Complication To Diagnosis.

[Croft9232]

Hi everyone, my GP just phoned to say that a blood test is back ( very late) to say I tested positive having the RF factor?

She diagnosed me with PMR 5 weeks ago and prescribed 15 mg Pred , relief 12 hours later, now on 12.5 mg and feeling good. I had raised esr and crp at diagnosis and the esr had reduced 2 weeks ago with crp normal.

I presented with many classic symptoms of PMR and personally felt I had had it quite awhile.

She said the Rheumie wanted to see me earliest and I had to taper off the Pred.

One of my symptoms was both wrists very very painful as in could not pick up knife and fork or turn them to eat that lasted a few days.No swelling or heat in my wrists and hands anywhere.

I did see a Rheumie some 9 months ago with negative RF re my wrists which at the appointment were not hurting, and he totally dismissed everything.

The GP said the treatment for RA is different with different drugs.

Feeling quite confused, any input from anyone would help me greatly.

I see the GP in a couple of days and am having an esr crp blood test tomorrow with results Friday.

Thanks for reading and hopefully I make sense.

[Hidden]

Hi Croft

That is very confusing for you, presumably she going to send you to see a Rheumatologist as it is necessary for a Rheumatologist to prescribe a DMARD (Disease Modifying Anti Rheumatic Drug) & then GP can prescribe afterwards.

Take your time to absorb the change in diagnosis & keep in touch with us until you have more information.

Kind Regards 🌷

MrsN

[Hidden]

Hi, it's always a bit of a curve ball when they contact you late in the day or Friday afternoon. I see in a previous message you were thinking towards dry eyes/RA. I have linked to NHS website that might help but I am sure others will help. I have seen recently someone had dx changed to Ra.

nhs.uk/conditions/rheumatoi...

[Snowy12 in reply to Hidden]

Hi,

I was diagnosed with GCA April 13th this year by a GP in out of hours. I see a rheumatologist on 17th June. It transpires she is the same one I saw last year following a referral from my GP who thought I may have RA after I was initially treated for gout. At the time I had terrible swollen painful wrists, hands and forearms, my wrists were deformed with the swelling. My blood tests did not show RA so she dismissed it as wear and tear and now I’m waiting to see her again. I discussed my concerns at seeing the same rheumatologist with my GP who tried to reassure me by saying rheumatoid conditions are difficult to diagnose and she’ll have more to go on this time.

I hope you get to the bottom of it and get a proper diagnosis.

[PMRpro Ambassador]

Wonder if it is the same rheumy?

Inflammatory arthritis (RA is just one of several) can present looking just like PMR and if the RF was negative at the time it was probably a fair assessment on the part of the specialist. Pred does help the symptoms od RA too so it wasn't wrong but if it is RA there are drugs that will prevent the joint damage that is so common. The sooner they are started the better for that.

Do come back and tell us what this rheumy says.

[Croft9232 in reply to PMRpro]

Will do, I will ask my GP some questions Friday that I have..I leave for Australia and New Zealand on holiday in 8 days and would like to go away not feeling confused and upset.Thanks PMRpro

[podo]

Having been on Pred for PMR for many years I was also in February Dxd with RA. Rheumie started me on Hydroxychloroquine 200mg twice a day, 4 months on this seems to be effective. If the problem returns he says I may need to go on MTX - I hope not!

[Croft9232 in reply to podo]

May I ask what problem you had returning? Was it a specific pain?

My problem is I dont have to me anyway any RA typical pain, except these wrists! No heat from them, no swellings nothing...I want to ask about having RA somewhere else and not in the joints..does that sound feasible even?

Thanks to all replies too, much appreciated.

[podo in reply to Croft9232]

My hands were incredibly stff & painful + swollen in February. Right wrist was also stiff. I had temporarily increased my Pred from 5 to 10 mg which helped but have now reduced this back to 5mg since being on hydroxychloroquine. Hands are now back to almost normal. Difficult to tell whether it was the Pred or the HCQ which had most effect but I expect time will tell! By the way, I had no RF factor so my Rheumie described my symptoms as "PMR onset seronegative RA". My PMR is longstanding, 16 years & counting.

