tests and Xrays – both negative. Also ordered an EMG NCV. When I called to make an appoint for the EMG it couldn’t be done until late January 2019. My mindset was I’d have to pay a new deductible so I didn’t make the appointment. I did some PT at the end of December which seemed to give temporary relief. I’m thinking I have a pinched nerve.
January 2019, coached boys basketball and as I ran up and down the court I would roll my ankles often and chalked it up to getting old. I was 49 at the time. I was playing indoor softball and couldn’t run very well anymore and had to get out of the outfield and started catching and needed a pinch-runner.
February 2019, started more PT still thinking this is a pinched nerve type issue.
March 7, woke up with great weakness in my legs and I knew at that point something was very wrong! I contacted my neurologist and scheduled every test out there. EMG NCV, different blood tests, MRIs and spinal type. I was able to get all of these tests done within a month and I was a classic case of CIDP. Presented bilaterally, EMG NCV positive, and elevated protein in spinal fluid. My neurologist was a trama brain guy and didn’t have much experience with CIDP, so I was to be transferred to a specialist.
— Below is primarily edited notes I shared with my doc so I could track my progress.
4/6 – I woke up at about 3:40 AM with my left hand in a buzz. I got up and it took over 20 minutes before it got better but was left with a residual amount of buzz that is greater than it’s been before. If it didn’t get back to that point I surely wouldn’t be capable of doing my job anymore. I had movement of my hand but the feel dropped substantially during that time. An hour later as I tried to go back to sleep I had moments where my left hand was starting to decline again.
4/15 – I met with my new specialist and he gave me the options of Prednisone followed by an immunosuppressant drug, IVIG, or Plasma exchange. My online research made me believe Prednisone would be a good choice and he agreed. I started 80 mg a day that day.
4/18 – Started day 3 of 80mg Pred today. Feeling less tingling today and hopeful upper leg strength will get better over the next couple weeks. No side effects so far. Been able to sleep but have woken up after 5-6 hours but my energy level is great throughout the day so far. I’m expecting I’ll be able to do 80mg for 2 weeks.
4/22 – Today is day 7 of 80 mg Prednisone. No alarming side effects at all. Even insomnia subsided after 3 days. My energy level is fantastic. Numbing and tingling have continued to decline. Balance and endurance seemed to start to improve on day 6, so looking forward to potentially full strength at some point. Staying on 80mg for week 2 and plan to drop 10 mg every 2 weeks.
5/15 – 1 month update. At 60 mg pred. now. Overall stable, improvement hasn’t changed too much over the last 2 weeks. While the tingling at the fingerprint area was a small (5%) of issue, that hasn’t changed much. Numbing tingling of feet improved over that first 2 weeks significantly and has remained about the same since. Feet are at levels of a few months ago. Upper legs seemed to have plateaued. Around my last appointment 2 weeks ago I had a 24 hour period where they seemed a bit week and had some buzzing. This occurred again yesterday after 2 weeks of level off. Leg issue focus area is quads and hip flexor. Next appt. is in 2 weeks.
5/21 – 5 week update. I will see the doc, Wednesday, May 29th. Started the Cellcept on Saturday night, May 18th. at 500 mg twice a day. Since dropping to 60mg Pred a week ago, I don’t feel quite as good as I did when I was at 70 and 80. Numbness on the bottom of feet increased slightly, buzzing in thigh areas has occurred from time to time, muscle cramping in calves and shoulder traps. A new thing I have been experiencing for about a week now is a buzzing type feeling in my arms, mostly left from about mid tricep towards fingers.
6/4 – I went back to 80 from 60, May 30th. Better but not 100%. Occasional buzzing in left arm median nerve area and minor numbing bottom of feet, numbing increases slightly when I wake up mornings as the dose from the day before wears out. The biggest problem is the lack of motor function in hip flexor and quads, just not getting the power back, 7 weeks into treatment. Seems like 80 mg keeps me level at best but not allowing me to “heal”. I’d really like to try 100 mg if you think we can? I’m also only on day 17 on Cellcept. How do you feel about trying 100 mg of Prednisone for 4 weeks and then slowly taper to 0? The 8 to 12-week mark of Cellcept at 500 x2 daily will be mid July – mid Aug.
