GCA Starting Dose?

[Donna5658]

My doctor wants me to be prepared in case I develop GCA along with PMR. I think she usually starts people at 60mg for GCA. Does this sound similar to normal starting doses for community members with GCA? Thanks!

[piglette]

60mg would be a normal starting dose for GCA while around 15mg - 20mg is more normal for PMR. Starting at 60mg if your doctor does not think you have GCA, but just PMR at the moment seems like overkill to me.

[Donna5658 in reply to piglette]

Thanks for your reply. She has me on 15 for the PMR. Because GCA sounds like it requires an immediate and urgent response, I was just trying to get a sense of the dose range in case I develop it.

[piglette in reply to Donna5658]

Have you been given vitamin D with calcium and also been offered a Dexascan? You should be.

[Donna5658 in reply to piglette]

I have thanks!

[piglette in reply to Donna5658]

A good doctor!

[SheffieldJane]

Yes it does but only after diagnosis of GCA by arteriel biopsy or ultrasound scan. Not as a just in case measure. A PMR start dose ranges from 15 mgs to 30 mgs.

[Donna5658 in reply to SheffieldJane]

Thanks! I’m on 15 now. No GCA so far, but sounds like it can develop at any point.

[123-go in reply to Donna5658]

Hi, Donna. If there is any suspicion of the disease blood tests will be carried out, preferably on the same day the symptoms appear and as a precaution 60mg Pred given. Other tests are carried out as soon as possible for confirmation and if no GCA the patient can return to previous/ lower dose. This is based on my own experience. I can't find any article at the moment to support this but will keep looking. Now that your doctor has talked with you about GCA you will, of course, have it on your mind and although you should be aware of symptoms you should know that the percentage of people with PMR who go on to have GCA is relatively low so don't be too concerned.

The following link explains but please don't dwell on the possibility of developing GCA. The percentage of people with PMR who go on to develop GCA is low-10%. The most important thing is to be aware of symptoms and report them immediately either to your doctor/rheumatology clinic/or by dialling 111 if out of hour so that you can be treated asap.

nhs.uk/conditions/temporal-...

[Donna5658 in reply to 123-go]

Thank you so much for your thoughtful reply! It is extremely helpful and reassuring. Thanks for taking the time to tell me about a bit about your experience.

[Hidden in reply to Donna5658]

I developed GCA 3 months after diagnosis for PMR. 15mg for PMR then 40mg for GCA. Diagnosis Dec 2019 and been slowly tapering ever since. Seeing Rheumy 15 Sept. Really hope you don't go on to gt it, just watch for the signs. Headaches, Jaw pain, Tender head....those were mine.

Anne

[Donna5658 in reply to Hidden]

Thank you so much. This is very helpful!

[PMRpro Ambassador in reply to Donna5658]

It can - but it doesn't develop for anything like everyone. You just need to be aware of the signs that it isn't "just PMR" and not be in denial but speak to the doctor immediately - that means the ED of it is the weekend or you can't see your GP the same day. You also really start of 40mg unless you have visual symptoms or jaw pain when eating, called claudication. If you have either of those symptoms it becomes a medical emergency and you need high dose pred quickly - and immediate medical advice because it is the same as a stroke if it is bad enough, the visual loss is just a very specific stroke.

[Donna5658 in reply to PMRpro]

Thanks for the very helpful and comprehensive reply. I continue to be incredibly grateful for the wealth of information coming from the members of this community. It is an incredible resource and I thank everyone who has taken the time to respond.

My vision continues to be blurry, but the ophthalmologist didn’t seem overly concerned about it. He thought it was the prednisone.

[DorsetLady PMRGCAuk volunteer in reply to Donna5658]

Did he suggest you use eye drops or do anything to help -if it is the Pred it usually improves as you lower the dose…

[Donna5658 in reply to SheffieldJane]

Thanks! I wasn’t planning on doing anything without my doctor and ophthalmologist’s approval. Just makes me feel a little more in control to have as much information as I can about both conditions.

