A New Battle of and Old Foe

General General CIDP Discussion
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Hi Everyone,

I was excited to find this site and joined as soon as I discovered it. Although new to the site I am not new to CIDP. My struggle began back in 2000 when I started to lose strength in my legs and my hands. It was one doctor's appointment after another for about 6 months until I realized that if whatever I had was curable that there would be a lot of damage that would be irreversible as I went on and on trying to get a diagnosis. I finally went to the Mayo Clinic in Scottsdale, AZ and two weeks later was given the diagnosis. I returned to Vermont where My neurologist started treatments. I started with the IVIg which was very effective the first time around. The second time I began the protocol it was discovered after a sudden cardiac event that Icould never use IVIg again. The next course of treatments was plasmapheresis and prednisone. I was on prdnizone for 9 years and went through a large number of the plasma exchange. Early into the battle I found that I was unable to work because of the disease, the treatments and the unstable moods caused by the prednisone. In 2005 I started getting the upper hand over the CIDP so I returned to the workforce. My last plasma exchange was in 2009. The symptoms of the disease faded away and I stopped taking prednisone in 2010(a great day indeed). For five years it seemed that the CIDP was gone. The disease returned with a vengeance about 5 months ago. I have cut my hours of work back to less than 8 hours a week. I begin treatments again tomorrow. I can no longer use prednisone and plasmapheresis is no longer a practical treatment as a result of where I live and how difficult it is to have them in SC. The new treatments will be in surge steroid treatments administered intravenously. I have no idea what to expect but I go into the new treatments with guarded optimism. I look forward to finding out how others have done after these treatments.

Jim

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Hey Cookieman
And we’re glad you found us! That’s quite the CIDP journey you’ve had. Thanks for the introduction and we hope you like it here.
Seenie

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Hi Jim welcome to the group!

As scary and uncertain relapse is, you sound like you are in the best of hands with your medical team! Take good care of yourself & I'm sending all of my positive healing vibes your way!

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First surge treatment this afternoon. I spent a little bit of time as Dr. Jeckel and Mr. Hyde. I am back to the good guy. I am hopeful. All is well.

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Hello Cookieman. Welcome aboard to this forum from a fellow South Carolinian, albeit from the upstate. I think you will find good listeners and valuable shared knowledge here.

I was intrigued how similar our cidp paths have been. I was DX'd in 2001,remissed, relasped in 2007, and have been symptom free since 2008 ( with some residual foot numbness) Then the "old foe" reared his ugly head again this spring.

So, as they say ' its game face on and back to war". I also started my first loading dose today, (IVIg)

I hope your new treatments prove effective for you , and sincerely wish you a quick and thorough recovery.

You are not in this battle alone.

Charles

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Hi Charles and thanks for your reply. It is interesting to hear the similarities in our stories. I would be glad to hear more to better understand the disease. I was 40 when I was diagnosed and went from riding centuries on my bike to checking out canes, walkers and wheelchairs. I have enjoyed a five year remission and managed to retire and return to full time work twice in my battle. I trust you are feeling good after your IVig treatment. My experience with IVig was at first very promising. It was the first treatment I attempted back in the fall of 2000. It worked. After the first set of treatments I was symptom free and ready to take back the world. Unfortunately, the success was very short lived. I was sent in to have a second set of treatments. After the first treatment of the second set, I had a severe, life threatening cardiac reaction to the IVig. I was told that I should never have another one or it would likely kill me. I then started with the plasma exchange and ever changing doses of prednisone. Over the next 8 years I can't tell you the number of treatments I had. They worked but they did not last long. I was pleasantly surprised with the long remission and never took it for granted. Today I had my surge steroid treatment.. For a while I turned back into the nasty man I knew back in the prednisone days. I am hoping that this is not a lasting reaction. I am hopeful. May God give you grace as you go through your new protocol. Get strong.

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Cookieman, my cidp has been mild for the most part. My first symptoms began after I experienced a nasty viral infection that kept me out of work for two weeks with a fever,body rash, and what felt like electrical shocks through my body.Doctors never did determine its cause, just unknown viral infection, When I recovered from that I began noticing tingling in my toes and feet. Eventually was dx'd at Emory in Atlanta in 2001 with cidp. No treatment was prescribed at that time. I had a bad flareup in 2007, did a round of IVig, and have been feeling good until this spring.

I had my second infusion today. Using Home health care this time. I must say I actually like it. My nurse has been doing infusions for years, very thorough, monitors my vitals every 30 minutes or so,and is pleasant to talk with. Start to finish she was here a little over 3 hours.

So far no problems, and NO Headache! I hope the next 3 days go as well.

I am not sure what to expect as to when I should see/feel improvement from my infusions. My Neuro has me pre-medicating with Benadryl, and they are keeping me foggy headed. He also has me on solu medrol with each infusion.

When I had IVig in 2008, I did a 5 day loading dose,which was a miserable experience, So I went back to Emory for a second opinion, was told IVig would not do anything for me, and did not resume my infusions. However , within 3 months I was symptom free, feeling great,until this spring.Go figure.