He agreed to 100 mg of Prednisone but also increased my Cellcept to 1000 mg twice a day.
7/1 – Scheduled check-up, and was doing well. He said it was time to start tapering off the Prednisone to avoid worse side effects. I started at 90 mg that day and planned to taper 10 mg every 2 weeks.
7/17 – Condition is still improving slowly. Feeling overall very well, but not feeling like I can really do running yet. Might try soon. Occasional tingle in left arm still but seems to appear most often when I sit in a certain position at my kitchen bar stool. Tapered to 90 pred after meeting, now at 80 as of this past Monday 7/15. Fingers seem normal, toes normal, the bottom of feet has minimal numbing. Upper leg weakness would be most noticeable on stair climbing and running. Will continue to taper 10 mg every 2 weeks.
7/28 – This update is important. We are at the end of July. Monday, July 29th I drop from 80 mg Prednisone to 70 mg. The biggest thing to note right now is I feel very similar to how I felt when I met 2 appointments ago when I was also at 80 mg. That’s a feeling of functioning but not winning. When I saw you 2 months ago we bumped up to 100 mg for a month then started tapering, went to 90 for 2 weeks then the current 80 mg. I felt better at 100 and 90 than I do 80 for certain. I am also 8 weeks in at 1000 mg Cellcept 2x daily with a prior 500 mg 2x daily for 2 weeks before that.
I have more buzzing in my arm, more weakness in my upper legs and more muscular tightness in my traps, back, neck area after being at 80 mg for 2 weeks than I did the previous 6 weeks. I am concerned that as I start 70 mg now and continue with this taper every 2 weeks I am not going to get the results I am hoping for.
I want to get off of the prednisone for sure as it altering me physically. The Cellcept is also causing bruises and scratches a much longer period of time to heal, along with hair thinning and I have had a minor sinus infection that has lingered for 2 whole weeks already.
Maybe we introduce IVIG and continue to taper Prednisone and continue to take Cellcept? Come up with an initial plan for IVIG, followed with a regular maintenance dosage (example once a month).
(So at this point I had a standing order to start IVIG if I wanted, fortunately, I didn’t have to ever use it as I started to get better) I was panicking and glad I never did the IVIG.
8/14 – Just a progress report, down to 60 mg as of Monday and interestingly have felt the best the past 3 days. Never started IVIG. Never got a call from the center to schedule but that is actually okay. I think it is best to hold off on that for now but if it is already preapproved then that will be good to have on standby in the event this condition takes a hard negative turn.
8/29 – Progress Report: Doing great, very happy to be tapering quicker. I actually have felt like my dosage of Prednisone was too strong and increased the taper rate to 10 mg every 7 days now. Having perfect results. At 40 mg since Monday, will be 30 mg this Monday. I will be finishing 20 mg right when I see you next on Sept 16.
Near zero tingling day to day, and only slight “numbness” is on the “balls and heel” of my feet. More pep in my upper legs day to day but they do get tired as I work them throughout a long day. I suspect this will continue to improve.
— End notes
Late Sept., I tried to go running, planned on going only a mile really slow. Started out and was super tired only after an 1/8th of a mile. I pushed it to 1/4 mile and then rested. I did the same to return home. I did the same the next day and had the same results.
October 2019, Symptom free! I was off of Prednisone completely by mid-month and I was doing PT again since September. PT for me was a way to force me to workout. My balance and sensory were all back to normal but just couldn’t do the cardo yet. The muscle wasting from the steroids definitely took its toll. But my CIDP was in remission and my nerves had healed a bunch.
November 2019, didn’t do a whole lot, no PT. Still on Cellcept, 1000 mg twice a day and will expect to be on it for a year or even longer. I experienced joint pain which was probably from being off of the prednisone. I knew at some point I’d have to start working on getting back into shape.
December 2019, started PT again to try and get motivated. Mid-December the “switch” went off in me and I started working out again all the time and have been making huge strides.
