Meds

[viamonv]

What mg of meds did you start at and for how long before you went down some?

[DorsetLady PMRGCAuk volunteer]

Hi viamonv,

You are going to get as many answers as there are people on here! It depends whether GCA or PMR diagnosed, and on individuals and symptoms. But you asked so -

Me - GCA - 80mg for 2 weeks initially, then 60mg for a month. Then reductions roughly at monthly intervals @ 5mg per time until 25mg,

then 2. 5mg to 15mg,

1mg per reduction until 7mg,

then 0.5mg per reduction to zero.

Entire time - 4&1/2years.

[viamonv in reply to DorsetLady]

Yes I am at 40mg but having some pain. Called today to see what he wants me to do. Been on 40mg for about a month but last night started hurting again not bad but some. thank you for answering me.

[PMRpro Ambassador in reply to viamonv]

What is your diagnosis?

[viamonv in reply to PMRpro]

gca

[PMRpro Ambassador in reply to viamonv]

40mg is the bottom end of the range of dose for GCA. Maybe you need a bit more if you still have pain after a month.

[SheffieldJane]

You were diagnosed with GCA although your bloods came back negative, is that right? What dose has your Rheumatologist advised you to take? GCA needs careful supervision and qualified medical advice. Perhaps you could tell us a little more about what’s worrying you?

[viamonv in reply to SheffieldJane]

everything was neg. but as soon as they took me down to 30mg the pain got back the same.

[DorsetLady PMRGCAuk volunteer in reply to viamonv]

Would say that

a. 40mg was not enough start with for you (maybe doctor was being cautious because tests neg) so inflammation never fully controlled,

b. therefore reduction too quick timewise, and too big in percentage terms.

Not sure how long you were on 40mg initially, but I think it needs to be at least 4 weeks, not the two that many doctors seem to favour. Plus of course it needs to be enough as well. Then reduce by 5mg or even 2.5mg if you can’t manage 5mg - certainly not 10mg!

[Hidden]

I was diagnosed with GCA... started on 40 mg, improved 60%. Increased to 60mg and felt 100% better. Started a taper down.... got to 45mg and experienced a major meltdown! Horrible! Had to be increased to 80mg to get same relief I had been getting at 60 mg. I started decreasing again and now on 50 mg... so pretty much back where I started in November 2017. ☹️

[viamonv in reply to Hidden]

same with me.

[Zampalion]

Started 6 years ago at 25mgs took about a year to get to 12mgs and a very slow reduction over 5 years to get to zero this week keeping everything crossed that there’s no reaction.

[Hidden in reply to Zampalion]

Wow! Best of luck! Fingers and toes crossed!

[Zampalion in reply to Hidden]

Thank you

[enan-illuc]

Hi Viamonv,

I have PMR/GCA and started at 60mg of Prednisone. GCA seems to need more Prednisone. I tapered slowly after experiencing some 'Flares' by tapering too fast. I am no expert but I think slow is better in the long run. Hope this helps.

[Janicep]

I have PMR and started at 20mgs in November 2017 and down to 15mgs - sore occasionally during the day but will see what happens when I reduce after Easter visitors have gone

[ackagee]

Hi viamonv

Greetings from this 73 y/o male, UK born, New Zealander who was diagnosed with PMR on 7 Sep 2017. All the classic symptoms: stiff neck, sore shoulders & hips. ESR: 29, CRP: 36 . (In NZ, ESR should be <26 mm/hr, CRP <5 mg/L). Started on 40 mg Prednisone / day for 4 days: 100% improvement overnight ! Then 30 mg for 2 days, then 20 mg: oops ! too fast: big flare, felt I was back at square one...

So, after 2 days at 20 mg, I was back up to 30 for 3 days. At this point, with Kate Gilbert's excellent book having arrived, my GP conceded I seemed to know more about PMR than he did so let me take over my tapering regime. So, 28 mg for 7 days, 25 for 7 days, 24 for 3 days, 23 for 3 days, 22 for 3 days, 21 for 3 days. All going OK until 20 mg when aching shoulders worse. Decided to tough it out: stayed on 20 mg for 11 days. Then 19 for 4 days, 18 for 4 days, 17 for 4 days, 16 for 4 days, 15 for 4 days.

Then another flare: not too happy after a couple of days on 14 mg. So stayed on 14 for 10 days. Then 13 for 10 days, 12 for 10 days, 11 for 10 days, 10.5 mg for 10 days. Oops ! flare again ! Back up to 12 mg per day for 20 days. Then 11 mg for 10 days, 10 mg for 10 days, 9.5 mg for 10 days, 9 mg for 10 days. Followed the DSNS taper from then on.

Currently on 8.5 mg Pred / day, all going good right now. My bloods get done every 2 weeks; last time I had anything outside normal range was a CRP of 6 mg/L back on 25 October. Last week's ESR was 3 mm/hr, CRP 1 mg/L. No aches these days, able to go swimming, waterblast the house, do 5 hours concreting, going to the gym etc. Main hassle is poor sleep: I wake after 3 or 4 hours hours then toss and turn. If I get 6 hours total a night that's good.

[viamonv in reply to ackagee]

wow that's alot. I have GCA. Right now I am at 40mg till further notice. Take your meds in morning. I found that help me sleep better at night. When I took at night I was up every hour to go to bathroom.