Glutamine

Does anyone have any experience taking glutamine? Is it ok with ITP? I had rituxan 4 weeks ago, platelets still fine at 170K. but, I am having so many tingling, burning, skin crawling sensations. I asked the nurse practioner to look back in my records and I reported the same thing after rituxan last time ( and any time my ITP is active). She suggested trying glutamine. She said it helps some of their chemo patients with neuropathy. I decided not to go for Lupus testing again as I have no joint swelling, and I feel okay. Just the weird sensations and the muscle pain that I have with fibromyalgia. Sed rate is normal.
I just always leary to try a supplement wondering if it could affect platelets.

Dru:

Before you do that, it might not be a bad idea to have some things checked to see if there is a reason for your symptoms. There are a few things that can cause it, such as low B-12, low ferritin,etc. and not checking those could cause problems down the line. Neurological symptoms shouldn't be ignored, especially if there is a reason that can be treated.

Sometimes when ITP is acting up, it's because other autoimmune issues are too. My SED rate was 29 at the last check, but I've found that number has nothing to do with how I feel. It's been in the 60's and I've felt the same as when it was normal.

Have you ever noticed that Prednisone helps the muscle pain? It helps mine a lot, which is why I don't think I have Fibromyalgia even though it seems exactly the same. Fibro doesn't respond to steroids, but Lupus myalgia does.

I have taken Alpha Lipoic Acid (Antioxidant) for the tingling sensations in the past. There are a lot of articles that claim it helps and while I'm not sure if it did, it sure didn't hurt and my symptoms did get better. Could have been coincidence. I also take Fibro-Ease (from Biospec) and it does help a bit with the myalgia on really bad days.

Can you tell me more about Sed rates? I looked it up, and I think I understand what it is, but I don't think mine has been checked. Who gets Sed rates checked?

A SED rate measures inflammation. Usually people get tested when they have joint or muscle pain or have connective tissue disorders such as Lupus and RA, or arthritis.

Thanks Sandi. I will definitely try those supplements. Are they available around at drug stores, or do I need to go to a health food store?

My symptoms of muscle pain gets much better/goes away on prednisone. A small dose like 2.5mg helps that (but does nothing for my platelets).

Two weeks ago my hema ran blood tests: iron panel, B12, thyroid, because of the tingling. I will talk to her next week about additional testing. I guess I'm reluctant because I have gone through testing for this before; neurologist, rheum. I had both a bad rheum doc and bad neurologist tell me that I was just anxious, there is nothing wrong with me, I should go to a psychologist. I had a good rheumatologist who did very thorough testing, He didn't take my concerns lightly and didn't make me feel like a hypochondriac. After all the testing he said he would diagnose fibromylagia, which was not to be taken lightly either. If that doc was still around I'd have no problem to go back to him but he has relocated.

So for now I'm going to try the glutimine plus those supplements you have used and will talk to my hema when I go Oct 4.

I got them off of the Internet. Amazon - I read the reviews first.

Do NOT let doctors who tell you it's all in your head get to you. That makes me mad. Keep trying.

Sandi,
I went to the hema doc today. My platelets are good at 168k, pretty stable over the past 6 weeks following Rituxan.
I talked to her about the numbness and tingling sensations I get. She ordered an ANA and some other blood tests.
She will call me when the results come in.
She feels like some of this might be related to the blood sugar problem I have been having that started with the prednisone but has not really gotten better. So she did an A1C test for the blood sugar and wants me to see my primary dr and a nutritionist.

I ordered that fibro-ease from amazon too, thanks for the tip. My hema never makes me think things are all in my head, but some other docs sure have, makes me mad too.

Good, that's a start! I'm glad you are pursuing this. It could very well be something that shouldn't be ignored.