Mistake

I've altered the mistake I made on my post about tapering. I said that he'd told me to take 20 mg down from 40 mg......it's 30 mg from 40 mg, then 20 mg after two weeks. All I am querying is the duration, he said taper after two weeks, internet says take four weeks. So will wait on his reply.

[jinasc]

Hi

I looked at your profile and had to scroll all through your posts to discover if you had GCA or PMR. It would be helpful if you could expand the details in the box, where you have your name. ie, PMR date etc.

I noticed you joined Jan this year and also if I have read this correctly, you have PMR and not GCA?

For PMR the normal start dose is 15mg - 20mg.

60mg start dose is for GCA. sometimes, some, not many, are started on 40mg depending on the medical symptoms.

I think, but am unsure that dropping 10mg at a time, would be OK until you got to 20mg then no more than 10% at a time. Then once down to 10mg, look at the tapering plans on here and try them out.

Others will be along who know more than me.

[Hidden in reply to jinasc]

Yes, you're right. In Dec I was diagnosed with PMR, starting dose of Pred. was 15 mg...had to drop to 10 mg after not having slept for 16 nights on the stretch. By the time I got down to 8.5 mg the jaw issue ensued...still not sure it was GCA and neither did rheumy, but he was being careful with me with only having the sight in one eye. I seem to think it's jaw tension with the worry of getting GCA...who knows !! Rheumatologist don't like us being on high doses of Pred for too long due to side affects. I'll wait for his letter for my regime of tapering.

[jinasc in reply to Hidden]

I wish that Consultants would not worry so much about side effects.

I had GCA and it was 5 years before remission. The first two years, Feb diagnosed, 60mg. Slowly down to 20 mg by Nov - flare back up to 40mg...............again down to 20mg and the second flare so back up to 40mg. Then the 'no more than 10% at a time drop and it worked.....still too 4 years to get down to 5mg and then another year - remission.

Follow this link and Eric L Matteson, who has retired 2019, was one of the worlds leading expert on both PMR and GCA.

Citation: Comparable rates of glucocorticoid-associated adverse events in patients with polymyalgia rheumatica and comorbidities in the general population.

Arthritis Care and Research, July 13, 2017,

ncbi.nlm.nih.gov/pubmed/287....

Eric L. Matteson, M.D., MPH

Emeritus Chair, Division of Rheumatology

[Hidden in reply to jinasc]

How did your 'Flare Ups) present themselves. Was it more PMR or GCA ? What a long time for you

[jinasc in reply to Hidden]

I had GCA only not PMR. The 'Flares' are the symptoms going back, usually caused by missing the dose ncessary to control. To fast reducing..............however that has changed over the past 8 years and we now have tapering plans, produced by patients for patients. The first by Ragnar, then two more, DSNS and T&H, now there are many more - but DSNS seems to be the best one. Always tell your medics what you are doing................some agree and some do not..............but as always, your body, your decision.

BTW, 5 years is not long for GCA - for some people it is shorter, but not by much, others longer. PMR some on here have had it for well over 10 years............both come when they want and go when they want. Until we find the cause, there is no cure. Just pred which enables you to live your life, differently, but easier.

Hope that explanation helps..............if not - send me a PM. It is a steep learning curve once you are diagnosed, but that can and does happen with many illnesses.

[Hidden in reply to jinasc]

So it is bad headaches, jaw and blurred vision ?

[jinasc in reply to Hidden]

Have you read these, if not, follow the links.

BSR Guidelines on the Diagnosis and Treatment of GCA.

academic.oup.com/rheumatolo...

BSR Guidelines on the Diagnosis and Treatment of PMR.

academic.oup.com/rheumatolo...

The NHS website also has the the guidelines on their website.

You can print them off if you want.

[DorsetLady PMRGCAuk volunteer]

Hi,

As I’ve said before - for “confirmed” GCA monthly reductions (in my view ) can be done at 10mg a time, but on a monthly basis. But only to 20mg (as jinasc has already said) or 25mg - then 2,&mg then 1mg (10%rule)

I think the issue with you is that your Rheumy is not convinced you have GCA so wants to get you down to a more normal PMR dose.

Others with PMR have said they’ve occasionally had “GCA like” systems, but not full blown GCA so it becomes very difficult sometimes to know exactly what you have.

As discussed previously and your issues with jaw, are you any nearer to seeing a dentist and getting help on that?

[Hidden in reply to DorsetLady]

Hiya, I was going to get the mouth guard made but now due to having to stay in can't arrange that until the virus is over. Would be madness to sit in a dentists waiting room. I bet many have cancelled their appts. I just feel as though my jaw in so tense all the time and just don't know how to relax it. Just had lunch and today, not the pain I had the other day. Only time will tell with my reductions. Took my first 30 mg yesterday...all good at the moment. I did have some ache on sides of both arms the other day (under arms) so PMR showing it face again, but soon went off.

Seeing hailstones here this afternoon.

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

Good hope it stays that way. Take care.

[HeronNS in reply to Hidden]

In fact all our dentists offices are closed and have been for weeks now.