New Member – solumedrol journey…CIDP

    • Anonymous
      October 5, 2010 at 10:48 pm

      I’ll be brief. I am 31 and was diagnosed a few years ago after subtle numbness continued to get worse. I have trouble with feeling in fingers/toes, and to some extent hands/feet. My balance is suspect when I close my eyes (shower) or in low light situations. I started a therapy treatment today, Monday, Solu-Medrol. I’m getting 1 gram a day for three days. My energy is up (able to roll through P90X) and only felt “wired” for 1-2 hours after treatment. I did have “metallic” taste in mouth – really no problem gum cannot cure.

      I am one who takes meds as very last resort – very much health conscious. I’ve read about other possible side effects, but keep things in perspective — as a trooper I’ve investigated dozens of fatalities, but we all still drive everyday despite the very small risk. I’m glad I followed my Doctor’s advice! I’ll post again after day 2.

      Day 2 – Morning of second day….slept well, but went totally numb in mouth/lips, numbness “flared” up like it has in the past with other illnesses/colds that cause an elevation of WBC. My immune system is in overdrive trying to fight meds – and attacking my nerves at the same time…..dose #2 @ 4:00.

      Now today at the hospital, the nurses said that in the majority of cases people get solumedrol its for MS, they were surprised I had CIDP. My symptoms have indeed gotten worse over the first night and continued today. No energy boost – or jitterness after my second gram dosage today. If my “flared up” numbness is there tomorrow – its time to cut the treatment. I was feeling good after the first, so maybe a one time smaller dosage would have worked. I’m afraid that my immune system is out of control now – attacking my mylene sheath in overtime!

      I have had slight numbness in my toes/fingers for years, but today my balance is WAY off, and the numbness is in my lips, mouth, throat. Typically when a CIDP patitient gets a cold/infection/virus, whatever, the numbness “flares” up as the immune system attacks the mylene sheath (nerves), then subsides when the sickness is gone, how long will it take the solumedrol to pass my system?

      Just before bed, and numbness has subsided some….

    • Anonymous
      October 6, 2010 at 10:02 am

      Solumdrel is a great short term fix. If you are concerned about the side effects please get your neurologist to look at ivig as a more viable option
      Very good on doing the px90 workout. I still get to the gym for an hour or so a day but have not been able to do a px workout in years. Keep at it the better shape,more muscle, and mental alertness you have you can battle this disease a day longer on your terms.
      Good luck on this journey. Tons of great advise here and a great way to vent to those that know.

    • Anonymous
      October 6, 2010 at 10:41 am

      Nothing worse, nothing better. The doc still wants me to go through with day 3 – final gram.
      I do have more energy – not tons more, but with the intensified numbness cannot do much. Going to try as much of my workout that I can….

      We’ll see.

      Does anyone know how long it takes the body to rid itself of Solu Medrol?
      180 lb male…

    • Anonymous
      October 6, 2010 at 1:42 pm

      Do as much as you can. This drug is the cheapest way to treat cidp. The steroid should give you some energy and relieft from some pain. Again my suggestion is look at ivig. Drink tons of water but I believe it is slow in exiting our systems

    • Anonymous
      October 6, 2010 at 3:13 pm

      I can relay to you my experience with Solumedrol. I was diagnosed with multifocal (asymetric) CIDP in 2004. My impairment was about 70 % motor weakness 30% sensory, and I am substantially disabled. In late 2005 I was placed on a pulsed IV solumedrol protocol to try to get more treatment results. I was to receive a 1 gram infusion twice a week for six weeks, then 1/2 gram 2x week/6 weeks, then taper. Two days after the first infusion I woke up with a massive flair of all symptoms. We kept on with the protocol, but doctor and I finally agreed to abandon and taper. This episode/flair persisted for 8 months. I did 20 sessions of pheresis during and just after the tapering period, then restarted IVIG, and have never recovered to a level of functionality near where I was prior to the solumedrol, now five years later. A pretty renowned physician at Mayo Clinic told me there is a small subset of CIDP patients, who typically have some form of sub-variant of the disease, for whom Solumedrol/prednisone exacerbates the condition. He said there is no explanation why.

      I do not want to be an alarmist, but my advice – proceed with caution if you continue to dramatically worsen.

    • Anonymous
      October 6, 2010 at 7:10 pm

      I did not go to my third dosage today, with a swollen tongue/throat, I am hoping that I’ll just get back to the way I was before…

    • Anonymous
      February 16, 2011 at 5:54 pm

      In September of 2010 I was taken to Johns Hopkins with GBS(AIDP). I went through a course of ivig for five days. I lost everything up to my diaphragm. The ivig worked, and I was sent to rehab.

      Some months later I was diagnosed with Graves Opthlomopathy, and placed on solumedrol 500mg x 12 weeks with a taper dose. 5 weeks into the therapy I had a small recurrence of the foot paralysis, but it went away by the morning. Each week it has been progressively worse, and the recovery has been met with huge pain in the effected areas. At week seven I am sitting in my chair with my legs paralyzed above my knees.

      The doctors don’t know of a correlation between solumedrol and GBS or CIDP. Does anyone have any Dr names or links that I can provide my doctors to help them understand this issue?



