how to attribute pain to correct source

[Azalea2009]

When suffering chronic pain from a number of sources (osteoarthritis in most joints, various foot problems, possible long term after effects of radiotherapy, most recently sciatica), how does one know which originate in PMR flare ups that would benefit from an increased dose of Prednisolone (currently 2mg per day) and which have other causes that would not?

[PMRpro Ambassador]

If we knew that ... I'm afraid it tends to be a case of suck it and see! It is important to be aware of your body, your PMR and how you respond to pred. A diary may be helpful with weather, food and activities included. Because all of them can have an effect.

I have problems with myoascial pain syndrome which leads to back muscle tightness and pain. It is related to the PMR and a flare of PMR will make it worse. But it doesn't respond that well to more oral pred - it likes more targeted treatment, injections, physical therapies which can include massage and Bowen therapy and the like if you can access a good therapist.

I think there is a place for the flare protocol if you aren't sure - add 5mg for up to 2 weeks max and see if that helps. You may be able to go back to the dose you started at or you may need to go a bit higher than that. But no-one will be able to say for definite in advance.

[Azalea2009 in reply to PMRpro]

Thank you - really helpful

[arvine in reply to PMRpro]

I have increased from 3 1/2 to 4 mgs for 3 days now, for chrinic pain unlike initial pain whrn diagnosed 8 yrs ago, all joints were hurting srvetely 3 days ago , still hurting but seems little less now, my rheumy told me few mos ago didnt think had pmr any more but arthritis( as exrayed showed) but he added “ of course pred would help , it s a painkiller) ? I have virtual appt with him at 11:30 this morning , and will let him know how much pain was having extra strength tylenol for arthritis didnt help, dont know what his response will be, have to say I feel he has not been that helpful over last few yrs, basically requests bloodwork and prescribes prednisone, every 3-6 mos have talked to him, 2nd rheumy Ive had, so will see what he has to say, I plan to stay at this level for only a week

[PMRpro Ambassador in reply to arvine]

It isn't a painkiller - it is the best antiinflammatory there is. If the pain is less, then it is because inflammation is less. So the question is why there is inflammation - and you can have both things.

[arvine in reply to PMRpro]

Yes well I ll have some questions for him

[Bcol]

I've not found that too much of a problem as my OA responds to Co-Codamol, my sciatica when it hits responds to absolutely nothing which is a bit of a pain in all meanings of the word. PMR only responds to Pred. (not sure what I was doing earlier as just noticed I left off the last sentence!!).

[Azalea2009 in reply to Bcol]

Thank you, interesting…I’ve been advised by GP physiotherapist to take maximum dose of cocodamol plus Nefopam, which was prescribed a while ago for calcific tendonitis. Incidentally, why has no one heard of the latter (non medical people) if it’s, as claimed, suitable for long term use and non addictive? I understand the principle of how it works, but again, no idea if it does anything much. But I take it on the basis of why not? Maybe it helps. The sciatica seems to be very slowly receding. Had forgotten how much agony it is, reminds me of being in labour and that was 47 years ago, where there is the nonsensical urge to try to outrun it….anyway, I’m rambling, sorry. I guess it’s just a matter of trying to work out what works best. Doesn’t help that the rheumatologist couldn’t decide if I had PMR or not, and settled on “atypical”, starting on a dose of 10 mg, which everyone seems to agree isn’t sufficient to start. It did work to a degree, but as soon as I reduced, the pain came back.

I could ramble on, but that’s enough and thanks for your patience in reading this!

[Bcol in reply to Azalea2009]

Hi, and no problem. I can understand the Co-Codamol for your OA but not really that or Neofam for the others. It will have no effect on PMR and neither is likely to have much effect on Neuropathic pain. Neofam is not recommended to be routinely prescribed in the UK either, which is maybe why we haven't heard much about it.

[PMRpro Ambassador in reply to Bcol]

nhs.uk/medicines/nefopam/

It is used but probably not the one most GPs think of when the usual suspects aren't effective. They tend to head for Naproxen

[Bcol in reply to PMRpro]

I was just going on what was below. Apparently it's also very expensive!!

"JAPC has classified nefopam as Do Not Prescribe (DNP) – not routinely recommended or commissioned. Patients already on treatment should be able to continue treatment until their next medication review where their NHS clinician might consider it appropriate to switch or stop treatment."

[PMRpro Ambassador in reply to Bcol]

Seems fair - most non-routinely used things in the NHS costalotto! Bulk buying is what keeps prices down.

[Azalea2009 in reply to Bcol]

Very interesting. Just to give the provenance of my being prescribed Nefopam, it was when I had excruciating pain in my shoulder and a scan showed calcific tendonitis. The rheumatologist decided that I probably didn’t have PMR (even though he had also suggested Methotrexate) and advised to reduce Prednisolone to zero fairly quickly. By this point, completely disillusioned with all the contradictory diagnoses and very infrequent appointments to monitor, I gave up on them. I phoned GP to ask if they had received anything for my record from the hospital and, not surprisingly, they hadn’t. The shoulder pain was excruciating, and I had a telephone appointment with a GP, told her the whole frustrating saga, she went off to phone a consultant (no idea who) and came back to say she’d sent a prescription to pharmacy, which was Nefopam.

