CIDP Diagnosis and first IVIG Treatment

General General CIDP Discussion
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I am new on this network and joined to share my own experience and to hear from others with similar experiences, to give support if I can, and hopefully to get support.

On Monday last week (February 2nd) I started my first IVIG treatment in Milpark hospital in Johannesburg, South Africa.

I was diagnosed in February 2014 with CIDP. I had lost all feeling in the soles of my feet, all my toes, the tops of my feet and up my left leg as far as my knee. However, both heels on my feet and both my calves still have feeling. I was experiencing pains throughout the day and also at night. Every day in the evening once I tried to rest, I would have a generalised aching in both of my feet and legs, and no matter what I did, this wouldn't ease or go away.

My neurologist put me on a daily dose of lyrica and a higher dose during the night to be taken with pexola. Once I got used to these life was fairly normal except that I would still experience extreme shots of pain at any moment during the day, interrupting meetings, driving, sleep, etc. Around December 2014, I began to feel that familiar tingling and aching in both my hands and arms, though this would be sporadic and not 7 days a week. Around the same period, I began to experience extreme and sudden fatigue and had to lie down for an hour or two. I could feel that I no longer had the same strength in my legs and arms.

I have just completed my 5 days IVIG infusion and am back home again. Like most people, I don't like hospitals, but I was happy that something could be done about this condition.

Today, Monday 9th, one week after starting IVIG, and 3 days after completion, I feel a little fatigued, and experience the odd headache. My feet still have lots of sensations from tingling to pain and the numbness of course is still there. I no longer take my daily lyrica, but still keep them on standby!!

Are there others who have gone through IVIG infusion? How long did it take before you felt a real change for the better with a reduction of the symptoms (pain, tingling, numbness, aching etc)?

Looking forward to hearing from you.

With every good wish and God bless.

Raymond

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Raymond, welcome. I am so sorry you have this horrible disease. When I had my 1st loading dose I went back to "normal" almost overnight. 3 weeks later all my symptoms came back, and 4 days later I was in the hospital unable to walk. This disease seems to be different for everyone. It took about a year of trial and error for my neuro to come up with a treatment plan that worked for me. I have been fairly stable for the last 4 years, with little relapses here and there. I found following the paleo diet makes a difference for me. Others on this site have found that as well. It is not an easy diet to follow, and if I "cheat" I pay for it with muscle pain, headaches, burning and numbness in my feet and sometimes some weakness in my legs and arms.

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Welcome Raymond. Your symptoms sound similar to mine with the exception my hands became numb, achy and stiff. I was diagnosed in 2010 with CIDP, MGUS and POEMS syndrome. I've never heard of so many syndromes before. I started IVIG right away. It took approximately 3 months before my symptoms improved. I got the feeling back in my hands, the numbness in my feet has never gone away however my legs returned somewhat to normal, I still experience weakness. The shooting pains are fun and the fatigue is constant. ( Its a shame I had to get CIDP so I could take a nap everyday without my wife complaining.) In 2013 I had a stem cell transplant that didn't work. At that time I went off IVIG and started Prednisone. In November of 2014 I went back on IVIG due to my symptoms worsening. I'm doing better now. Keep a positive attitude some CIDP patients have it a lot worse. When I was in North Western Hospital in Chicago I could see the pediatric clinic from my room. Anybody feeling sorry for themselves should see those sick children and their positive attitudes. Hang in there, God and those children have made it a lot easier for me.

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Hi Raymond!

I was diagnosed with CIDP 18 months ago. I received the 5 day loading dose and now receive a weekly infusion. I was not convinced that the treatments were helping me in a measurable way until my doctor suggested that I miss two treatments while on vacation as the Insurance company loves that data...BAD CHOICE! I am not sure that I have ever completely recovered from that experiment as I am having great difficulty walking up any incline and seem to be experiencing a return of muscle spasms in my legs.

I believe the infusions have slowed the progression of my disease...I am not in a hurry to miss an infusion again. I have another auto immune disease that has several crossover symptoms so...I get into nature daily...Laugh A LOT...Help others...Stay very present...Eat healthy buy not neurotically and I do not sit for long periods as I cannot stand the tingling, numbness, pains, spasms or the committee in my head that brings me to a place of fear. I find that my attitude and perspective keep me very healthy...I am so very fortunate to have only what I have...I truly hope your experience with the infusions brings you relief and strength.

Blessings & joy!

Amy

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bluemoody said:

Hi Raymond!

