PMR pain or arthritis?

[MiloCollie]

I’ve been reAding on here for long enough I should know this!!

Recent background -June 22 terrible pelvic girdle and lower back pain. X-ray =mild OA hips and back. Only a little relief on strong cocodamol which made me nauseous. I cried at the rheumy nurse who suggested GP and work my way through different pain killers. I didn’t have chance to do that because….

I then got covid in July and did sick day rules and increased my pred from 6,5mg to 10mg but only for a few days because of the insomnia from it ( I actually wasn’t that poorly with the covid) However my hips and back improved massively and have been loads better UNTIL LAST WEEK.

I had horrendous plantar fasciitis all sep and oct that has now turned into arthritis and my knees hurt a lot. I did 4.5mg pred all December and have just dropped to 4mg but wonder if I’m doing the right thing! So fed up with it. Any ideas?

One day last week I was going out for the day so did an 800mg flood of ibuprofen AND some strong cocodamol but it only helped a little and I can’t do that everyday!!

[PMRpro Ambassador]

I think you have overshot the dose of pred you need - the result following SDR suggests that doesn't it? Once PMR inflammation starts to build up it can have lots of effects.

You say pelvic pain - where? I have sacroiliac joint pain, it's been bad all summer and I know it has been contributing to other PMR-related problems. I'm under the pain clinic - she says regular NSAID doses and the difference is noticeable. I'd have preferred a steroid injection in the SI joint - she won't because I'm on anticoagulant therapy. My rheumy possibly will when I see him in February. Getting the balance is hard but if more pred helps - more pred may well be what you need.

[MiloCollie in reply to PMRpro]

Thanks PMR pro. I’ve done 4.5 all of December and just dropped to 4. Do you think I should go back to 5 and see how I am after a week?

I have a big expensive holiday on Feb 7th in Zanzibar. With lots of steps and a 7km white beach I can’t be like this!!!

[DorsetLady PMRGCAuk volunteer in reply to MiloCollie]

Personally, I wouldn’t have dropped until after holiday…

[MiloCollie in reply to DorsetLady]

hindsight eh?

[DorsetLady PMRGCAuk volunteer in reply to MiloCollie]

No not necessary, it was a decision I made on more than one occasion during my GCA years - sometimes for good times, but also for one not so good.

[PMRpro Ambassador in reply to MiloCollie]

No - like DL, I wouldn't have dropped until that lovely holiday was done and dusted. Is 5mg enough to make you feel better? Life's too short to waste with not taking enough pred.

[MiloCollie]

I know! It’s not come on since I dropped to 4mg it started before that. I don’t know if 5 will be enough you’re right. Shall I try?

[PMRpro Ambassador in reply to MiloCollie]

Until you try you don't know ...

[MiloCollie]

I’m worried also because I’m going to be looking after my great nieces age 2 and 4 about once a fortnight from mid Jan. I’ll die!!

[PMRpro Ambassador in reply to MiloCollie]

Then why did you offer?

[MiloCollie in reply to PMRpro]

I was asked as she had no one else since her mum (my sister) died. I’ll be ok.

[PMRpro Ambassador in reply to MiloCollie]

Ok, fair enough. But do be sure you are up to it - from a safety point of view too.

[MiloCollie]

I have had some relief from 15/500 cocodamol in the last hour or so but not enough to write home about. I’m going back to 5 mg tomorrow morning and see how I am after a week. Thanks

[PMRpro Ambassador in reply to MiloCollie]

Any chance of the GP coughing up some 30/500? My daughter swears by it.

[MiloCollie in reply to PMRpro]

I had that earlier in the year. It makes me quite nauseous and constipated. I’m going to ask for something different to try. Thanks x

[PMRpro Ambassador in reply to MiloCollie]

I can't take codeine - and it bungs up most people! But as Bee says - better off with more pred which works than other stuff that doesn't - which possibly confirms it is PMR rather than anything else.

