Good morning. I am looking for advice. Diagnosed 2.5 years ago both hips and arms aged 56. I have been on pred since then with attempts to taper being halted each time by catching a virus including covid. The lowest I have managed has been 7.5mg Dr has now tried Methotrexate with me which turned out to be a night mare of sickness & exhaustion. She has now gone on maternity leave and told me to self manage for 6 months if possible. I was on 10mg pred with methotrexate as well and have gone up to 15mg now. My main question is should I be pain free at this point and if not do I need to increase even further and also when can I start to try & come back down again. I am confident in the diagnosis of PMR so not looking at other things atm. By7pm my legs are like lead and my arms ache which then means sleeping is more difficult. I do have to work so rest is not always possible as I am self employed.
Increase pred or cope with some pain?: Good morning... - PMRGCAuk
Increase pred or cope with some pain?
How long have you been on 15mg? If it’s a flare scenario, you may need up to 2weeks to get things under control. Unfortunately if you have had a number of issues which you seem to have through various reasons, it can prove more difficult to regain control.
It might be worth following the normal procedure for a flare, but can you identify the dose you last felt okay? If so, add 5mg to that for 7-14 days, then drop back down to just ABOVE that dose for a month before resuming taper.
Are you still on MTX? If so might be worth looking at FAQs, MrsNails has written extensively about the subject.
Do you have access to any medical advice, surely there must be maternity cover for your GP.
Thank you. I live in Spain so its a rheumy consultant. I can transfer to another in an emergency but this one speaks english and my spanish is not good enough for medical discussions. I was taken off the Methotrexate after 6 weeks. I have been on 15mg for 4 weeks since that point. The last time I felt Ok was at 10mg but that was before covid and I cant seem to get the balance right since having it. Fortunately my sugar levels have stabilised back to normal which is why she wanted me down on the steroids and added methotrexate. The smallest dose we can get here is 2.5mg which can be halved to 1.25mg.
I also think the flare goes back to last July and I have never got it right since.
In that case, a lot of inflammation has been allowed to build up, so you probably need an increase to 20mg to get things back under control...also have a look at this - includes info on flares -
Know you’re in Spain -.and yes the differing sizes in tablets do make life more difficult, as does working.
If you’re saying 15mg is not improving things after 4 weeks then maybe you do need to -
a.try it for another 2 weeks, or
b. give 17.5mg or even 20mg a short trial - say 5days - then back to 15mg
Very frustrating for you.
I have now done 5 days at 17.5mg of pred first thing in a morning & have massive improvement, very little stiffness on waking and no 7pm pain. What would you suggest I do now? go back to 15mg or continue? I also have hip bursitis and 2 bulging discs caused consultant thinks, by not being diagnosed for 2.5 years and walking very badly to help with the hip pain. I have learnt to differentiate the pain now although with higher steroids the bursitis improves too.
I probably would give it 10 days in total - you can then drop back down to 15mg for another week. Then see how you feel…you should be able to drop back down to 12.5mg for a week or two, then to 10mg. But take each step, then re-evaluate before you move to next. No point in rushing, or you’ll end up in same situation.
Thank you for your swift reply. I think it makes sense to do that.
If MTX was not for you (I wasn't sick but the exhaustion was terrible and I don't have to work!) then you have to use the dose of pred you need I think. I am still IRO 15mg - I had managed back down to 12mg and it seemed OK until I made the mistake of starting a statin to please my cardiologist and it's all gone pear-shaped again. It is getting better without the statin though.
I'm not pain-free, I have myofascial pain syndrome too and it is really kicking, especially the sacroiliac bit, but I can function pretty well. What sort of self-employed work do you do?
I run a small bedroom christian retreat house so do all room cleaning, bed changing, washing, ironing and cooking. We are in a small village so no laundry and with covid and low income not enough money to employ someone to help atm as the way you employ someone in Spain is very costly as you have to pay full social security for them even if they only work a few hours. It also means getting up early to make breakfasts. I do get an afternoon siesta which helps but the job as a whole is quite physical. I feel better knowing someone else is in the 15mg region because it feels as though I should be on much less after 2.5 years although consultant did say she didnt see PMR disappearing anytime soon and is just aiming for lowest I can manage.
