10mg prednisolone seems to be the way forward - for now

[gillsky8]

Had long discussion with GP this morning, weighing up all recent and previous issues. There is the matter of the fact that I suffer from sciatica as well as the PMR and having had 3 unsuccessful attempts at reducing to 9mg I have agreed with her to remain for at least a further 2/3 months on 10.

Within a week of reducing even by the 1mg, my whole body seems to go into reverse mode, tired aching muscles and restriction of movement in my shoulders and hips , I feel weary from it, however just upping again puts it right.

I feel so much better, able to walk the dog happily, get around with jobs at home and I even think my state of mind and well being is improved at the higher dose.

Whatever a 10mg continuing dose of steroid will do in the long term, I have no idea, I also take esomeprazole for hiatus hernia, twice a day, tried to reduce that and ran into problems so maybe at the age of 71 it's time to accept that these issues are going to be ongoing.

Pros and cons, no doubt there are many but for now I prefer the good quality of life rather than this constant anxiety over can I cut this down , can I reduce this again ??? etc. etc.

So we will see ................

[DorsetLady PMRGCAuk volunteer]

Won’t always be at 10mg - but take it for now and forget about tapering for a while.

When you think about it again -slower tapering plan and only 0.5mg a time,

Don’t put pressure on yourself…

[gillsky8 in reply to DorsetLady]

Thank you 🙏

[123-go]

A long discussion with a GP! I had to read that again …and again 😉.

Enjoy the quality of life 10mg pred gives you and maybe, when you’re ready, you might try a smaller reduction of 0.5mg and see how that goes. 🤞

[gillsky8 in reply to 123-go]

Well actually it was 10 mins !!! But that for my GP IS LONG 🤣

[PMRpro Ambassador]

I was at above 10mg for probably 10 of the last 15 years, some of the time well above 10mg. Hasn't killed me yet!!!!

I've just had a similar experience. I felt OK at 7mg plus Actemra but the last couple of weeks I had hip stiffness and discomfort. So I tried 10mg the other night - oh what a difference ... One of my flares that tend to happen every couple of years I assume.

[Alchemy8 in reply to PMRpro]

PMRpro do you take odd extras just to clear temporary flares?

[PMRpro Ambassador in reply to Alchemy8]

I do - always have done.

[Alchemy8 in reply to PMRpro]

That's helpful. Do you say take an extra one or two and then drop back without tapering?

[Alebeau]

I was stuck at that level myself for a while then was encouraged to try a steroid sparing drug which I finally agreed to try - Leflunomide - this was a mistake in hindsight as while I did reduce to 5.5 the side effects were terrible (numb feet and hands foe example) and had to discontinue the drug after a year. Immediately PMR pain returned and I was up to 15 MG in no time. Also developped bursitis in one shoulder at the same time - no fun - it's gone now.

Now I will only take prednisone and am down to 8. 5 with no pain and hope to continue reducing this time with no turning back. I am reducing by .5 mg each month as long as I'm pain free and my blood work is steady.

Good luck to you - the one factor that I think really matters is stress and I am thankfully much less stressed these days.

[Alchemy8]

Am in exactly this position myself Gillsky8. Before my husband died and I was having to sort the house out (now sold but still a massive amount to clear) I was on 9mg but that felt edgy. I went up to 10mg and seem to be keeping an even keel on that with occasional discomfort. Considering what I am doing I think I have done well. I have been on 10mg now for a year and will stay on it until I move into my next house around Christmas/New Year (possibly!). No thoughts at all of dropping down in the meantime.

[PMRpro Ambassador in reply to Alchemy8]

While my husband was ill I needed over 15mg to function. MTX had knocked me out, the fatigue after a few weeks only lifted about 12 hours before the next dose was due. After he died I had a massive flare and needed even more . My rheumy is more interested in QOL so wasn't hard on me. Then he added Actemra, because he could and we felt it was getting silly, and I got to 7mg but not lower without bicep pain returning and I can use my arms and hands! So we settled at that and I'm trying to extend the gap between Actemra injections. But a couple of weeks ago I started a flare of the PMR stiffness in my hips, Can't win!!!

[gillsky8 in reply to Alchemy8]

Thank you it’s just so helpful having your response. I am beating myself up over being on steroids, as I blame them for many of my other health issues but at the end of the day at 71 I think I need to start being realistic .