PMR or not?

[vlrdngh]

Hello, I am new to this disease (I think). I have been put on 15mg of Prednisolone a day, still experiencing a bit of soreness, very stiff in the mornings and have some days worse than others. My G.P. has now said that she does not think that I have PMR. I am very confused as I had been back & forward to the doctors many times before being given these steroids and nothing else seemed to even touch the pain. I was given strong paracetamol, ibuprofen, naprosyn, tramadol & amitriptyline & none of these even took the edge off the pain I was in. I could hardly walk, getting in & out of vehicles was a major struggle, couldn’t sleep at night at all. Couldn’t raise my arms to brush my hair in the morning found it very hard to dress myself (pants ) bending raising my legs I think I have PMR I can relate to every ache and pain people in your forum have SO WHAT DO I HAVE ps I am on a12 week waiting list to see a rheumatologist plz help I am 53 female had breast cancer in my 40s ( thought it was my bones to start with ) now I have this

[PMRpro Ambassador]

WHY does your doctor now not think it is PMR?

If it is because of an incomplete response to pred, many people do not achieve 100% freedom from pain ever, and even more so at 15mg. 15mg is at the bottom of the range of the recommended starting doses these days:

rheumatology.org/Portals/0/...

see Recommendation 3.

What you describe is typical - but your GP needs to be sure she has ruled out all the other options she can and the rheumy looks at the rest. Your history of BC must muddy the water a bit as PMR can be the symptoms of some cancers. PMR isn't the disease, it is the name given to a set of symptoms due to an underlying disorder.

Stiffness in the mornings suggests that the antiinflammatory effect of the pred isn't lasting 24 hours for you - and that is common. Splitting the dose can deal with that - as I'm sure you will have heard us talk about. You could try that maybe while you have the chance? And some days being worse than others is also perfectly usual - you have to pace and make lifestyle changes too. If you have a good day and do a bit more, sure as eggs is eggs you will have a bad day next day. Then you will rest and do less - and have a good day the next day.

Where are you? And would a single private consultation be a possibility?

[vlrdngh in reply to PMRpro]

Thanks for your reply initially they thought bone cancer too I’ve had ct scan mri scan all clear except thickening off the lining of my womb (common with long term use off tamoxifen) nothing else showed up. Yes think the gp expected me to be pain free however she did not explain it clearly that all three tabs were to be taken at the one time as a result I took one tab after meals for the first two days!!! Then I called the surgery to be told by the receptionist that they should be taken all together so the first few days were not really zapping it. I am in Edinburgh

[PMRpro Ambassador in reply to vlrdngh]

There is someone else in Edinburgh - they have just been down to Chertsey to consult Dr Hughes there so I suspect they didn't find anyone reliably good locally.

That's good - that was my concern to be honest. Your GP sounds a bit dim - have things improved since you started taking the pred properly? Have you any choice in the practice?

There is a very good Scottish charity with a helpline I can recommend:

pmrandgca.org.uk/

[vlrdngh in reply to PMRpro]

Things seem to go on swings and roundabouts mornings are bad for me to walk and exit and enter a vehicle then by midday I feel mostly ok with a little niggle in the shoulders here and there one thing that’s a lot better at the moment is that I am able to sleep better. I work early mornings and drive for a living and have always survived on approx 4 to 5 hours sleep I thought that this could be exacerbating the situation because I’m awake for a long time during the day but I don’t know. Would you suggest taking two preds am and one early evening ?

[Pmrmolly2018 in reply to vlrdngh]

I to did not respond to morning meds until nearly lunch time..bad pain and unable to manage personal hygiene. All this at 15mg in the morning. Asked for increase which GP gave to 20mg with split dose 50/50 evening and morning. This worked well and now 5 months later down to 13mg at10/3 split dose and taking a pause in taper for a few weeks as have family wedding and Christmas... I have stiffness and some pain and cramps, but life is manageable and I do mostly sleep. Do what YOU feel best for you. I am listening to MY body...also have joined Local PMR support group which has done my confidence the world of good! Good luck...

