(started this in the "hello" topic, but decided to put it separate) What’s everyone’s experience with allergies? My husband took Claritin-D for something like 5 years, and the RA symptoms started almost immediately after he stopped cold turkey. He wonders whether this long-term allergic-reaction-suppression could have somehow suppressed the symptoms of RA/LGL leukemia or whether they somehow triggered it. Don’t expect it to be related, but would be interesting to hear... if someone can explain to me in nice easy terms the difference between immune response and allergic reaction that would also be interesting -Deirdre

Deirdre-this site helped me-let me know if it helps. I have allergies as well as the LGL but it can be hard to tell which is LGL or what is allergies. I would imagine your husband has the same issue with his RA. http://health.howstuffworks.com/what-causes-allergic-reactions.htm

Hi Deidre, My understanding of the differences is this. I will try to explain as best I can. An allergic reaction is when you have been exposed to a substance that your body is allergic to. It causes an over reaction of your histamines which are produced to try and combat your allergy. In severe cases, you can have an anaphylactic shock. This is when your air ways swell significantly and you can't breath. It can be fatal if not treated immediately with adrenalin. Less severe reactions can be redness, itching, irritation, watering eyes, runny nose, cough, wheeze etc. An immune response is when you have been exposed to a virus or bacteria. The "bug" causes your immune system to react, ie it causes antigens to be made. These are little memory cells that circulate in your body and they bind with the bug to destroy it. Once the bug has been destroyed, the memory cells remain in your body and fight off any further exposure to the same bug. You become ill when you haven't been exposed to that bug before, as there are no memory cells to fight it, therefore your body has to make them. You get bette from a "bug" due to it being destroyed by our immune system. With LGL, we have reduced neutrophils, which are related to fighting illnesses, that is why we are susceptible to regular infections. What can be a cold to our family, can be something far more severe to us, as we have limited cells to help fight the infection. I hope this has helped, and I really hope I have given correct advice. I am also an immunisation nurse. When we immunise people, we are giving them a replica of a virus or bacteria, eg chicken pox. The persons body then reacts to the vaccine making little antigens that hang around in the body. If that person is exposed to chicken pox in the future, they have the ability to fight it and don't get sick. (well that is the plan, but not everyone "sero converts" which means they don't develop enough antigens to do the job well.) Hmm, ok, that is enough brain strain for the moment. Good luck. I guess it is night time there. It is 4 pm Sunday afternoon here. I will log on again tomorrow after work. Sharon

Sharon-I hope you don't mind me asking but live immunizations like measles or mumps would not be good for LGL patients right? Thanks for sharing your time! Michelle

Michelle, Live vaccines may not be good, however, they only have a very small component of the live bacteria. My haematologist said it was ok to have the flu vaccine, and that is a live vaccine. What is more of the question is that if we have this vaccine, will we sero convert? Are we wasting our time as we aren't going to develop very good memory cells. I don't know the answer to this? Sharon

Sharon- Thanks for answering my questions-and that is a really good question about the memory cells. I got the flu shot this year but my shot didn't have any life bacteria. This year personally since being on preventive antibiotics-my infections have cut way back. Last year I had over 7 infections-often lasting several weeks. I do hope that LGL is given a little more attention because it does affect people's lives! Being fatigued and in pain all the time isn't exactly ideal! LOL! Thanks, Sarasotap

Vaccines are interesting. My oncologist recommends that I take the flu shots and I believe they have really helped. But my work required that I be tested for measles, mumps and rubella titer levels. I had all 3 diseases as a child, but the titer level was 0. They gave me the vaccine 3 times and each time the levels remained 0.

That is interesting about the allergies. My son has had allergies for years and takes over the counter meds constantly.

I have a little bit to add about the flu vaccine. You really should get it every year, but only get the flu shot since the shot has heat-killed flu virus particles. The nasal spray (FluMist) is a weakened *live vaccine*, which will go wild in our bodies with reduced immune function. I think doctor's offices are required to post this danger, but it is good to be informed. As for the allergies, I have hay fever, cat, dog and mold allergies since I was about 9. I take a daily antihistamine and it works fine. I don't think they're connected, since 55% of the general population has some form of allergy.

I think you are correct about the percentage of people with allergies but how many of them take daily antihistamines? It is something to be aware of anyway. Thanks for the heads up regarding the flu shot. Interestingly, before my son had his spleen removed in April, he was told to get several immunizations as he would no longer be as able to fight off infections as readily. This was before he was diagnosed though. He did not have any reactions to the shots although at that time his counts were all very low.

My husband was wondering about this again - whether taking an antihistamine could help control the symptoms of LGL leukemia. He resumed taking Claritin-D daily a few months ago, and at the very least it helps him feel more mentally sharp. He has almost no symptoms of RA or LGL leukemia anymore, and his rheumatologist and oncologist are both amazed. Of course it's hard to say which medicine and dosage is having the biggest impact - he's still taking Methotrexate, Plaquenil, and several supplements though he has finally weaned off the Prednisone.

Deirdre, it's wonderful your husband is doing well now and interesting to hear your thoughts about antihistamines. My son doesn't really have allergies, but had bad excema when he was little. It turned into asthma during childhood, which he still gets from time to time now in his 20s (mainly controlled with Ventolin). Of course asthma, excema and allergies are all pretty interrelated.... FYI at end Sept. 2010, 5 of the 43 patients of RareShare members mention allergies, and 3 said that they take over-the-counter allergy medication.

when his rheumatologist first put him on Methotrexate for RA, he was prescribed three different supplements made by the company Theralogix: MTX-Support (folic acid + vit B12) to specifically counter the effects of Methotrexate, Thera-D (2000 IU of D3/day), and TherOmega (high potency omega-3's, which are good for joint health) In addition, his doctors told him to stay on whatever vitamins/minerals he was taking before, which include a mineral supplement (calcium, magnesium, zinc - he was worried about osteoporosis) and vitamin C chewables. Entirely possible those don't do anything, but they're cheap enough that might as well continue :) he just got prescribed Leucovorin Calcium, which sounds like a more hard-core supplement taken with drugs like Methotrexate to undo "severe side effects"