5mg prednisone for life?

[izzyart]

My sister and brother, in their 80's have had PMR for ten or more years, having gone thru flareups and even one had a 2 years remission but both are now on 5mg pred for life, which their rheumy (same for both) has permitted. I got pmr less than 2 years ago, started at 20mg and after several flarups, am now down to 5 1/2 mg wondering is I should stop at 5 and stay on that. I am almost 75 and on methotrexate and alendronate also. my rheumy said I cannot give up neither meth or alendronate until I get off pred entirely - please advise.

[Hidden]

Hi izzyart, it's a few things really isn't it. Firstly how was you last dexa scan? What were your t scores? Sometimes you may only need adcal and lifestyle changes to help maintain bone health. If all borderline or okay then I wouldn't take alendronic acid.

Re methotrexate...do you think it really is helping as much as pred? Have you experienced side effects that are make it a non beneficial drug layer on top of pred?

The rheumy cannot tell you what to take or not stop. It is entity context dependent. The problem is once on a steroid sparer like mxt (I am on another one), it becomes difficult to know if it's helping us really. I am still flaring every so often on the dmard and 6 to 7mg of pred for 18mths of the past 4 years. 5mg of pred isn't bad and research showed there were few side effects long term, may cataracts alone were a potential ongoing side effect. So you need to go through those issues and ask yourself if you think either are worth it.🌻

[izzyart in reply to Hidden]

thanks P, I will discuss with my doctors and get a dexa scan...

p

[Sandybo]

Hello izzyart, I’m afraid I cannot help you as regards methotrexate as I didn’t take it. I saw the pharmacist and he explained it all to me but I wasn’t happy about it. I went back to my consultant and told him and he agreed to let me Pmrpro’s DSNS reduction and have got on really well with it, apart from two occasions when I had other problems and had to stop the DSNS after which I carried on from where I left off and am now down to 3mg/ 2.5mg.

Sorry I can’t help you but I wish you all the best.

[izzyart in reply to Sandybo]

you did help!...knowing someone who got down to 3/2.5 is great inspiration for me...I do use the DSNS method and sometimes give an extra week or 2...

Thanks for your response.

[Hidden in reply to izzyart]

There must be quite a few people who get to zero and then don't need the forum so don't often come back to tell us. Some do...see below There certainly aren't over 10,000 people regularly contributing so they have moved on. 😉

healthunlocked.com/pmrgcauk...

[Orangelady]

Hi, it sounds like your rheumy has given his opinion. If it was me I’d want to be off the pred completely but I have been down to 1mg and flared so I know how painful that is. My local support group suggested dropping half a mg every 4-6 weeks and that’s what I’m doing this time.

If you are concerned perhaps you could ask for a second opinion.

[izzyart in reply to Orangelady]

wow!...down to 1 sounds incredible and I aim for that. thanks.