Your top signs that your CIDP is coming back/getting worse

Viewing 11 reply threads
  • Author
    Posts
    • #112386
      BryanF
      Participant

      I’m not sure I was ever in remission, but with IVIG treatments starting next week to treat declining strength and increased numbness, here are some of the telltale signs I began to notice over the last several weeks. (They mirror a bit the onset symptoms from the fall as well).

      -Loss of taste. Had this happen in the fall, quickly followed by numbness. Not all taste is gone, but the “taste” palette is certainly limited. As soon as my taste buds started to fail, my gut feeling was that I was going to go downhill.

      -Numbness in the fingertips. While I still have feeling, it is starting to degrade, along with just a bit of dexterity.

      -Muscle weakness in the legs, especially the calves, and strangely enough right above and below the knees. Same as this fall.

      -Late last week the numbness in the hands and feet turning into the “sock and glove” feeling of pins and needles and numbness.

      -Fatigue at the end of the day as if I did 10x the actual activity. Loss of strength. Lifting becomes harder, especially at work.

      -Strangely enough, my trunk, i.e., chest, stomach, and sides, as they did in the fall, start to feel numb. For instance, I can’t really feel the texture of the terry cloth towel after a shower.

      -Finally, my ability to judge close distances becomes impaired. Either my foot catches something or I bump into things or people, despite thinking I have clearance.

      The thing is, as soon as I started experience taste issues, I knew I was going backwards as that was the first thing that hit me in the fall. My neurologist, I don’t think has ever believed me on this one, but for me it is a telltale sign.

      And this time, with a bit of experience behind me, I think I’ve caught it early enough to avoid December and January’s decline culminated with not being able to walk.

      So, what are your early warning signs?

    • #112388
      Jim-LA
      Moderator

      Whenever you can notice negative symptoms mounting, it’s time for action! This is usually due to a build-up of the bad antibodies in one’s system. Please see the following post of a more detailed discussion of what might be going on and what you might consider as treatment options:
      https://forum.gbs-cidp.org/topic/new-cipd-and-central-nerves-cranial

      • #112439
        BryanF
        Participant

        Jim-LA,

        I read your link above. Let me quote it so I get it straight:

        “IVIg stops your autoimmune system from making more bad antibodies, but does not remove the bad antibodies already released into your system, these can continue to do damage, especially the ones that have travelled deep within your system. Plasma Exchange (PE) removes the bad antibodies but does not stop your body from producing more. I think, depending on the severity of individual cases, that treatment should consist of 3 days of PE followed by 5 days of IVIg (or SCIg).

        One of the best long-term treatments for chronic PN disorders is an immunosuppressant drug. These drugs help suppress the autoimmune system from producing bad antibodies over time. These are strong drugs and may have side affects for some. Prednisone, CellCept, and Rituximab are some of the more popular drugs being used.”

        I think I understand your description above and it would make sense to include a treatment that removes the antibodies as well one that prevents more being made, as in IVIG.

        So I’m on Prednisone. I was on it for month (December) at 60mg and my condition worsened that on Jan 2 I couldn’t walk and was admitted to the hospital for IVIG treatments, which really turned things around.

        I felt like I peaked recovery wise in late February, at about 75% of my former self, but since early March I kept thinking I felt run down and I’m not progressing, and, in fact, regressing. Since January, I’ve been on 40mg of steroids a day. Numbness and weakness returned during the last two weeks and now I have 5 days of IVIG treatment starting Monday. I’m at the point where I’m about to reach for the cane again.

        So, would you say the Prednisone failed for me in December and now, it failed again after my hospital stay in early January?

        If so, what would be another immune suppressant that I could substitute for Prednisone?

        At least to me, it doesn’t seem to be suppressing my immune system sufficiently, and I’d like to present my doctor with a argument for an alternative immune system treatment to replace the steroids. Your thoughts are greatly appreciated.

        Thanks,

        Bryan in Cincinnati

    • #112395
      fellowcidpguy
      Participant

      Bryan, sorry to hear you are going through a down cycle. Glad you are approved for the IVIg treatments and hopefully you will rebound like you did in the fall. I was feeling like I was going backwards and then today I met with my new neurologist and after some strength and other tests he said I was doing extremely well and thinks the early diagnosis is really weighing in my favor. Couple of interesting points, he ordered an MRI to check my lower back to make sure that spinal stenosis (narrowing of the spinal column) isn’t in play in my case. But given that I have had no back pain whatsoever, he just wants to rule it out. Was surprised insurance approved it so quickly. I had a long list of questions for him and he took plenty of time with me to answer them. When I asked if the tingling nerve activity in my lower legs was my myelin being attacked, his reply was that it could be but that the same feeling can also be the nerves going through regeneration. I am going to go with that answer 🙂 So as I was preparing for the worse I left feeling a bit upbeat. The crazy mental challenge of this disease can be worse then the disease itself. Stay positive and let us know how you are doing. Jeff

      • #112438
        BryanF
        Participant

        fellowcidpguy

        Awesome to hear!