So I am cautiously optimistic. My local Neuro feels this is the best course of action, but i also worry , what if I don't respond? I have a folllow up with my Neuro after 3 treatments to determine whether to continue or not.

Sorry for my rambling, I am curious as to how quickly you begin to notice improvement from your surge steroid treatment.I have been told that steroids can put you on the edge. I hope that the side effects are minimal for you, and that the treatment proves effective.

Grace and peace to you as well

Charles

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My husband has been on IVIG for over 14 months now .Started out with 5 days of it ,next month 5 days.Then he was cut down to 2 days a month and got worse.Went back to 2 days every 3 weeks.Timee the 3 weeks are rolling around he is ready for it.The dr talked abt doing a plasma exchange and predisone,but said he thought his age he couldn't handle it[78 yrs0.So we are back to infusions.Do any of you have cold hands and burning feet ?His is terrible,he wears socks to sleep in and he is wheelchair bound.I feel for anyone that has CIDP.wE LIVE IN Tennessee AND HAVE TO GO TO Nashville. GOD BLESS.

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I am sorry your husband has been suffering so much with the disease. Even though I have been fighting it for 15 years, I have had a lot of time where it was under control. I do get the burning, painful feet and often wear socks to bed with feet hanging off the end of a pillow. He will understand. I have gone from one cane and sometimes two and sometimes use the electric carts in the store. After this first infusion of steroids I am on a steroid high and have barely slept in 40 hours. An immediate positive result is that some long term back, hip and leg pain have cleared up since yesterday so I am optimistic that the CIDP can be put back in its place. We are over in SC. I can get the infusions just a few miles from my home. May God bless you and your husband. Jim
nana said:

My husband has been on IVIG for over 14 months now .Started out with 5 days of it ,next month 5 days.Then he was cut down to 2 days a month and got worse.Went back to 2 days every 3 weeks.Timee the 3 weeks are rolling around he is ready for it.The dr talked abt doing a plasma exchange and predisone,but said he thought his age he couldn't handle it[78 yrs0.So we are back to infusions.Do any of you have cold hands and burning feet ?His is terrible,he wears socks to sleep in and he is wheelchair bound.I feel for anyone that has CIDP.wE LIVE IN Tennessee AND HAVE TO GO TO Nashville. GOD BLESS.

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Hey Charles, I can ramble with the best of them. Some of us seem to have CIDP that does respond to treatments or we are just blessed and our bodies go into remissions in spite of the treatments. I can never figure this out. My remission lasted about 5 years. When it broke out, it did so with a vengeance. I had the treatment yesterday morning. I became Dr. Jeckyl and Mr. Hyde. I am the nice guy for the moment. Also, I have not been able to sleep and have what seems to be unlimited energy. That will change but I don't know when. I was out working on a couple of painting last night at 3:00 AM. Crazy to have that much energy. I hurt my back last year and I have almost constant pain in my hip and leg as a result of a car accident. All of the pain went away this morning so I am already feeling better. As for the CIDP, no change yet. God is good and I know that whether I am walking with canes, without them or in a wheel chair that He will give me the grace to honor Him. May the Lord give you relief from your symptoms or the grace to endure them. Jim

Making lemonade said:

Cookieman, my cidp has been mild for the most part. My first symptoms began after I experienced a nasty viral infection that kept me out of work for two weeks with a fever,body rash, and what felt like electrical shocks through my body.Doctors never did determine its cause, just unknown viral infection, When I recovered from that I began noticing tingling in my toes and feet. Eventually was dx'd at Emory in Atlanta in 2001 with cidp. No treatment was prescribed at that time. I had a bad flareup in 2007, did a round of IVig, and have been feeling good until this spring.

I had my second infusion today. Using Home health care this time. I must say I actually like it. My nurse has been doing infusions for years, very thorough, monitors my vitals every 30 minutes or so,and is pleasant to talk with. Start to finish she was here a little over 3 hours.

So far no problems, and NO Headache! I hope the next 3 days go as well.

I am not sure what to expect as to when I should see/feel improvement from my infusions. My Neuro has me pre-medicating with Benadryl, and they are keeping me foggy headed. He also has me on solu medrol with each infusion.

When I had IVig in 2008, I did a 5 day loading dose,which was a miserable experience, So I went back to Emory for a second opinion, was told IVig would not do anything for me, and did not resume my infusions. However , within 3 months I was symptom free, feeling great,until this spring.Go figure.

So I am cautiously optimistic. My local Neuro feels this is the best course of action, but i also worry , what if I don't respond? I have a folllow up with my Neuro after 3 treatments to determine whether to continue or not.

Sorry for my rambling, I am curious as to how quickly you begin to notice improvement from your surge steroid treatment.I have been told that steroids can put you on the edge. I hope that the side effects are minimal for you, and that the treatment proves effective.

Grace and peace to you as well

Charles

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