Re tapering.

[Shanghi]

I started with 60 mg predictions in April for GCA & now am down to 10mg. How long can one stay on 10 mg? & not risk more long term side effects from prednisone.

Can one continue to taper without doctor supervision etc? And also when do the adrenals start kicking in & does that have to be monitored? and how @ what does all that involve?

I am here on Spain & have no wish to go back to Canadian winter & am wondering if it is safe to stay s few months longer, either continuing on 10 mg or continuing to taper.

I thought I would ask here to check re your experience before càling my rheumy in Canada.

[SheffieldJane]

I imagine PMRPro might be along to tell of a respected Rheumatologist who keeps her patients on 10 mgs for a year as a matter of policy. I am sure that being in the mild climes of Spain will do you more good than a harsh Canadian winter. Can you register temporarily with a doctor in Spain? Just so that you have back up. I am assuming that your diagnosis is GCA because of your 60 mgs initial dose of Prednisalone. Many of us taper without supervision but it is sensible to have a contingency plan, in case of a return of symptoms or problems with your Adrenals after 7 mgs. Have a look at the FAQs on here. There is information about tapering plans and the Adrenal function. Perhaps if you check in with your Rheumatologist on a regular basis as well, you will probably be getting as much support as many of us in these challenging times. We are always here to answer your questions to the best of our ability. Meanwhile I am consumed with envy about your Spanish experience. Good luck!

[Shanghi in reply to SheffieldJane]

Thx so much for your reply & advice. Really appreciate it & sending you sunny hugs from Spsin. I have my 4 grandkids here & just had to come & see them after 2 yr covid restrictions, nowI don’t want to leave.

[SheffieldJane in reply to Shanghi]

Having not seen my 4 grandchildren in Australia for almost 2 years I can empathise completely.

[PMRpro Ambassador]

If you are not having any return of GCA symptoms it is probably OK. You have reduced VERY quickly from 60 to 10mg though - loads of people would still be at about 20mg after 6 months.

This is the paper about a tapering regime the SJ mentions:

rcpe.ac.uk/journal/issue/jo...

and the author still uses it in her hospital close to London UK where she is a consultant rheumatologist.

I have been on more than 10mg for the last 2 years - I have PMR and it has been flaring merrily for various reasons. I have been on pred at these sort of levels for much of the last 12 years, I have been lower but only for about a year, and I have no long term pred effects - no diabetes, my cholesterol isn't much higher than it was before but I do have a high HDL which f course adds to the total level, no loss of bone density and no other identifiable problems.

[Shanghi in reply to PMRpro]

Thank you for the information, really appreciate it. I got the GCA in Apr & still convinced that it was brought on by the Astra Zenica vax. I have not had any flares or symptoms since starting prednisone. I did switch to a total anti-inflammatory diet with lots of vitamins. At first my rheumy didn’t believe that the vax had anything to do with it, but a couple of mos. later he said, if it is the vax, I could be lucky that the GCA will subside as soon as the vax is out of my system.

Don’t know anout that, but when I had my CRP result in August, it was -4.

[DorsetLady PMRGCAuk volunteer in reply to Shanghi]

“..if it is the vax, I could be lucky that the GCA will subside as soon as the vax is out of my system.”

Not sure about that either!🤨… buena suerte 🌸

[Shanghi in reply to DorsetLady]

Thank you, we all need Lady Luck on our side. Of course not sure either if this GCA will miraculously disappear.

[PMRpro Ambassador in reply to Shanghi]

It will certainly be interesting to see if these cases ARE short-lived and I hope they are - but cases of PMR/GCA finally triggered by flu or shingles vaccines don't generally disappear after a few months. Once autoimmune disorders get going, they tend the keep going. The jury remains out - Not proven is still a verdict in Scotland ...

[Viveka in reply to Shanghi]

Hi Shanghi

I was diagnosed GCA 5 days after Astra Zeneca in March. Started on 40mg now on 8mg. Tapering 1mg every 3-4 weeks. Have had regular head throbs, stabs and tingles throughout (previously had regular migraines). Advised by consultant Proff Rod Hughes to ignore these unless, of course, they got changed or got worse. Also have monthly ESR and CRP tests which have been normal. (Elevated on diagnosis). Perhaps the bloods are the thing you are missing in your support pack? Though if you are not getting symptoms, it sounds like you would not need them regularly.

