GCA flare? My scalp is sensitive, and you can feel heat from the inflamed areas with hair loss

[Dahliapower]

I went transitional blind in 4/24. I was put on dexamethasone and had a temporal artery biopsy which was negative. I also had many immunity tests done. I also had irisitis with eye drops given in 2/24. I saw a rheumatologist in 5/24. I was diagnosed with GCA with a PMR overlap. I was started on Actemra infusions with high BP, headache, severe rash that lasted for weeks. I quit the infusions because of the reactions after I was sent to a dermatologist. When on steroids I have to take drugs to lower blood sugar, beta blockers because of tachycardia, blood pressure pills and other pills to offset the drug induced symptoms.

I made the decision to discontinue all treatment against medical advice. I didn’t taper the dexamethasone. When I quit I was taking 6 mg. Has anyone else had the inflamed scalp areas with massive hair loss? Is this GCA or side effects of the Actemra and steroids? I’ve had headaches and inflammation in both knees and hands with neck and shoulder pain.

[PMRpro Ambassador]

I'm sorry, I'm a bit confused: do I understand you have been on above 6mg dexamethasone since last May 2024? And have decided recently to just stop it cold turkey at 6mg dexamethasone?

When was that? You do realise that you are risking an adrenal crisis by stopping corticosteroids suddenly after several months at a high dose don't you? And that an adrenal crisis is life-threatening?

That can cause hair loss. It is also likely to allow the GCA to flare up again - that could cause the scalp symptoms and also contribute to haor loss.

You need to see your doctors as an emergency.

[Dahliapower in reply to PMRpro]

The damage is done. I stopped 2 months ago. I went to fill my steroids and there were no refills. I was at the eye doctor and he and the rheumatologist had a conference call this was Thursday. By Monday when they opened again I already had been off them 3 days. I quit everything and am just now starting to feel better. I will never stop steroids cold turkey again. I suspect the low energy and severe muscle pain was caused from this. I made it through it and am not wanting to take any drugs, just vitamins.

[Angelsmummy in reply to Dahliapower]

You were VERY very lucky!x😱😜

[Nextoneplease in reply to Angelsmummy]

Agreed! 🤔

[Angelsmummy]

perhaps I really should not post this but a certain well loved lady on this forum,had GCA with sight loss and for a very long time,years in fact ,tapered as per the regime and very slowly.She got to 1/2 mg and after a spell on that,she stopped it.Then BAM,the GCA was back,minor damage to her remaining eye,so put right back top wack, on steroids.Now having to start the long journey again.Please don’t think you are out of the woods yet,but oh how I hope for your sake you are.It may come back to bite you on the proverbial.Take it from me and DL and others who have lost sight with GCA,it ain’t to be messed with!Please keep alert won’t you,from somebody who cares !xx💐💐😜

[Dahliapower in reply to Angelsmummy]

I didn’t know about tapering and the dangers involved with these drugs. I’ve learned a lot from this group. I also read the recommended book from Amazon. In the states I don’t think GCA is seen that often. Thank you for caring. I am trying to be vigilant and am seeing the eye specialist every two months. I also have low pressure glaucoma and am taking several eye drops to keep my pressure down.

[Angelsmummy in reply to Dahliapower]

Have to say D that the lady I was talking about is the the USA!I see that you are worried about the “ dangers of these drugs” but in my view ,the danger of GCA and sight loss/ stroke is more of a worry to me.I woke one morning with a pretty pattern in my eye.Went straight to opticians ,said all the tests scans etc were good.2 days later I had irreversible sight loss in left eye.,admitted to hospital for intravenous drugs etc and kept in for 3 days whilst they made sure that I was not going to lose other eye.I HATE DRUGS,but do you know what D,I would stay on Pred for ever if I can keep healthy,and believe me,I do NOT get many side effects from Pred,and apart from having flares now and again my bloods are good regarding liver,kidney etc. I really wish you well,but please remember,it is not just looking after your eyes with regular tests,there are other symptoms as well you know.The eye symptoms might be the last you would notice.Kind thoughts to you,xxx💐💐😜