New member- dx CIDP

Hi Erin & welcome.

It is common to have more than 1 autoimmune disease. Many people here have multiple diseases going on.

I think I’m not reading your IVIG schedule correctly. Are you getting 40 grams once a week for 3 weeks, skipping a week & then starting over again or 40 grams every 3 weeks?

I think the most important lifestyle change you can make is to make sure you get enough rest & try to stay as relaxes as possible. Stress & over doing it seem to be the leading causes of fatigue & pain.

You don’t reach remission until your disease is no longer active. I don’t know the likely hood of that happening for adults but with children there’s a 70% chance of going into remission. I think most people who have CIDP will always have some kind of fatigue, even if they reach remission. I think most people realize they’ve reached remission by slowly tapering off of their meds & spacing them further & further apart.

Are you getting regular blood tests done?

Good luck,
Kelly

Hi Erin,
It seems like you are getting 120g every three weeks (administered weekly) is this correct? I would have to know how much you weigh to figure out if it is a maint or load dose. In any event, yes as Kelly said, once you have one autoimmune issue, you are more predisposed to another. I am not sure what the ivig you use contains, but find out if it is sucrose based as this could be a contributor to the pre-diabetes. I assume you are on a diet for the celiacs disease, it should help w/diabetes issue as well.
About immune supportive therapies, you have to be careful as so many things interact with another, in addition, you have the combination of diseases. I personally wonder about boosting the immune system as it is already overactive? That is something I am trying to figure out as well.
Regarding other therapies, some of the treatments have to do with fine tuning the ivig schedule ( as ivig does work for you) and perhaps adding a steroid, solumedrol for instance. Some people also introduce cell cept or immuron if they do not get help from the ivig alone. They are all personal choices you have to investigate carefully and consider and make your own decision based on your needs and concearns. My 11y/o started out on full loading doses for 8 months straight and is now tapering off by 10g every three months. We do not take any other drugs accept for aleve or tylenol for pain and inflamation with stiffness when he over does it.
Lifestyle change is a tough one, physically and emotionally. It is hard to give up things you love, but it is hard to pay the price when you suffer the next day. Kevin tends to decide what he really wants to do and if it sounds fun he does it and he knows to pencil in a rest day the following day.
About remission, I don’t consider it remission if one is still on ivig. We need the medicine to sustain the progress. Kevin is at this point, I consider it relapse free w/ivig. Once we complete our taper and he has no relapse for say 2 years, without ivig, the I will consider him in remmission. Looking back at your post, you mention you still have flares. How long do they last and are they followed by a “busy day” Could they be residuals or a response to the over exertion? If they are lasting maybe a week and not geting better till the next ivig, then yes I would say you are relapsing. But if it subsides before the next treatment, I would say it is fatigue/residuals. If you do genuineley fear it is a relapse, perhaps you are not getting enough ivig, either by amount, time span in between or maybe that it is once a week as opposed to one big whammy to flood the system with the good antibodies? Not sure, that is where the tweaking comes in. Good luck to you.
Dawn Kevies mom

Erin, thanks for clarifying your IVIG schedule.

I did a quick Google search & learned that Octagam contains maltose. That could be what is causing the problems with your blood sugar. You should discuss that with your dr. There may be another IVIG that would be more suitable to you.

Here is a link:

[url]http://www.drugs.com/octagam.html[/url]

I’m not sure on exactly what supplements you should take. There are others here who are much more informed on that than I ever will be. I’m sure they will chime in & offer some advice too. Don’t get discouraged if you don’t get responses right away. Sometimes it takes a few days for everyone to check in here.

I try to get Emily (7 yrs old) to drink green tea. It helps with inflammation. She takes a daily multi-vitamin to help with her iron because the IVIG lowers it slightly. That’s as far into the world of supplements that we’ve gone.

I do know that you shouldn’t take anything that will boost your immune system. That will just create more bad antibodies to attack your body.

The water skiing sound fun. I think the best thing a person facing a chronic condition is to figure out ways to live their lives & to still have fun. It sounds like you are on the right path with that.

Kelly

Erin,
i also have other autoimmune disease, I have spondylitis and uveitis.
i think everybody with CIDP has got one, if not is because it was not found yet and diagnosed,
it seems that all cames one “single kit”, relapses and remitting symptoms they all came and go together.
My complementary therapies are;
– no sugar, low fat, whole rice and wheat
– physiotherapy and exercises
– vitamins, omega-3 and soy lecithin to rebuilt the myelin,
– glucosamine sulfate as low profile inmunomodulator,
– been positive to this, life, etc
Best regards,
Pablo

[QUOTE=pjthomasset]Erin,
i also have other autoimmune disease, I have spondylitis and uveitis.
i think everybody with CIDP has got one, if not is because it was not found yet and diagnosed,
it seems that all cames one “single kit”, relapses and remitting symptoms they all came and go together.
My complementary therapies are;
– no sugar, low fat, whole rice and wheat
– physiotherapy and exercises
– vitamins, omega-3 and soy lecithin to rebuilt the myelin,
– glucosamine sulfate as low profile inmunomodulator,
– been positive to this, life, etc
Best regards,
Pablo[/QUOTE]
Hi Pablo,
I’m learning some new things from you. I found your comments about people with CIDP often having other autoimmune diseases quite interesting. I know that I have read that many have irritable bowel issues, and it seems that many people can look back prior to their CIDP and relate it to some high fever event. Now I am busy reading about glucosamine sulfate as a low profile immunomodulator. Fascinating what I am learning. You mentioned that you leave it for flare-ups only. Could you explain that a bit please? Thanks for your contributions.
Laurel

Here is a paper where it explains how glucosamines can regulate Th1/Th2 balance
ww.jimmunol.org/cgi/reprint/175/11/7202.pdf

“As glucosamine is able to effectively suppress acute EAE, has
low or absent toxicity, and has been safely used in humans orally, our study suggests a potential use for this drug alone or in
combination with other disease-modifying immunotherapies to enhance their efficacy and reduce their doses in MS and possibly other autoimmune disorders. Furthermore, because glucosamine functions not simply as an immunosuppressant, but as a mild immunomodulator, administration of glucosamine provides a novel immunoregulatory approach for autoimmune disorders. The
Journal of Immunology, 2005, 175: 7202–7208.”

Thanks Pablo. I have printed it now and will read it at my leisure.
Laurel

Erin,
As Kelly looked up the constitution of your particular ivig, I really do suspect that my initial comment of sucrose based ivig may be your culprit regarding the pre-diabetes. You seem very tuned into your body and taking care of it as best you can. I wish I could be that vigilant. Maybe it could just be as simple as going to monthly 2g/kg? Good luck to you and I am glad you found us!
Dawn Kevies mom

Hi Dawn, I get Octagam and Flebogamma as my IVIgs. The nurse at my infusion center told me Octagam does not contain sucrose. Was she incorrect?

[QUOTE=Dawn Kevies mom]Erin,
As Kelly looked up the constitution of your particular ivig, I really do suspect that my initial comment of sucrose based ivig may be your culprit regarding the pre-diabetes. You seem very tuned into your body and taking care of it as best you can. I wish I could be that vigilant. Maybe it could just be as simple as going to monthly 2g/kg? Good luck to you and I am glad you found us!
Dawn Kevies mom[/QUOTE]

Thanks, Erin!