Advice on deciding about tapering

[ponai]

I'm on 6mg pred after about 7 years, and am weighing up whether to start tapering again this week. I was at 3 for some time and have only flared once (after a covid jab), but have never been free of some stiffness. I was at 4 1/2 in December but got severe buttock pain- fits completely with PMR Pro's suggestion of piriformis syndrome- and returned to 6 in case, but it didn't help- only heat and exercises reduce the pain and it's still there but manageable. The pmr is pretty much stabilized, just some shoulder stiffness and a lack of stamina, which is disabling, but probably normal. Is the stamina issue likely to be the pmr, in which case it's risky to taper, or the pred in which case it would be worth trying. I did think I was making progress ast 4 1/2, but there are so many variables it's hard to judge. I know, I can only try and see, but would like advice as I don't want to risk feeling worse, but would like the chance to feel better!

[PMRpro Ambassador]

I think it is fair enough to try a very small reduction with a very slow taper - 1/2mg over at least 4 weeks if no more. If you don't try you can't find out if you can.

[DorsetLady PMRGCAuk volunteer]

Lack of stamina could be down to adrenals… and the only way to get them going is to try reducing very slowly - and nudge them into doing something…

Sometimes it can be very difficult know what to do for the best… but unless you try with a very small and slow taper as suggested by PMRpro you are likely to stay as you are. .. and won’t know if you can feel better.

At times, you just have to bite the bullet and give it a go….if it doesn’t work you return to current dose and think again, if it does work, then good…

[ponai in reply to DorsetLady]

Thanks, both. I just needed encouragement. I'll go very slowly.

[DorsetLady PMRGCAuk volunteer in reply to ponai]

We can do encouragement 😊

[PMRpro Ambassador in reply to DorsetLady]

We certainly can!!!!!

[Temeraire]

I’ve just got to 6mg after 6 years. I dropped half a mg over about 3 months. Repeated each stage twice. It worked for me this time. Worth a go

[Zebedee44]

Hi ponai, I’m in exactly the same boat as you, being comfortably settled at 6mg after seven years. I admit to being extremely nervous about trying to taper, but I finally bit the bullet just yesterday and took my first 5.5 mg dose,

I have recently been diagnosed with a pituitary adenoma and waiting to speak to an Endocrinologist so on Tuesday I had multiple blood tests including ACTH which should indicate any cortisol in my blood. My own feeling is that my adrenals are unlikely to work at this stage and the inevitable reduction of pred lies ahead.

So I am totally with you in fearful anticipation and so admiring of those who have come through, let’s hold hands and jump together. Chrissie

[Rugger]

Have your blood tests shown up any inflammation in the past? If so, it might be worth asking your doctor to check.

I was tapering from 1.5mg to 1mg in December, but felt very tired and a bit achey. I wanted to blame my adrenals after almost 8 years of pred, but as you say, it's hard to judge just what's going on. However, a blood test at my recent Rheumatology appointment shows I still have active inflammation, so back up to 5mg and no tapering until I feel there's been an improvement!

Let's hope we all feel better soon!

[Shaza123 in reply to Rugger]

Good luck👍I’ve now forgotten what the real me ever felt like

[ponai in reply to Rugger]

Sounds helpful to have had blood tests. I was checked out a few times at the beginning- even saw a rheumatologist once- but have been left to my own devices since. My lovely GP retired.. the new one is no trouble, but pretty much absent. So I have instinct, some history, and this site and think it's time to bite the bullet. I also feel better having a plan, even if it doesn't work! Will report back in a few months.

[Hopeful424]

I feel your pain. I was on 4 mgs and tried to taper to 3.5 mgs and it did not work. Apparently, 4 mgs is needed to overcome the pain in my case. I have not been on prednisone for as long as you, but fight the battle of is the PMR damaging my body or is the prednisone the culprit! I have developed afib on this journey! I think what I eat has a lot to do with it as well. Are you on any restricted diet? Hope you can slowly taper by 1/2 mg and find success . It will be a trial and error I believe. Blessings to you!