BryanF

Your Replies

  • BryanF
    April 1, 2017 at 7:36 pm

    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

    BryanF
    April 1, 2017 at 7:20 pm

    fellowcidpguy

    Awesome to hear!

    BryanF
    April 1, 2017 at 7:18 pm

    Hi,

    I’ll just relate my experience, nothing as serious as yours breathing wise.

    Back in July/August of 2016 when I think the CIPD was just beginning to present itself. I had shortness of breath when I exerted myself. I have asthma, so the doc added an extra dosage. It continued until I started steroid treatments to treat the CIDP.

    Since February, I’ve either have had constant allergies or sinus. My nose runs constantly, with post nasal drip that gives me this annoying little cough that seems to like to irritate all the weakened muscles in my back.

    I have had allergies all my life, but usually a Zyrtec will take care of it. This seems different. Very persistent, as if my immune system is run down–which it is, since muscle weakness has returned I have a run of 5 straight days of IVIG starting Monday.

    Is it related to CIDP? Maybe since our immune systems are compromised, we get these low grade annoyances more easily?

    Bryan

    BryanF
    March 31, 2017 at 6:39 am

    SPORTA,

    CIDP just seems to be full of surprises.

    I finally went to see my neurologist on Monday.

    He cut the steroid dosage which seems to have cut down on some negative side effects, including the weakness in my legs.

    But, because of the numbness in my hands, arms, legs and feet, plus a bit of motor control loss in terms of walking, I’m starting a 5 day course of IVIg on Monday.

    I think I was hit by 3 things over the last month.

    – CIDP hits back when you push too hard or when you are run down by the flu or a cold.

    – Prednisone dosage was too high for too long and it was sapping my strength and in general making me feel horrible. At 20 mg I feel stronger, my thinking is clearer….

    – I’m now in the midst of a relapse.

    I’m hoping with a tolerable dosage of prednisone that the immune system still stays suppressed and the IVIg gives me the needed boost.

    BryanF
    March 27, 2017 at 8:03 pm

    And, thanks everyone who responded. It truly helps and definitely helped at the doctors this morning.

    Now I just have to see how to break it work that I’m more than likely out for 5 days. ; )

    BryanF
    March 27, 2017 at 6:45 pm

    Next Monday, I’m supposed to start a 5 day outpatient regime of IVIg. Would have started today, but couldn’t get insurance approval fast enough to get in today. The Doc insists that it is 5 straight days….and with the outpatient clinic being closed on weekends, that entails Monday.

    After that, I’m insisting on a monthly infusion. But one step at a time.

    I called off work for 2 days and seemed to have regained some strength. Hopefully I can make it through to next week on the recharge….

    BryanF
    March 26, 2017 at 10:44 am

    Tom

    Your experience with highs and lows seems to mirror mine.

    The reason I asked is that I think I reached the tolerance level of my prednisone regimine.

    I’ve been on it since December. Besides the weight gain, I think it has started to weaken muscles, definitely is impairing my thinking to an unacceptable point, and on Friday, my feet and ankles swelled up like balloons. I can’t even put gym shoes on!

    I see my neurologist Monday and I’m going to insist on continuing my treatment with a maintenance dose of IVIg. I’m done with steroids.

    BryanF
    March 22, 2017 at 3:03 pm

    Thanks for the replies. They validate my suspicions and the 2-3 year window sets some new expectations. I’ll work on setting some new limits at work. BTW, I’m finally starting to feel better today. So it took 4 days to basically recover from over-exertion.

    BryanF
    March 21, 2017 at 9:49 pm

    Jim,

    Thanks for the pep talk. Didn’t realize that the healing process took that long. That is truly amazing and daunting. Is that the repair of the myelin or other things?

    I’m glad to hear Rituximab has offered you some relief.

    1 to 3 years. Simply wow. I guess I need to adjust my expectations.

    Bryan

    BryanF
    March 16, 2017 at 9:41 pm

    I’m right handed. Running, never did it before I became sick ; )

    I’m walking without a cane and back to work where I’m on feet for 8 hours. It still wears me out after a day of work, but I’ve been feeling stronger as the weeks go on. I’d say I’m 75-80% back to normal, but that last 20% is what returns one to “normal”…

    I think GBS/CIDP just weakens the muscles so, the recovery takes time. Add into the equation the time it takes to rebuild the myelin and of course, the possibility that some nerves were damaged in the process.

    My neurologist estimates it might take 5 to 6 more months to see where recovery takes me. At that point, we’ll see if there was actual damage to the nerves themselves.