    • Anonymous
      February 16, 2011 at 9:42 pm

      Here is one quote,

      “[I]Although steroids are beneficial for most of the subgroups, this is not so for both of the pure motor syndromes which should be treated with intravenous immunoglobulin. Patients with chronic development of Motor Sensory Demyelinating Neuropathy respond less well to steroids than those with a subacute onset.[/I] ”

      And the link- [url][/url]

      Another interesting quote, yet not directly related some would say, because they are apparently talking about MMN. still, it is an immune-mediated disorder according to Hopkins.

      “[I]Corticosteroids: Unlike chronic inflammatory demyelinating polyneuropathy, steroids have rarely been effective in the treatment of multifocal motor neuropathy, with a response rate of 11%; 7 of 64 cases reported in the literature have been reported to improve either alone or in combination with other modalities. It is important to note that over 20% of patients with MMN have been reported to worsen in strength, sometimes dramatically, after initiation of corticosteroids treatment.[/I]”

      And the corresponding link (from John Hopkins)


    • Anonymous
      February 16, 2011 at 10:46 pm

      Hi there.

      My daughter was dx’d with CIDP at 4 years old. When she was 5 & on IVIG regularly for 8 months we switched neuros & the new dr took her off of IVIG & put her on oral prednisone (not the same as your solumedrol but still a steroid). She went from relapsing every 12 days to every relapsing every 9 days. Sure she seemed to have more energy but it was certainly setting her back.

      She had increased pain, weight gain (11 lbs in 2 months, which is a lot for a 5 year old), mood swings & trouble sleeping at night.

      We switched neuros, tapered her off of IVIG & she has progressed well over the last 4 years. She’s now getting .75 grams per kilogram of IVIG every 4 weeks.

      I say this to you just so you know you are not alone in getting worse on steroids. I believe they do help some & have their place in treatment of CIDP but I think IVIG should be a first line treatment. There are a few known variants that steroids are contraindicated with, as Yuehan posted about above. My daughter’s CIDP is very rare & was never assigned a variant name but I believe she has one that ‘roids should not be used with.

      A few weeks ago Dell’s Mom posted a link to a discussion with Dr. Dyke out of Mayo in Minnesota. He says IVIG should be the 1st line of treatment & if needed later on steroids can be added. You can search the forum for the link & listen to it. Maybe refer your dr to it too.

      I hope you start to feel better soon.

    • Anonymous
      February 16, 2011 at 11:43 pm

      Solu-Merola has an elimination half life of 2.4 to 3.5 hours, which is most likely independent of dose. It takes 5.5 x elimination half life’s for a medicine to be eliminated from your system So 3.5 X 5.5 = 19.25 hours. It takes just short of 20 hours to eliminate Solu-Merola from your system according to what I found. Have you talked to your doctor about IVIg? As a few other have said, IVIg is unusually the first line of defense unless there is an overriding reason not to use it.

      Welcome to the forum

    • Anonymous
      February 17, 2011 at 2:52 am

      Hi State Trooper, I want you to know that it did help me but I was on a higher dose and for a longer period of time. I developed blood clots from IvIg, but before that, I could definately feel the difference. I was then switched to CellCept, Cymbalta, and infusions (at home) of SoluMedrol. Words of warning: Your CIDP seems to be very active right now and needs AGGRESIVE treatment. Maybe I am trying to scare you- Or better yet- inform you. I did not receive the help I needed and eventually became parylized up to my chest. I have permanent damage to my ankles and feet. I was wheelchir bound for almost two years. I will wear braces on my legs for the rest of my life. I just recently started to walk a few steps with assistance. You are too young to let this happen- Make sure you choose a top notch Neuro and hospital for your care. I finally went to Mayo Clinic, but it was too late. Most hospitals, nurses, and doctors don’t even know how to treat this condition. They don’t even know what it is. Be AGRESSIVE!!!

    • Anonymous
      February 17, 2011 at 5:13 pm

      Steroids made me so I couldn’t walk or put clothes on. Went to ivig and within 3 days saw improvement. Them darn steroids can hurt you. Some,
      they work well for. I was hoping the roids would work for me cause its easy.

      You should know it if its helping you. We tend to watch for positive results as we worsen slowly. when you hit the right treatment, you’ll know it.–tim–

    • Anonymous
      February 20, 2011 at 1:39 pm

      Thanks all for your responses. This last Wednesday about 6 hours after the solumedrol, my GBS came back, and I was in the neuro ICU at Johns Hopkins. Ii went all of the way up to my bladder , which is what it did the last time. My resovery, however, started about 24 hours after the origional onset. I am leaving Johns Hopkins today. They would not call it CIDP because of my quick recovery. They are a bit baffled about this, but I believe that what I have seen on this discussion board explains a good deal of what may be happening to me. I am thinking about going to the Mayo Clinic, and would welcome any opinions.



    • Anonymous
      February 21, 2011 at 12:54 am

      I didn’t realize they were saying you have GBS. GBS & steroids do NOT mix! Steroids tend to make GBS worse.

      If I were you I would find a new dr asap.


    • Anonymous
      February 26, 2011 at 10:36 am

      Please check the private message I sent to you.