I was diagnosed with CIDP 18 months ago. I received the 5 day loading dose and now receive a weekly infusion. I was not convinced that the treatments were helping me in a measurable way until my doctor suggested that I miss two treatments while on vacation as the Insurance company loves that data...BAD CHOICE! I am not sure that I have ever completely recovered from that experiment as I am having great difficulty walking up any incline and seem to be experiencing a return of muscle spasms in my legs.

I believe the infusions have slowed the progression of my disease...I am not in a hurry to miss an infusion again. I have another auto immune disease that has several crossover symptoms so...I get into nature daily...Laugh A LOT...Help others...Stay very present...Eat healthy buy not neurotically and I do not sit for long periods as I cannot stand the tingling, numbness, pains, spasms or the committee in my head that brings me to a place of fear. I find that my attitude and perspective keep me very healthy...I am so very fortunate to have only what I have...I truly hope your experience with the infusions brings you relief and strength.

Blessings & joy!

Amy

I was diagnosed with CIDP in 2013 - had loading dose - then 2-week interval doses. Arbitrary decision by neurologist to go to 3 weeks resulted in paralysis, emergency room, palliative care, etc. Went back, gratefully to 2 weeks. Devised my own schedule - 8 months 2-week, 4 months 2-1/2 week, then 3-week. Just started 3-week successfully - will stay here Jan-Aug then try 3-1/2 weeks. Easy does it! Am also taking 1 gram cellcept AM and 1 gram PM . Hate it but I'm not falling apart. Prof39

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I have been on IVIG for more than 10 years. I receive my treatment of 72mg at VA Loma Linda Hospital;.I was onsteadymentevery 3 months. They run the speed at 100. My Dr changed my treatment to every 4 months. I am now ipayingthe price of not walking in 3heelchair waking hours. I now type with 1 foponenger. mhandas are quickly becomingparaslysissed. Shortnes of breath is my biggest worry. I noe sree the head 0f the depart,ment young guy that seems to be on top of the situation. Sorry this is 2 much 2day, keep the faith

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Sunshine has probably said it best when she compared us and the disease to a snowflake - everyone different, in symptoms and response to IVIg and other meds.
Your symptoms sound pretty "typical" but your response will be specific to Raymond and no one else.
Good luck. BTW my IVIg was discontinued permanently today b/c of lack of significant response.

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Raymond, what you will find is that there are common elements to many of the stories, but they are all different in other ways. My case was initially somewhat similar to Daisy's, but then took a different path.

I will keep it fairly short: I was first diagnosed with GBS, and had my 5 day loading treatment. The improvement was amazing - not back to 100%, but much better. A few months later I had a very serious relapse; collapsed in a parking lot, and was completely unable to stand on my own. I was then re-diagnosed with CIDP. After some false starts, I was put on a regimen of 3 days of IVIG, every three weeks. That worked pretty well but was very disruptive.

The difference is that after a couple of years of this, my doctor suggested transitioning to an oral immune system suppressant, azathioprine (generic for Imuran). After many months of taking this, I was able to gradually stop the IVIG treatments. Now, all I take is a daily dose of azathioprine.

I am generally in pretty good shape. I am not as strong as I used to be, and I get tired easily, but I am quite functional. I have a little numbness in my feet, and some pain in my lower legs that might or might not be due to the CIDP. I can walk unaided, and on a good day can walk 2 or 3 miles. I can't do every thing I would like (I had planned to work on Habitat when I retired, and that is out of the question), but I can do every thing I have to.

So, my messages to you are: don't give up! Everyone is different, but almost everyone responds to some kind of treatment. It may take a while to find the right treatment for you, but keep at it. Read and learn as much as you can. Don't be afraid to challenge your doctor, or even to change to another one. Very few doctors are familiar with this, and it can really help to find one who is experienced. In the meantime, stay as active as possible, so that you don't lose muscle strength along with the nerve function. And try to stay positive - focus on the things that you can still enjoy, and not on the things you can't.

Best wishes! Bill

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I'm sure your Dr will tell you this, but Imuran requires some time to take effect, and even then it is very gradual. My Dr said I wouldn't see any effect for six months, and that was about right. But then I started feeling better between IVIG treatments, and was gradually able to lengthen the interval between treatments, until I was off the IVIG altogether.

Also, my Dr is very upfront about the fact that he cannot prove conclusively that the Imuran was the cause of my improvement. For some patients, the CIDP just "burns itself out," and that might have been the case for me. But, he has had success with other patients using the Imuran, so I am pretty confident that the Imuran did work for me.

Finally, you should be aware that Imuran does have drawbacks. Because it suppresses your immune system, it makes you more susceptible to infection and other illnesses, including skin cancer. I haven't had any real problems, except that when I get a cold, it drags on forever. And I am much more careful about using sun block.

But, all things considered, Imuran was the right treatment for me.