Reducing

[Suet3942]

I’ve been following pmrpro taper and have managed to get to 9 where I have stayed for the last 2 weeks. I am still getting pain in my groin and buttocks. Do I remain at 9 or continue to taper to 8mg? Any advice would be welcome. I got back from a 5 day coach trip last Wednesday and was very stiff for a couple of days but that has abated.

[Hidden]

Hi Sue

Hope you enjoyed your trip? That would make you a bit stiff too. Maybe wait until the weekend before you start your Taper but l think it’s now time to think about going down in 0.5mg as dropping from 9mg to 8mg is more than 10% even though you have the Methotrexate as a Steroid Sparer.

My lovely Dr Lim (RIP) always advocated drops from 10mg in 0.5mg steps.

Wishing you Luck 🍀 for the next Taper.

Angela x

[Suet3942 in reply to Hidden]

Thanks Angela. X

[Hidden]

Agree with mrsN...glad you had good break...a few more days where you are then 0.5mg. it worked better for me without getting massive withdrawal symptoms. Perhaps try some of the piriformis stretches to loosen it up.

spine-health.com/conditions...

[Suet3942 in reply to Hidden]

Thank you.

[PMRpro Ambassador]

To me, groin pain suggests bursitis and buttock pain piriformis syndrome. Both of which are part of PMR for many and both of which respond to higher doses of pred but are better managed separately. And that makes reducing the oral pred easier.

Piriformis will often respond to a stretching approach - google to find more about it.

Bursitis responds to rest but if it is being fed by the PMR that doesn't work so well. I've had local steroid shots which can work minor miracles.

[GerriMc in reply to PMRpro]

I agree. I had terrible groin pain. Rheumy suggested physiotherapy which I was sceptical of. Anyway, I went and had a few weeks of, sometimes painful, deep tissue massage. Combined with exercises and specific stretches, it has been successful. I only occasionally get a tight feeling now. Then I know it’s time to stretch again. I think the Pred makes tendons weak as well as the PMR problems.

Wishing you the best.

[Suet3942 in reply to GerriMc]

Thank you. I'll make an appointment.

[ralinn52 in reply to PMRpro]

It hurt soooo to stretch this area! I've been enduring this for over too long

[piglette]

I find it best to stay on the same dose for four weeks so that you have time to ensure that it is working OK. I also find .5mg every four weeks works well.

[SheffieldJane]

Hi Sue!

Are you cutting your pills in half to reduce. My body got super sensitive reducing from 10 mgs. Those symptoms sound pretty specific and PMR - like. I got stuck at 7 mgs for a year. It was like cat and mouse, then one day I managed to get down, something changed in my PMR I think.

I hope you enjoyed your holiday though. Try not to worry, you’ll get there.

I see that PMRPro has a solution - she’s a star!

[Suet3942 in reply to SheffieldJane]

Thanks Jane. X

[Chopin002]

Hi Suet.

I am exactly the same as you so glad you asked the question and received some helpful answers. I did get down to 5 last time with a huge flare. Took forever to control so back to 12, 10, and now 9. I was good at 7 last time before the bottom fell out so think I can get there by ones every three weeks. After that the DSNS will be my method. I didn’t know about it back then. Good Luck!

[Hidden in reply to Chopin002]

Hi Chopin if you get to 7mg again think about going by 0.5mg from there as basically we physiologically need around 7mg of cortisol daily & as our Adrenal Glands are still dozing or fast asleep we really start to struggle so it’s much more important to go even slower.

I know, as l’ve been to 5mg, l got to 7.5mg with Methotrexate & to 5mg under the cover of Chemo for something unrelated but everyone was kind of excited that it might wipe the PMR out but what it did do was hold me at 5mg for almost a year.......

Then PMR decided it had been dormant for too long & decided to kick off again, so back to 7.5mg & Methotrexate!

Take it steady & Good Luck 🍀

[Suet3942 in reply to Chopin002]

Thanks for your help

[Chopin002]

Okay, thanks. I know now how finicky everything can get and I certainly don’t want another set back. Why can’t I just live on 7 mg. And forget about reducing. At least I can live half decently here. Dr. Talks about adding methotrexate to the mix for me too. I am resisting as I don’t want any more drugs. I will still have PMR so what’s the difference. I also quit my actenol after reading all those side effects. Here I thought it was just a calcium supplement. Now I only take a multi supplement. Perhaps I should add in some more calcium over the counter. I am not afraid of pred anymore as it has given me my life back to a degree. What a drag though. Never knew so many people have this dreadful ailment. Appreciate your support.

[PMRpro Ambassador in reply to Chopin002]

7mg is a physiological dose - about the same sort of amount your body makes anyway. I was at about that sort of dose when I tried methotrexate for 4 weeks. I refused to take a drug that made me feel worse than untreated PMR. The rheumy took the point and was quite happy. Quality of life is all. And I have 3 medics who think the same - to different degrees One is totally anti-alcohol (because it is bad for the heart) while the cardiologist just laughed when I said for a horrible moment I had thought a G&T was triggering atrial fibrillation episodes. But it was coincidence!!!!

[Chopin002 in reply to PMRpro]

Yes, my point exactly. Not ready to trade something bad for something worse. Hopefully I can manage my reduction or my resting at certain levels myself. I am now armed with loads of information from this forum. Thank goodness or I am sure I would never understand what was happening. Slow and steady wins the race. 😊

[PMRpro Ambassador in reply to Chopin002]

I should have said - I personally don't find pred bad! No identifiable side effects - or at least, none I can't manage. No loss of bone density (calcium and vit D only), gained weight - lost weight by cutting carbs...

[Chopin002 in reply to PMRpro]

How much calcium and vitamin d. ?

[PMRpro Ambassador in reply to Chopin002]

2x daily 500mg calcium and 400 IU vit D. I do actually take another 2000 IU vit D a lot of the time - and if I stop supplements my vit D just falls steadily despite living in Italy and never using sunscreen - so I am obviously not making any!! I don't go out in the midday sun if I can help it and slip and slap - just don't slop And always walk on the shady side of the street ...