Off Pred

[palewolf]

I have been off Pred since December and for couple of weeks I felt fine. I did notice my hip started to ache but that was something I had before PMR so just put it down to old age and arthritis. Over the last few weeks I have been getting pain in my shoulders esp left side and my hip has got worse. It's nothing like the pain I had at the beginning of PMR and it doesn't stop me from doing normal things, although walking up stairs is uncomfortable in my hip. Last week I had bloods done - (ESR 9, CRP 4). I told GP about my aches and pains but she said that my markers were low so no need to resume steroids. The pain is worse in the morning and it does improve as the day goes on, but never totally goes, esp my hip.

I don't want to go back on Pred if it's not necessary, but I don't want to wait in case it flares up even more and I have to start at a higher dose than I would need now. I really would like your advice - do I hang on a bit and see what happens or do you think I should act now, and if so what dose should I take. I notice that GP has taken Pred off my list of medications that I can order on line so she obviously thinks I'm over it.

[123-go]

Hi, palewolf. The first thing to acknowledge is that people with PMR do not get 'over it', they go into remission and it's perfectly possible for symptoms to return which may be true in your case. The hip pain may we'll be due to arthritis but the shoulder pain is typical of PMR. If over the counter pain killers don't give relief I would advise you to return to your GP. I hope you get to the bottom of things soon.

[palewolf in reply to 123-go]

Thank you

[DorsetLady PMRGCAuk volunteer]

It us quite normal for you to feel pains post Pred, and most are probably due to other things, arthritis is certainly a contender.

It surprises some how just a small amount of Pred masks pain whether that be PMR or usual age related issues.

I notice your original issues started with hip/leg pain, but on different side of body....can you recall if pain feel the same. Long time ago I know!

To me, your pains now do sound like arthritis (ditto!), but having started my GCA with shoulders very similar to yours I am slightly concerned.

It might be worth running the following suggestion past your GP -

Try painkillers for a week - and monitor results.

If you still have Pred - try them them following week - and compare. Say 5mg - high enough to catch any residual inflammation from PMR, but not too high to cover OA.

You would then have results to discuss with GP.

[palewolf in reply to DorsetLady]

Hi there,

Thanks for replying.

The pain in my hip is at the same side as originally (right side). My shoulder pain is worse on the left side as before. Sorry if I didn't explain myself properly. Before I was diagnosed my right hip would keep me awake at night with quite bad pain, and this went on for a couple of years on and off (mostly on) prior to diagnosis.

Then in Feb/March 2019 my left shoulder became painful, followed by right shoulder a few weeks after. I eventually saw my GP in April when I was diagnosed with PMR. The pain I am feeling in my hip now is very similar to before, so I am thinking it is probably arthritis. My shoulder pains are much milder than they were in 2019 and I am able to move my arms freely up and down with minimal discomfort once morning stiffness has worn off.

To be honest I don't really need painkillers at the moment, the pain is not that bad, so I will carry on for a while and see what happens.

[DorsetLady PMRGCAuk volunteer in reply to palewolf]

You may not need painkillers, but my suggestion was mainly for you to try and decide whether it was OA or a recurrence of your PMRBut as PMRpro suggests try the Pred if YOU think it is PMR.

[palewolf in reply to DorsetLady]

The trouble is, I don't really know if it is or not. Pain killers never really made much difference to my original hip pain but I've taken so many over the years (migraine sufferer for 30 odd years) that I am probably immune!

[DorsetLady PMRGCAuk volunteer in reply to palewolf]

That doesn’t help for sure. So give the Pred a whirl, and see what happens!

[PMRpro Ambassador]

That is a typical time lag for the return of symptoms when the underlying autoimmune cause of PMR symptoms is still active but at a very low level. It is not uncommon for someone to be fine on 2mg pred or even less (even 1/2mg) but when they stop pred altogether the symptoms start to appear after a few weeks and if not dealt with will build up until you are as bad as at the start. Professor Dasgupta told us in a webinar a few months ago he keeps patients on 2-3mg pred long term as it reduces the risk of relapses.

It is worth remaining at 1mg for a few months, at 1/2mg for several months and then treat zero as a "new dose", reducing really slowly using one of our tapered reduction approaches and see how you get on before stopping altogether,

Your blood markers may not rise until your symptoms are much worse - they need enough inflammation to trigger the liver to produce the proteins that create those markers and that is why symptoms always trump markers. I do hope your GP is willing to consider that. DL's suggestion of trying painkillers and then - if you have some or the GP will allow a trial - a lowish dose of pred and see what the results are. If it is still the PMR - it pays to get in quickly.

[palewolf in reply to PMRpro]

Thank you for your reply.

If I decide to try a low dose, what would you suggest. I was on 1 mg for 2 months and then 1/2 mg for 6 weeks and during that time I was pain free. Perhaps I should have stayed on 1/2 for another month.

Would 1mg be enough or do you think I need a higher dose initially to zap the inflammation. I have a stash of Pred so that's not a problem and to be honest I have managed my tapering with the help of you lot without the (sometimes ignorant) advice of the GP.

[PMRpro Ambassador in reply to palewolf]

If it were flare we'd probably say take 5mg for a week and then drop back to just above the dose where the flare occured - 1/2mg in your case. And I know she'll try to make out that is such a low dose it can't be doing anything - and I equally know, she is wrong if she thinks that!!

[palewolf in reply to PMRpro]

Thanks PMRpro,

I'll give it another couple of days and if the pain doesn't improve I'll follow your advice , and I suppose I'll have to tell my GP even though she will probably disagree with me.