[123-go in reply to Donna5658]

Yes, to be well-informed is empowering 🙂.

[Hidden in reply to Donna5658]

Believe me some of the ladies on this forum give better advice and know so much about both PMR/GCA. Doesn't mean you will go on to get it and hopefully you won't....many don't.

[KASHMIRI1]

Good morning l have had GCA for over 2 years and was started on 60 mg of pred. by my GP. The rheumatologist comment when l first saw him was that he would have started me at a lower dose. I think however the 60mg seems common as a starting dose to avoid vision lose.

[Donna5658 in reply to KASHMIRI1]

Thank you for your input!

[Carriemetz]

Yes, the GP started me on 60 and I had all the tests in the next three days inc snipping a bit of artery to check for giant cells. The rheumatologist dropped me at once to 40 and then it was a slow decrease over the next 3 years from there with a couple of ups and downs. But I had clear GCA symptoms at the start not PMR. I think as the mantra says, we’re all different! It’s certainly not at all inevitable that you will develop GCA. Don’t trouble trouble till trouble troubles you! Lots of luck, Carrie

[Donna5658 in reply to Carriemetz]

I agree and thanks! I think the prednisone in combination with my ms and hyperthyroidism is causing me to be more concerned than usual. I have been distracting myself with wonderful audio books of Dicken’s novels. Hours and hours of pure bliss, plus better for my blurry vision (from the prednisone).

[DorsetLady PMRGCAuk volunteer]

With no visual disturbances 40mg is usual starting dose for GCA, when vision loss is a factor then 60mg -or higher… Me -already lost sight in one eye -80mg for 2 weeks then 60mg for another 8 weeks.

But a “just in case” with no GCA symptoms is premature, although you do need to be aware it’s a possibility.

[Donna5658 in reply to DorsetLady]

Thanks so much. I wasn’t planning on doing anything, just trying to be aware and prepared.

[DorsetLady PMRGCAuk volunteer in reply to Donna5658]

Yes, good to be aware….fingers crossed it never happens…

[Broseley]

I was given 40mg due to no vision problems. This was a week before my biopsy, which was negative (but never conclusive) so the treatment continued.

[BettyE]

No personal experience but a friend who had GCA but not PMR was started on 60. This was more than twenty years ago. His bone protection was given by injection, I remember. His wife says she thinks it was alendronic acid but not sure. At that time I, with "just" PMR, was given calceos for my bones.

[PMRpro Ambassador in reply to BettyE]

Can't have been AA, it doesn't come as an injection. Prolia didn't exist!!! Wonder what it was ...

[BettyE in reply to PMRpro]

Whatever it was it worked. He went back to his work as an electrician and lived several good years after a multiple heart by-pass.

Calceos looked after my bones through eight years of Pred. Have reported elsewhere that I was told by hip replacement surgeon that I had "amazing " bone density for my age.

[montebello]

I was diagnosed with GCA 2 weeks ago after a biopsy confirmed it. I was put on 60 mg predisone per day. Today ill go on 50 mg for 2 weeks, then 40, then 30. Best wishes to you

[ubaoz]

From my experience of having PMR and then developing GCA, it's a good idea to be as well informed as you can about the possibility of GCA so you then know what to do should the situation arise. Which is mostly just getting on with learning and managing PMR as it's in no way a given that anyone will develop GCA despite the increased risk. But it's good your doctor has flagged it so you can be vigilant.

In my case there wasn't a particularly slow onset to GCA; I developed symptoms quite quickly over about a week and definitely knew something wasn't right. In which case it was straight off to the GP, blood tests for inflammatory markers (very high), so immediately off to ED as I also had some eye and other fairly typical symptoms by that stage, as well as the headache from hell. By that stage it was the risk of blindness, stroke etc that were of primary concern to me and the medicos. And stopping my head from exploding!

