What is the truth about CIDP ?

[QUOTE=ConnorZmom]
…I was doing IVig and my symptoms didn’t improve and worsened only slightly. Now I am on high doses of steroids…7 weeks and I am getting worse.
I feel like I want to go back to the Ivig b/c at least then, I wasn’t getting noticeably worse….

Stacey[/QUOTE]

It looks like the IVIg was helping slow things down. From what I have read on other post, it takes a while to “fine tune” the IVIg dosage. In my case I’ve been slowly getting worse over the last year. The IVIg is helping slow things down. From day to day and week to week there doesn’t seem to be much of a difference. It is only when I compare what I could do last year to what I can do this year. Of course I’m a year older [64 vs 63]so there are naturally some things that would have slowed down where I had CIDP or not. :rolleyes:

I would suggest talking your IVIg dosage over with your neurologist. It appears that it was helping. As far as the future goes, if I could tell you that I’d be a multimillionaire stock broker instead of a Air Force retiree turned teacher. Actual I really like things the way they are 🙂 with the possible execption of the CIDP

Stacey,
To tell you the truth I don’t think there is one truth. And from what I am gathering it seems that this condition is a hit or miss thing with no predictability or certainty. My neuro has been pretty honest about this and admits that they are just trying treatments that have been known to work in similar conditions and don’t really have a clear picture of CIDP. I was diagnosed around 5 years ago and we had to see what the pattern of development was for me. In other words, I seemed to have a progressive type rather than the remit. kind. However, I have noticed that I do have bouts of extream exhaustion and weakness and it takes a few days to feel better but I still have a baseline of weakness. I too can still walk, type, write etc. but I am finding duration to be an issue. And tonight I took my dog for a walk without a cane and found I got flappy footed, my legs felt like jello and I got really winded. I had a hard time catching my breath. Very differant from even 6 months ago.
Luckily I can’t be put on steroids because of my diabetes so I tried IVIG but got sick from it. I am now tolerating chemo but not having any major changes or improvements. My guess is that each one of us are sort of guinne(sp?) pigs and whatever we go through is how the medical profession will eventually define this more clearly. I think we are our best source of understanding. I know this doesnt help but it comforts me to know that we have eachother and not just doctors. Hang in there and dont hesitate to speak up to your doctor about your sense of this.
Linda

Hi, Stacey.

As you’ve no doubt seen on other threads, each CIDPer seems to be affected differently. In fact, many neurologists believe that CIDP is a group of disorders rather than one particular disorder.

In many ways, CIDP is similar to MS, including in its progression. Some people have a relapsing-remitting form, others a progressive form, and some a combination of the two (I have a relapsing/remitting course in the motor nerves, and a progressive form in the sensory nerves). And what you start with can change, usually going from relapsing/remitting to progressive. There are a few rare cases in which the CIDP burns itself out, and the patient appears to be cured, although there’s always the possibility that the CIDP could start again. But for most of us it’s lifelong.

I tell people to give it a year from the time they start treatment before anticipating the course the CIDP is taking, and to keep a journal of symptoms, benefits, etc., for at least that year. That way they can get a clearer picture of progression.

Regrettably, there’s no way of knowing what will happen five years from now, or even tomorrow. All you can do is live every day as it comes. Focus on the good things, learn to laugh (particularly at yourself: my son has been very helpful in this; any time I start to feel sorry for myself he calls me Crip and reminds me of the first time I fell in his presence–looking back, it was quite funny).

And keep us updated on how it’s going!

Best wishes in the battle,

Deb
London

🙂 I just finished my 30th. ivig in the past 10 months. I get three good weeks without fatique, but i do notice my overall progression of weakness in legs. I don t take any other drugs and no bad reactions from ivig treatments, so life is good!!!! I have a evaluation appt. in sept. hope to stay with regiment without drugs. hope this helps your outlook

Hello Stacey,
I can only speak for myself, I don’t know if this can happen for all. My doctor’s never told me what form of CIDP I had, but since I am the person living with it, I believe I had the slow progressive kind because months would go by before I’d get a little worse.

When a treatment we are getting works, CIDP can be controlled so that it will stop progressing. When it’s controlled, we can heal and regrow myelin. I was being treated with IVIG’s, prednisone and on methotrexate for a year. I stopped progressing and have been off ALL, THAT’S RIGHT, ALL treatments for CIDP for 3 1/2 years now. I have shown no sign of a relapase, I maintain what I have, I remain stable.

