Relapse vs Rehab

    • Anonymous
      February 12, 2014 at 9:55 pm

      Hi all, I’ve been lurking around the forums for a while and have picked up a wealth of valuable information regarding my CIDP – thank you to everybody who has contributed their experience and added to this great information repository! I finally find myself needing to ask a question that I can’t find an answer for, and I know that it’s probably going to be one of those “your mileage may vary” situations; it sometimes seems that every aspect of CIDP is unique!

      I’ll explain my full history at the end, but my question is about spotting a CIDP relapse. I had acute onset initially, followed by two relapses that came on quickly over the course of less than a week each time, leaving me unable to walk and affecting my breathing – pretty easy stuff to spot. Since my last relapse, I have been on Prednisone and Azathioprine, and have noticed a general weakening that is starting to scare me. My paranoia is telling me that I’m having a slow-onset relapse, but the rational part of me says that I’ve just been slacking on my home rehab and am suffering atrophy and muscle loss. I would like to ask if there’s a good way to distinguish between physical weakness brought on by inactivity and the kind of weakness that indicates a relapse of the CIDP.

      Thanks for any feedback!

      – Acute onset over 2 weeks following Tdap vaccination in Sep 2013; prescribed hydrocodone and gabapentin by urgent care
      – Admitted to ER Sep 20, 2013, arms and legs paralyzed, breathing and swallowing impaired. Spinal tap showed elevated proteins and diagnosis of GBS given
      – 5 doses of IVig administered over 5 days, narrowly avoided intubation and was discharged to rehab in wheelchair
      – 2 weeks of inpatient rehab; discharged with walker and wheelchair, regimen of outpatient rehab 6hrs/week for 2 weeks
      – First relapse Oct 22nd, 4 weeks after initial IVig treatment. 5 doses of IVig over 5 days. Discharged Oct 27th with cane, able to walk.
      – Outpatient rehab 6hrs/week; huge improvements, recovered to 90%+ fitness, discharged Dec 30th.
      – Second relapse Jan 8th 2014, 10 weeks after last IVig. Caught early, 3 doses of IVig over 3 days given. Needed cane at discharge.
      – Prescribed course of Prednisone and Azathioprine to control relapses.
      – Feb 4th, relapse scare. Prednisone side-effects blamed, dosage reduced. Have been weakening ever since, stairs getting tricky.
      – Not using outpatient rehab as insurance covers only 40hrs/year. Cannot put on weight – 6ft, 120#.
      – Working 40-hour week from home to keep job and benefits, hard to exercise as much as needed.

    • February 13, 2014 at 1:30 am

      Azathioprine (Imuran) can have side affects in some that might seem like a relapse. If your appetite seems affected you should take Imuran after meals, not before. The feeling of general weakening could be related to the combined affects of Imuran together with Prednisone. It often takes a couple months for our bodies to acclimate to such strong medicines.

      The feeling of certain muscle weakness could also be a result of the contrast between muscles you are using regularly, and muscles that are not used as much due to Myelin damage or possible inactivity. However, it could be some form of a slow relapse, but my thinking would be it probably has more to do with the medicines you recently started taking.

      Some of the side affects of these medicines are described here:

      As far as for telling the difference between a CIDP related weakness and muscle atrophy, CIDP weakness (Myelin damage) is usually accompanied by tingliness, numbness, and unusual sensations like zingers, crawliness, sometimes itching. Muscle weakness without these associated symptoms is less likely to be CIDP, but as you said “your mileage may vary”.

      Battling this disease is not fun and I wish you the best of recoveries.

    • GH
      February 13, 2014 at 1:57 am

      It’s difficult, because when one is recovering from a serious case, as yours was, one naturally is apprehensive about relapse. A relapse is persistant weakness caused by damage to the myelin sheath on the motor nerves, the primary characteristic of the disorder. This must be distinguished from temporary weakness caused (typically) by overexertion. It is important to pace yourself so that you do not become exhausted. Objective tests of muscle strength, repeated at intervals, are the means to distinguish. This is what a neurologist or physical therapist does when testing the strength of particular muscles. They are the best judge of progressive weakness, but you can test your own strength by, for example, lifting weights or something equivalent in a reproducible manner.

    • February 13, 2014 at 5:23 am

      sorry to hear your going through this.. no fun! Some people can also get weaker with prednisone- steroid myopathy.. Are you doing maintenance IVIG on a schedule, or only when you are in “crisis”? From what everyone says on here, it seems the general thought process is that you need to get IVIG (if that works for you), before you feel like your backsliding symptomwise… they say that if you feel like you are declining before your next infusion that permanent damage may be happening
      I know with me- I only had very mild muscle atrophy when I was initially hospitalized (it had been going on for a couple of months at that point), but the atrophy appeared to be going very fast.. once I got IVIG initially, the atrophy seemed to dramatically slow.. I do have some progression in atrophy diffusely over the past 2.5 years, I always wonder if it is atrophy from the initial trauma of it all that just slowly showed up (delayed appearance), or is muscle damage continuing? I am much much stronger than i was 2.5 years ago, so who knows!

      Any virus/illness and stress exacerbates my symptoms and can send me into a relapse, which is incredibly frustrating… currently having that now, thanks to a nasty cold and cough!
      Good luck!