[Blearyeyed]

If the relief has only been marginal on other pain killers I think you are probably better off increasing , and probably trying sick Day rules again for the 10-14 days but staying below 10 mg if you suffer badly with insomnia then just reduce the dose to 6/7 mg.Everything is clearly flaring up and as you haven't had chance to trial out new pain killers for the OA and other pain issues you'd be better off working with what you have the steroids. It wouldn't be the advice from the Rheumy who'd want you off steroids whatever the cost , or always be what would be advised on the forum but your are going from a flare into a holiday situation which could cause it's own symptoms so Preventative measures may be the only option .

If you do this and allow yourself time to recover , and don't push to taper again until after your holiday you will have the chance to enjoy it.

Half measures are only likely to give half relief and a gnawing worry at the back of your mind for the next month that you won't be able to enjoy your holiday. If the pain settles to a managed level in the next few weeks , instead of tapering you could try some gently paced walking to help your muscles and joints strengthen to cope with travel and sightseeing.

It will also allow you to slowly pack and prepare for a few weeks before the holiday.

You can always start the taper again a week after the holiday when you have had chance to properly discuss other pain medication and management options with your GP or Rheumy.

[MiloCollie in reply to Blearyeyed]

thanks that’s great advice. I really don’t want to increase but I’ve nursed 80 yr old with better mobility and stamina than me!!😜 I can’t go on like this.

[MiloCollie]

thanks all. I have a plan xx

[Suffererc]

I am in the same position. My GP says arthritis. I would like to try a higher dose of Pred to find out if still PMR. If the higher dose helps its is PMR. Am presently on 1mg but not having any effect. Pain killers aren’t working. Have to wait to speak to GP as she has taken over my care and thinks I have been on Steroids far too long. She must think I enjoy taking them. To me quality of life is precious and wonder what she would do if it were her problem. Blood test tomorrow

[PMRpro Ambassador in reply to Suffererc]

Tell her to tell PMR how long it needs steroids. This idea we LIKE taking pred (or anything else come to that) really is insulting.

[Suffererc in reply to PMRpro]

yes it is insulting. But ultimately they are in charge of prescriptions. I only want to try 5 for a week then drop to 2.5. I was fine up to that point . Want f2f to so she can see the crippling effects too. From feeling normal to being a semi disabled

[MiloCollie in reply to Suffererc]

push for face to face yes. Good luck.

[Suffererc in reply to MiloCollie]

we can have f2f in our surgery. But they seem to telephone first. So either they can’t read the request or they don’t think necessary. 😊

[PMRpro Ambassador in reply to Suffererc]

It's maybe like the 999 calls - a lot of frequent flyers who don't really need a 999 response know the trigger words "difficulty breathing", "central chest pain" and "head injury" to get the ambo they want. Though even that doesn't work at present!

[oscarina in reply to Suffererc]

looking at the larger picture, as some GPs are encouraged to , the patient that is on steroids too long , may develop other more costly conditions to treat or manage, the government would then be paying a good deal more to treat than just stopping steroids and letting the patients quality of life decrease but costing much less long term, cost is a parameter and metric that works behind the scene as a prominent determinant

[PMRpro Ambassador in reply to oscarina]

Pred hasn't caused any conditions that cost the healthcare system - PMR did that and without pred I would have been in a wheelchair so that would have been a bit pricey in care costs.

[MiloCollie in reply to oscarina]

I hear you. I already have costly issues. I’m diabetic. I WANT to get off steroids but I WANT a life without pain.

[tempusfugi]

Am so sorry to hear about your many problems, MiloCollie, but wanted to say, am I missing something here? You say PMR/terrible pelvic girdle and lower back pain started in June 2022, then in July Covid arrived and you increased your Pred from 6.5 to 10mg. So were you being treated for PMR then and, if so, how on earth did you get down to 6.5 in, what looks like, a month?

For me PMR finally diagnosed in April 2022 and I've only just reached 9mg (admittedly I started on a higher dose than usual ie my starting dose was 25mg and I've had to go up to 10mg recently, because after tapering to 8mg) PMR wasn't having any of it)!

I really hope you can get a f-2-f appointment but, if anything like most of the UK, doctors are gold dust in here in Norfolk, so I do wonder. I do hope things improve for you soon, nevertheless.

[pata63 in reply to tempusfugi]

I have another "am I missing something here?" going on.