I was started on 3 days of IV methylpred (1gm each day), then 50mg oral pred.

While the chances of GCA arriving on top of PMR do definitely exist, most people don't go on to develop it. I was just one of the unlucky ones. And once you have the necessary information (including the excellent advice from this forum), it's usually pretty obvious when something's wrong / has changed – in which case, get yourself straight off for medical assistance.

I hope you won't develop GCA, but with useful knowledge, either way you'll have it covered!

[Donna5658 in reply to ubaoz]

This is such a great answer! Thank you. Sorry you have had to contend with GCA. Of my now three autoimmune diseases, PMR is definitely among the most challenging. However, the support from community members on this forum is amazing!

[DorsetLady PMRGCAuk volunteer in reply to ubaoz]

Donna5658

Whilst it’s true the majority of patients being treated for PMR don’t go on the develop GCA, but it can still be quite a significant number -see this -

GCA and PMR commonly overlap. PMR is observed in 40–60% of patients with GCA at diagnosis, and 16–21% of patients with PMR may develop GCA.

[ubaoz in reply to DorsetLady]

Thanks very much for adding the correct figures. I wasn't sure of them, so am very grateful to know you're there with the right ones!

I agree the odds of developing both conditions aren't so good, but I didn't want to alarm people unnecessarily by being inaccurate. Being vigilant, with the right information to hand and then just getting on with things is hopefully the best approach.

[DorsetLady PMRGCAuk volunteer in reply to ubaoz]

I’ve only taken them from studies seen online, but hopefully they are reasonably accurate (and wasn’t implying you were wrong in any way). Not sure anyone can give exact figures -but as GCA is what most people with PMR seem to fear, as you say all people can do is be vigilant.

[ubaoz in reply to DorsetLady]

I certainly didn't take it as you implying I was wrong. 😀 I'm just grateful you have the figures to hand and that people have the best possible info!

And you're right, I think many people with PMR fear GCA. I know I did. And then it happened. Not pleasant or desirable, but not the end of the world either, especially as I was reasonably well informed thanks to this forum. You have no idea how grateful I am for what I learned here and so as a result didn't panic or fall apart when the GCA arrived!

[DorsetLady PMRGCAuk volunteer in reply to ubaoz]

Yes I certainly wish I known about before it happened to me -but I didn’t have the fear beforehand which it what most seem to suffer with. Not saying coping with it was easy (as you know if you know my story) but even if the worst (well not quite the worst) happens you still get through…and come out the other end.

If you don’t know (ignore if you do!) -

healthunlocked.com/pmrgcauk...

[ubaoz in reply to DorsetLady]

Yes, I have read your story (but thanks for the link!) and have been in part appalled at the way things weren't picked up or well treated for you and in part full of admiration for how well you coped with it all despite that. And then have so generously shared your experiences so others can be better informed. I'm sure your experience of GCA was FAR from easy but you're a fantastic role model, and certainly for me, gives much hope that the light at the end of the tunnel isn't the proverbial express train rapidly approaching… Thank you again for all you do!

[DorsetLady PMRGCAuk volunteer in reply to ubaoz]

🌸

[GML19]

I have had GCA for approximately 18 months. I had all the classical signs: night sweats, weight loss, jaw claudication and enlarged temporal artery but with relatively low inflammatory markers: CPR 38. Unfortunately I have had several eye problems with a continuing return to high doses of steroids. Initially. I was put on 40mg Prednisolone and my symptoms vanished like magic, later changed to 60mg plus infusions when I developed eye problems. I knew nothing about either PMR or GCA except that they existed. Fortunately, a relative of a friend sent me details of this excellent forum.

It is good to have knowledge of the possibility of GCA and I sincerely hope you will never develop it; however, currently for the first time I have tapered down to 2mg prednisolone and hopefully will be off it by Christmas. Fortunately for me I have not suffered the pain of PMR.

Good luck.