    • #112404
      rolandruth
      Participant

      Here is the order for myself:

      1) Numbness in the fingertips (both hands but right hand worse) and then numbness in my left foot (right foot has zero problems).

      2) Problems walking up stairs and getting up from chair, bed etc

      3) Loss of strength in my hands (again right hand much worse than left)

      • #112440
        BryanF
        Participant

        Here is the order for myself:

        1) Numbness in the fingertips (both hands but right hand worse) and then numbness in my left foot (right foot has zero problems).

        2) Problems walking up stairs and getting up from chair, bed etc

        3) Loss of strength in my hands (again right hand much worse than left)

        Funny how CIDP presents itself.

        Numbness in my fingertips is distributed evenly in both hands.

        But in my legs, my right calf hurts more and is weaker than my left. And, only my right ankle is weak. I have no such weakness in my left ankle.

        And yup, I’m taking the stairs one at time again up and down.

    • #112441
      GH
      Participant

      Bryan, for me, immune suppression (following my primary treatments) was a two-part treatment. I started on prednisone, but this is not intended for long-term use because of side effects. I also was prescribed mycophenolate mofetil (Cellcept). The latter does not take effect right away, so I continued it at full strength while the prednisone was tapered down to zero over the course of about a year. After several months without prednisone and no signs of relapse, the mycophenolate was tapered down. Eventually, I was off the mycophenolate altogether and I now take nothing for my neuropathy.

    • #112449
      Jim-LA
      Moderator

      Bryan, I would not want to guess at what may have failed for you, the Prednisone, the IVIg, the lack of PE, or something else. The good news is that you have many drug choices other than Corticosteroids such as Prednisone. Several of the options have fewer side affects and can help lower your autoimmune system responses, especially responses that may trigger antibodies that cannot distinguish “self” from invading antigens. Most of the alternative drugs are listed here starting on page 9:
      https://www.gbs-cidp.org/wp-content/uploads/2012/01/CIDP.pdf

      More alternative treatment approaches are discussed here:
      https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3487533

      A new drug in clinical trial is listed here:
      https://forum.gbs-cidp.org/topic/mycophenolate-sodium

      I’m sure you’ve learned by now that because those of us with CIDP do not respond in the same way to treatments, finding the treatment that works best for us can sometimes require a trial and error approach… but please, only under the guidance of a Neurologist experienced in peripheral neuropathies. Unfortunately, another complication can be how our insurance companies allow us to proceed. They often error on the side of their short-term pocketbook savings over our near-term health, causing their long-term pocketbook expenditures to increase and our health to worsen.

      I hope you find treatments that help you get well quickly from this awful disease.

    • #112452
      BryanF
      Participant

      Thanks Jim,

      I’ll read the links during my treatment tomorrow. I ran into a doctor I had done work for in the past and when I related my CIDP story to her today, she offered to refer me to her colleague who is knowledgeable in CIDP. So, once set up, I’m going to see him for a second opinion and maybe some different treatment options.

      Sometimes life works in your favor!

    • #112461
      kaylee
      Participant

      Hi everyone, i am new to this please be patient, i was diagnosed in 2008, since then i have relapsed every time i contract a viral infection, the signs are the same as i have been reading here, taste is a big one, numbness, tingling and cramps usually a week to 2 weeks after the onset of a virus, over the next 3 to 6 weeks paralysis sets in. Initially i was given ivig, my second dose ended in seizures, so they started 1000mg methylpred a day for 5 days,at the onset of symptoms, 2 days ago i received my 5th course. I am not sure what to expect, no paralysis? (over shot that runway) it does help me breathe, and seems to shorten the muscle atrophy.. Now they are talking about metaxalone? weekly doses … Does anyone have experiance with this? I really am at wits end, i live in a very rural area, and although i have a vast medical team and all the usual people, i am so alone, no one understands the amount of effort to get from my wheelchair to loo or bed, the total exhaustion, just having a cuppa with people, i try so hard to be strong, get up and get on with it, i just wonder sometimes, if any of it is worth it. Not sure if this is the right place to ask, but i would like some other peoples experience with treatments and if and how they work. Thank you Kaylee

    • #112462
      Jim-LA
      Moderator

      Hi Kaylee, You are in the right place and asking the right questions! It seems you and I were gifted with this disease in the same year… how much luckier could we be lol. Seriously, it’s an awful disease and I wouldn’t wish it on my worst enemy.

