gca gone I hope!!!

[Howard523]

Well the visit to the rheumy yesterday went well, after nearly three years on steroids I had a ultra sound and they found no trace of inflammation. Right from the start I went on the dsns method and it seems to have worked for me. I just want to thank the people on here for all the information and advice it was a great help to me to read the posts from people in the same boat and good luck to all of you.

[Celtic PMRGCAuk volunteer]

Oh, congratulations, Howard - always great to hear such a good news story from someone who has been there and come out the other end! Revel in your good news, stay well and enjoy every minute of every day sans GCA and Pred!

[Howard523 in reply to Celtic]

Thank you

[lesley2015]

Great news - enjoy every moment of feeling well and being yourself again!

[DorsetLady PMRGCAuk volunteer]

Well done!

Please keep in touch, you have much to contribute to others who are still going through GCA.

I think some, when their GCA or PMR has gone, no longer have interest in this forum, and that's a shame - we "zero clubbers" need to give encouragement to those still to come.

Keep well.

[Howard523 in reply to DorsetLady]

Thank you and will keep in touch.

[christine2715 in reply to DorsetLady]

I certainly take you as an inspiration DorsetLady

[DorsetLady PMRGCAuk volunteer in reply to christine2715]

Thank you. As I said earlier in year - if I can do it, so can you.

Some days, when things are bad, you don't think that, but you will. And even if you have to remain on a small dose of Pred so what, as I've also said many of us are on some medication for life. Unfortunately that's what life brings, whether we like it or not! Better that than not being here at all.

[PMRpro Ambassador]

So pleased to hear that!!!!

[Howard523 in reply to PMRpro]

Thank you

[Tonylynn in reply to PMRpro]

i am relatively new to this forum but have quickly become aware that your "pro" is well deserved and you have researched both PMR and GCA extensively. Perhaps you can help with this ...

It seems fairly certain that there is a link between PMR and GCA, an arteritis. People with PMR have a risk (around 20%) of going on the have GCA even when taking steroids. Prednisalone at around 20mg / day seems to be sufficient in many cases to "treat" PMR and then it is tailed at various rates, but in all too many cases there are "flares" and the disease process takes a very long time, sometimes never, to "burn out". On the other hand the literature relating to GCA more commonly makes reference to the condition going into complete remission. Reading the literature and the posts on this site I can not help wondering if the dosage regime for GCA is more successful in putting the disease process into remission than the PRM regime which may well allow the process to remain "low level active" (especially as PMR cases can go on to have GCA). Do those patients who have GCA and PMR experience the same level of "flares" as those with PMR alone? Put another way, if PMR patients were to be given similar dosage of steroids to those with GCA (not less than 0.75mg per kg) and slowly tailed, would they experience the same level of "flares" and would the disease process "burn out" earlier?

You have clearly monitored this site for some time and have acquired a great deal of knowledge in the process. Do you know of any publications that have statistically analysed this matter? Do you have a subjective view?

[PMRpro Ambassador in reply to Tonylynn]

I will have to look to see if there are any studies easily available - but I suspect from discussion with rheumatologists and my own reading that there have been no studies done of comparative dosing and results. Not least I imagine because studies are fairly expensive to carry out and finding funding would probably be difficult. Pred is available as cheap generics and no company is going to make a killing out of such a study.

Personally I don't think PMR and GCA are merely "related". I think they are the same disease but possibly different expressions - different positions on a wide spectrum. There are experts who are thinking along the same lines and it is mentioned in this paper:

hindawi.com/journals/bmri/2...

It certainly seems fairly clear that there are at least 3 different manifestations of PMR itself - which could be classified as short term, under 2 years, medium term up to 4 to 6 years and long term. And GCA could represent yet other versions.

Part of the problem though is probably a preoccupation on the part of some doctors with "temporal arteritis" - GCA does not only affect cranial arteries but there are a lot of doctors who seem unaware of that. Those of us who have non-cranial symptoms are simply chucked on the PMR pile without any imaging being carried out.

I really don't know whether there is justification for using the same sort of high dose approach for PMR as for GCA - some people get over it in a couple of years with low doses, others struggle despite high doses. High doses are associated with considerable morbidity which is why they try to avoid using them unless patients are at risk of visual loss.

IT is a very difficult conundrum.

[SnazzyD]

Great news! I'm only five weeks in with GCA, so stories like yours are great to hear. Your advice from the trail would continue to help though if you decide to keep contributing. However, I can completely understand why you would want to join another club 😀

[SheffieldJane]

Really, really happy for you Howard!! 🍀

[Howard523 in reply to SheffieldJane]

Thank you

[Patience47]

Great news. So very happy for you.

[karools16]

Count your blessings,Howard523. You had 3 years of GCA. I still have it after 12, tapering from 3 to 2 mg. I wish I had known about this forum, and the DSNS method then. Celebrate your new 'freedom'.

[christine2715]

Well done! I wondered if you managed to get back to how you were pre the GCA.

[Howard523 in reply to christine2715]

Hello, as far as how I feel now compared to how I felt before the onset of GCA, I don't feel 100 % but I certainly feel a lot better now I am off the steroids and other drugs, but there is always the chance it could come back fingers crossed it doesn't.

[ipsydipsy]

So, So, pleased for you Howard. I have a question, how did you manage to get the ultra sound? I am in a similar position to you, had GCA for 3 1/2 years and as I do not have any symptoms would like to know if it has gone into remission.

[Howard523 in reply to ipsydipsy]

Hello, as far as the ultra sound goes, I live in Oxfordshire and our local hospital is the John Radcliffe, they just sent me an appointment for it. Perhaps you should ask your Gp to refer you.

[ipsydipsy in reply to Howard523]

Thanks for the reply. Something I forgot to ask, were you still taking prednisolone when you had your ultra sound?

[Howard523 in reply to ipsydipsy]

Yes but only 1mg daily.

[Jackoh]

So pleased for you Howard. So encouraging.

[Howard523]

When I say I was not 100% I mean I still feel a bit fatigued and do get the occasional headache but not in the same area as before, also had a steroid induced cataract op, I think I may feel like this because my adrenals are not working properly yet also I am 72 and put a lot down to getting old. keeping fingers crossed it has gone for good 🌝