CIDP with sciatic involvement

    • Anonymous
      February 25, 2010 at 2:24 am

      Hi All,

      I’m a leukemia and bone marrow transplant survivor of 7 years. I was DXed with CIDP, Lewis/Sumner variant, by Dr. Richard Lewis himself in 2007. The issues I’m having are in both legs but started in the right and migrated to left over the course of about two years. When my right leg started to present the issue the sciatic is involved and as a result I’m in quite a bit of pain and discomfort almost all of the time. Further, the flare-ups that occur are extremely painful and unpredictable in nature.

      I’m on 40 mg of prednisone, 1800 mg of neurotnin and 30 mg of nortryptaline per/day. I get IVIG once every three weeks at 800 mg per/kilogram. I take quite a few supplements such as calcium, D, fish oils, vitamins and minerals. Due to some of the great information on this forum I’m now seeing a chiropractic neurologist.

      All of these things said, I’m not confident that the disease progression is slowing. I do feel that it is getting worse. Soon, due to the lack of effectiveness of my current drug treatment, I’ll be talking to both my neurologist and bone marrow docs about returning to immunosuppressive therapy…probably trying tacrolimus initially as that is what was used during my transplant recovery.

      Well, that’s where I’m at currently. Would any one else have experience with sciatic involvement in their CIDP. How are you managing the unpredictable nature of the painful flareups? When those occur with me I end up reaching for Vicodine and upping my steroid dosage. This is less than an optimal solution in my opinion but I feel that I don’t have any other options. Any advice you have would be great on managing this situation.

      Lastly, this is my first post I think, but, I have been an avid reader for a while now. Thank you all so much for the information you all so readily share. This is the only place I can come and know that I’m not REALLY alone with this.

      Warmest Regards,
      Plymouth, Michigan

    • Anonymous
      February 25, 2010 at 3:37 am

      Hi Ed,
      I’m sorry that you have been unwell and in pain.
      I have CIDP and have bouts of sciatica (starts low in my back then travels down past my buttocks and then my legs). The weakness in my legs will become more noticeable too.
      Mine comes in bouts. I might be okay for a week and then it’s back again for a few days and then it goes away again (I can never tell when it will play up).
      When my pain gets really bad it then starts to become a numbish pain (if that makes sense) – I’m not that good at interpreting pain sensations anymore since coming down with CIDP – most of my pain is an electical type pain now.:eek:
      I am still trying to work out the best way to manage my pain. I have only been taking paracetamol.
      I sincerely hope you find some relief soon.
      Yes, it is good to know that there are others here who know what we are going through!
      Good luck,

    • February 25, 2010 at 9:11 am

      Hi Ed,
      Welcome to the forum. I don’t know anything about the drug you mention, is it in the same family as cytoxan? Several on the site that no longer have results w/steroids, ivig move to the cytoxan. Was your procedure for your leukemia similar to the stem cell harvesting that is in trial for cidp? Maybe the current trial could be an option for you. With the procedure you had, 7 years ago, was it donor transplant, if so are you currently on anti-rejection drugs(imunosuppressants)? Did the marrow transplant and the leulemia treatment put your cidp into remission seven years ago, meaning have you been symptom free of cidp since the leukemia treatment? What does Dr. Lewis want to do? Just an off beat idea, is it possible from all of the prednisone and other drugs from your leukemia that there is a weakening of the bones therefore causing osteoporosis in your spine and compressing the siatic nerve also known as spondylosis (spelling) I think there is cervical and lumbar spondylosis. It presents with numbness tingling, pain, gait issues difficulty walking. I think it also can involve the bladder and bowel. I often wonder if this is an additional component for us as we have constant back pain? It seems like it is difficult to differentiate between spondylosis and cidp symptoms just by “feel” of ones syptoms and clinical presentation unless a diagnostic tool is used. Such as a ncv/emg to see if demylienation is occurring elsewhere. Good Luck, keep us posted.

    • Anonymous
      February 25, 2010 at 10:30 am

      [QUOTE=Dawn Kevies mom]Hi Ed,
      are you currently on anti-rejection drugs(imunosuppressants)?

      Just an off beat idea, is it possible from all of the prednisone and other drugs from your leukemia that there is a weakening of the bones therefore causing osteoporosis in your spine and compressing the siatic nerve also known as spondylosis (spelling) I think there is cervical and lumbar spondylosis. It presents with numbness tingling, pain, gait issues difficulty walking. I think it also can involve the bladder and bowel.

      Good Luck, keep us posted.[/QUOTE]

      [I]Dawn, you make a very interesting point. I had not thought of osteoporosis and sciatic pain. I should’ve, however, as I just had a friend go through this for what must’ve been an almost intolerable period of time before the docs surgically intervened.


    • Anonymous
      February 25, 2010 at 10:34 am

      Hi Ed
      My son Ryan also see’s Dr Lewis, he is such a great doctor. I don’t know if Ryan’s issues are the same as yours but Ryan does get a lot of pain too. he takes 3600mg of neurotin daily, 60mg cymbalata which is also used for pain, ultram, and propoxyphene. its has gotten to the point now that these pain meds dont work anymore he is always in constant pain weather he takes these meds or not.
      we are looking into seeing a pain management doctor. someone from this site suggested it and said he might be able to get some shot to block the pain. not sure what that shot is but its worth it to us to look into it. as Ryan doesn’t sleep real good because of all the pain. there are days that he says he wish he could just cut his legs off to get rid of the pain.
      as soon as I know if there is something out there that can be given to him to block the pain I will let you know.