Hats off to you Pawscat - there’s no way I could manage what you do. Take care not to overdo it though - hope it proves possible to get some help soon x
Much the same here in Italy - I actually gave up my translation business when I realised it was costing me more than I was earning though I did cheat a bit - still did the translation for a time in OH's name as he was earning more than he was paying out!
I've had PMR for 16+ years, been on pred for over 12 - I have been below 5mg once but then had a full-blown relapse I assume that is behaving much the same as the first episode did. I had to be able to function as a sole carer - though I did only the minimum, far less than you do - so I took what I needed. I'm now on my own here - I still have to be able to function.
Is breakfast complex? Always feel there is a lot to be said for French and (proper) Italian breakfast! All you need is good coffee and a good baker 
Hahaha no not complex as yes good bakery but need to function and attend morning prayer 😀
Does that mean you are finding mornings difficult? When do you take your pred?
Yes difficult to get going as stiff on getting up. taking pred in morning as in pain at 7pm so stopped taking it in the night as it wasnt lasting the work day but its still not
If the antiinflammatory effect isn't lasting the full 24 hours it won't do so whatever time you take it. What you CAN do is split the dose so that you take about 2/3 in the morning with breakfast and the rest later enough in the day to extend the dose overnight so the morning is OK, You may need to experiment a bit to find the best mix for you - but the earlier you can take both doses in the day, the better you are likely to sleep - also important.
Thank you I will try this. I will add in 5mg to get to 20 for 5 days as well and see if it helps.
I'd do one at a time - then you know which is doing what.
I have now done 5 days at 17.5mg of pred first thing in a morning & have massive improvement, very little stiffness on waking and no 7pm pain. What would you suggest I do now? go back to 15mg or continue? I also have hip bursitis and 2 bulging discs caused consultant thinks, by not being diagnosed for 2.5 years and walking very badly to help with the hip pain. I have learnt to differentiate the pain now although with higher steroids the bursitis improves too.
The bursitis is probably part of the PMR - can be. So either needs some targeted treatment or more pred for a bit longer. I'm inclined to wonder if the 15mg is enough but I would get really stable at 17.5mg first before going anywhere and then try the 15mg again and see what happens,
Just wondering: if you have christian contacts, would you be able to get short-term help on an au pair basis?
If you mean getting someone from the UK, Brexit changed all that. The visa requirements are very complex now.
The problem with that is it takes a room that we rent out and we only have 6 and they would have to live in Europe as BREXIT screwed anything else. But Thank you.
That’s a blow!! Good idea otherwise….x
Shame. Brexit. Hm. Maybe asking for a camping au pair would be a bit much!
Okay, I’m chasing shadows a bit here - but might there be a local person who could help a bit, in exchange for say, language lessons / English conversation?? Kind of a local au pair? Hope that’s not subject to regulation too! Just a thought……Take care of yourself 🤗x
Well, at the very least, you can see how concerned we are for you, having such a physical job with such a debilitating disease!
I really thank you all so much. I feel better knowing I am not so isolated. I am going to try increasing my dose and see what happens.
Is there any chance of asking the occupants to do their own bed-changing and making-up when they arrive? As long as they have clean bedding they should be capable of changing sheets, surely? That would be one very physical thing you could ditch.
Yes for a super king size bed it is very physical. I will think on this idea at least for some of our younger guests. Many are over 65 and probably would struggle with this but the younger ones would be fine. I am realising I have to think out of the box.
If over 65s struggle, remember, so do you.
If you have youngsters there at the same time as the elderly, it is a very charitable thing for them to help the older folks to make up and strip their beds. Think of it as an example of Christian living...
You really are between a rock and a hard place! I hope that suggested med adjustments help you as well as keeping up the siestas.May I ask in which area of Spain you are-just for interest?
We are in La Hoya Near Elche Alicante region. Can always privately send link to us if anyone wants it. I am sure I cant put it here.