    And, I feel the same way. As I fatigue, I worry that the immune system is once again attacking the nerves. But my measuring stick is this.

    -can I still feel hot/cold
    -can I pinch myself and feel it
    -can I feel texture
    -can I feel things with my toes

    When I answer yes to these things, it abates my fears of the return of the disease.

    So far, my ability to sense and feel is there and getting more sensitive each day. At this point, I really chalk it up to muscle fatigue and just thank God the numbness and motor control issues aren’t coming back! : )

    I’ve been pacing myself which does help. Definitely too much exertion at once sets us back.

    My goal though is to be back on the golf course by May, even if it means only hitting the ball 150 yards of the tee with a 7 wood.

    BryanF
    March 16, 2017 at 5:58 pm

    I have CIDP that hit really hard in December and early January. I still am slowly recovering muscle strength, but maybe I’m at 75% or so. I tire easily and I’ve found that my calf muscles in my right leg are significantly weaker than my left, and that they actually hurt.

    I think it is safe to say GBS/CIDP definitely atrophies the muscles and the rebuilding process is slow undertaking.

    BryanF
    March 15, 2017 at 9:13 pm

    While your symptoms could be caused by a number of things, your neurologist should rule out either GBS or CIDP as a precaution.

    I went through a similar progression. Thyroid testing, ruled out. Then my vitamin B-12 levels were low, wasted 3 weeks rebuilding their levels while I got progressively worse.

    If I remember correctly, my journey with CIDP started with sharp pains in my toes and often foot pain. It came and went at first. Then I started with sharp pains in my pointer fingers in both hands that alternated. Finally I started experiencing numbness in my hands and feet, ultimately ending up with the glove and sock feeling. Fatigue and loss of motor control followed.

    So push for testing to rule out more serious issues. Being a CIDP sufferer, an electrical stimulus test and a lumbar puncture are the 2 ways to determine if you have it. I can’t speak to any other ailments. Maybe someone with GBS can relate their experiences.

    Good luck.

    Bryan

    BryanF
    March 12, 2017 at 5:47 pm

    Did the lumbar puncture find the protein associated with CIDP? If it did, the insurance company should okay the IVIG.

    I was diagnosed in December. First I was given 80mg of Prednisone and told it would take a month for it work. Unfortunately, by January first I could barely walk and basically collapsed in the doctors office on Jan 2nd. He put me in the hospital immediately and started a 5 day regimen of IVIG. With a couple days I was back up walking with a cane.

    After that, I’ve been in 60 mg of Prednisone, have lost the cane and I’d say I’m back to about 80% of normal.

    While I’m trending in the right direction, the frustrating thing I’ve discovered about receiving the last 20% is there are ups and downs instead of a linear progression.

    As to supplements, since I’m on steroids, I take a multi-vitamin to replace calcium, magnesium, Vit C, B, Zinc, Vit D, Folic acid, Biotin, and selenium. I eat a daily banana to replace potassium.

    Hope some of this helps.

    Like I said, the IVIG was a miracle drug for me. I truly thought I would never walk again the first day in the hospital. Now, I’m back to work, which while tiring, is good milestone to be at.

    Best of luck and keep us posted.

    BryanF
    March 8, 2017 at 9:17 pm

    Thanks for the responses. No, I’m on prednisone, 40mg for at least the next 2 months. Haven’t had IVIG since my hospital stay in early January.

    This disease is so weird. My recovery, while in the long run seems to trend incrementally towards the positive, each and every day, my legs, feet, and hands present me with different sensations.

    At least it is a “sensation” and not numbness, but right now it seems to be a phase of painfulness. Additionally some days I seem to have a lot of muscle strength in my legs and other days they seem weaker. At least I’ve seem to have gotten over the effects of the bug.

    Additionally, I stronger suspect that some of the “imbalance” or weakness and even sensations I feel are tied into the prednisone. Somedays its effects seem a bit overwhelming to me.

    BryanF
    March 3, 2017 at 7:43 pm

    I’ve been on 60mg a day from December thru January and from then until the foreseeable future at 40mg a day.

    Weight gain in the gut and the moon face and some minor side effects I’ve had since December.

    With the alternative being the return of CIDP symptoms, I’ve reconciled myself to the side effects. I can shed the weight when I’m weened off in about 2 months.

    The only thing I make sure to do is take a multivitamin, calcium and vitamin D3 pills as directed by the doctor.

1 2 3 … 8 9 10 11