    • February 15, 2014 at 5:29 pm

      I share your feelings regarding relapses!!! I am also on Immuran (Azo 200mg/day). One of the “signs” I watch out for is trouble sleeping coupled with elevated blood pressure. In fact I am suspecting I maybe starting a relapse now, i.e., muscle weakness & tremors in my hands. The last time (11/1) relapse, I went into the ER & got hooked up to Solumedral (sp) for 3 days (over a weekend) followed up the next week with my normally scheduled IVIg. After 2 days/doses of the solumedral, I could feel the relapse had stopped immediately & I was back using a cane. After the 3rd dose, I was walking around inside the house w/o any cane. The IVIg regime was like a strengthening booster switch. The bad part is I’m back on oral Predisone. I just wish I could find the key to managing CIDP w/o Predisone.

    • February 16, 2014 at 6:50 pm

      Yep, it was a relapse. Went to the ER this morning (O Dark Thirty) & Got hooked up to Liquid Roid Rage (Solumedral). Scheduled back in the ER (Very Early) for dose 2 of 3. I am normally scheduled for my monthly IVIg starting 8:00AM Tuesday & I am hoping I can get dose 3 of 3 before the IVIg.

    • Anonymous
      February 16, 2014 at 9:12 pm

      Thanks to everyone for the responses and information – I have taken a close look at my situation and I believe that I am not relapsing, but having a combination of side-effects from medication and weakening from lack of rehab. I’ve also recently weaned myself off Hydrocodone, and I think that I’m feeling a lot of muscle pain from exertion that was previously being masked by the narcotic. I’ll be seeing my neurologist on Tuesday, where I will get the full strength test and find out how I’m doing – hopefully, I will also get off the Prednisone (my original dosage made me very nauseated) and be able to manage the CIDP with Azathioprine alone. Maintenance IVIg has been discussed, but my insurance will only cover it in the case of demonstrable neurological deterioration.

      Jim-LA: I appreciate your insight into medication side-effects and the links you provided. Your response prompted me to look closely at my symptoms and consider my medications as culprits. I’ll be watching myself closely for the myelin-damage symptoms you describe.

      GH: After reading your post, I intend to work with my neurologist to establish a set of tests I can do at home to monitor my strength. I paid close attention to my issues and saw that it seems to be more about exertion and fatigue than about absolute muscle strength, where my relapses have always seen me lose that absolute strength to the point where I can’t raise a leg, or lift a mug of water.

      bny806: I’m sorry to hear that you are suffering with relapse and cold, I certainly hope you get to feeling better soon! I agree with you regarding IVIg, whenever I have had a course of that stuff my improvement has been swift and noticeable by everyone. My last course was only partial, 3 instead of 5 doses, and my family said that I came out of of it worse than the previous treatments. I can fight insurance for some maintenance treatments, but to be honest I don’t think they appreciate the nature of this condition. They’ve covered two ER and ICU visits instead of giving me preventive treatment, so I don’t see things changing now!

      JohnQ: I’m sorry you ended up in the ER again, it sounds like you definitely have the ability to recognize a relapse! Solumedral is not something I have heard of in treating this, but I’m glad that it works so well for you – hopefully you can get back on track with your IVIg and recover well!

    • February 27, 2014 at 1:12 am

      Lesson Learned regarding “Managing” Relapses — Trust your JUDGEMENT!! I felt it coming on late Thursday & waited until early Sunday morning before heading in to th ER. I should have went into the ER Late Friday or Early AM Saturday. Three days Liquid Steroids (Solumedral) – Sunday, Monday, & Tuesday. Had my monthly IVIg maintenance Infusion Scheduled for that Tuesday & Wednesday, so I did a double on Tuesday. Thank goodness the IV site lasted the 4 days in a row because I have difficult to “stick” narrow/rubbery veins. My bounce back was not as quick as my 11/2013 relapse. But I am back to Cane (somewhat) to practise/perfect my gait. Have no problems (other than technique) Freestyle walking anywhere in the house.

      • Anonymous
        March 7, 2014 at 8:21 am

        I wouldn’t wish what we all have on anyone, but wouldn’t you just like the folks at the insurance company to have this pain for one day then they would reconsider paying for our treatments. I’m starting on what appears to be another relapse. Was at my neuro today for my 3 month follow up and I’m up at 2 in the morning as I can’t sleep, severe headache, backache, burning tingling shooting pain in my feet. They will be cold one minute then hot the next and it is driving me crazy. I have started having these stabbing pains in the middle back of my head they only last a few seconds then it radiates down my neck and into my arm. They are going to redo my ENG again and my muscle neuron testing (which I absolutely hate) I prefer my spinal taps over the muscle neuron testing any day. I have had this for about 3 years now, diagnosed for about 2 years now, my spinal protein levels are through the roof. Spent a week in the hospital 6 months ago having 1000 mg a day of steroids pumped into me. Felt much better for several months, but it is all coming back. My doctor talked to me about going back in again to have this same treatment. He is leaving it up to me to decide. The way it is going tonight I would go in tomorrow.

        I know I’m not alone when I get depressed with it all, I don’t sleep much at all anymore and that is a lot of the problem, I feel better up prowling around my house and moving. when I sit down or lay down I get worse and things just seem like they shut down and don’t want to work anymore. He prescribed me pain and sleeping pills but I don’t take them as I don’t want to get addicted to them, and with the gambepentin at such a high dose I think I take enough along with my other prescriptions.

        Take care everyone we are not alone, God bless you all and hopefully they will find a cure to end this all for us soon.