12/19 saw my specialist and had another EMG NCV test done, I needed this to go back to work for the field that I am in. After he looked at the results he was amazed and said I made a “remarkable” recovery compared to my tests in March and May. Essentially my motor nerves were near normal levels.
This is a link to my workout page if you’d like to see what I do and follow me. https://www.strava.com/athletes/13532466
So as of today, I basically can say I feel normal again. I take the Cellcept and that’s the plan for the foreseeable future. I think there is a lot of timing that had to occur between medication usage and dosages along with the time for your body to actually heal. Nerves take a good 6 months to heal. My full recovery was really about 6 months after I requested an increase to 100 mg of prednisone to really try and knock this disease down. The Cellcept is doing the job for me very well and has no noticeable side effects.
I hope my story is an inspiration to someone out there. Best wishes to all of you out there.
December 29, 2019 at 4:03 pm
Great to hear about your progress! Congrats. Thanks for posting such a detailed report. I’m sure it will help many people going through a similar journey.
Question, Could your elaborate on your comment “The muscle wasting from the steroids definitely took its toll” ? I thought the steroids were helping your muscle strength ( and balance) ?
December 29, 2019 at 6:03 pm
Prednisone is a corticosteroid not an anabolic steroid that you are thinking about, like Barry Bonds. Google the 2 steroids and you will see the differences. Feel free to ask more questions if you have them. I posted as much as I could think of in one long sitting. I know there may be more to share.
What I like about my post is that it gave me the opportunity to reflect back on the experience. The notes I took showed there were little struggles along the way to recovery and would in most cases be hard to document in my opinion.
January 1, 2020 at 9:50 am
Thank you for sharing your story and the chronological sequence of events. It is inspiring to hear how well you have progressed over the past 18 months!
As we have heard from various others on other posts, it is frustrating in that the treatment and journey can be so different for many. Some have stated that IVIG on its own has done the trick and many others have used prednisone etc.
I have been asked to go in for my first maintenance dose of IVIG tomorrow. (75 g of Gamunex over 3 days). I have seen no change in progression of symptoms since my loading does. They want to try this what they refer to as less invasive treatment first after which they said they would look at other options including corticosteroid.
I like facts and the piece I find find frustrating is that there do not seem to be many statistics about % of success using different methods due to the uniqueness of each persons disease.
I will try this next three day treatment after which feel if not successful, will need to look at other options quickly including potential second opinions on the path forward.
February 5, 2020 at 10:48 pm
It’s good to see a somewhat positive story for a change. The stories do vary wildly from what I’ve been reading. It does seem to help greatly to get a proper diagnosis early on before the damage is too far gone.
Currently on 30mg of Prednisone daily, plus 30g x 3 Privigen every 4 weeks. So far after 2 rounds of IVIG, I’ve only noticed minimal improvement but a little is better than none. Ready to start the third round next week. I have been experiencing a lot of fatigue lately though, to the point I sometimes take a couple naps during the day. I’d like to get over it and start working out at least a little to regain some strength.
May 31, 2023 at 10:09 am
Thanks for sharing your story and all the detail! Very informative. And thanks for replying to mine. I am approved for IVIg but have put it on hold until I get another opinion. I’m worried because the neurolgist said not to wait too long. Because of my age, he doesn’t recommend steroids.
I have a lot of questions to ask during my second opinion visit.
Even though I’m older, I have exercised all my life and am in good health. I always feel better after PT.
August 20, 2023 at 8:39 am
Thanks for your story. I’ve been off and on prednisone for the last 6 years. For me, it has never helped, but every time I have a flair up, the doctor adds it to the regimen.
Unfortunately it added around 60 pounds, mostly in my stomach. I’ve lost 35 lbs of it so far. I should be off it by the end of the week.
I’m on CellCept as well, not sure how much it helps me. I’ve has Plasma exchange, and that didn’t help very much.
The only medicine that helps me is IVig.
It is really interesting how some medicines work for some and not others.
And, the trigger for my CIDP seems to be vaccines. The shingles shot I got in September of last year, triggered my latest episode in October….
Hope you continue to improve.
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