New Member, thoughts please?

Hi Elihab,
Welcome to the krappy world of dealing with CIDP…
You have a rare disease–it happens in about 1 person per 100,000 people.
Because it is rare, not a lot of research is being done, however, there is a stem cell transplant research going on right now at Northwestern in Chicago, however, it is unfunded, and patients have to come up with the bucks to pay for it on their own, (approx. $250,000.00), as insurance companies will not cover “experimental procedures”. So it is discriminatory if you are not rich…
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This stupid disease reacts differently in each person. The neuros have a protocol of treatments they follow for the CIDP. And if one treatment doesn’t work, then they go to the next step, or try giving you a combination of treatments. Personally, I failed at all the steps, and am on the last step of being treated with chemotherapy to just slow the downhill progression, as none of the treatments worked to put it into remission.
However, if you read through posts here, or I am sure more people will be coming along to add their hello’s, you will see that IVIG or steroids or combo of both, MANY TIMES will put it into remission. There is much hope for you in the beginning–it all depends on the person, and how much nerve damage there is.
Anyways, yes–your neuro is right on with his plan of treatment.
The normal protocol goes:
-High Steroids–which, yes, can be a problem if you are a diabetic, as they really throw off your blood sugars, especially if you are an insulin diabetic.
-Using IvIg–I can’t remember the normal dosing of this–someone will probably come along here to tell you that, as it was a long time ago I had tried IVIG.
-Then there is using immuno-supressents, such as azathioprine, Cellcept, etc. There are a few of them.
-Then there is using plasmaphereses.
-Then there is using chemotherapy, such as Cytoxin.
They will use any combination of the above, until they find out what might work for you. Don’t get depressed by this, as this will take a LONG time until they might hit it right for you.
You can google anything mentioned, as you have a lot to learn about it…
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Okay–pills that might help you:
-Neuropathy pain-Gabapentin is usually the main med. I see he put you on 2700mg per day. That can be increased to see if more will work for you, if that dose doesn’t work. I am on it. Plus, I have Vicodin to fall back on. Some people take Cymbalta or Lyrica. Whatever will work for you…
-Muscle spasms, cramps, or contractures–if you get these–you may not. But, if you do, I am on Flexeril 10mg three times daily. That will work for many people. It didn’t quite work for me, and my doctor added another pill with it, a low dose of Valium 2mg three times daily–the combo worked for me.
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There are nerve conduction tests to see how your CIDP has affected you.
If you continue to worsen, down the line, they may or may not opt for a nerve biopsy, or a skin biopsy. This again might be to see how much damage there is or being done, if you are not responding to treatment. Don’t wig out if either is ordered–they are simple procedures–one is done via surgery, (nerve biopsy), the other in a doctors office, (skin biopsy).
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You will also probably experience great fatigue. Everybody here has it. You will find you will have to learn how much you body can do, and not do. Most people find that by resting alot, you can rejuvenate. Personally, my doctor has me on Ritalin so that I am not mostly bedridden. But, that is used only when the fatigue gets really bad.
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There is also a chance, it might hit your autonomic system, if you continue to worsen. That shows up, if they do a nerve biopsy. And they would add medications as needed to treat what areas would become affected.
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I have given you what good possibilities can happen. And I’ve given you some worse-case-scenarios, (I fall into the latter).
I do hope the IVIG will work for you, as it helps probably about at least 75% of the people with CIDP.
You will also see here, people talking about GBS, (Guillain Barre Syndrome), which is the acute form. CIDP is the chronic form. They are both related.
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I hope this helps you start the learning stage. Come in here if you need to vent to–there are MANY friendly people here, who are going through what you are, and we all have our bad days…
KEDASO
(Ken)

Hi Elihab,
Yes your doc has followed protocol with the ivig. The problem with disease as mentioned above by ken is that everyone IS different, so the protocol has to be adjusted accordingly. I assume you had the standard 2g/kg amount of ivig. Some people as my 12 y/o respond within hours others DO take a few months. During this critical time, there are a couple of options. You could do pp to cleanse the body of as many autoantibodies as possible and then follow with ivig. Ivig has to follow, because the pp will wash it out. Then you may have to get the ivig more frequently than monthly. Some get it weekly, bi-weekly or every three weeks, others longer. Some get ivig and solumedrol, this also helps with reactions to ivig. Some get ivig and steroids. Since you have diabetes, this could be an issue. Something else to consider, some ivig’s to contain sugars, what brand did you use. Some such as octagam contain maltose as a stabalizer and require a special glucose specific test when you get your blood work done. You should discuss that with your doc if have not. Gammaguars and Gammunex use amino acids as stabalisers, not sugars.

