Hi
Haven't been on for a while, but I have just today been diagnosed with temporal arterisis and it has freaked me out slightly in that it can cause blindness, strokes and aneurysms. I have been put on 50mg of prednisilone until I see the Dr next Monday. Has anyone else been diagnosed with this on top of everything else and if so have you had it long term and how have gone long term with it?
Hi I was diagnosed Arteritis , about 2/3 years ago.
For me my Amitryptolene 10 mg
, I still get the pains in my temple and head I even get the pains when I am eating, I also have Vascular Dementia, cops, diabetes, fibromyalgia etc etc .
Lol about 5/6 other things to. The main things I try to relax and lessen you stress.
I’ve been getting these pains for about 30 years and I’m still here lol it isn’t easy to be diagnosed with this.
Thanks for that. I can't take amitryptolene as it doesn't agree with me adn I am not supposed to take pred for long term either. I guess I will have an idea of what is have going to happen next week when I see my GP. Did you have issues with your eyes at all? I have already had two strokes so I am slightly concerned that I could have more. I am on blood thinners along with multitude of other drugs for other conditions too. I work full time and can;'t afford to retire so I can't lessen the stress at all. Not sure what the way forward is going to be.
Where are you in the world as in country, I’m in the uk
Australia
Ouch that's painful. Sending love
Thanks Allanah. How are you going? I havevbeen on a bit if a rollercoaster, seeing a private thru my as I had a gutful of registrars in the hospital system after the last stuff up. Back to sero neg RA diagnosis. Been on any adventures?
Been lots better on tcz infusions. Lost 8 stone as well ! Been to cape Verde, Spanish 5 week trip coming up in September. New York early September and Glastonbury, latitude and Leeds festivals planned.
Last few weeks been hard as my mum got suddenly sick and passed away . The funeral was Saturday . It went very well x now sorting out houses and bills x
Oh I am so sorry to hear about your mum. That must have been a shock.
Wow you have lost a huge amount of weight. I was doing ok but now back on high dose steroids and possibly long term, I may just start wearing tents!
Sounds like you have a lot of fun trips planned. I am going on a cruise to New Caledonia for my 60th in August. Didn't wantvto have it stuck in the cold if winter, I wanted sunshine, although it seems I have develooed an allergy to sun hehe. So looking forward to it.
My youngest son moved to London for a few years not long ago, so I will try and save up to come over while he is there.
That would be Great. Yeah I'm 60 in December. So the new York trip is for that x enjoy yours. Sounds amazing x
So does yours. I will hopefully get to NY one day. I also want to go back to Boston, that os one incredibly beautiful city. I just loved wandering around looking at the old buildings.
I have family in Boston. But I think the FULL on time in new York.will be enough this time!
Yeah that was my problem, too much to see. I have a cousin in Boston and I spent about 5 days there before going on to Oregon. It wasn't long enough. Are you going to any special place in NY
Just the tourist trap. But staying in lower middle east i think. The area where talking heads and bowie Were?? You know me and music Lol!
Ohhh that will be so fun to see. My son is in Brixton and I saw part of the Bowie walking tour was right around the corner from him so I sent him the info. He sent me some pics of his adventure. hehehe I am a music nut too I just don;t get to too many concerts these days.
I go with a British charity called Attitude is Everything who help deaf and disabled people get to festivals and live gigs. Could do it without their support.
We don't have anything like that here. I go to concerts but boy I ma shattered afterwards for about a week just with the effort to walk and get up to the nose bleed seats at venues. I have been known to fall asleep for a micro sleep during the performance hahahah
vasculitis.org.uk/about-vas...
Taken from Vasculitis UK website.
Thank you. I have done some reading about it but trying to get real life experiences of how people go with it on a ling term basis. Hoping that there is something other than steroids as I am not supposed to take them at all and now on 50mg a day for a while.
Sadly, most types of Vasculitis need steroids initially, but there are other drugs which can be used too. The link I sent mentions some of them. Have you joined the Vasculitis community on HU? The website has contact details for John and Susan Mills who run the charity. It might be worth giving them a ring.
I can't take mtx or azathioprine either, tried them both when I was first diagnosed years ago and they sent my liver in to a spin, my levels went up to the 900s. I guess they will find something. I am on Brenzys at the moment which is keeping me just under control for the RA and lots of other bits and pieces for all the other issues. I don't live in the UK ,I just wondered if anyone else has experience with it. Just another fun thing to deal with I guess.
Hi, I was misdiagnosed with Temporary Arteritis a few years. I also was put on high dose of steroids which did bring the inflammation down, after I had biopsy done 4 weeks after being on steroids, it came back negative, but seemingly even a neg biopsy they still have to treat it, as it is a very serious condition. I wasn’t happy to be put on steroids but my Rheumy consultant told me it’s a case of go blind or take them. Was on them about a year when they decided I didn’t have TA . I had every symtom of it, my head could even touch the pillow and washing it was very sore. I was not amused to find I had been on steroids all that time for yet another one of my many mystery illnesses. Have you had your biopsy yet? Did it come back positive. Seemingly the only treatment is prednisilone to keep the inflammation down, I was told I would be on it for two years.
Thanks for your story, interesting to know. No biopsy yet as no surgeon will do it in my city so I would have to go 300km to get one done. I am in the first week of steroids and my GP said that the results are often negative anyway. I have already had 2 strokes so not keen to push that one any further. I g uess I have to wait and see. The pressure over my right eye and temple is the worst. I am also not supposed to be on steroids at all if I can avoid them so I guess I will find out on Monday what the next steps will be.
Hi, it’s a tricky illness really. I was told the gold standard of diagnosing is the biopsy but as you said it’s not always accurate, if they don’t take the diseased artery it will come back negative.. I was in for over an hour with the rheumatologist, she was very thorough but wudnt commit to a diagnosis till the biopsy. I was just very annoyed at being on these steroids for that length of time. Good luck with your appointment.
Yeah that is my issue the steroids, I am not supposed to take them, but if that is the treatment then I will do it. I just don't want one single Dr to say to me 'oh you are way too overweight'. Hmmmmmm
I haven't seen my rheumy yet, I have an appointment at the end of June with him.
My sister had this right at the beginning - it was how she was diagnosed. Unfortunately she did lose a little of her sight in one eye, but not enough to cause problems. And she is very well controlled now on a JAK inhibitor.
Thanks for that. I know my right eye is not feeling great, sort of blurry and feels like it is under pressure, so I am glad my gp put me on steroids after two weeks of jaw pain and massive head pain. I will have to see what can be done re treatment going forward. I am not sure what I can take as I am already on Brenzys for the RA.
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