Going downhill or is it winter?

PMR diagnosed Nov. 2014. Initial dose 15mg moved to 30mg before feeling O.K. 18 months later I was down to 9mg, PMR flared, back up to 19mg. Started DSNS at 17mg at 26 months down to 8mg. Thinking of moving to 7mg. Then it started to go wrong again.

Left shoulder continues to hurt upper arm, been like this for a year. Tried Steroid injection & ointment, finally scanned and found to have a torn ligament and a second tear not so bad. I’ve been referred to an Orthopedic surgeon. Dec. 2016 Waiting.

Mid January right shoulder started hurting aligned to left. More like Polymyalgia. At the same time both hands became painful in the mornings, struggled to lift the kettle or open a jam jar. My hips started hurting at the same time and I was walking more like a penguin.

Prednisolone dose down to 8mg on DSNS. So bad on 17th I upped the dose by 2mg helped to ease the pains, but my right shoulder isn’t improving.

In general I’m not tired and seem to feel O.K. But I’m not pushing myself.

Night sweats seem to be a rarity now, though is that the cold weather?

Feeling lost, I know it’s not a race but I’m becoming less fit by the day and not sure what to do.

Am I asking too much? Should I look closer at AA & Omeprazole, I’ve been on them since Nov. 2014. So far the Dr’s have said there’s more to gain. Never had a Dexa Scan.

27 Replies

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  • Hi David,

    Sometimes it gets very demoralising doesn't it? And the extra pain from your shoulder doesn't help, but unfortunately it something lots of us seem to suffer from. Pred won't help that, unless very high dose, I've had AO in my left shoulder all the way through, and only at the beginning was the pain masked by the Pred.

    Many people think AA and a PPI are unnecessary unless you are susceptible to osteoporosis, and as you haven't had a DEXA scan you probably don't know that. Think you should ask doctor for one to be carried out.

    Have your hands improved since upping the Pred? If so, then suggest you stay at that level for a while. Lots find that 10mg is a difficult dose, and some doctors keep their patients at that level for a few months to aid adrenal recovery- some plans recommend a year, although not sure how many actually do that.

    Some find that winter is difficult to reduce as well, I think we all feel a bit sluggish during the colder months, so might be an idea not to taper until the weather gets warmer.

    Once you get back down to 7 or 8mg it might be sensible to reduce by only 0.5mg at a time, that's when your adrenal glands need to kick back in, so can be quite difficult, personally I found from 6 down to 3mg very trying.

    Hope you soon get your shoulder sorted. Take care.

  • DorsetLady Thanks for the advice. I have asked for a Dexa Scan and it was referred to the group Dr by a Locum but presumably not approved/expense Etc. My guess. I could push for it, but I've had two very strong replies to stay on AA by two different Dr's they really believed in AA. My hands are improved, maybe I need just 1mg more. having been below 10 since 24th Nov. Don't feel I want to go back, but pain is a motivator!!

  • No, nobody wants to increase, but if it's by only a mg, and that makes the difference between pain or no pain, then really there's no choice is there? Nobody's going to give you a gold medal for being below 10mg rather than on it or just above.

    I know it's a psychological thing, but as I said earlier it's more difficult during colder months - sometimes you have to listen to your body rather than your mind!

    I took AA for 4 years without any side effects - and once I'd got down to 2mg discussed with GP and he agreed I stop it. Decided that the low dose of Pred and the number of years on AA was sufficient to cover the possibilities of succumbing to osteoporosis. I know lots don't like it, but at the end of the day it's your choice. Might be worth discussing with your orthopaedic surgeon when you get appointment.

  • I think I would push for a Dexascan. When I had one, PMR was listed as a priority for them, although it does vary and I know everyone here has to fight as well. I helped fundraise for the machine so I felt that at least I should be allowed to use it!

    You can have Dexascans done privately for quite a reasonable amount, but I would fight very hard first, particularly as they are giving you AA and you may not need it, which costs money.

  • I live in the USA....recently found that the Dexa was very inexpensive. With Medicare I can only have one every two years. I wasn't happy about that ....wanted one done sooner so offered to do a self pay. The cost was $57.00. Very surprised. I will now ask for pricing when I believe I need a non covered test. Something to think about.

