Advice/opinions please

[York54]

I have been on 6mg of pred for ages now plus 200mg Hydroxychloroquine, going along quite nicely and have had a great summer, feeling pain free and energised. A few busy weeks in July, people to stay, visiting relatives etc but felt just tired. About 6 weeks ago I was sat watching Tvand reached/stretched over the arm of the sofa to pick something off the floor. I felt almost like a twang!! As if I'd pinged a muscle. Of course after a day or so I was really sore and it was painful , I took paracetamol , which helped a bit. It disturbed my sleep, hurt to turn over , sit up etc. It eventually wore off to be replaced by pain across my whole back and up my neck. This has now gone behind my right shoulder blade and remains up my neck. I wake up in the morning feeling like an old crock!! The sweating has begun and starting to feel fatigue. Do you think a flare is on the way, should I up my pred to 8mg. Painkillers , hardly touching it now. Also agony to sit and read or use my iPad, neck doesn't like it at all! We are off to Rome in September, can't see me managing the walking we anticipated, at this rate. Thanks for any input.👍👍👍👍👍

[SheffieldJane]

Oh what a blow and just before your holiday too. I’d definitely see your doctor for a proper diagnosis. It does sound like something muscular, skeletal has happened and that in itself can trigger a flare, even with well controlled PMR. You probably will end up taking more Pred but it will be useful to know what the source of the problem is. I hope you’ve got time for all this. Otherwise it will be the tour bus for you - an amazing experience

[York54 in reply to SheffieldJane]

Thanks SJ. This blinking illness is just great at hitting back when you think you are doing well. Been here before, got down to 5mg last year. I have found that often if I do too much it rears its ugly head again!!

[SnazzyD]

I don’t have PMR but things that go twang shout acute injury from which you get local inflammation upsetting other structures around setting up a chronic problem that feels wider spread. Usually injuries like this from seemingly innocent movements have often been in the making for a while from some other activity or tension and the final insult is the straw that break the camel’s back. Add in the Pred making muscles more injury prone and it sets the scene. I know that we often say that if Paracetamol doesn’t work then it might be a flare, but in the case of these injuries an anti-inflammatory is usually better because Paracetamol is short lived and doesn’t reduce the pain causing inflammation locally. Yes, it may be a flare too but I’d also try to get it seen by somebody like a physio, a good technical masseur, chiropractor, Bowen therapist, osteopath etc. It’s worth the expense to see Rome! Last time I was there is was staggering about in 40C with hardly any hair and a full, red, shiny Pred face. The view from the top of the Palatine Hill was glorious.

[York54 in reply to SnazzyD]

Thanks Snazzy D. I upped the pred yesterday to 8mg and felt slightly better. We sat and enjoyed the garden yesterday, when reading my book though, my neck is painful. May try the doc this week if it doesn't improve. I can't take ibuprofen as it upsets my tum. I have some cocodomol if I am desperate but only take for sleeping. The gentle physio sounds great.

[HeronNS]

The initial twang may have set off a severe muscle spasm. A good therapist can often relieve this quite quickly and give you some gentle exercises to help keep things in order. Meanwhile try the usual heat or cold (I find warmth works for me) to try to relax the area yourself. The pain may be referred from some other body part, like my hip pain comes from my spine, so that's why seeing an experienced specialist like a physiotherapist is a good idea. I agree with Snazzy, do what you need to in order to get as much out of your trip as you had hoped.

[York54 in reply to HeronNS]

I find standing with my back under the hot shower really soothes it. Woken up again today with searing pain by my right shoulder blade. I have had physio previously at the hospital but that was for my neck and hands. Will try and do a few of those. Thanks for your reply.👍

[PMRpro Ambassador in reply to York54]

If the muscle is in spasm that will have to be eased before physio exercises will work

[HeronNS in reply to York54]

I was already getting physio at the time but one thing which helped the very tight muscles I had in one buttock, the side with the painful hip, was lying all night with a hot water bottle against the afflicted part. To help my spine, which I was unaware was spasmed, the physiotherapist used a technique called dry needling. More recently she's done very targeted deep massage where I develop tension in my neck. This latter seems to help my weak and sometimes painful upper arms/shoulders (not PMR, think these are a pred side effect).

[PMRpro Ambassador in reply to HeronNS]

Basically what works best for me - needling and therapeutic massage!

[suracon]

Sorry - I can't remember taking hydroxychlorquine!

However, reading your message I wonder if you have inadvertantly fractured a disc in your back because about 4 weeks ago woke up with severe pain in my kidney area and pain along the back of my right leg. I was sent to have an xray of my back which showed that I had broken my back! A disc had fracture along the lower half of my spine. I had not fallen or done anything to have caused the break! Being on steroids and also taking Omeprezole could effect the bones.

I have been on steroids now for about 4 years. Brought the dosage right down to 1 mg but had a bad flare up and my Rheumatologist gave me a lecture for having reduced my dosage to that extent even though I explained that I had done it very gradually over several months! I had to up it to 15mg and am now reducing it by 1 mg month by month and have been informed that I would never be on a lower dose than about 2 - 2.5 mg a day! Hope that helps. By the way breaking one's back does not mean that anything can be done about it except taking strong pain killers for the first couple of weeks and keep moving and continue doing the housework -

Let me know your outcome.

[York54 in reply to suracon]

Gosh, I don't think I have broken my back. It feels more like a muscle problem. It is a little better than it was, thankyou for your reply.

[suracon in reply to York54]

Yes, well mine felt like a muscle or kidney problem - so you never know!!