Time of decline

This topic contains 8 replies, has 5 voices, and was last updated by  Walter Rambow 3 months ago.

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  • #114167

    Bwade713
    Participant

    So, how fast have you declined? I have been dealing with this for a couple years before my diagnosis this last week. However I have noticed a seemingly rapid decline in my ability to walk. Seems like this is moving up my legs rather quickly… Any thoughts?

    #114168

    Bwade713
    Participant

    Also, who all has had pain with this? Mine gets to be debilitating by the end of the day and I can barley walk or lift my arms unless I don’t do a whole lot throughout the day.
    Thanx in advance!

    #114174

    BryanF
    Participant

    When I was diagnosed, I declined rapidly over the span of a month. I could barely walk, my feet and legs up to my knees were numb and my arms and hands were numb, weak….

    Also, motor control rapidly declined as well.

    At the time, I don’t remember pain, but just the weakness and numbness and the loss of motor control.

    Hopefully you get treated soon. The initial dose of IVIg was like a godsend for me. Hope your treatment helps you as well.

    #116389

    ChicagoCIDP
    Participant

    I wish more people would give their experiences here. Helps us maybe gauge what’s happening or what to expect. I was diagnosed in April 2019. Initial symptoms June 2018 was tingling in my feet while I went for a run 8 weeks post shoulder surgery (believed to be the trigger in my case). Feet got worse in the Fall and started feeling buzzing on fingertips. Winter, I was twisting my ankles seemingly all the time and didn’t know why. Had basic neurological tests but negative. Early March 2019 my upper leg power seemed to vanish overnight! Got every test possible as soon as possible. Positive EMG, Positive elevated protein in spinal fluid and presented accordingly. CIDP.

    8 weeks ago started 80 mg Prednisone, did wonders. After 2 weeks dropped to 70, still good. At 4 weeks went to 60, some sensations can back, also started 500 mg x2 daily Cellcept. Met with the doc and bumped back up to 80 mg Prednisone. After a week I requested to go to 100 mg to “get over the hump” and working even better but I’m not whole yet and unclear what the long term future will be. Also jumped to 1000 mg x2 daily Cellcept.

    Planning on staying at a high dose of Prednisone until the Cellcept kicks in about mid-July and then start to taper Prednisone and hope for the best. I’d love to hear from anyone who been down a similar road like this and how it worked out.

    #116399

    BryanF
    Participant

    I’ve been at this for 2 years now.

    I’ve been on Prednisone for 2 years. Most of last summer, I was taking 60mg as my CIDP symptoms were acting up. Right now I’m down to 17.5mg.

    The bad thing about Prednisone is that it can weaken your bones. As a result, two of my vertebrae were found to be fractured and that has caused me a great amount of pain over the last month.

    I’m temporarily receiving IVIg weekly (to see if the nerve pain/numbness and weakness in my arms, hands, calfs, and feet could be dialed down) and I started Imuran in May.

    The good news is that I think the Imuran is actually working. The numbness in my fingers and forearms has receded and the weakness and numbness in my calfs seems to be gone, leaving the neuropathy only in ankles and feet. Additionally, I don’t feel as tired and exhausted and actually have a bit of energy.

    So once my vertebrae heal, I actually think I’ll be on the upswing. That last year has been painful and a challenge and I truly hope the Imuran continues to make me feel better.

    Bryan

    #116402

    Tim Miller
    Participant

    I was diagnosed in 2016, I could not feel my legs below the knees. After three years, going on four, with Gammunex C, I can feel down to my ankles. My symptoms were not that noticeable because they were being masked by advanced degenerative disks that started 20 years ago when I was 40. I have lost all my disks in my lumbar and cervical (neck). In August of 2018, they rebuilt my back from under my shoulders all the way to the end of my spine. That isn’t that germane, except that I no longer have the masking and can now feel what the CIDP pain is. Mine comes after 12 hours of IVIG, and it is severe for three days, incapacitating. However, about five days out, I can look forward, generally, to four weeks of up time before I go it again. After almost four years of this, I am sick of being sick. However, the hope is, I can now feel my ankles, cold on my feet, where I could not feel anything below the knees before. Gammunex C, made by Griffols, is the only formulary my provider, the University of Colorado Health System, will use. I found out that there are many clinics that will use no other formulary, but it really depends on your insurance, as it is one of the more costly.

