I follow this site a few times a week, and I post every three months (ish). I’ve suffered from this terrible condition since July 2014, when I arrived back from holiday in the US. At first it was passive heating, where I would need to exercise to suffer from a reaction. However, it’s steadily progressed even worse, and now I struggle to even laugh too much incase my body temperature rises.
Fortunately, telfast works for me. the 120mg stops the itching. However, when I do have a reaction, I have tiny red marks under the skin (I’m guessing it suppresses the hives). The 180mg does the trick and I don’t suffer from any itchiness, hives or any of the symptoms I usually get. These are a complete godsend. But my dermatologist said that if i take these every day, my immune system would gradually weaken the effect of them. So I only take Telfast when I know I’m going to come up in a reaction (for example, going on a date, or socialising with friends, or a job interview).
I’ve had about eight blood tests since I’ve had this condition and changed doctor practices twice. Here’s the part which is interesting. The practice nurse completely messed up my last blood test – I was meant to be tested for my hormones, vitamins, thyroid once again. But she messed up (God knows how), and checked my liver instead.
It turns out I have Gilbert’s Disease. This basically means that the liver can be quite incapable of flushing out toxins – bilirubin builds up in the blood which can cause a variety of symptoms such as tiredness, IBS and stomach pain (which can be mistaken for an intolerance). What is interesting is that if the liver is incapable of flushing out toxins, perhaps it’s trying to come out in sweat which is causing the reaction. It’s certainly worth looking into and I’ll keep you guys updated.
Another route to look down is Niacin. I’ve been keeping a food diary for eight months now. Unfortunately it’s not everyday as whenever my skin is good, I try to forget about it! What I’ve noticed is that my skin gets progressively worse when I’ve had a lot of Niacin. I started to acknowledge this when my friend at work had a bad skin reaction to a protein shake – and his doctor said it was the high dosage of Niacin. From this, whenever I have cereals in the morning, this is fortified with niacin, secondly any meats like chicken, beef, pork, turkey are highly concentrated with this vitamin.
Therefore, if I have cereals in the morning, any meat in a sandwich or at dinner, this can build-up (especially if your body doesn’t need as much of this vitamin as another person). What is interesting, and i don’t know if it’s the same in the US and other countries, but here in the UK, any wheat is fortified with Niacin, which seems ridiculous. So wheat can also provide the body with Niacin it doesn’t need.
I thought I would mention these two things as they are worth looking into, and I would like to help researchers who sometimes look at these websites, to possibly inspire them to conduct research into these avenues.
I will keep you all updated on this quest! Hopefully one day, we may find an all-round cure for it 🙂
-Lauren
Hivesguy says
Lauren,
Wow, thanks so much for updating us and sharing all of that information. That’s really interesting about the Gilbert’s disease, and I’m sorry to hear you have it. You made some interesting points about how that could be affecting other things. Other cholinergic urticaria sufferers may want to investigate that if they ever get testing done.
Thanks again for sharing, and keep us updated.
John says
Lauren,
Long ago I used higher doses of niacin for a few months to stop the urticaria. It actually worked somewhat. Like you I got the little red pin size dots but not much itchiness or flushing. I think the effect was similar to having a hot shower in that it creates a reaction and then things subside, and the nicacin itself causes a flush. Niacin has some effects on the hepatocytes and some cancer doctor name Gerson (now dead) used to have it as part of their regimen if I recall. Anyway, it has side effects and worrisome effects on the liver for long term and I also ended up sensitive to niacin for decades. I still avoid it as far as a supplement goes. I seem to do better not having wheat and don’t usually eat fortified foods anymore if I can avoid it. I have had a long time curiosity if idiopathic urticaria was a reaction to HBV DNA antigens since I long ago had HBV and HCV. It may actually be that the niacin was part of a regimen I followed where I was basically cured of those two diseases permanently without interferon which was just beginning to be researched back then. Those with HBV have viral DNA integrated into their liver cells and it continues to be there as they replace themselves. The cells operate normally and without disease and usually this fact is assumed to be no big deal. After all we have LOTS of unused DNA segments in our genomes that look like viruses. Still, there could be a link. On the other hand as Ben as found our constant intake of certain foods is 95% of the problem. I do better with no supplements and eating mostly rice, vegetables and fruit with some fish…guess I should try turkey some time to see if that works better. My symptoms did lessen quite a bit when I made some dietary changes but they are still there during colder weather and inexplicably other times, but I am not quite as strict as Ben..almost so maybe that is part of it. Also, skin fungus seems to be correlated. I digress though. What lab test determined you had a liver problem? Were your AST ALT normal? Thanks for sharing.
John