      Having the disease means, our autoimmune systems know how to make antibodies that can attack “self”. When an invading antigen such as the flu gets a hold of us, our autoimmune systems go to work producing specialized cells to stop the invader. A discussion of the types of cells involved is here: https://forum.gbs-cidp.org/topic/new-cipd-and-central-nerves-cranial The thread also talks about what others have experienced treatment-wise and may offer some insight into helping you choose future treatments.

      Metaxalone is a muscle relaxant used to loosen muscles and relieve pain caused by strains, sprains, and other musculoskeletal conditions. It does not treat CIDP, but can help alleviate symptoms. CIDP treatments are listed above in this thread, in my post dated April 2nd. Please follow the links there to learn more about your treatment choices.

      Regarding side affects to IVIg, here is a good article that covers them and what to do about them:
      http://www.igliving.com/BlogEngine/post/IVIG-Side-Effects-When-to-Seek-Medical-Attention.aspx

      Have you been on any Corticosteroids such as Prednisone? Such drugs can reduce your systems immune response, thus lowering the creation of antibodies that attack “self”.

      You may wish to consider taking Alpha Lipoic Acid. ALA is over the counter and can help improve Peripheral Neuropathies. A dosage of 1200MG to 1800MG per day is suggested. You can search these forums for more info about it. I use the brand listed below:
      https://www.luckyvitamin.com/p-6120-now-foods-alpha-lipoic-acid-600-mg-120-vegetarian-capsules

      I hope the information in this forum can help improve your quality of life and end the recurring attacks you seem to be prone to.

      • #112466
        kaylee
        Participant

        Hello Jim and thank you for your kind words and informative links. Yes, indeed 2008, what can i say!
        Today i seem to be laughing again, although i have tears in my eyes and a cup of coffee dripping down my legs because i was reading and not concentrating on where the table really was… Sad i now laugh at my sensory mishaps, guess after 9 years something had to give, pretty sure its my sanity.
        Prednisolone yes, i have 5 days at 1000mg of Methylprednisolone at the onset of each relapse, strangely the last 3 have been 3-4 months apart and this time i am sure its improved, paralysis seems to be lower although the rest is numb, tingling, cramping and very nervy, i do have some sensation where usually i do not. So something is different.
        As for anaphylaxis after IVIG, not sure, but definitely wont be doing that again.
        many thanks Kaylee

    • #113584
      drdog
      Participant

      The signs people talk about are all too real. I seem to have had this ‘cooking’ for many years, but first diagnosis was about 5 years ago. I’m fortunate that it’s been a slow progress, but starting to worsen in the last year.

      As people describe problems with stairs, missing the table, etc. what we’re really talking about is proprioception. The ability to know where limbs, etc. are without looking. Touching your nose with your eyes closed is what’s used in roadside tests. I have to watch my feet, or I simply can miss the step. Only fallen down stairs twice, but hope to not repeat that. The funnier part of this is sticking a chip in my eye if I’m not concentrating…..or trying to explain why I tried to put a french fry (with ketchup…) in my ear. I can tell if signs are coming back if I do stupid things like this.
      Thanks for the comments on taste. Wondered what was going on. But things that I’ve found to help immeasurably is tonic water for cramps. My neurologist suggested the quinine in tonic water rather than a prescription. And another is CBD. I can feel my legs relax and the pain subside in minutes. A bit of THC at night to sleep helps that too. But the loss of proprioception is the most problematic right now. I’ve spilled more wine glasses and run into people walking than I care to remember. Jim