Imunosuppressants and ivig ARE another option, cell cept in particular has had some mixed results. There are others. As long as your doc is vigilant and aggressive and LISTENS to your needs and concerns you should be ok. Waiting is not an option and waiting IS what will end you up in a wheelchair. Try to keep a positive attitude and a good relationship with your doc. Shold things go bad try another doc. Good luck and keep us posted.
Dawn Kevies mom

Hello and welcome to the site! I think everybody explained it very well and want to wish you my best. Hope they can get you treated and feeling better soon. Hugs
Linda H

[COLOR=black]Hello,[/COLOR]

[COLOR=black]There is another option available: therapeutic plasma exchange, also known as plasmapheresis. It is part of my treatment regimen and is quite effective for me. At one point, I used IVIg alone. While it was effective, it was clear that I was going to need large doses frequently to keep me stable. I had better results with plasma exchange.[/COLOR]

[COLOR=black]You might want to ask your neurologist to try it. He may not have wanted to because it is considered very invasive, and rightly so. However, if you are willing to be diligent and vigilant, I think the invasiveness of the treatment is a small price to pay. Why is it considered invasive? If you have large veins in your arms, two 17 gauge needles are used, one in each arm. A 17-gauge needle is very big, and so is considered invasive; it is not like give a blood sample or even donating blood. Many people (me, for example) don’t have veins big enough for such needles. If you are like that, you would need some sort of venous access catheter, which is nearly the definition of invasiveness. For the first round of plasma exchanges, I had a temporary catheter placed. Once we knew that the treatment worked well, I had a permanent catheter placed. It has been in place for nearly 3.5 years, with only minor complications. I think it has been well worth it.[/COLOR]

[COLOR=black]Trying plasma exchange might be better than using prednisone and dealing with further diabetes complications. My opinion, as somebody who has used plasma exchange successfully, and not as a medical professional, is that it would be worth a try. Of course, only you and your doctor can decide which treatment course is best for you.[/COLOR]

[COLOR=black]Once you have talked to your neurologist about it, come back here and I can give you further information about plasma exchange. Other suggestions that I can offer are on the dosage of the azathioprine and on the administration of the prednisone. [/COLOR]

[COLOR=black]The typical dose of azathioprine (after a ramp up to that dose, checking for liver damage during the ramp up) is 2 mg/kg/day. My neurologist and I decided to try a somewhat higher dose, about 2.3 mg/kg/day. That seemed to help me quite a bit. If you weigh more than 110 pounds, you might want ask your neurologist to consider a higher dose. [/COLOR]

[COLOR=black]On the prednisone, you might want to consider what is called a pulse. Under this scheme, you take a week’s worth of prednisone all at once each week. As a diabetic, you would need to be particularly vigilant about your blood sugar for 36 hours or so after the dose and continue to monitor your sugar closely the rest of the week. The advantage to the pulse is that many of the other side effects of prednisone are reduced. [/COLOR]

[COLOR=black]Now, as to having CIDP. The main thing to know is it is a disease to try one’s patience. For example, I have been diagnosed for over 3.5 years, and we are still trying to find the best treatment course for me. I expect that process may take as long as another 1.5 years. As a second example, it could take azathioprine 6 months to show its full effect. You will just have to wait it out. [/COLOR]

[COLOR=black]I mention these things not to depress you, but to prepare you. I understand the frustration and even the panic you can experience when treatments don’t work because I have been there. I wish I could promise you that you will get better. I can’t, though, because I am not God. I do know, however, that it is possible to get better, because most people do, and because I have. Better does not necessarily mean back to what you were before, but it does mean a nearly normal life. I have been very nearly a quadriplegic, and now I do nearly everything I want to do. Your doctor is right, people respond very differently to the treatments, with some having very little improvement for months, and then starting to improve, sometimes gradually and sometimes rapidly. All I can say is give it time.[/COLOR]

[COLOR=black]Godspeed in finding a treatment that works. Suggest plasma exchange.[/COLOR]
[COLOR=black]MarkEns[/COLOR]

Welcome,

As other have said CIDP affects all of us differently. Treatment options are also different. You need to work closely with your docs to figure out what will work for you. That being said, this forum has helped me talk to my docs about other options that I didn’t know existed! Keep asking questions and reading.

I also have diabetes type 2. I take Metformin and Levimer insulin in the morning and at bed. Along with diabetes I have high blood pressure and blocked arteries. I have had 3 stents put in the main artery leading to my heart and I am currently sitting with 5 of them over 50% blocked and I am only 43!

Physical therapy can be done at home to a certian extent. For your feet place a small hand towel on the floor and try to pick it up with your toes. Another option is to try to pick up pens, paper clips marbles etc. I am sure other will have some ideas that can help.

I find a hot pack helps with the pain.

