Tom M

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  • Tom M
    April 13, 2017 at 1:26 pm

    Buckeye55,
    I don’t have (nor had) joint pain or back pain. But I do get bite like bumps after IVIG. I went to a dermatologist and they took a biopsy. They told me the bumps were not from an allergic reaction to medication (but then again IVIG really isn’t medication)… but rather it looked to be a “contact dermatitis” or something like eczema. I found this a little questionable, because for me, it occurs after every IVIG treatment.

    The dermatologist gave me a medicated cream called Clobetasol and it works great. I put it on the red spots as soon as I see them popping out and not only does it take care of the itch, the bumps are pretty much gone in just a few days.

    I hope this helps and I wish you well.

    Tom M
    April 12, 2017 at 9:17 pm

    Hi Buckeye55@,
    First off… I don’t think you are “weird”. All of us that have CIDP or any peripheral neuropathy have strange symptoms that we never had before in our lives. Some of us can have similar symptoms or different one’s all together. Thus, as you probably know, no two people with CIDP have the exact same symptoms and most likely don’t respond to treatments in the exact same ways.

    My symptoms are somewhat similar to yours. Before IVIG I had numbness from my knees down to my toes and elbow down to my fingertips to various degrees. Pricking/stabbing pains were the norm… along with the occasional feeling like someone had a pair of pliers and was squeezing as hard as they can on various parts of my arms/hands, legs/feet. Gabapentin has really helped me with the pain. Like you, I take 1800mg a day (600mg three times a day).

    When all this first started, I was working as a technical Lead system programmer for a major insurance company. I had worked in this field for 30 years and to toot my own horn… I was really good at it. But when this disease hit me (and at first I didn’t know what was wrong with me)… I noticed the numbness and gait issues, but worse of all was that I felt major fatigue after only working for a few of hours. I became weaker and my hands started trembling. My thought process began to suffer. I couldn’t think straight and multi-task the way I use to. In fact, it was awful because I always prided myself in my multi-tasking abilities and helping my team to obtain their goals and professional growth. Eventually, I had to stop working. Not because I wanted to, but because I needed to. I wasn’t doing the job well and I certainly wasn’t much help to my team. I struggled with the decision to leave… to me… it was admitting I was no longer the same person I use to be. But leaving, ended up being the right decision for me… for I had to take care of myself now. I can’t take care of others if I don’t take care of myself.

    This response is long enough so I won’t go into all my initial treatments the first year of diagnosis, but I will give you a brief description of what my treatment is now…

    I now take IVIG every 3 weeks (one treatment). I initially started with a loading dose of 4 days in a row and then went to once every 3 weeks. I get an injection of Solu-Medrol prior to each infusion. For me, I noticed some improvement in my balance and reduced numbness in my feet and hands. I have been on the 3 week treatment for 6 months now. I feel I am making progress but it is SO S L O W ! ! ! ! I would say my improvement is about 1-2 percent a month and now am about 75% like you. I still have times that I regress. I attribute most of my bad times from me overdoing things and not getting the rest that I need (but not always). If I push myself too far one day, I pay the price for it by being ‘down’ for several days afterwards.

    To be totally honest, I’m not sure if IVIG will ever get me back to 100%. I sort of have my doubts as I am in my upper 50’s and have been taking some form of treatments for 2 years now. But I can say that I stopped all treatments for about 2 months (because I moved out of state). I saw no major difference the first month and a half, but then I quickly starting going down hill to where it was extremely difficult to walk with my cane. But my current IVIG regiment got me back to the 75%. Morale to story… for me, if I stop IVIG I get worse. I “maintain” and slightly improve with IVIG. A year from now.. I hope I am much better, but if I’m still at 75% then I will at least have to be glad that I didn’t get worse.

    One last thing, you talk about IVIG side-effects. For me, my first night after IVIG, I can’t sleep. I believe this is due to the Solu-Medrol. I feel wired and hungry all the time. The next day as the Solu-Medrol wears off, I begin to feel tired but still can’t sleep. Basically the first 48 hours after my treatments, I may sleep a total of 5-6 hours. I also have GI problems after IVIG. All in all, it takes me about 5 days to feel back to ‘my normal’ after IVIG. My CIDP life is sort of like a rollercoaster. Every 3 weeks (between treatments), I have 1-2 ‘high’ days where I feel really good (like 80-85% normal) and I have a few ‘low’ days where I can hardly walk at all or am just totally exhausted. The rest of the days I am either moving up to the ‘high’ days or moving down the rollercoaster toward the ‘low’ days. I usually start seeing improvements 7-10 days after my IVIG treatment. Some people see it sooner. For me it is usually closer to 10 days.