[Arflane97G]

Like you I stopped taking pred in December and I am definitely more aware of aches and pains in my body- my arthritic hips especially and an ache in my left shoulder which physio thinks is a rotator cuff strain and is nothing like PMR. generally warm baths, gentle walks and yoga really help - am regarding this a convalescent period. Best wishes

[palewolf in reply to Arflane97G]

Hi there, that's very interesting, it sounds like me! I used to do yoga many years ago, maybe I should take it up again. Hope you continue to get better. Take care.

[Arflane97G in reply to palewolf]

I do hatha and yin yoga 4 x a week but I did have a 90 min one to one session with my yoga teacher post diagnosis before I re-started (pre lockdown) . Yin yoga I find both relaxing and energising

[HeronNS]

If the symptoms are very much like what you experienced at the beginning of the PMR adventure I think you should do what you can to deal with them. This is why: I was at zero for a few weeks last year after an extremely slow taper using zero as new dose at the end (took a year to taper from 2 mg to zero). Increasing pain after a few weeks at zero, so I started pred again, settling at 2. After bloodwork done a bit later my CRP was up (but it had been a year since last tests) and doctor actually recommended I increase pred slightly. I resisted as at the time I had only what I perceived as OA aches and pains which responded even to tylenol! Time elapsed. Subsequent tests showed CRP rising, and I decided after all to go to 3 mg. A few more months, back at 2 mg, and CRP at highest level ever, even before original PMR diagnosis. Still thinking it's OA with the addition of dealing with knee injury which involved lots of localized inflammation. Then one day I realized that over time these aches and pains had slowly built up until I was nearly at the stage I'd been several years ago with undiagnosed PMR when I'd lived some time with pain in pelvic girdle, but the thing which made me head off to the doctor in tears was my neck and shoulders. Same pain again. Took 10 mg pred and within 48 hours nearly back to normal. The localized OA hasn't gone away even at that dose but the more diffuse pain of PMR has completely resolved. My current doctor has told me to take as much pred as I need to control PMR symptoms and not to worry about adrenal function (although of course I do). Currently working my way down to 7 but monitoring symptoms very closely.

[palewolf in reply to HeronNS]

It is so hard isn't it to try and differentiate between what is OA and what is not. I have always had lower back, hip and neck problems ever since I fell down the stairs at work 20 years ago. The pain with PMR is different especially with regard to shoulder pain.

You say your CRP was up and continued to rise. Mine was taken 10 days ago and it was the lowest it has ever been at 4 and ESR had come down from 22 in June and 16 in November to 9. (My ESR at onset was only 25 and CRP 89).

My shoulder pain is mild at the moment. My hip can be quite bad but I think that is deffinitely OA. I will hang on a few more days just to see if things change, but if they don't improve or get worse I will not hesitate to start the Pred again.

Hope you get better soon.

[piglette]

Do you think you could get your doctor to check your hip and shoulder or even get an xray for you?

[palewolf in reply to piglette]

It's impossible to get an appointment face to face at the moment. All consultations are by telephone. I haven't seen a doctor for well over a year. The last time I mentioned my hip pain she fobbed me off with "it's probably just arthritis" and all she could offer was physio but it would have to be an on-line appointment, and I couldn't see the point of that.

[PMRpro Ambassador in reply to palewolf]

It really is a piece of nonsense - I see my GP if I need to and am nearly at the end of a 10 session course of hands on rehab physio. If northern Italy can manage it ...

[palewolf in reply to PMRpro]

Goodness you're lucky! My surgery will do some face to face appointments but only at their discretion and only after telephone consultation, and believe me they are as rare as hen's teeth.

[PMRpro Ambassador in reply to palewolf]

She even does house visits if needed! Single handed practice (most are here), no nurse on site or receptionist - the nurses have their own office and go round to patients as required or you go to the hospital for bloods to be taken or physio or the like. Dentists worked all through lockdown too - first month emergencies only then back to normal. They don't think it is a big deal - "we always wear PPE anyway and clean the room after each patient". The only difference is that there is only the equipment needed for the current patient, everything else is behind doors.

[piglette in reply to PMRpro]

That is fantastic. I did see the nurse last Friday but had to wait outside in the freezing cold for around fifteen minutes with a load of others while the receptionist took ages on each person and just pratted about. I arrived five minutes early, only to actually see the nurse for my appointment ten minutes late. Luckily they are allowing 20 minutes per person at the moment.

[palewolf in reply to PMRpro]

Ok don't rub it in!

To be honest my dentist is amazing, they only did emergencies for the first couple of months of the first lock down but then more or less back to normal with full PPE and clean and sanitised areas after each patient. He is private though, don't suppose the NHS dentists are as good.

[HeronNS in reply to palewolf]

I've found even with face to face doctors don't touch you any more anyway. I had x-ray ordered after a phone visit, also orthopedic referral (although that was rather lacking in what I'd have thought would be thorough examination also - he checked only to refute my claim I had soft tissue injury but didn't even ask me to walk to check gait, or determine my strength or range of motion or what movements elicit pain. Told me I was doing all the right things - but later I realized he had little idea what I'm doing, he didn't ask). So an x-ray is what will be most useful, at least to start, but make sure you get a copy of the report so you know what docs base their opinion on.

[palewolf in reply to HeronNS]

Thanks Heron I will call my GP and see if I can get an X-ray, but I'll probably wait until I've had my jab.

[piglette in reply to palewolf]

I managed to get a hip xray without seeing my GP. Just a telephone call.