Rhonda

[SIZE=”4″]Hey!!! There’s no good time to get CIDP. It sucks whenever it rears its ugly head. I just got my life together. My future was so bright, I had to where sunglasses! Just became single, great job,new car & BANG!!!!!! Its not fair.
IVIG make my disease more aggressive. Columbia Presbyterian, in NYC, realized that there are more than 1 strand of this wonderful ailment.Good luck & welcome. Someone is always here for you.[/SIZE]

Hi,
PLEASE check on this as I am just a mom so take what I say with a grain of salt. I “THINK” and I use that looseley, maltose does not count as a true sugar. The problem is….. if you do a regular glucose test it will look like a problem and people are incorrectly given insulin. Hence the necessity for a glucose specific test. Pretty sure that is the name of the test. I am usually pretty sure about my info, but always like to make sure that you do your own research, two heads are better than one!!!! Just thought I would throw out info I came across. Good luck!
Dawn Kevies mom

Hi Joanne,
Glad you found this group as there will be heaps of answers here to many of your questions.
Am sorry you have joined the ranks here, as it definately is a challenging condition to conquer!!!!!!
You have already had good response from fellow CIDP’ers (or others with experience etc) so wont repeat the info, as MarkEns says it is all so very individual as well and unfortunately drugs/treatment can take time to show their benefits, and to get true accurate pictures of what is going on is a sure test of ones patience.
I especially wanted to pass on my hope that things turn around speedily for you, yet when things seem pretty gloomy progress often never appears to happen quickly enough!!!
Also in my experience (was diagnoised 2 yrs ago, and at worst was a quad status) it helps to keep things in perspective on a daily basis, I felt i never had far to look to find others worse off. I too felt the timing couldnt have been worse, (was primary caregiver for 3 children 2, 4 and 6yr olds, and a very partime nurse – as never believed in placing my children in childcare) yet in hind sight with all the support and love shown over these harrowing times it was the ideal time in a way, and by taking one day at a time we got through those pretty dark days. My family have grown through our battles and are stronger and wiser for it. My now 4 yr old still recalls being strapped into my power wheelchair as my arms couldnt hold her securely as we walked the other 2 children to school. (Now we all literally race to school!!! – or i piggy back the 4 year old!)
Accept all offers of help. People feel useful doing what you may consider mundane chores, and they dont offer if they dont want to help so dont hold back in accepting their offers.
All the best and am pleased to see you have been started on the right track treatment wise.
Kiwi chick

First keep your chin up ..things do get better !!;) But by all means be your own advocate ….. Remember that the doctors are only giving an educated guess . You know your body the best and if something doesnt feel right or you have questions ….. Don’t feel bad asking and always expect an answer 🙂 I was just in the hospital for my IVIG and my nurses had never administered the IVIG and so I explained how they normally got mine and what worked best for me . You will learn as you go ….. Read as much as possible and by all means there are so many people here who are so willing to give advice or if you just need to vent …… Knowledge is definitely power when you are dealing with all this ! Good Luck !

I was wondering how your doctor determined CIDP vs Guillain Barre. The symptoms you discribe match symptoms 100%. I have Guillain Barre. I did not have IVIG as I was not diagososed until week three and the symptoms had not progressed past feet partial paralyis, specially toes and abilitity to move toes and ankles upward. My finger were numb,which effected the writing and fine motor control. I two progress to a walker. Steps were the pits. It is now 8 months, and the walker is gone. I still have weakness in legs for going up stairs but can go down them. My feet still feel like I have boots on and have limited range. I take neurotin 2 time per day at 300 mg and this seems to help the weird feeling in feet. Just wondering why they said CIDP.

Elihab,
You won’t decline to a walker. Your doc seems proactive and most importantly you are asking questions. About hte PT, while it is important, it is equally important not to overdue it. For instance, we have been decreasing Kevin’s dose since about last august and he also has had MANY virus’s during the winter. Long story short, since August he has been playing like a typical wild 12 y/o riding his bike 5 miles at a time, trampoline etc. Since Nov. and all of these sicknesses he has been SLOWLY getting weaker (using up ivig faster with all of the colds I presume) and still trying to maintain the same rigorous activity. Over the last month, he has extremely fatigued his muscles, which I think has added to his migranes and made him more tired weak and sore. We have just comp[leted a new loading dose to build up the antibodies (on Friday) and his muscles already feel better. He was so tense from overdoing it his shoulders were rolled forward and shrugged. Since he has been relaxing this whole week from treatments and the treatments themselves, he is much better. So… exercise with moderation so as not to over stress. About your daughter, she will be fine, what you cannot give her in physical activity, you can increase in words and hugs. I REALLY do believe that this will make her stronger and more compassionate as a person witnessing your situation. I will say a pray for you guys, us and everyone tonight!!! Well, I will say a couple and generalize it!!!! keep strong. If you would like to talk on the phone, you can pm me. I was so thankful for the kind people that helped me in the begining, I would consider it a blessing to help someone else in return.
Dawn Kevies mom