Hi! I am taking 10 mg of Methotrexate and 4mg prednisone for unspecified Vasculitis. I also take Tribenzor, Lipitor, Panteprazole. Aspirin81, Actonel, various vitamins etc. I was taking folic acid until I discovered I have a homozygous C677T MTHFR mutation so now I have to take methylfolate instead. The problem is that my lips have started burning and my eyes are red and burning and blur when I try to read. The doctor said I must be allergic to something but doesn't know what.
Could it be a new form of Vasculitis or a drug interactions or the methylfolate, or a side effect of methotrexate? Has anyone experienced anything like this?
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Hi, raspberry_tea! Thank you so much for replying and giving me that wonderful link. I have read quite a bit about MTHFR, but some of it was quite confusing, That link was very comprehehsive and had so much practical and easy to understand information for the layman. I have one doctor who is wonderful. He is not an authority on Vasculitis or MTHFR but he is trying to help me sort through it all. There were some very good suggestions for testing to see what supplements might be beneficial.....and which might be harmful that I will share with him. Sometime I feel like we are Don Quitxote and Sancho Panza jousting at windmills. But, I dont know what else to do. The "specialist" just want to throw drugs at me and ,so far, they aren't working that well. ( I'm in Fort Worth, Texas...... That explains a lot Best wishes to you too.
It sucks that you're having to educate your doctors. I hope you get some answers and improve soon. We are so lucky to have the NHS here, I can't really complain about the treatment I've had - it's been mostly positive. I just hate having this condition. Take care of yourself.
Does anyone at your clinics over there have any idea about why some people get Vasculitis and others don't .....other than it's just sitting in our genes waiting for something to set it off? If I knew what started it, maybe I could figure how to get rid of it. Wouldn't that be great????
Hi again, I was told when I asked that there was no known real cause vasculitis. There has been links made with a bacterial infection (Streptococcus, I think but not sure or what strain- I'm sure others on this forum may know) and other triggers have been mentioned such as pregnancy and certain medicines. I have read that some people related stress and anxiety as contributing to the cause of their illness too. Personally, I'm as in the dark as you but I have modified my diet and that has improved my overall well being. I have recently embarked on a gluten free diet as well in the hope that it helps me further (as I have hormonal problems and psoriasis too). I'm only in my second week but I'm already feeling less sluggish. I'm focused on improving the quality of my life as I'm fairly certain if there was as diy cure we'd have found out by now. Still, I live in hope. Best wishes
I think it would be better for you to get a referral to a vasculitis clinic where they will be able to unravel this cocktail of drugs you are taking which may not be giving you any benefit in the long run. Perhaps write an email to John and he maybe able to help with some advice. John.mills@vasculitis.org.uk
Suzym2u......That is a wonderful idea, and I would love to go somewhere where someone knows something about this awful thing i was "unlucky" enough to come in contact with. (That's how one doctor put it.) However, I am in Fort Worth Texas....not really close to any well-known clinics. I am a divorced, retired teacher and do not have the funds to travel far. So, I am pretty much stuck here with a handful of semi-interested doctors and my computer. I have learned some interesting things though, For example: a MTHFR defect, if not addressed can lead to fibromyalgia, vacsular plaque formation, cardiovascular and neurological disease, autism etc. So, discovering your genetic defects and treating them in a timely manner might change the course of some of these autoimmune diseases. I am also adopted, and there were no autoimmune diseases of any kind in the family I grew up with. Another interesting bit of information: I found out from 23&Me that 93.5% 0f my ancestors came from Northern Europe.......mainly UK, France, Germany, and Ireland. The whole thing is very interesting, unexpected and terrifying!
As mentioned before, I have unspecified Vasculitis of the subclavian, brachial and its branches, and the right vertebral arteries Carodids and aorta are fine. It's somewhat of a mystery! I also have slightly high blood pressure, borderline cholerterol, mild osteoarthritis, osteopenia, and acid reflux. i take medications for all those things, as well as steroids,methotrexate and aspirin81. Any thoughts or information you could give me would be greatly appreciated. Best Wishes.
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Best wishes to you too.
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