The downside, the bad news, though I am no longer progressing, I am left with with alot of residuals. I was severly damaged and for me I may have healed as much as I can. I may always need a wheelchair. If you stop progressing when you are only mildly damaged, you probably have a much better chance of being almost as good as new.

Sometimes I wonder if some of us with very slow progression, primarily sensory and only minor benefits from IVIG might not have the variant I have, i.e antiMAG IgM. It is still CIDP and all the symptoms are the same, physical exam, EMG showing demyelination, spinal tab with abnormal protein. It requires a special blood test done by a specialized lab. In my case it was done at the neuromuscular department at Washington U. in St. Louis. I have no idea why my neuro had this test done except she is a very thorough person and a scientist working at a teaching hospital at the U. of Colorado as assistant professor.
My first symptoms, minor numbness in my toes, showed up 6 years ago. It’s been progressing very slowly and finally reached my hands last year. Correct diagnosis was only done 2 years ago and IVIG was started then. It seems to slow it down. Going to Thailand for two months and skipping a treatment earlier this year was a good test. The last 3 weeks there my condition was deteriorating significantly, a sign that the IVIG does help. Back in the States it took a while to catch up. I just noticed this morning that I was able to carry a full cup of coffee all the way from the far end of the kitchen to the breakfast nook without spilling, no cane or rollator. In Thailand I couldn’t do that anymore at the end. I still have a lot of work to do on building up strength after the fractured knee.

That reminds me, I better get busy and do my PT homework. At 11 the dial-a-ride people will pick me up to take me to Sam’s Club to do some shopping. Carol is in Oklahoma visiting her mom for a week and I have to fend for myself. Dirty dishes are piling up, that has to wait til later.

The truth is that there is no truth. No one knows what is going to happen. We can all speculate & try to figure it out, but CIDP is such a hard disease to get a handle on. As others have said, each person is different. They key is to find out how it affects YOU and what works for you specifically.

I do know that research is being done on auto-immune diseases, specifically MS. CIDP is related to MS and I TRULY believe that there will either be a cure or a better understanding & treatment for CIDP and MS in the next 10 years.

Tons of money is being poured into research for these disease & many scientists are working hard to understand them better. It’s hard to not remain optimistic when I read the many medical articles about discoveries that are being made nearly everyday.

Do I believe that my daughter will go into remission? Yes. Why? Because I have to in order to make it through everyday. Postive thinking is more powerful that you could ever imagine.

Do you keep a notebook of how you are feeling from day to day? You should & then take it to the dr with you for every visit. You can go over it to let the dr know that you aren’t getting any better on the steroids.

My daughter got worse on them too. It happens to some people. I’m not sure why, but it does. If IVIG was working for you then you need to try it again. Make sure that you do a loading dose (usually over 5 days) to get optimal results. There are other treatments options available too. Don’t sell yourself short & stick with the ‘roids if you don’t think they are helping. Move onto something else.

Good luck.
Kelly

My Neuro said that the ‘roids don’t work on some variants of CIDP. After months of doing solumedrol I was pulled off and put back on the IVIg. Happiest day I had had in a long time! Steriods make me sooo moody, I was either cranky, crying or just down right mean. Those around me were pretty happy to see the ‘roids go too. I’ve got the slow, progressive type for while the IVIg will make the symptoms better they’ve never went completely away. I’m learning to take it one day at a time and put my faith into them someday finding a cure. I still have my “poor Pattie” days but I usually just go back to bed and sleep it off, lol.

Stacey,

Here is the best I understand…..

Your immune system is attacking and destroying myelin that surrounds, protects and helps enable the axons. As the myelin is destroyed, visible symptoms emerge, tingling, burning, etc. If the damaged myelin feeds enough muscle cells in a muscle group, there is loss of motion or function.

Some drugs and/or therapies try to relieve symptoms. To get at the root cause would need to eliminate the abberant immune system. IVIG does this by flooding the body with “good” anti-bodies, which seems to stimulate other immune cells to search and destroy the bad guys.