    I am so sorry for this long winded response. I hope in some way it may have helped you to some small degree. I sincerely wish you the very best. If you have other questions/concerns please post back.

    Tom

    Tom M
    April 5, 2017 at 8:32 am

    Hi Sandra,
    I certainly can understand your frustration and valid concerns. In fact, I believe many on this forum have experienced to some degree or another, similar feelings and worries. This disease can be SO relentless, unforgiving and let’s face it… down right SCARY!!! All I can do is share the knowledge of my own personal experience with IVIG and maybe it can bring some hope to you.

    When I was finally diagnosed with CIDP (I say ‘finally’ because it took 6 months to get a diagnoses), I had my first round of IVIG treatment. At the time I could hardly walk (even with a cane) and physical exhaustion was part of my normal every day life. I had severe numbness in my hands/feet and my hands shook at times when I tried to use them. I hated it because I was a ‘normal’ human being just 6-7 months prior.

    I was lucky, I saw marked improvement from my initial 3 day IVIG treatment. About 2 weeks after my treatment I was able to walk with my cane and felt as if I was back to ‘normal’. That feeling lasted for about 2 months. Then my CIDP came back with a vengeance. At times I could barely walk at all. Another round of IVIG did nothing for me and I was then put on IV Steroid treatments.

    IV Steroid treatments are far less expensive and my insurance company didn’t require prior approval. I stayed on IV Steroids for one year. My life was like a rollercoaster. I would have a few days a month that I would feel at the top of the rollercoaster, like I was close to ‘normal’. And I would have a few days a month where I was at the bottom… couldn’t walk or use my hands well… so exhausted I couldn’t leave the house. Then all the rest of my days would be somewhere in between… either moving up the rollercoaster or moving down. At times it would be so frustrating, having close to the ‘normal’ feeling for a few days and then start going slowly downhill right after (and can’t do anything about it). I eventually, learned to embrace those good days and use my energy to enjoy them instead of cursing why I didn’t have more of them (though I still wish I did!).

    After awhile, I really wasn’t benefiting from IV Steroids any more. I moved to Florida and my new neurologist started treating me with a different brand of IVIG. My initial “load dose” was for 4 days and it wasn’t pleasant. After the side effects were gone and about 10 days – 2 weeks after the treatment, I started noticing some marked improvement with my balance and dexterity.

    I now have IVIG treatments every 3 weeks (have been on it for 5 months now) and I can graph my gradual improvement on about a 2 degree scale. This can be frustrating in itself as we all would like to see improvement on a 90 degree scale and reach the pinnacle as fast as we can. Unfortunately, for many with CIDP, that’s just not how improvement is obtained. My ‘bad’ days however, are not as ‘bad’… and that in itself is a major positive. I don’t know if I will ever get back to where ‘normal’. I sort of doubt it as I am 56 years old and feel like 86! 🙂 But I am grateful for my good days and even my average ones as I know how awful the ‘bad’ days can be.

    All I can suggest to you, is to keep getting the IVIG treatments if the doctor recommends them. It is a positive sign that you have seen some improvement from the last treatment. You hopefully, should continue to see some improvement… but it may not be to the degree or within the timeframe you would like to see.

    With regards to the extreme fatigue… my experience is that once I started listening to my body (instead of my head)… meaning ignoring my head saying I could do something, when my body was saying ‘no’ I can’t… the fatigue improved. This meant, I limited my activities and when I felt exhausted, I would take a day (or several days) to rest and let my body heal before continuing activities at a level that wouldn’t produce severe exhaustion. When I pushed myself to exhaustion (by listening to my brain instead of my body), I became very disabled for many days until I rested and allowed my body to heal. Admitting and redefining my limitations, was one of the hardest and best things I ever did.

    I am so sorry for this post being so ‘winded’. I am not a writer and certainly find it difficult to convey my thoughts into the proper words. I sincerely wish the best for you, Sandra, and for improvement of your CIDP side-effects. You certainly are not alone in this, and this site is very good for support and information. If I can help in anyway, please let me know.

    Best wishes… sincerely,

    Tom

    Tom M
    March 27, 2017 at 8:48 pm

    Anytime Bryan. All of us who suffer from this type of neuropathy certainly find it helpful to learn from and sometimes lean on each other. I have found this forum to be very helpful to me in the past. Best of luck next week on your treatment. I truly hope it helps.

    Tom M
    March 27, 2017 at 7:37 pm

    This is one of those where you might had to have been there to find it funny… BUT…. I was in the shower one morning and was having what I call a bad ‘leg’ day. It’s when my legs aren’t listening to my brain and my balance is really bad.