I don't know about the GCA subsiding when the vax goes (sounds fishy to me) but Dr Rod was reasonably hopeful that conditions that come on quickly like this, if they are mild, may be shorter-lived. As PMRPro says, it will be interesting to see any trends.

Big dilemma now is the third primary or booster dose ... I think I'll have to go for it because of rising covid levels, but with extreme reluctance.

Enjoy your extended break in the sun!

[Shanghi in reply to Viveka]

Hi, I didn’t take the 2nd dose of Astra Zeneca, in fact in Canada they discontinued using AZ & recommended either Pfizer or Moderna, even my rheumy advised me in June to get it, I was still on 30mg pred , I was not interested to risk getting flares & when I saw him for my 2nd follow/up visit, (after more data was released on side effects of vax & people on prednisone, & the data showed not advisable for people on 20 mg or more on pred, he said I should consider taking the vax when I ´m at 10mg.I rather keep socially distant & take precautions then risk a flare. Also I have gotten the Taffix nasal spray online, which supposedly blocks viruses.

[DorsetLady PMRGCAuk volunteer in reply to Shanghi]

Just be aware that one dose gives limited protection compared to 2 doses…and if Canada is like most countries you will probably need both before you’re allowed to travel back home.

[Viveka in reply to Shanghi]

On my second vaccine I developed aches in PMR areas, but only for around 24 hours. After that I was ok, so perhaps it was just post vaccine aches nothing worse. I have been ok since and it didn't cause a GCA flare. I think I will post something to see what other people's experiences are. Will look into the nasal spray. The rates where I live in Somerset (rural area) are getting quite bad because of secondary school transmission, though hospitalisation and deaths still much less than pre-vaccine.

[HeronNS]

Adrenal function does not really start up again until you get to about 7 or 8 mg pred. Effects of that can vary from person to person. I think I was pretty typical at that stage, at 7 mg from a start of 15 (PMR only) in about six or seven months, and to 3 mg by the end of the first year. I had some odd feelings at about 7 mg, but it wasn't until I was at 4 mg that I was struck with a stage of what we not so fondly call "deathly fatigue". I do not remember when I got over that but I continued to taper and do not think I have any long term adrenal issues, although I have to confess that I've now been on pred for several more years, mostly at 2 mg. It seems that people with GCA who do not develop PMR as well may recover a little faster than a PMR patient, but is is for nearly everyone a journey of at least two and often more years.

Where in Spain are you? I've visited a couple of times and love it, but have only seen the tourist highlights.

[Shanghi in reply to HeronNS]

Thank you for the info, really appreciate it. Î’m in Nerja, east of Malaga. My daughter & my 4 grandkids live in the Alpujarras, near Granada. The weather is wonderful & most of all, life here seems normal not like back in Canada where we live in daily Covid fear.

[HeronNS in reply to Shanghi]

Have been to Granada twice, in 1973 and 1999. The difference in the Alhambra, in terms of restoration, was incredible, but in 1973 we virtually had the place to ourselves and approached by walking up the hill which in itself was a good experience. In 1999 we were delivered by bus, and so much was roped off to protect the place from the crowds of tourists. I also loved Cordoba, the great mosque and the Jewish quarter.

I agree, a most salubrious climate! It may well help your recovery.

I live in Nova Scotia and we are mostly not living in fear, but do continue to mask in indoor public places because of the delta outbreak across the country. Autumn now, the best time of year here.

[jinasc]

Spain has a good handle on both PMR & GCA.

[Shanghi in reply to jinasc]

Thank you, I will probably consult a doc here for backup.

[PMRpro Ambassador in reply to jinasc]

At the top end - they do lots of research. But at punter level it doesn't seem quite as good.

[sequeluk]

Sounds like I am on a similar taper to you as was diagnosed in early July 2021 and expect to be down to 10mg in early January 2022 so I will be very interested to hear of your experience from this point on. Also interested to read your comments on the AZ vaccination as it does make me wonder if that triggered my GCA . Although I did have aching neck and shoulders well before the vaccinations the headaches that eventually made me do something about it didn't start until after the second vaccination. Best of luck with your continuing tapering and hope you can continue to enjoy seeing the grandchildren in Spain.

[Shanghi in reply to sequeluk]

Thx, and I will try to keep you posted on how it’s going with the tapering.

[sequeluk in reply to Shanghi]

Thanks and best wishes.