That leaves the damage in place, and Schwann cells in the body can start to repair the myelin. If the axon isn’t destroyed, function can return. If the axon is completely non functional, numbness, loss of strength, etc will be the “residual” as Liz accurately puts it.

If there is one or more remaining t-cells with the bad coding left, they will replicate and continue the attack and destruction. The relapse/remission cycle is the body winning and losing in its attempt to control the problem. The chronic progressive is a slow continual growth of attack on the myelin.

To answer your question, Is it forever? Probably.

BUT……. 5% CIDP patients have spontaneous and complete remission. Liz seems to be here. She has residuals, but no more attack. Different people are afflicted differently. Some more severe so than others. How severe will yours be? Who Knows?

Deb’s advice is great… Live each day like you should. Enjoy all that you have. You may keep it all, or you may lose more, but you can control how you feel about it.

Other’s advice is always great, moderation and don’t aggravate your body too much. Stress isn’t the cause of CIDP, but it is an aggravating factor.

From all I have read, most people who have CIDP deal with it successfully and continue to live near normal productive lives. Focus on those things and stay positive. That helps.

I hold out hope that research in the autoimmune fields will give us a process to stop the attacks that CIDP brings. I hope research in pain management will help me as I deal with the way CIDP has affected me.

As to the last part, I am slowly progressive. My CIDP began in 1989, was diagnosed in 1999 or 2000, and continues today. I am on disability and have a lot of pain to deal with. Not all of the pain is CIDP, but complimentary things that arose from the CIDP.

I certainly hope that your case will not progress to a severe state, but if it does, you have many friends to draw information from.

Take care
Dick S

Stacey –

We called the crying, screaming, feeling icky & mean moods “‘roid rages” and BELIEVE me, Emily had the WORST ones a person could ever imagine.

From what I’m told, it’s supposed to get better…the ‘roid rages, I mean. Emily had them for 3 months & that was enough for us.

Emi’s nurse treats a little girl with another autoimmune disease who gets bi-weekly solumedrol infusions. Apparently the solumedrol has less side effects than the oral ‘roids. If your dr isn’t responsive to doing IVIG again, then maybe you can convince him/her to try to infused ‘roids.

I was told to give Emily some melatonin pills to help with her side effects. I never did because the lady at the health food store said that they were NOT safe for children. I guess they help with sleeping problems too.

I hope that you are feeling better today and that you have more good days than bad.

Kelly

Stacey,
To answer your question on how it started and where it is now, I was dx 5 years ago this month. It started with my right leg feeling like it was asleep{that tingling, numbness feeling and alot of pain} plus drop foot in that leg. Within the year both legs and lower arms were all like that. With the IVIg and cellcept the symptoms are not as bad, the only real new symptom I have is a problem a swallowing, liquids worse than food. The fatigue is alot worse, though alot of that I accredit to the meds. If I pace myself and do naps it’s not so bad. I was at the neuro a week ago and looking at my records for the last five years there is an improvement from at my worst three years ago and now. While it’s not gone it’s not totally controling my life. It took awhile to find a group of treatments that work. We tried alot of different combos. It takes time, everyone is so different when it comes to CIDP. Keep the faith, I’ll keep in you and the rest of this group in my prayers.
Pattie

I can tell you being a person with GBS reading your posts I take alot away from them. Good advice and makes me feel better knowing I have learned so much from your messages. I too can let the “POOR KIT” Days take over, but then I come here and see how all of you manage to listen to your bodies, talk to your Doctors and others with CIDP and get the best results by listening to your own bodies.

[LIST]
[B]Great quotes from this message thread I have gained to guide my life today![/B]
[*]Without the support from this group, I dont know where I’d be.
[*]Postive thinking is more powerful that you could ever imagine.
[*]I’m learning to take it one day at a time
[/LIST]

Thank you all for some good wisdom to take me thur this next week of my Journey. This will be put in my Journal to keep me thinking of everyone here! Great bunch that know what it is to be family! Thanks for sharing!

Kit, I’ve taken alot of the quotes and shared them with my aunt who’s been dealing with cancer and my mom who’s dealing with the two of us. So much of the wisdom here can not only help us deal with the CIDP but is great for anyone going through rough times. I print the words on pretty computer paper for them to stick on the fridge, I do the same at my home. Good pick- me- ups! Pattie