Hi all, really struggling at the moment, pains are back in legs and shoulders despite still being on 15mgs Pred. I had a virus a couple of weeks back and it has knocked me for six. Haven't contacted Gp as afraid they will increase the Pred dose,I was hoping when the virus went I would start to feel better. Just wondering if any one else had this problem. I am still new to all this and was wondering if 15mgs is enough of a dose. My pains are almost back to where they were when first diagnosed. I am struggling in work, struggling at home finding it difficult to turn over in bed again. Walking is horrendous as my legs feel like ton weights and I am just so tired all the time. Any suggestions would be gratefully received. Not seen a Rheumatologist yet as my local hospital got a problem with consultants so not sure when I will see anyone. My gp has been really good, although I have only spoke to them on the phone not seeing them for a couple of weeks.
Having a tough time at present.: Hi all, really... - PMRGCAuk
Having a tough time at present.
Well you know what we are going to say don’t you? It is pointless to stay on a too low dose of Pred getting the worst of both worlds. What about trying an extra 5 mgs for a few days then going straight back down to 15 mgs. It sometimes works with viruses. My start dose was 20 mgs and I must say, I needed all of it. Good luck!
"My pains are almost back to where they were when first diagnosed. I am struggling ..."
That is the typical result of refusing to consider upping the dose. If the current dose is too low for the disease activity then the inflammation will build up until you are back where you were originally. Pred only works when you are taking enough of it - and you probably are not.
It may be a temporary blip, the virus has upset the immune system again and its gone into overdrive. You need more - it might just be a mg more but you can't be sure of that and you will probably need at least a few days at maybe 5mg more to clear out the accumulated inflamamtion that is causing the problem. Leave it and it will just get worse.
We have all been there - I am at present but I won't compromise: I take what I need.
And to be honest - if you have a good GP that is probably better than an iffy rheumy!!!
Hi,
Having looked at previous post, it looks as if your problems started when you reduced from 15mg to 12.5mg - which was probably too much even though it’s a ‘recognised taper’ - then add in the virus and it’s a bit of a double whammy.
I would say that the reverse from 12.5 to 15mg probably wasn’t enough, so really you have a couple of options -
Stay at 15mg for another couple of weeks and see if things get better.
However, I doubt that will work, so maybe an increase to 17.5mg or even 20mg for a week will work. Then drop back down to15mg for a month before you think about reducing again - but this time around just reduce by 1mg a time. Not 2.5mg.
This sounds like good advice, just feeling very sorry for myself. Will have to speak to gp about increasing dose but think they will be ok with it. Thanks DorsetLady.
Yes you do need to discuss with GP, but if he’s sensible he will see that- at the moment - the dose you are on it not enough.
But hopefully a few weeks will get you back on track.
The PMR will win if you don’t let the pred fight with it and suppress it!
Hi
I’ve been on Pred now for almost 6 weeks. I started on 15mg and due to taper but the pain was still awful. Went up to 17.5mg and it’s only now, after 3 weeks on that dose that I’m starting to notice real improvement. The pain I have when due another dose is a lot less than it used to be and I’m not in ‘agony’ at any point in the day. I was told that the Pred has a build up effect and this is still true weeks later (thankfully!!) I’d go up to 17.5mg and give it a go. My understanding (and slow acceptance) is that the steroid journey is a long one but they do work! I’ve just had to throw out any idea of a ‘quick fix’ with it and realise it’s a war not just a battle of a couple of weeks.
Hope your pain eases soon!!
Not sure I'd call it a "build up" effect - it is more a "clearing out" effect as the accumulated inflammation is combatted. If you start on the right high enough dose it works a lot faster at the beginning and if 15mg doesn't seem enough then 20mg should be tried. And only once the pain is well managed should you even think of reducing the dose, however slowly.
I feel for you. I had a bad virus in the summer, everything seemed to flare. I thought I could get through it without increase in my Pred.
The virus turned into pleurisy and I ended up having 2 lots of antibiotics, a ventolin inhaler and I had to up my pred to 30mg. I was distraught as I was only on 8mg at the time. However, it was explained to me that going up to 30mg for 5 days was short term and that I could go straight back to my lower dose after the 5 days. I did it and thankfully everything settled down.
My advice to you is go and see your GP. It may be that the virus has made you flare. Lots of good advice you have been given here too.
Been in touch with my gp who arranged for me to have bloods this afternoon, but advised me against putting up prednisolone until bloods back. I asked him if he felt he would get any answers as I am already on 15mg prednisolone and I thought this would mask my inflammatory markers but he says not. Also he wants me to see my dentist urgently as he wants to start me on Alendronic Acid for my bones. So at least they are now recognising that I am going to be on the steroids for quite some time and need cover while on them.
No dexascan, no AA - I had no change in bone density in over 7 years on pred. It is NOT inevitable, there are quite a few people on the forums with a similar story.
IF you have low bone density to start with that is another thing - but the only way to know that is to have a dexascan. And osteopenia is not accurate enough a result - you need to knwo the t-scores.
I did ask him about a bone density scan, but his reply was that regardless of the results of a scan they would still want to start me on some cover,maybe because my mum had osteoporosis and fractured her hips three times, and I have broken 2 bones in less than 9 months prior to being diagnosed with PMR. Although they wouldn't do a bone scan when I asked when I turned 60 as they said the critea had changed and I didn't meet it then.
Why go to a specialist, if you have a good GP? In this group, I have read so many bad experiences with specialists compared to a few good ones. I stayed with my GP of over 15 years. He is the one who knows my body and its past history. He has had some experience with PMR patients and is willing to learn more.
By the way, I started on huge dose (I was in a very bad way) of 60mg for 3 days and then to 20mg. Since than, 13-14 months ago, my GP has allowed me to taper as I feel. He may give a suggestion, but nothing is written in stone. He realizes we are all different. I am down to 4.5mg for last 2 months, but hesitate to drop further as I am very fatigued in the afternoon and my legs are stiff and sometimes show discomfort.
I would suggest you don’t reduce any further for time being. You need to get rid of those “afternoon” issues before you do.
If they don’t get better you may need to consider an increase for a short while - don’t let them become anything more significant and turn into a flare.
I've taken 4.5 for 2 months, plan to continue. I can handle the afternoon fatigue. I believe my adrenals are just very slow to kick in.
Fair enough.
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