  • Good info I may ask if they resist.

  • I think if you read your post you will get one answer: 9mg is the lowest dose you can get away with and pushing to try to get lower is going to lead to a flare. Many people have found that getting control after a flare is harder. You look from that tiny picture to be a bit larger than me (all 5'1" of me) - it took me over 4 years to get below 9mg and bigger people do tend to need a bit more pred! Also the amount you absorb varies from 50 to 90%. If you are a 50% person you will need a higher dose to get the same effect as someone who absorbs 90%.

    I wouldn't have been impressed by being given an injection without the shoulder having been examined and the need demonstrated. Scan first, treatment on that basis...

    You need a dexascan - and you may not need AA. Omeprazole is only any point if you have stomach problems when taking pred - I have never taken it. And it is as likely if not more likely than pred to lead to osteoporosis.

  • PMRpro thanks for the advice and understanding. I'm 5ft.10" 82 Kl (4kl up on 2yrs ago) I've arrange to speak to a Dr 1.00pm and with your comments and after thinking it through. The order of request is. Blood test, my last in Dec ESR was 2 the lowest it had ever been, norm with Pred. ESR 5. So I was confident to carry on slowly reducing from 9mg. Second to request a DexaScan so I can stop AA & Omeprazole. I have from early on found that I needed to split the days dose at it ran out around 11.00pm I was on 6mg morning & 3mg evening. Yesterday I had 8mg morn. 3mg eve. Awoke 3am shoulders in agony. As though the 3mg were wasted. The 8mg dose this morning 8.00am has only just started to work as at 12.30pm So thinking of going to 10mg Morn. 3mg at night. Or more if I have to.

  • What about doing it the other way round? Take the 8mg in the evening and top it up in the morning. It would be worth experimenting a bit. Many people on the forums wake early and take their dose before settling down for another couple of hours - which should allow the pred to be starting to work by then.

    The body sheds a load of the inflammatory substances about 4.30am, the sooner after that you take your pred the less inflammation has been caused by the time the pred starts to work, it has less to do. The ideal time to take plain pred tablets is 2am - then the blood level is high by the time these substances appear on the scene. But you can get a similar result, especially if pred works slowly for you as it seems to, by taking the pred last thing before you go to bed.

  • I'll try that tomorrow, sounds interesting, not too difficult as I'm up about ever 1.5 hrs during the night. Had a blood test done this afternoon ESR & CRP. Booked a call with my Dr for 30th Jan earliest I could get!!

  • Taking PMRpro's advice. I've tried taking the larger dose of Pred early. 5am then this morning 4.30am. Hands & shoulders fine by 10.30am using 8mg & 3mg early evening. Feel I'd like to try the major dose early/late evening. In a few days time.

    Generally feeling good, which has pleased my wife (& Me)

    After a fall, back in August and extensive testing since then concentrating on my ECG. 1day, 1week and non explicit reactions. I final pushed for a letter. You've got PSVT, a letter is on the way to your Doctor.

    I have no symptoms, but I now know how to react, if I do.

    Talking with my Dr on 30th after blood test 1wk ago. ESR & CRP

    Also I'll ask for a Dexa Scan or how I can pay for it. I'd now like to get off AA & Omeprazole.

    Then to restart the DSNS using 0.5mg steps.

    Thanks so much for all the help and positive assistance.

  • Where do you live? -ish, not the address ;-)

    I have atrial fibrillation - the cardiologist is confident it was caused by the autoimmune part of PMR having damaged the electrical cells in the heart that govern heart rate.

  • West Surrey.

  • We can recommend a superb rheumy in Chertsey if you need one...

    Southampton do dexas privately for £55

    uhs.nhs.uk/OurServices/Musc...

  • Really not sure I do, as for the wait to see him took me 24 weeks and he missed that I had seen him before in the first three months of diagnosis. It wasn't his day, from there it went slightly downhill, especially as I seem to understand more than the average patient, thanks to PMRGCA.uk and contributors like yourself. Any particular reason I should go and see one at this time?

  • Only if your GP isn't being helpful.

  • My GP is as good as you could get, just too many people asking for her. Hard to get an appointment, especially at this time of year. I'll see how I get on, she loves the detail I bring, it helps her to decide.

