Advice please.

[Freshmimt]

I’m not really doing too well, can’t get down beyond 15 pred. I ve tried the recommended taper, but even then pain remains, I had a tummy bug a few weeks ago, only lasted a couple of days but not feeling well since,

Bloods seem to be going in the right direction, bit of a blip with WBC, which is being monitored.

The first few weeks on pred were really good, I felt almost human, so what the hell have I done to go backwards?

I have osteoporosis at -2.9 in my spine, but only -2.4 in hip, not taken AA as yet,as I need some dental work.

Most days just getting up, dressed and breakfast and I’m physically and mentally shattered.

Sorry for the moan, but really could do with some advice.

[PMRpro Ambassador]

"bit of a blip with WBC" - by that do you mean the WBC count has gone up? If so that is absolutely usual with pred.

What dose did you start on? How long were you on it? What "recommended taper" did you do? One from here or what your doctor said? Obviously your activity isn't great - but did you try to go back to normal service once you felt human again?

And the stomach bug probably caused more of an upset than you think.

[Freshmimt in reply to PMRpro]

Hi PMRpro, Suzy And Jinasc,I started on 15, and followed advice on DSNS, and only managed to get to 12.5, but pain returned very quickly, then tried to 14, again pain returned, rheumatologist wanted much faster taper but spoke to GP and she agreed to the go slow method, unfortunately she has gone on long term sick, so not getting consistent advice, WBC, went up higher than was expected even on pred, but seems to be settling,

I did have a burst of energy at the end of Au.gust and probably did to much,

But have rested since and retuRned to 15,

Must admit it has taken me by surprise how little I can manage to do, reading what others achieve I am struggling with my limitations, even showering, or tryIng to load washer or dishwasher and I’m shattered.

Pain in shoulder and arm, seems very PMR, but could I suppose be OA,

I know my back is OA, I know it could be a lot worse and probably thought I was in control once I was diagnosed, but that’s far from what’s happening,

Is it safe for me to stay on15 for a bit longer?

Thank you so much for your kind support.

[Hidden in reply to Freshmimt]

At your stage I was the same so please don't worry that the pred has stopped working... But it has in the sense you need more at the moment perhaps having dropped too far too fast. 🤔

Fatigue has been my most persistent symptom. It has got better with time, but it can still kick me over. I had a tummy bug and flared so have had to increase pred after I was stable at 6mg for a year. These things just happen sometimes.

You need to get stable and get someone else to do the chores or leave them a few days. Fingers crossed you will feel less fatigued. 🌻

[Freshmimt in reply to Hidden]

Thank you Poopadoops, that’s so very reassuring,

[PMRpro Ambassador in reply to Freshmimt]

If it isn't safe I'm in trouble - I had to go back to 15mg about a year ago and was on it until the middle of the summer, any less caused problems, not just with the PMR (cardiac problem) then after I had a pacemaker fitted I had to taper. I got to 10mg OK I thought but it isn't quite enough. Currently back at 12mg. It took me over 4 years at the start to get to under 10mg. I haven't crumbled in a heap and have no identfiable adverse effects.

I suspect your raised WBC was due to an infection and that has made managing the PMR even more difficult. The pain in the shoulder and arm COULD be shoulder bursitis - it is very common in PMR and if it gets too bad a 15mg oral dose isn't going to do the job.

If it was the case you had an infection - that could account for the excessive fatigue as well but everyone is different in every aspect of PMR. Some manage a lot, some don't and it isn't wrong because you can't. It WILL improve with time - but as long as the initial episode of autoimmune disease is very active then you will struggle to reduce and it will make you feel really unwell. You will learn to deal with it and plan how to do things - but that also takes time.

[Freshmimt in reply to PMRpro]

Thanks PMRpro, you are all so reassuring, it’s wonderful to have such good support.

It’s a strange illness isn’t it?, and I clearly haven’t come to terms with it all yet, thought I’d be up and running after years of pain, when diagnosed thought yey, take the pred and life will some sort of normal. Ah well,I will get there one day x

[PMRpro Ambassador in reply to Freshmimt]

In a year you will look back and see how far you have come - it sounds a long time but it won't happen suddenly, it will slowly improve.

[Freshmimt in reply to PMRpro]

Thank you, hope you have a good weekend, and have a pain free enjoyable time x

[suzy1959]

Are you on 15mgs. at the moment?

It sounds like you aren't on enough in any case. This could well be due to the bug you had. Any little thing can knock us off balance. You may need more Pred. for a short while (less than 2 weeks) and then be able to drop back down to a level that has been comfortable for you. You are at the very beginning of this delightful PMR journey, so you don't need to stress about how much Pred. you need, just take what your body needs now. I have been on around 11mgs for the last 7.5 years, so we are all different and you need what you need to feel OK.

[jinasc]

From your profile, I gather you were only diagnosed in June this year. Were you started on 15mg or 20mg?

If it was 20mg and you quickly dropped - we need to know.

Please come back with the information PMRpro has asked for as well.

[Blearyeyed]

Don't beat yourself up , you are doing as well as you can.

It's not your job with PMR or GCA to follow a Doctor's timetable but to listen to your body and taper to its needs.

If you have had a stomach bug and have pain from other things like OA all of these things will be working against your ability to taper your dose .

You shouldn't ever consider trying to start a new taper if you have a nasty bug or new injury until the effect of that has cleared as it won't be successful.

Other illnesses trigger increased PMR inflammation because you body is run down , your body is tense and added physical tension brings more Pain.

Even Healthy people can be months before they feel themselves again after an infection . If you have a Chronic condition it is totally normal to feel the Fatigue caused by bouts of illness alot longer.

Getting added pain management and support for your OA symptoms will help , and giving yourself time to properly rest and recouperate after your bug , building up your strength slowly and your body balance with good nutrients and lots of fluids will make you better prepared for when you feel it is time to taper again.

Until you feel all of your conditions and Pain and Fatigue are at a manageable daily level you may just need to stay at the dose you are on for awhile.

And that's OK , because you need it.

We've all been there , take care xxx

[Freshmimt in reply to Blearyeyed]

Thank you, yes will not try and taper for a while, little is expected of me, except by myself, I’m so lucky, but miss being me, the doer,

You are all so good and helpful and generous with your time and info.x

[Blearyeyed in reply to Freshmimt]

Yes sometimes we are our worst critics , it takes time to Accept that change is slow and get used to not pushing ourselves.