Battling GCA

[LRevell]

I’m on Actemra weekly injection at this point. Im in remission at this time but feel aweful. Dizzy, woozy, no energy,. The only time I feel good is when I’m laying down. My blood tests are normal for GCA and had a MRI of my brain and neck look good other than a ischemic stoke that occurred at sometime and Dr said it happens sometimes and can only see it on the test. Maybe I should see a thyroid dr next.

[PMRpro Ambassador]

When you say you are in remission - what do you mean and on what are you basing that statement?

If it is on the blood markers, they are meaningless when you are on Actemra, the way it works means the markers fall to zero. There is no inflammation being created, but that doesn't mean that the disease is inactive. It is still chugging away in the background and attacking the body tissues and causing the flu-feeling.

And it doesn't work for all the possible GCA inflammation. There are at least 3 potential mechanisms which create inflammation in GCA and Actemra only works for one of them.If YOUR GCA involves the other causes, you continue to require pred to manage that.

Were you on pred previously? Have you tapered off that since being on Actemra?

[LRevell in reply to PMRpro]

Thank you for you reply. I was on Prednisone for a year with a slow taper then Actemra. Yes it was blood tests my Dr was saying I’m in remission I believe because of my inflammatory markers. You seem to know a great deal about GCA and so happy to hear from you. I’ve had it 2 years now and started with partial vision loss in my left eye. What in your opinion is the cause of scalp tenderness?

Laura

[DorsetLady PMRGCAuk volunteer in reply to LRevell]

What in your opinion is the cause of scalp tenderness?

Well the obvious answer would be- GCA … and not sure anyone can say you are in remission when you are still on medication. The only way to know to definitely know that is to off all medication for a few months with no symptoms.

PMRpro has explained about blood tests and Actemra -which unfortunately many doctors seem to be unaware of - no excuse really as it is the information on the drug.

In a previous post a couple of months ago you said you had a return of scalp pain and were put on 50mg Pred and it went., that would indicate your GCA was still active at that time [and no surprise at less than 2 years in] but as you only said it had help and had an appointment with Rheumy it really doesn’t give us much to go on.

But as an ex GCA patient, I’d want a better response from Rheumy.

[PMRpro Ambassador in reply to LRevell]

It is usually because of inflamed arteries being unable to supply enough blood to the scalp. Are you still experiencing that?

I really do feel that any doctor who wants to use Actemra for a patient should have to pass a course on using it because some of them really do not know much about it! The documentation tells them that the usual blood markers are unreliable and the fact they are normal range does NOT mean the disease is gone. Actemra is a very expensive, albeit quite effective, steroid sparer. No more than that.

What concerns me is whether your adrenal function has recovered - it can take quite a long time after being on a high dose of pred for GCA. Your symptoms could indicate it hasn't.

[LRevell in reply to PMRpro]

Yes, my head is tender now for three days!

[PMRpro Ambassador in reply to LRevell]

Actemra is not a 100% protection against GCA - half of patients have inflammation due to other mechanisms besides IL-6 which is what Actemra works against. If you get any other symptoms of GCA please make sure you see a doctor and also make sure they are aware of the limitations of Actemra. It is absolutely clear from all the documentation - which all too often some doctors seem not to have studied.

[Angelsmummy]

So sorry you are feeling awful L,sometimes seems relentless doesn’t it?Probably no consolation to you but this 3 rd flare I had was DEFINATELY the worse.Am on 13 mg slow taper at present but boy oh boy,does not take much to make me feel like going to bed and hibernating.Like you,dizzy,woozy and feel as if I am at deaths door!My heart goes out to you and hope you start improving soon,sending a hug, from H.xx💐💐😜

[LRevell in reply to Angelsmummy]

Thank you for reaching out! It helps me so much to hear of what’s happening to other people with this disease. It feels like a trap sometimes and I just want to feel better and live my life. I was invited to go to Hawaii and I’m scared to go because I don’t want to get there and not feel well.

[Angelsmummy in reply to LRevell]

Hi L.Are you still on Pred?What is stopping you from going to Hawaii,is it just the fear of being ill whilst there?If you are well enough to go and you are with friends,would they not understand that if you DID go,that you would have to take it easy and have “ downtime” when you needed it?Maybe the change of scenery would do you good,but only you could decide if you are up to it.Maybe have a think,weigh up the pros and cons.Trouble is with this bl@@@@ illness,I think getting into the right mindset often helps.Really hope you can make the decision that is right for you.?Thinking of you.xxH.💐💐😜

[LRevell in reply to Angelsmummy]

You’re very sweet! My friend knows of my situation and thinks it’s just what I need and we won’t push it. She said we will do a lot of relaxing. It’s just the travel I guess getting there! 🤷🏼‍♀️

[Angelsmummy in reply to LRevell]

Well that sounds promising,go for it girl.If you ARE on Pred,do as DL says,go up a bit for the stress of travelling.Just think of those enticing beaches,wonderful !Hope to hear some positive news from you regarding your decision!Xxx💐😜👙🩴👒🌴🌊

[Viveka]

Sorry to hear this, hope it settles soon. Could I ask you, how has going on Actemra affected how you feel in terms of dizzy/woozy/unwell?

[LRevell in reply to Viveka]

Hi Viveka! I’ve been doing great on it for a long time with no issues. Now for some reason feeling dizzy, woozy and very tired. I just don’t feel well at all now. It could be my thyroid or heart for all I know. I’m just going to keep going till I figure it out. 🙁

[Viveka]

Thanks for letting me know. I'm on pred for GCA but due to flares am looking at actemra.

Sore scalp sounds suspiciously like GCA breaking through a bit, and there is always potentially the adrenal issue causing wobblies as Pro says. The fluey feeling is horrible.

Love and good wishes to you.

[LRevell in reply to Viveka]

Yes I was on high doses of prednisone then Actemra. Oh well GCA isnt for the weak of heart. I am also wobbly. 😩