  • PMRpro

    Just picked this reply up, I presume your referring to Dr Rod Huges, he's our Surrey support Rheumy. A wonderful & extremely dedicated person. Southampton would be easy for me, £55 less than a meal out and I could decide.

    Walked 5 miles in the cold with the ramblers yesterday. Felt a little tired but not too bad.

    Just had my 3rd day in a row medication at 4.00am, an improvement, but hands still a little stiff, but stronger.

    30th Jan review with Dr over the phone. A lot of things to put over. Not long to wait, as I'm feeling a lot better.

    Thanks again for the support.

  • Don't know if this is relevant to your situation but as you may know bone, muscle and joint pain are possible side effects of AA.

  • Thanks, something more to consider

  • So sorry you are having a miserable time. My hands became painful too and I have been given a diagnosis of polymyalgic onset Rheumatoid Arthritis. I also have problems with my right shoulder. Had a scan which showed three snapped tendons and a reticular cuff tear. I think it was caused by how well and energetic I felt on 20mg pred at the beginning. I scrubbed all my decking and patio paving. 😊 The next morning I was in agony. After 2 years I am on 5 mg of pred and hoping to reduce by 1mg a month. Have tried before and failed below the 5 mg. have tried methotrexate and hydroxychloroquine but haven't had any benefit from them. Both gave me stomach problems. I live in hope that I don't have RA and that the PMR will soon go.

  • All sounds very similar, ouch, you have mu sympathy. Great that you've got down to 5mgs, be careful try 0.5mg reduction at most. I've got a telephone conversation at midday today and with all the helpful comments I can discuss a plan to move on.

  • Well it's been a month now and I seem to be going backwards. Having got down to 8mg, a flare (I presume) I've, after lots of assistance raised my Pred. Shoulder pains, just seem to carry on, small improvements are changed within a day and return. More pred. hand pains increase, at times I can't lift the kettle without fearing I'll drop it. More pred. Went for physio on my left shoulder 5 days ago, he showed me how to exercise the muscle without causing pain, felt good that day. Over did it the following day and was in agony for two days. Hands hurting in mornings upped Pred. First day with small improvement having upped an extra 1mg today now on 15mg. Taking tablets in two doses 11mg at 4.30am 4mg at 7.30pm.

    Feeling hot & sweaty though only 6deg C today. Hands just stiff. Really concerned that I've had to go back to 15mg (From 8mg) and still feeling I might have to increase again. Should I have made a bigger jump backwards instead of 1 mg ever two or three days depending how I felt?

    Have a Blood test in a weeks time and telephone review with Dr 6th March a Dexa scan booked for 14th March to see if I can get off AA, this might improve things, but it's a guess.

    May try reversing the dose to heavier in the evening, as the getting up early, doesn't now feel worth it. Though lots of reading achieved, a bonus.

    Getting rather fed up and starting to loose track of things, very grumpy and not worth being around at times.

  • Was going to reply to this and then got waylaid. No words of wisdom really just to say understand the frustration of having to go right back up on steroids again after, from your point of view , reaching quite a low dose. Hope you telephone review goes well and your dexa scan, which is essential I feel. Let us know how you get on.

  • Jackoh Thanks for taking the trouble to write, up another mg now at 16mg. Yesterdays pruning might not have helped. This is the second flare I've had to go back up. The first time I though I was reducing slowly, the second I was on the DSNS but on 1mg reductions. This time once I've settled I'll have to rethink when I start 1/2mg perhaps at 12mg. Hoping to come off AA & Omeprazole, this maybe be adding to the pains. Onwards and downwards or is it upwards. !!

  • I'd suggest finding someone to help with the pruning while you supervise! It used to kill my hands and biceps/shoulders. That was in the days of "PMR no pred" - but I can still remember the days of pain after setting out to do just one rose!

  • It's really odd, last night I was in a fair amount of pain in my hands & shoulders. Took my tabs 11mg at 4.30am. Decided that I would increase another 1mg today so this evenings dose would have been 5mg. But feeling good most of the day so I cut back to 4mg making it 15 like yesterday. Hoping this is the settling amount before I start again with DSNS. Apart from the pain I feel good though that maybe the increase of Preds, over the last two weeks. Fingers crossed.

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