    • Anonymous
      February 25, 2010 at 3:52 pm

      Hi Ed,
      I am also very sorry that you (or anyone) has to go through this strange kind of pain…, I also started out with Right leg pain (sciatica) that eventually moved to the left leg– and now is more in my hands- both feet and legs being mostly numb. I did have a ruptured L4-L5 disc and had two surgeries to correct. but the rest of the pain is not from that injury– or is it in some way related? many years of pain, but very little weakness– tests all seem to come in ok, reflexes are ok… only the biopsy of the sural nerve confirmed CIDP. Now i have nerve conduction and EMG findings to support the Dx, but for years i have suffered. They tell me I am lucky that to be strong — but the pain is becoming more and more disabling.

      My advice to anyone with this disease is to keep searching for what works for you, and keep up hope that the pain will ease up with time. Never give up hope! My feet being numb is a blessing (I just have to be aware of my feet all the time to keep them safe from injury) but how could I wish that on you or anyone else?

      I am asking for a trial of Rituxan, but currently being denied by my insurance co. We keep up the IVIG and methylprednisolone- and I finally had to admit that I need pain medication.

      Good luck to you and to all of you out there who give me hope. Typing is difficult for me, but i read every word on this forum — THANK YOU TO ALL OF YOU FOR THE ADVICE, THE COMFORT AND THE HOPE!!

    • Anonymous
      February 25, 2010 at 10:15 pm

      Indeed Tacrolimus is an immunosuppressive drug used for many different types of transplant patients. My leukemia and subsequent unrelated bone marrow transplant were unreleated to the CIDP. CIDP has only become an issue for me in the last few years. Today I am approaching my 8th year as a leukemia and transplant survivor. The CIDP, it is thought, is a result of a chronic rejection issue due to my transplant. All rejection issues, at this phase for me, present as auto-immune disorders. Cytoxan would be in the same ball park as Tacro I think. I feel this is a first good option to treat the CIDP as I was on it for a few years after transplant and tolerated it without issues.

      I’ve read some of the posts on transplants being used as treatments for CIDP. As you can imagine, the thoughts of going through another transplant…are not appealing to me. Keep in mind this comes from one that has been through three rounds of chemo, just for the leukemia, and then the conditioning chemo you need prior to a transplant. I was hospitalized for most of 2003 during this time. That I’m grateful to be alive…well…that is an understatement.

      Dr. Lewis does want to do a bone scan to determine any loss as a result of long-term steroid use. I have been on steroids consistently for about a year now. Further, I have been working with a neurologic chiropractor and have had x-rays in the last few weeks. I will indeed bring this up in an appointment I have with him tomorrow regarding the spinal issues you mention above.

      Thank you for all of the great replies. I sure appreciate the support.

      Warm regards,

    • February 26, 2010 at 10:14 am

      You have been through so much, you are amazing! Are you curren tly still on anti-rejection drugs? If so, what? Have you had any ncv/emg’S I only ask because IF you were on an imunosuppressant for the rejection of your original transplant, it would make me think that it would be able to keep the cidp under some sort of control. Unless if used as a rejection tool, the suppresants are given at a smaller dose which WOULD NOT help w/ cidp symptoms. I only bring it up because the spodylosis (spelling) keeps coming to mind. You also are on prednisone, that would give some relief with the pain due to cidp in conjunction with imunosup. If it were a compression as a result of osteoporosis(spodylosis) it might not be as effective because the compression is constant meaning the pain meds/steroids could be reducing inflamation on the siatic nerve itself, but the compression would always be there, so the neurot pred could not help with that. No clue about nortyptoline and dosinf, but I do know that you could double the amount of neurotnin (you do not indicate how often you take it, is that an overall amount or a per dosage amount) Have you had a nerve biopsy to show new/old episodes or any other tsts such as ncv/emg, because lumbar and cervical spodylosis can present like cidp clinically. You would only know differently with dx criteria. IF it is cidp and not spondylosis and you already are on all of these imunosup., the cytoxan is an option. The stem cell that is refered to on the site is different from what you had in that they are replacing your own stem cells after a high dose of cytoxan. You get it at once in a shorter period of time as compared to a long treatment. Pam H is a member that had that course and Alice had the harvesting. They could help you with those matters as they are the one’s with the experience. I am sure you are in good hands with Dr. Lewis. You mention that he already has plans of a scan, so he is already thinking about the spondylosis as a result of the steroids I would imagine. You should google it, I think (long time since I read about it) that there are surgical interventions that are done, with mixed results. Usually they start with chiropractic manipulation as you are doing, perhaps the manipulations could be stepped up in a different direction if it is spondylosis. As well, they use massages to relax the areas. I have back issues herniated disks and degerative arthritis that affect my siatica. Sometimes I find more relief from the muscle relaxer than the pain med. The pain med takes the edge off, but the muscle relaxer has a more long term affect. Good luck, keep us posted!

    • Anonymous
      March 15, 2010 at 2:47 pm

      Hi guys,

      As an update to this thread, tomorrow I see the head of the transplant clinic at the detroit medical center and Dr. Lewis to talk about going on immunosuppressive therapy. This may mean using tacrolimus as I tolerated it well during my transplant recovery. So, my plan is to come out of this meeting with a treatment plan that includes low dose steroids, IVIg every 3 weeks and immune suppression therapy. I’m hopeful that this will institute a healing process and not just keep me at status quo. I’ll report back on this meeting!

      With high hopes,