    • #113685
      pdarwin
      Participant

      Hello and thanks for everyone sharing information about their experiences with CIDP. This is something I have not done until now. I’ve not met anyone with a diagnosis of CIDP either, but then, I don’t get out much anymore. I am still walking, albeit slowly and unsteadily – this is especially true if I sit just a little bit too long.
      My diagnosis of CIDP was back in October 2004. I don’t recall when symptoms started, my CIDP experience has been one of mostly very slow progression. I used to lift weights and had a surplus of strength – so this helped delay my awareness after I stopped lifting regularly (around the same time, but due to change in jobs and other things). One day in 2001 I was out mowing the yard and ran over a ground hornets nest. I was attacked and stung and tried to run. I fell, got up and fell again. Fortunately, I was on a 40% incline hill in the front yard and I thru myself downhill the third time I got up to run. I rolled to the bottom and laid still – about 80 feet away – the attack was finally averted. This was how I discovered that I could no longer run. This was not enough information for my doctor to act! The next big thing for me was noticing that I was helping myself stand from a seated position using my arms. There was no numbness in my legs, only loss of strength. My brother (3 years younger than I) was beginning to show signs of a foot-drop problem. I panicked and had my PCP send me to a neurologist. The neurologist was amazed at how strong I was and even though I told him repeatedly every 90 days for one year – I was still stronger than he was, so there could not be a problem. Infuriated by this, I discussed this with a new PCP. He could not change my neurologist directly. He filed this away and waited for the right (indirect) opportunity. I began to show signs of atrial fibrillation (heart missing beats) and had nerve pain in my diaphragm area, just above the rib cage under the sternum. The nerve pain was a tingling, sharp pain that was there all the time; but got worse-better-worse again over time and felt like it was circular in shape. This triggered concern as it could be heart related. I was put into a hospital to have tests on my heart and while I was there, a new neurologist wanted to do an interview and examination. (This was the indirect move by my PCP to call in a near-the-hospital neurologist that was available to come right away (the other neuro was not). The heart tests returned normal and the circular nerve issue passed to the new neurologist – who set me up appointments for spinal tap, blood work, EMG, etc. This was September 2004. All tests in the hospital were suggesting CIDP possibly and surgery was done to remove my sural nerve on my right leg. The EMG was helpful in understanding that my nerve issues were everywhere – on my head and face, shoulders, arms, chest, legs and feet. My neuro suggested that what he was seeing was the my body was fighting the nerve damage and the nerve damage was winning slowly. He diagnosed me as having CIDP in October 2004 and I began a high dose of prednisone and azathioprine. I am still taking this today as we issue in 2018 tomorrow. I can feel CIDP slowly winning as I do more things over time and realize that I can’t anymore. They are so slow for me that I cannot determine it is happening until I learn I can’t the next time I try something I don’t do frequently – example: prolonged sitting in a car or using muscles too long for an hour or more. I have muscle cramps – I’ve tried calcium & magnesium, vitamin E and B-100 without help. I have also tried Baclofin (spelling), muscle relaxers, heating pads, special socks – nothing helps. I have noticed that when I exercise, do yard work, do regular work, or walk (for exercise) – I have muscle cramps every single night. I get up after three attempts to get to sleep fail. These are cramps from the groin-to-knee, calves on both legs or just one, feet, etc. I also have cramps in my hands where my fingers distort into odd positions and I have to use the other hand to straighten them (this happens when I spend a bit too long handwriting). When I attempt to flex a muscle, it cramps – arms or legs. Doctors don’t know what is causing this – and my new neuro says it is CIDP and you are over 60… nice.
      The past 2 months, I’ve changed my hours working (more hours, same job) and I have more cramps during the day and at night. I also added taking my son to work occasionally – and end up in the car over an hour each time. It becomes hard to stay in the car due to leg pain, cramps and joint pain. So – my hope was to change jobs, but I now I find more limitations than potential jobs.

      Oops! I failed to mention stamina earlier – yes, that is another one to watch. Stamina diminishing is also a slow moving issue. Push yourself to see if you still can do this or that – something you don’t do often, but also something that doesn’t require a regimen of exercise to maintain. Time yourself and gauge how hard it is to accomplish.

      How long to recover after expending your daily allocation of stamina? That is another point to learn about. This one is tricky for me. Some days – especially hot days in the summer – it is easy to get into trouble. I can’t even walk at a descent pace and end up sitting in the shade for 20 to 30 minutes and then heading for bed. After 4 to 8 hours of sleep, I can return to normal walk in the house, but still feel tired. This is what happens when I push too hard doing physical tasks anytime – hot is worse than cooler weather. However, if you push in cooler weather – that stamina fall off is still there and if I keep pushing – I am headed for bed (totally exhausted feeling).

      Any new sensations? How about an area that was tingling and numb, but now has the added sensation of cool to cold running water going down my leg? Yep, another sign the disease is active (for me) and I’m slowly losing the battle.

      Genetically speaking, I’ve had tests that have determined I have both receptors for tolerating Thioprine – in my case, Azathioprine used for my treatment along with Prednisone (low dose). I’ve been taking this over 14 years now. I consider myself lucky – only a small percentage of people have both receptors working to tolerate this. (At least, this is – like most things – gauged with what is known at this time).

      Well, I need to break off here and hit the bed one more time again. Perhaps I’ll get 1 to 2 more hours of sleep. Next time – I stay up. It is like baseball – 3 strikes and out.

      Best wishes to everyone, Happy New Year 2018 and God bless!

      So – now I change up what I do, how long I do it – just looking for comparative views and a noticeable failure that continues. One more for the log book.

      I also have issues with balance – sensing things around my legs and feet – clumsy walking, limping gait walking, my hearing has worsened significantly (I need hearing aids for both ears – volume and frequency issues. Also the balance issues started at the same time. I went for hearing test and then asked doctor for assistance with balance issues – they teach you how to compensate).

    • #117687
      Aaron Taylor
      Participant

      Thanks, pdarwin, for your post on this. I know it’s been a while since you posted, so I am late to the party on this. But, it helped me when dealing with a recent “relapse” of my CIDP. Been tough sledding to this point, and it’s been helpful to read what someone else deals with.

Viewing 11 reply threads
  • You must be logged in to reply to this topic.