I see MiloCollie write things like "dropped from 4.5 to 4". Do you taper slowly? Or are you saying you are on steady 4.5 for some weeks and then one day you change the dose to 4 and carry on with 4? The wise ones on here didn't seem to comment on those uses of "dopped" but they made me wonder.

My experience is having undiagnosed PMR for about 9 months which isn't bad in the full distribution of months to diagnosis. During that time I was complaining of various pains and had ultrasounds and a CT scan, MRI and came away with "you have osteo arthritis in your right hip, iliopsoas bursitis, rotator cuff injuries, frozen shoulder" and so on at various visits. What I've learned reading on here is that PMR often seems to be felt in the places you have pre-existing problems. That makes it very hard to say whether any particular pain is PMR or osteo arthritis or something else. The "Does upping my pred dose help? Do ordinary pain medicines work well?" questions seem to help me with deciding on what to try next. Good luck getting a f2f consultation and finding the answers in these troubled times.

[DorsetLady PMRGCAuk volunteer in reply to pata63]

Most don’t need a slow taper, especially at the beginning of treatment, so can stay on a dose for a month, and then drop down overnight to lower dose.

I did that all the way through my GCA from 80mg until I got to 7mg, and then decided it might be wise to use a slower taper.

[PMRpro Ambassador in reply to pata63]

It isn't uncommon for patients to be diagnosed with frozen shoulder, or trochanteric bursitis, or rotator cuff problems and then they are offered a steroid injection for one of them and realise that a lot of other aches and pain have disappeared as a result. It wasn't each individual thing, it was the onset of PMR, And you'd be amazed how many GPs haven't come across iliopsoas bursitis!!!

[pata63 in reply to PMRpro]

In my case I wasn't ever offered a steroid injection. I was having physiotherapy and it was the physio who said "you keep having a mosaic of things get better and worse. When we finish today go home and ring your GP and have him do some blood tests for inflammatory markers". I did. The big reveal only happened when I was started on 20mg oral pred daily for PMR. As you say, a lot of other aches and pains I had been putting up with just disappeared.

[DorsetLady PMRGCAuk volunteer in reply to tempusfugi]

if you look at MiloCollie profile/.bio you see she was diagnosed in April 2021….so didn’t reduce as quickly as you thought…

[tempusfugi in reply to DorsetLady]

Ah! thank you, DorsetLady, I did begin to believe that I must have got it wrong somehow and should have checked MiloCollie's profile/.bio. Makes sense now - I will live and learn before I jump next time!😃

[DorsetLady PMRGCAuk volunteer in reply to tempusfugi]

No worries ….😊

[MiloCollie in reply to DorsetLady]

Thanks DL. I had access probs earlier so couldn’t defend myself😂

[DorsetLady PMRGCAuk volunteer in reply to MiloCollie]

😊

[DorsetLady PMRGCAuk volunteer in reply to MiloCollie]

HU does seem to be having a hiccup -I seem to be getting email notifications twice!

[Jomaur]

Similar problem to yours.Diagnosed with PMR Jan 2021 then fractured my left humerus in 3 places after a nasty fall. Only when doing physio in early 2022 did my lower back begin to hurt and within a couple of months was unable to walk far or stand for long without pain. Raised Prednisolone gradually to 20mg but no improvement.X-rays showed “wear and tear” on my spine. No real advice from GP so tried physiotherapy and chiropractior without any improvement.Saw an orthopaedic consultant privately who suspected spinal stenosis but did not show on MRI and he concluded nothing surgical would help but recommended physio,pilates and if unsuccessful for my GP to refer me to Pain Management Clinic.Have also seen a Rheumatologist who reckoned back and leg pain not caused by PMR and to continue to taper down, I am currently on 6.5mg, but Chronic Pain Syndrome and that I have Myofascial Pain trigger points. He also recommended 2 Paracetomol 3 x daily for 4 weeks but paracetomol has no effect and I cannot taken NSAIDs because of hypertension. CO-codamol makes me feel quite ill and sleepy and does not do much for pain. Am currently waiting to start physio and Pilates at a slow pace with a qualified instructor who lives fairly locally and is confident that she can help me.Hate to say it but GPS although very nice have not really been any help at all with this and I am having to fund it all myself with my husband.