I am new here. How long did you stay on 10 mg of ... - PMRGCAuk

PMRGCAuk

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I am new here. How long did you stay on 10 mg of prednisone?

Ana946
Ana946

Hi to all! I am 73 and was diagnosed with PMR about 4.5 months ago. My rheumatologist put me on 30 mg of prednisone for 10 days, 25 mg for 10 days and 20 mg for 10 days, along with calcium, vit. D/K2 and pantoprazole. First dose was like a miracle and within 4 hours I was pain free. After one month on prednisone, my blood tests went back to normal and my DEXA scan showed borderline osteopenia/osteoporosis. My rheumatologist prescribed AA, never took it. He also told me his reduction plan: to alternate 20/10 mg of prednisone for two weeks and then to stay on 10 mg up to the next appointment in July. Instead to follow his risky plan, I used DSNS method ( one day new dose, four days old dose......etc.) to reduce from 20 mg to 15/12.5/11.25. I am now reducing from 11.25 mg to 10 mg. So far, so good. No pains.

I am very grateful I found this forum at the start of my PMR journey . I want to say a big “thank you” to all, for everything I have learned here. And many thanks to PMRpro who created DSNS method I have used. I never felt unwell during the tapering.

My question is how long did you stay on 10 mg of prednisone? I know the recommendation of Bristol group to stay on 10 mg for a year, but my initial dose was higher, so I am not sure.

14 Replies
oldestnewest

Well done you 👏👏👏. I stayed at 10 mgs for a month and dropped by 0.5 mgs and stayed at 9.5 mgs for a month and so on. The duration of this disease can be years though - listen to your body. I really like the idea of a year at 10 mgs. My body would have loved it but it’s not the protocol in Yorkshire.

PMRpro
PMRproAmbassador

The high dose at the beginning probably doesn't make much difference. I think the 10mg in the Bristol plan allows patients to get past the 18 months at the start where relapses/increases in disease activity would cause flares.

You have done really well to get this far in under 6 months - so I would keep on with the DSNS and see how you get on. The idea is that you realise quite quickly if the newest dose is not enough. It is very common for people to THINK they are flaring and go back up to the last dose but really it was because their reduction steps were too big and they had steroid withdrawal discomfort which can feel very similar.

I wouldn't like to be your rheumy's patient - alternating 20 and 10 is just cruelty. I wonder if he has ever tried it!

Ana946
Ana946 in reply to PMRpro

Thank you, Scheffieldjane and PMRpro for your answers and comments. And I would rather not be the patient of my rheumatologist, believe me!

Blearyeyed
Blearyeyed in reply to Ana946

You have done really well and if you continue following the advice from PMRPro and the support group on the forum you look like you will be successful and have a smoother path with PMR.

My only addition to the plan would be , as the DSNS method has worked so well for you , to let the Rheumatologist know what you did to get to 10 mg and how you did it and print off the method to take to show him at the July appointment .

They may not know about this method themselves and may take it off you like a prize bit of information and start giving it to their other patients to make others lives on Pred a bit easier too.

As you can prove that you followed this and were successful , you will also be able to tell them that you would like to continue following the PMR/ GCA UK advice for how long to remain on 10mg then taper using the same method but hopefully with agreement from them to do it.

If they are in the loop, and accept what you want to do, it makes dealing with them much less stressful because you don't have to keep arguing against doing a taper that is too quick and won't get those possible flares and need to increase again.

Well done you , a star PMR Patient in the making!😋😁😘

Ana946
Ana946 in reply to Blearyeyed

Thank you for your response and suggestions. Yes, it is a good idea to give the informations about DSNS method and PMR/GCA UK advices to the doctor, as it would be useful for me and for other patients. But, I am afraid my rheumatologist is one of those typical doctors, very vain and a little bit arrogant. I have to create a good strategy how to try to convince him.

Blearyeyed
Blearyeyed in reply to Ana946

Hopefully if you butter him up with compliments and then just casually say you thought he would appreciate that you tried to help yourself rather than bothering him ( giggle!!) did some research instead and used the method from the charity and it worked . Then continue that you thought you would show him what you did and find out what he thought , and hoped he would be happy for you to continue with that programme as it seemed to be working for you , you might just overcome.

If you brush their little egos a bit before deviously talking about what you want to do ( and make them believe they have a say in the matter!) they are often more receptive once vanity has been appeased.

Sad you have to use the same tactics that you sometimes need to use on your other half to get a new sofa , but true , and if it works , what the heck!

( Not a sexist comment by the way it works on Doctors and Other Halfs whether they are Make or Female , Ego doesn't have Gender😋😁)

Good luck , Bee x

Ana946
Ana946 in reply to Blearyeyed

You are obviously an excellent diplomat. Thank you for great advice, which I could apply to convince my doctor. It is to late for me to learn how it works on Other Halfs....

I agree with PMRpro. Provided you are getting through each reduction without return of PMR symptoms, and any withdrawal symptoms settle within the taper period, carry on. I did start reducing by .5 mg steps at about 8 mg, and this also helped. Had a pretty uneventful taper to about 2 mg, which means for the last couple of years while PMR lingers I've been at that low dose. I think those of us who metabolize pred efficiently are a bit luckier than those who only get the benefit of a smaller percentage of the dose, and it seems like you are doing very well, so carry on. Just slow down the taper as you drop below 10 mg.

Ana946
Ana946 in reply to HeronNS

Thank you for your response and encouragement to carry on. I will keep in mind to slow down the taper below 10 mg.

I think 10 mg from Bristol study was just an example on how to slow down taper at some lower level. Everyone is different and underlying PMR activity is also different. You can use 1mg steps until about 8mg, and then switch to 0.5mg. I continued to reduce until I got to 5mg level and then after several attempts to go below 5 failed, I decided to stay 6 months on that level. After that pause, I continued reduction. Usual sticking point in reduction is somewhere in 5-7mg range from what I have read in the forums. At that level you will be reaching point that your adrenals need to wake up, I guess that is why.

Ana946
Ana946 in reply to nickm001

Thank you for response. It makes sense. It is better to stay on lower dose for longer period of time, as you did on 5 mg for six months, than to stay on 10 mg. If I could manage.

PMRpro
PMRproAmbassador in reply to nickm001

The instruction to stay on 10mg for a year is part of their standard taper - and it was that part I think that reduced their flare rate to 1 in 5 instead of the 3 in 5 found with most of the recommeded approaches in the literature. They actually did a comparison.

nickm001
nickm001 in reply to PMRpro

I would be more comfortable if the study was done at ALL doses between 5 and 12mg, and then the one with best outcome was selected. If not, I think the logic of staying for longer time at some low dose is the best one can learn from the study. That is my opinion and that is why I continued to reduce below 10mg until I met natural "wall", which for me was 5mg

HeronNS
HeronNS in reply to nickm001

I agree. My wall has been 2 mg - big difference! Actually I was at 10 mg within about two months of starting and it would have been plain silly to stop tapering so soon and for so long. By the end of the first year I was down to 3 with no flares.

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