Gca treatment

[Lellylam]

Does anyone have GCA that is not treated with steroids,?

[PMRpro Ambassador]

It would be medical negligence not to treat GCA with steroids as they are the only proven means of reducing the inflammation to protect vision when used in a timely manner. While Actemra is used in GCA very successfully, it doesn't work 100% for all cases and thee have been no clinical trials to identify if it works as quickly as high dose pred. They are always used together, then using the Actemra to reduce the pred dose much faster than usual.

[Lellylam in reply to PMRpro]

I am unable to take steroids as had a huge phycotic incident on a low dose. I have been prescribed Tocilizumab

[PMRpro Ambassador in reply to Lellylam]

That is a different matter - but if a patient already had visual symptoms then there is always a risk the inflammation would not be reduced rapidly enough. Then it becomes a balance of risks.

[Lellylam in reply to PMRpro]

I don’t have any visual problems. I had PMR which was untreated due to my inability to take steroids, but the levels were going down. I had a massive trauma and levels went up again and had slight pain over temple and jaw pain when eating. No headache. Had a biopsy and this is the result. I’m petrified but can’t take steroids as tried to kill myself and was completely phycotic. No issues whatsoever before getting this awful illness

[PMRpro Ambassador in reply to Lellylam]

Was the biopsy positive then?

[Lellylam in reply to PMRpro]

Yes

[SheffieldJane]

I have looked over your past threads and seen the thoughtful things your friends on here have told you. I am also on Tocilizumab injections. I sincerely hope that it controls your disease too. It enabled me to get down fast from GCA doses of Pred. I just wanted to send you love and hugs as you endure this ordeal. ♥️

[Lellylam in reply to SheffieldJane]

Thank you and I’m glad it’s working for you. I’m not on pred and concerned it will be enough on it’s own. Also do you know if GCA ever goes away as PMR can or is it for life? Thank you

[PMRpro Ambassador in reply to Lellylam]

GCA is more likely to go away than "just" PMR. It usually takes patients something between 4 and 5 years to get off pred although some are off in 2 years - using Actemra does speed up going into total remission for about half of patients but it only works on one cause of the inflammation and in some patients there a two other potential causes which are not affected by the Actemra. There it is a case of wait and see,

[Lellylam in reply to PMRpro]

Thanks, you’re certainly very knowledgeable. I guess the odds are stacked against me without steroids. I will have to wait.

[PMRpro Ambassador in reply to Lellylam]

I fear so - but that also applies to someone who has already got visual symptoms and is put on pred. It doesn't reverse damage. DorsetLady on here wasn't diagnosed until she lost the sight in one eye. She was put on high dose pred but had a 2 week wait to see if that was enough.

[DorsetLady PMRGCAuk volunteer in reply to Lellylam]

As mentioned by @PMRpro I was not undiagnosed for 18months, and therefore not treated with any drug.

My GCA was finally diagnosed after I had suffered irretrievable sight loss in one eye…..I had no sight issues all the way through that 18months until the final few days….but obviously the underlying damage to my arteries within the head (not superficial temporal artery) was occurring, so just be aware.

Any irregularities within your head, jaw, neck area must be viewed with the utmost urgency….and in that case you may need to consider a very high dose of steroids (whatever your side effects).

For your info, my GCA (both untreated and treated) lasted about 5 & half years…..it may well have been quicker had I been diagnosed earlier…I don’t know.

I have been in remission now since 2016…living a good life, albeit slightly impaired.

[Lellylam in reply to DorsetLady]

My anxiety and depression unbearable despite help of medics

[DorsetLady PMRGCAuk volunteer in reply to Lellylam]

I'm very sorry to hear that...and I'm not questioning your anxiety in any way, but you certainly don't want sight loss, or the possibility thrown into the mix.

Have you been recommended , or considered CBT (cognitive behavioural therapy) -

mind.org.uk/information-sup...

[Lellylam in reply to DorsetLady]

Yes I’ve tried everything. To add to my problems when doing my biopsy I have nerve damage and now gave wonky brows. Just over a year ago was perfectly fit and happy no previous mental health issues. Now can barely leave the house

[DorsetLady PMRGCAuk volunteer in reply to Lellylam]

🌸

[Lellylam in reply to DorsetLady]

Thanks for your suggestions. I’m in awe at how you’ve dealt with it.

[DorsetLady PMRGCAuk volunteer in reply to Lellylam]

It wasn't easy, but obviously easier than you are, and I am sorry for that (my niece has had depression for 30 years so I do know (from the outside) how debilitating that can be) .... and I wish you well.

[SheffieldJane in reply to Lellylam]

My Rheumatologist tried to reassure me that my eyesight would not be at risk on Tocilizumab . Being in a younger age group (like you) and my Large Vessel Vasculitis being in my peripheral arteries were factors. I am always alert for eye and head symptoms though. I have hopes that this disease will go into remission but have no idea when.

[Lellylam in reply to SheffieldJane]

Thanks, does it make you feel dizzy?

[SheffieldJane in reply to Lellylam]

Yes sometimes. I am very aware that I am on a drug. However, I maybe experienced more side effects with Pred - especially latterly but the benefits were clearer. With Tocilizumab it is kind of an act of faith because I am in very little pain but I feel a bit seedy and very, very tired, which could be a combination of factors. May all this pass quickly for us both. Xx