Aah. Not looking for a break, Pawscat, as much as I'd like one. I have family in Spain and my daughter-in-law may have known someone who could possibly give you a hand if you were in her area. As it is you are about four hours away!! I knew it would be a LONG shot but thought I would ask as you never know. x
You have been taking your pred at night. What time? Initially I found pred lasted all 24 hours, but after several years at a low dose I had a really bad flare, basically back to the beginnning I'd say, looking back on last year! And for the first time even a greatly increased dose didn't seem to last through the whole day. But one thing I tried, after finding splitting the dose was a bit confusing for me and not really working, was to set an alarm for 2 a.m. and take full dose then. I had everything ready (pred in a little medicine cup, a bit of plain yoghurt in a cup with a spoon, and a glass of water) so it was just a quick thing, didn't have to think, or even turn on a light because I could manage with the ambient light in the room, and straight back to bed. Thought it would be hard to get back to sleep, but in fact it seldom was. I'd go right back to sleep. And the nice thing was I'd wake up feeling really well for a change, and still feel pretty good in the evening.
I am going to try this after upping pred for five days first. I used to take it at 2/ 3 am but stopped when it wasn't lasting the day as I thought probably wrongly that I needed it to work for all my awake hours so needed to take it in those awake hours.. I need to go back to it eventually as it did work for me before Covid.
Dear Pawscat,
We all feel for you so much as you can see from all of our concerned replies! I would agree with those who say to up your dose until you are more functional. Also try splitting the dose as others have suggested. Having had Covid will have set you back majorly you may be expereincing Long Covid too and not know where one set of sypmtoms start and the other finishes? PMR is always in charge and will take its own time no matter how much we want to wave it goodbye! I run a Holiday Cottage here in Tasmania and know full well the work involved in getting it ready, sparkling clean for the next guests and you have six rooms to do! Take Care and I will keep you in my prayers.
Thank you xx
I was wondering if you are taking supplements? Not sure whether you can do that on MTX ?? Im on prednisone 5mg and my GP has given me supplements to help it along. I ve been on 5mg for over 6 months and still some pain but would like to be able to come off. I told GP maybe ok to have a little pain and better come off prednisone. GP said no he said its important the CRP and ESR should be within acceptable range. So bit of a struggle. Its not easy but we keep going and this group is amazing a generous pool of care and knowledge. So thankful.
I was taken off MTX as it really didnt agree with me. I take calcium, Vit D and Tumeric with black pepper supplements and was taking folic acid while on MTX. I have gone up on pred more for 5 days to see if it helps.
Just wondering if there are any updates ?
Hi there I am still on the same journey and never get below 10mg prednisone. Had loads of other tests to confirm diagnosis and result is according to 2 Rhematologists now ' complex PMR' We have added in hydroxychloroquine to see if it makes a difference to get prednisone down and I did get down to 10mg but currently back up at 13.75mg after another flare after covid again. Had to go back to 20mg for 2 weeks first and then down to 12.5 mg. It was too low so upped just a bit. I will stay here for a while and try again at some point. Its been a long slog but this forum is invaluable for help. Thank you for asking.
Good morning, thanks for the reply.
I started my journey around the same time and was wondering how yo have been managing.
I am now on my second Rheumatologist. She just asked me to take Hydroxy but was told at the pharmacy that because I am allergic to sulpha drugs shouldn't take it!
So have been tapering to 7.5 mg but haven't been feeling great and now that she wants a monthly blood test found that my inflammation is high again so the last couple of days I went back to 12mg. Will stay here for a couple of weeks and see. so yes the up and down roller coaster as it seems.
Frustrated like everyone because I have put on a ton of weight and other side effects. Now on a bone drug which I wasnt before and my Vit D was low. Apparently pred can do that. Keep us posted and enjoy your week. Laurie
You too. Hydroxy can cause serious eye problems too so I have to have 6 monthly eye scans as well but so far no side effects. Which bone drug are you on? I have to take weekly dose of Alendronic acid and twice monthly Hidroferol which is vit D. We have had to reduce calcium drugs to weekly not daily as my tests show too much in blood now. I have gained weight too. Its not pleasant at all on this journey.
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