    To the original question about how fast decline happens: GBS happens fast, but there is great hope there as it does not last after treatment (not saying it won’t come back). CIDP, however, can take years to become critical. I was critical, I had no pain, in fact, I had no sensation at all. I would estimate that took about two to three years to reach that level. I believe this is an individual thing, how fast, but those of you with rapid onset, if your Neurologist is saying CIDP, and won’t consider GBS, change providers. Same thing if they won’t use Gammunex C.

    Just food for thought.

    #116403

    Walter Rambow
    Participant

    One thing I have learned is no two cases are the same and not much is known of the cause or remedy. At 70 years old I was diagnosed in January 2019. This came about after a stroke in May 2018. Prior to this I had been experiencing severe cramps in the legs and constant calf muscle twitching. I was relatively active, hiking 4-6 miles a day, Drs. said drink water, thinking I needed more hydration. I had a real bad episode on a hike that prompted a visit to the Dr. Blood test showed high cholesterol so I started atorvostatin but other than that ok. I quit hiking and started biking 6 miles a day. Then In May I had the stroke. I had a great recovery after angioplasty to remove the clot from my brain. That is when things started to really decline. Pain in the buttocks, ankles weak. MRI showed spot on lung, nothing there after biopsy. Atrial fibrillation was thought to be cause of stoke, implant monitor, still have, it showed nothing. Pain and ankle weakness continued along with numbness and balance issues. Family Dr. referred me to neurologist. Met with neurologists in December 2018 and had nerve conduction test Jan 3 she referred me to a hemotologist/oncologist and had bone marrow sample taken Jan 4, based on the damage indicated on nerve conduction tests. Diagnosis CIDP. Started IVIG 4 sessions a month Jan,Feb,March, no improvement so in April did 4 sessions of Rituxan. Still no improvement, actually getting worse, numbness feet up to hips, and hands. Arms ok, thankfully. Saw hematologists yesterday and I’ll be starting another session of Rituxan, 4 doses. Drs. think the antibodies my blood produces tend to clot and that caused the stroke, at least one question answered. Pain due to numbness is increasing along with discomfort. Going back to see neurologist and am really looking for questions I should be asking and any suggestions for relief from pain. I use a CBD-THC balm which moderates the pain. Tried THC edibles but that only seems to magnify the pain along with increasing the imbalance. That’s my story to this point. It’s a hard adjustment going from an active person to one that everything becomes painful and difficult. Any and all suggestions are appreciated. Can’t have to much information regarding this rare and lightly researched disease.

    #116404

    ChicagoCIDP
    Participant

    Walter, thanks for sharing. Did you have aspinal tap done to check for elevated protein levels? I’m no expert, just a patient but with all the IVIG you’ve had and no success it doesn’t seem like you are diagnosed correctly to me. When I look at all the typical symptoms and test result I have, I clearly have CIDP. With what you are reporting it doesn’t seem to be the same at all. No Prednisone yet???? Best of luck in getting better asap!

    #116407

    Walter Rambow
    Participant

    No spinal tap, Dr. said he got better results from bone marrow and body fat sample. I have regular blood work ups done. Based on that he feels a second dose of rituxan is the best course of action. He does want to see me between the 2nd and 3rd dose. He also wants me to visit my neurologist.
    Monoclonal gammopathy Neuropathy associated with anti-MAG antibody Is the diagnosis that he has on my paperwork. Which I understand is CIDP. I will be asking more questions based on what I learn from this forum and readings. This whole thing is pretty scary, especially not feeling results and reading about what is down range from this point. Thanks for your reply.

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