[tazman3]

I was convinced I had PMR and had all the symptoms. I couldn't get out of bed and when I did, I struggled to get down the stairs. After a shaky start with rubbish doctors, I was started on pred which took a week to help with the pain and stiffness. Then I was called in very quickly to see the Rheumy at my local hospital. I don't have PMR and was diagnosed with Rheumatoid Arthritis. I was given a steroid injection to allow me to come off the pred quickly.

I was so relieved and have now started taking Methotrexate. The rheumy thinks I have been harbouring RA for a long time and it explains so many other things I have had. I am being cared for like a private patient and being monitored regularly. Apart from a little upset tummy on the day I take the medication, I have no other side effects. The drug is taken once a week, followed by a weekly dose of folic acid a couple of days after the MTX.

I am on my 4th week now and feel grateful that I don't have to take pred any more! RA is still a serious condition, but the treatment is so much more bearable.

[PMRpro Ambassador in reply to tazman3]

To be fair though - I have absolutely no problems with pred but the month I had on methotrexate was pretty awful!! My hair fell out in clumps, I itched all over, gained weight as I was permanently hungry and the fatigue made anything I had had with PMR, untreated or treated, look like a walk in the park. Didn't matter how much folic acid!

[Nanna71 in reply to tazman3]

I also have a mixed up diagnoses - RA first, then PMR. There are plenty of folks who have trouble with MTX but I am not one. Thinning hair, which doesn't hurt and I was pre-disposed to thin hair anyway. I had a few mouth sores which disappeared with salt water rinse. I am on 15mgs and due to go up to 25 mgs MTX. Not happy about that and I can't remember why exactly. Saw the Rheumtologist last week who was supposed to corroborate my Internist's diagnosis of PMR but didn't say yea or nay. She wants the pred. to taper off as I 'guess' she thinks I have only RA, symptoms to the contrary.

Unfortunately, the pred. has been 7 months in the taking so I have to do a slow taper.

I definitely have RA but my symptoms now (for pain) are all PMR and disappear with upping the pred.

I lost about 25, 30 lbs at disease onset, the MTX is an appetite killer (for me, and according to side effects paper) and probably balances the pred. appetite increaser for me.

So, no upset stomach here as I take a full meal with my MTX - so far. Hope this experience is helpful.

[PMRpro Ambassador in reply to Nanna71]

You can reduce to 8 to 10mg fairly fast - it is below that you will have to slow down.

[Nanna71 in reply to PMRpro]

That's what was happening. Trying to get down from 20 to 15 mgs pred. 4 times unsuccessful. Now doing a 1 mg taper every 2 weeks until 10.

[PMRpro Ambassador in reply to Nanna71]

No reduction step should be more than 10% of the current dose - that was 25%. No wonder it failed repeatedly if that is what you were told to do!

[Devedaaee]

Be cautious about what you read here. I have positive RF and had temporarily unusable wrists. GPs tend to think RF positive means RA but other criteria are required. In my case I am told quite firmly that I do not have RA. Be cautious about what you read here and please just wait to see what the specialist says.

[Hidden in reply to Devedaaee]

It's clearly stated that no replies are a substitute for healthcare. But getting a range of information and advice allows us to increase knowledge so we can form questions and queries for our specialists. My Rheumy tries to limit info about my blood test and says of "it's ok" at the moment or whatever. I now request copies of all tests - not something that happens automatically, but should.

[PMRpro Ambassador in reply to Devedaaee]

I'm interested to know what it is you find problematic about the responses thus far?

[Croft9232]

You could well be right! Now on 10mg from today and yes I have shoulder/ bicep pain .buttock and inner knee pain. Also neck ache... I now have an appt with Rheumie for Aug a consultation privately and I will be still on Pred as I need to see him to talk about it all.

It seems difficult now . Started on 15 mg only 6 wks ago and already on 10 mg is it any wonder I have pain PMR or RA I wait to see. Thanks for all replies. Greatly appreciated

Margaret.