    Anyways, as I stated I was in the shower and was trying to turn around. When I turn around in the shower, I have to hug the wall and turn very, very slowly so I don’t fall. I sort of slipped a little (without falling) and my wife heard it and asked if I was okay. I said, “Yes, I am fine…but I turn slower than a rotisserie chicken”! 🙂 We both started laughing a lot. A good laugh took the frustration away.

    Tom M
    March 26, 2017 at 11:36 am

    Oh yes… one more thing. I too had real cognitive issues when on the steroids. I worked as a computer system programmer for 30 years and to toot my own horn… I was really good at it. But I got to the point where I couldn’t think clearly and was making stupid mistakes that I never made before. It was worse because I managed a team of system programmers and it was very noticeable to all. I use to be able to multi-task with the best of them, but after fighting the disease for a year (and dealing with treatment side-effects)… I had to eventually retire much earlier than I wanted. I wasn’t doing my team nor my company any good… and I guess most importantly, I wasn’t doing myself any good either. My body needed to rest more. I became exhausted a lot and when I pushed myself I would be down for 2-3 days. Now that I no longer work, I am able to get the rest that I really need and I feel much better because of it. I concentrate on myself, rather than a large corporation! 🙂

    Tom M
    March 26, 2017 at 11:27 am

    Bryan – yes I would definitely talk with your doctor about the side-effects of the prednisone. Especially talk about the reward vs. risk topic. I had the exact same talk with my doctor when I was on IV Steroids for a year. Initially I saw improvement, but then it simply tapered out. Prolong use of steroids made me irritable and to the point, that the treatment was worse than the disease. He agreed and changed my treatment.

    I wish you well Bryan. This disease is bad enough to deal with. When there is real benefit in the treatment, it’s easier to go through the side-effects knowing there is some good that will come out of it. When that isn’t true anymore, then it’s time for a plan B. Good luck at the doctors tomorrow!

    Tom

    Tom M
    March 26, 2017 at 7:53 am

    Yes, I agree with B…. the effects from the loading dose (migraines) were pretty bad. Never had a headache that bad in my life… but it did go away. It also takes me 4-5 days to get rid of the milder side effects from the maintenance doses. One of the biggest side effects for me is not being able to sleep the first night (mainly due to the solu-medrol that I get with the IG. I use to get mild headaches from the maintenance dose but that seems to have passed. It does do a little number on my GI system though…. but all in all the maintenance dose isn’t that bad. At least for me I believe it’s worth it as I don’t have the lowest of low days anymore (unless it’s my fault… like over exerting myself too much).

    B – For me, it’s always good to hear from others who are dealing with this. For the longest time I felt a little all by myself and wondered if anyone else was going through this. This site really helped (and continues to help me). Thank you!

    Tom M
    March 25, 2017 at 7:12 pm

    Hi Bryan,
    I get IVIG every 3 weeks for my CIDP. I use to be on IV Steroids and was switched to IVIG 5 months ago. Without boring you with a long story, suffice it to say that the “plan” is for me to stay on the 3 week treatment plan for awhile. Once I get to the point where I improve to where I don’t feel I need another treatment after 3 weeks, then the doctor will change me to a 4-6 week plan. I believe this would keep stretching out until maybe I reached a remission.

    Personally, I do find that the IVIG helps me, but it’s a short term help. I call my CIDP life a “rollercoaster” ride. I have a few days that are really ‘up’ (good) and a few days that are really ‘down’ (bad)… and all the rest of the days are in between. I believe the IVIG allows me to have those good days (usually occurs for me 7-10 days after treatment). Without the IVIG I don’t believe I would have these good days. BTW… ‘good’ days for me are when my balance is significantly improved and I have no fear of falling. I can walk much better and faster (still with cane though). But I can’t seem to maintain the really good days for any more than 1-2 days every 3 weeks.
    My ‘bad’ days however, seem to be fewer and less ‘bad’, as I keep taking the treatment. I want to improve on a 90 degree scale… but the reality for me is that my improvement goes on a 1 degree scale. Seems to take a LONG time and one wonders if they will ever get back to ‘normal’ or ‘healed’ again.

    For me, after much time, I have decided to not linger on determining if/when I will be back to ‘normal’ again. It’s a waste of energy. Something to do, but doesn’t accomplish much! One thing I have found after living with CIDP for over 2 years and discussing with other patients… this disease affects everyone differently… so do the treatments. I sincerely hope the treatments will help you. I also hoped this answered your question.

    Regards,

    Tom