[Estellemac in reply to Bcol]

My sciatica ( trapped nerve pain??) responds great to Gabapentin but got to ease it in to the system slowly to suit your body.

[MrsMarigold]

I am recently asking myself the same questions as I have lupus and now other chronic conditions. Pain is debilitating to mind and body. I do some organic things;food and exercise. But since I may be facing a 3rd surgery in 2 years I’ve “layered”

My pain meds from mild to strong. I start mild. As I go up I can usually sort it. Best to yo. MM

[Azalea2009 in reply to MrsMarigold]

Thank you - I empathise!

[DorsetLady PMRGCAuk volunteer]

Usual advice, which is a bit basic is that if painkillers help it’s unlikely to be PMR . However, if they don’t do anything at all, then it’s most likely PMR.

I think most people can differentiate between PMR and other health issues - especially when they’ve had both for a few years.

[Pixix]

I suffer from Polymyalgia Rheumatica, Fibromyalgia, Raynauds Syndrome, Osteoarthritis, Hypermobility, Essential Tremor, Vertigo, Trochanteric Bursitis, Haemangioma - spinal, Asthma, Sciatica, Orthostatic Hypertension, Blepharitis & macular Degeneration. It’s hard to differentiate pain from one item to another (naturally it all cause pain, but I just cut & paste the list these days..don’t remember them all. I think back to what we’re the initial problems, eg my shoulder pains were a symptom of PMR & hadn’t had it with fibro. My hip pains are bursitis, not PMR. I find it easy to differentiate that way. Also, my painkillers don’t help the PMR at all.

[lkcreedon in reply to Pixix]

Goodness you have so much to deal with. You seem to have a good handle on them all. Take good care xx

[Pixix in reply to lkcreedon]

Wish I had!! It’s all causing many issues & difficulties, tbh. But no choice but just to blunder on, & hope there won’t be more new ones this autumn/winter!

[lkcreedon in reply to Pixix]

Yes blunder on I'd say and hope for nothing new xx

[Azalea2009 in reply to Pixix]

Thank you - interesting and useful. I think my problem is that different painkillers work on or don’t work on different sources of pain. When one source is excruciating, ie sciatica, adjusting prednisolone to right level for PMR pain is impossible to ascertain impact, because it’s completely eclipsed by the overriding pain.

[random901]

Hi Azalea2009. I have difficulty deciding which of GCA, PMR and fibromyalgia is causing pain and discomfort at times. Sometimes painkillers can dampen things down, sometimes not. Keeping a very brief log book has helped, however, especially when I've experienced a flare and upped the pred temporarily. Best wishes.

[Azalea2009 in reply to random901]

Thank you, that’s very helpful. I must start keeping a record.

[Pixix]

hm…I guess I was ‘lucky’ because the shoulder pains & the chest pains & the pouring sweats were all new to me when I got PMR. So I know that if any of them rear it’s ugly head, it’s a flare, or it’s PMR. I already had bad fatigue from fibro & hypermobility, & I already had OA in thumbs, wrists, toes, hips, so ‘knew’ those pains. I do get beaten down by the fact that, even though I’m on maximum dose of tramadol, & nearly at top level of the pain patches, I’m still in pain quite a lot. But it’s the bursitis & the sciatica that those painkillers don’t seem to help. And dislocating joints cause pain, etc etc. I think if you write down the symptoms you had that were purely PMR, a bit like my three examples above, & then keep a record of what happens, you may get a clearer picture! Good luck! S x

[Zebedee44]

I so wish it was easier to tell them apart. The pain I have suffered in my lower back and buttock this last year is very different from my PMR pain and does not respond to an increased dose of pred. I wish it did, and that an increased dose would help. I have managed to slowly taper to 3.5 and and even 3mg (2/7 days) and treat any additional pain with paracetomol and less frequently cocodamol. Finding now that I have gluteal tendinopathy and not sciatica I am seriously considering accepting the GPs offer of something more powerful but having gone through a number of pain relief drugs before correct diagnosis of my PMR I’m not keen to be back there. I wanted to be rid of daily meds this year, no chance!

[Azalea2009 in reply to Zebedee44]

I empathise…it’s dispiriting, isn’t it, when you have a plan to manage various conditions, linked to steady reduction in various medications. With advice from people here, I slowed down the pace of reducing Prednisolone and it went smoothly, until I went to alternating 0 and 1. Fairly quickly, all my oa pains worsened, but I knew osteo arthritis isn’t responsive to pred, so thought that can’t be it…back to 1 mg daily which I’ve remained at for a few weeks. Then sciatica came rampaging in. Nerve pain medication makes me feel drunk and GP physio recommended maximum dose cocodamol, which, again, I gather doesn’t work with sciatica, though it does seem to take the edge off it. Just going in circles really…

[Zebedee44]

I have put myself back on amitryptaline which the doctor offered me some months ago but it seemed to cause cystitis after a short while. Since my physio appt on Tuesday my hip has been hurting far more but my sleep is better and I feel generally calmer. But that’s MORE pills! I feel like a cocktail shaker sometimes.