Steroids

[Flosy]

Hi.i am just wondering when you come off steroids,do you still have to see drs at the hospital,because I haven't see one 8 months.i am am doing well.also does G.C.A.COME BACK.

[DorsetLady PMRGCAuk volunteer]

So long as you have no issues when you finish the Pred there is no need for you to still see a specialist. However they do usually refer you back to your GP though .

GCA can return -but that’s relatively unusual.

[Flosy in reply to DorsetLady]

Hi.yes I still under my drs and still have my blood tests every 3 months.ok thank you.

[SheffieldJane in reply to DorsetLady]

Have you ever read anything about LVV/non cranial GCA? The symptoms are not so clearly defined. I am not sure how I would know. Amongst drug side effects and OA.

[DorsetLady PMRGCAuk volunteer in reply to SheffieldJane]

This is a couple of years old -and 3.1 & 2 gives details of symptoms -And statesss that Non Cranial GCA/LVV patients are more likely to relapse than those with Cranial GCA -

intechopen.com/chapters/76667

..and this from Versus Arthritis -

“Large vessel vasculitis (LVV)

The most common blood vessels to be affected by GCA are in the head and neck. However, GCA can sometimes be linked with inflammation of other blood vessels, including the main artery from the heart (aorta) and those supplying the head, neck and arms.

This is called large vessel vasculitis (LVV) and is usually linked with symptoms such as:

weight loss

anaemia – this is when there is a lack of red blood cells in the blood. Red blood cells carry oxygen around the body. Anaemia can cause symptoms such as tiredness, lack of energy and breathlessness

night sweats

arm, leg and spinal pains

continuous inflammation.

It’s not certain how common LVV is, but your doctor may want to do further tests and scans if you’re having frequent flares despite being on steroid treatment.

LVV is usually treated with additional drugs to suppress the immune system, such as methotrexate and leflunomide. Newer biological drugs such as tocilizumab are also being tried.”

[SheffieldJane in reply to DorsetLady]

Good morning DL, many thanks. X

[DorsetLady PMRGCAuk volunteer in reply to SheffieldJane]

🌸

[SheffieldJane in reply to DorsetLady]

🌸

Thank you for such a comprehensive reply and link. It is the best thing I have read that explains LVV and actually how difficult it is to monitor and why. It would be worth having your post in FAQs. It goes undiagnosed so often. If I hadn’t had Dr Mackie I wouldn’t have been diagnosed. I just didn’t feel well and obviously there are consequences to leaving it untreated. Very grateful - cleared my head a bit. I seem to have gone backwards this year and wonder if it is the Covid jabs. I had Covid in September last year as well. Xx

[DorsetLady PMRGCAuk volunteer in reply to SheffieldJane]

Might raise a new post and ask Fran to put in FAQs -leave it with me..

[Flosy in reply to DorsetLady]

OK thank you.

[SheffieldJane in reply to Flosy]

Just another thing to bear in mind Flosy. I hope you are home free.

[SheffieldJane in reply to DorsetLady]

Thank you DL.x