[vlrdngh in reply to Pmrmolly2018]

Hi thanks for your reply I have got all the paperwork from PMR/GCa and found it all very useful but haven’t joined the support group yet as I feel sort of in limbo I’ve not yet seen the rheumatologist so don’t have proper diagnosis. I think my doctor thinks that justbecause my esr levels and inflammation levels were only slightly raised that I cannot have PMR ( I dontknow if this is possible ) but going by all the info and pain I have I’m 110 percent sure it’s what I have I asked my doctor to up Prednisolone to 20 mgs she said no so today I’ve taken two 5 mg together at 7 am and one 5mg at 1230 and I’ll see how I go

[HeronNS in reply to vlrdngh]

Yes, up to 20% of patients do not have raised inflammation markers at all. Or their normal levels are so low even when raised the doctors still interpret them as normal. Mine were somewhat raised and my first doctor didn't think it was significant. A new doctor told me they were slightly raised and I think would have been of no concern except for my symptoms. My doctor goes by symptoms over test results. The pred trial was a miracle and I've never looked back!

[vlrdngh in reply to HeronNS]

Thank goodness I feel

Like such a fake also I’m terrified that when I see the rhummy he says same thing then they stop the steroids and I go right back to being like an invalid

[Pmrmolly2018 in reply to vlrdngh]

I did not have raised inflammation levels either but my GP referred me quickly (private) to a local consultant rheumatologist...he was not very helpful (just another old woman) but he did confirm my ‘atypical’ PMR! He never told me what the ‘atypical’ meant? He also said the standard...2 years duration. It is worth reading DR Kate Gilbert’s book on PMRGCA it answers many questions not least about starting doses which vary from person to person and probably are weight related (a reasonable assumption) I am 5’ 7” and as my brother has always maintained, built for comfort not for speed! Good luck with everything.

[PMRpro Ambassador in reply to Pmrmolly2018]

If you ask me - atypical means it might last less than average. Or longer than average. Or looks nothing like the last patient he saw, or identical to the one before...

i.e, it is a meaningless statement...

[Pmrmolly2018 in reply to PMRpro]

....a very insightful explanation....I have been wondering!?.....

[PMRpro Ambassador in reply to vlrdngh]

I'd think it is certainly worth trying if you have to be able to work in the mornings - I would. If it doesn't help. you haven't lost anything,

About 1 in 5 patients with PMR/GCA don't have significantly raised ESR/CRP, and often while it may be raised for you it isn't above what the average doctor thinks is the normal range. That is a range of levels that covers the entire population - not a single person but they don't seem to understand the concept all too often.

[vlrdngh in reply to PMRpro]

Thank you all for your responses I will let you know in due course how it goes. Best of luck to you all x

[PMRCanada]

I had a very similar experience to you, but started on 20mg prescribed (and diagnosed with PMR) by my GP. Had about 80% relief within a day.

Sent to Rheumy who suspected I had something other than PMR because I am 56, and because as soon as I tapered (on her instruction) I flared. I also struggled with morning soreness and stiffness. Tried taking dose a number of ways, currently shooting for around 2am because the medication takes effect prior to the daily dumping of cykotines into the body (which lead to inflammation). Then I’m virtually pain free until around 9pm. As mentioned already, split dosing may be the answer for you.

My Rheumy did a number of tests over our 3 appointments, all came back negative for RA. She was very strict with regards to my tapering schedule (much too fast and too big of a drop causing a flare and me going back up to earlier dose). Also very superior, condescending, gave conflicting info, and slammed other specialists.

She never did confirm my gp’s diagnosis of PMR, or diagnose anything else, yet threatened Methotrexate. So I have her given her the boot and am overseen by my (wonderful) GP currently. Monthly blood tests and an appointment every 3 months. So far so good, tapering down to 9.5 from 20 on May 1st, lost weight (which I needed to do to help with knee conditions), and lowered blood pressure by half.

I believe I have PMR, and so do you it sounds like. Trust your gut, ask questions, listen to your body/symptoms and experiment with dosage until you find a solution that works for you. Hope you get some relief soon. Knowing what you have is an important first step to treatment/healing. Keep us updated.