Introducing me

[tesstess]

Hi

I'm from australia. A grandmother. Was diagnosed in March after a few months of severe migraine like headaches, aura-like (Northern lights :)) visual disturbances many times a day and fatigue. Lucky for me my doctor didn't assume, as I did because I've suffered from migraines before, that the fatigue was related to the headaches. He kept ordering tests till he found something- inflammation, anaemia and finally the high ANCA marker. I had a kidney biopsy and I have kidney involvement but lucky for me it was all detected early and so far no permanent damage to the kidneys, just leaking protein. I had been on drugs for thyrotoxicosis for 5 or so years. (propythouricil PTU - probably I've spelt it wrong). Kidney doctor and rheumatologist believed this was the likely cause of the wegeners, tho the thyroid doctor says he's never come across it.

Anyway, I was pretty happy about that because if it was drug induced it would go away when I stopped taking the drug. I've been improving over the past 6 months with immune suppressant drugs. But I'm sorry to say that I think I'm having a flare. I've been off the thyroid drug for 4 months so I can only assume that wasn't the cause. Due to see docs again inDecember.

So, my question is - are forum members familiar drug induced wegeners? Does anyone have info or insights? Best wishes to you all.

[Jayne 14]

Welcome TessTess
I have no help / experience with drug induced Wegners
Just that this is the best place for help advice & support on your journey however it started
Best wishes to u on the road ahead xxx


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[mishb]

Hi TessTess and Welcome to the forum.

Which part of Australia are you from? I am from Melbourne.

I can't say that I have heard of Wegeners induced from thyroid drugs, but that doesn't mean it isn't possible.

I hope someone can put some ideas forward for you.

Also, if you are on facebook, we have a WG/GPA group for Australian's and New Zealanders. It might be worth an ask in there too.

https://www.facebook.com/groups/516643745050360/

[tesstess]

Hi. I'm from south coast of nsw. Visiting doctors in sydney. I will check out the Facebook page. Thanks a lot for your reply.

[Psyborg]

Welcome To the forum.

[gilders]

Hi Tesstess,

Welcome.

I, personally, don't believe any drugs can cause Wegener's to someone who isn't already genetically predisposed to it.
Except for painkillers and antibiotics (frequent tonsillitis) , I'd had little other drugs by the time I was 17 (when I was first diagnosed with WG).
Perhaps some drugs can trigger WG for someone who is predisposed to it, but even that seems unlikely to me.

There is one similarity with your story - my mum has had her thyroid removed, but I'd still doubt there's a link between thyroid and WG.

[mrtmeo]

Hi Tess,
I have seen vasculitis clinical cases in the literature due to thryoid drugs.
However, I have not seen where taking the drug away got rid of the vasculitis or not because I didn't read the whole cases.
I believe that many things can trigger vasculitis because there are cases of hypersensitivity reactions causing vasculitis including vaccines and psychotic medications.

[annekat]

Welcome to the forum, Tess. This is a great place to be for support, friendship, advice, and information. There is a lot of variety in how the different forum members experience WG/GPA, and yours is different than I've heard so far. Since they seem to have caught it fairly early, it would seem there is hope for an early remission and minimal damage to any part of your body. I cannot comment on the thyroid drug. I'm just glad you found us and am looking forward to hearing updates and any other comments or questions you may have.

[vdub]

Welcome! I am on levothyroxin, but as treatment to damage caused by wegs. I haven't heard of thyroid drugs causing wegs or any other AI disease.

I am in the "downwinder" area from US nuclear tests and our area has a high incidence of thyroid problems. However, I haven't heard of a higher incidence of wegs and you would think that one would follow the other if there was a link. But its not something I've really researched.