My daughter, who is a health professional, very much wants me to see a Rheumy. My feeling is that as I have good support from my 2 regular GP's who let me self manage to a great extent, I am intelligent and informed about PMR, have read Kate Gilbert's book and read this excellent forum everyday - it there anything else a rheumy can do? You all say PMR will go in its own good time and I can't see that seeing an expensive rheumy will hasten it on its way?
I am in my third year of PMR and having great trouble coming down anything under 10 mgs of pred a day. When I do I usually flare and go back up to 15 mg (yes, I know "yo-yoing"). I tried methotrexate for 3 months with no difference except it made me very tired. I supplement with all sorts of stuff like Vitamin D and magnesium (all the recommended things) have a really healthy diet, exercise when I can though I am usually so stiff it's sometimes difficult.
I was very stiff (presumably with osteo) before my PMR diagnosis so am wondering if the extreme stiffness I have is that rather than PMR? Is there any way of telling the two apart?
Thanks for all your help.
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Louisa1840
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You don’t necessarily need a Rheumy as lots don’t if they are happy with progress and it’s uncomplicated. The addition of Methotrexate and yo-yo’ing might be taking you out of the simple bracket, though a good GP is debatably better than a useless specialist. Can I ask for the benefit of PMR experts how you did your taper, in what doses and for how long?
I am surprised to hear that you tried Methotrexate without seeing a Rheumatologist? I thought they were the only ones who could prescribe it as it is such a strong drug. I do think you have a right to decide whether to see a Rheumy or not. Some of them are not worth a visit but some of them might be helpful? If you do decide to see one, ask us on here for a recommendation!
OOH -SEVEN years Constance that's harsh! Agree that, unless I absolutely have to, I think I'll spare the expense (they cost around $400 for the first visit unless I go through the public system in which case I would have to wait months for an appointment). We have a fairly good public system here in Oz a bit similar to the British NHS but for quick appointments and the doctor of your choice you need to go private which is expensive.
If your pain responds to normal painkillers it may be arthritis rather than PMR. Have you tried paracetamol or ibuprofen? My aches and pains returned below 10mg.
However I agree with Suzy1959. If you are finding it hard to reduce below 10mg, and decide to see a Rheumatologist get a recommendation from this forum. There are all sorts and you don’t want to lose the autonomy you have now.
Thanks Mary. I went back onto osteo paracetamol today and it has already eased the stiffness. I think I'll stay strong and trust my own intelligence and this forum before going to a rheumy. sometimes our own intuition is the best guide!
I don’t know whether Rheumies in Australia are better than those in UK, but as SnazzyD says maybe a good GP is better than a useless Rheumy!
However, as you do seem to having a bit of difficulty (which is presumably why your daughter has suggested it) it might be worth trying one appointment - to see if you get any better advice.
It is difficult sometime to tell Arthritis pains from PMR - but have you tried taking paracetamol-or Aussie equivalent. If that helps it would suggest pain is arthritis rather than PMR. Are you 100% sure stiffness pre diagnosis was osteoarthritis and not PMR?
I note in your previous post you say you are on DSNS taper, but are still having problems - have you tried 0.5mg steps down once you get to 10mg? I guess you are okay at 10mg but everything goes to custard below that?
Might be worth try smaller tapers before resorting to Rheumy - he will probably try and introduce other steroid sparers.
Agreed! So knowing the stiffness is most likely to be arthritis, you can now get going (again) on a very slow taper. I have a GP who lets me do my own thing....I suspect through lack of interest rather than that he has assessed my ability to manage myself.....and it’s a godsend, in that my taper is now slow enough to avoid any more flares.
Concerning your daughter’s wish for you to see a rheumatologist, she has not heard all the scare stories on this forum. Stick with the doctors you know!
Since you are having some problems with PMR pred tapering and OA stiffness it would make sense to see a specialist ie rheumy, for another opinion. i believe most of the cost of a specialist [85%?] is covered by Australian Medicare? It would be nice to get the pred down to 5mg for minimum side effects. That's where I'm at after 1.6 yr, coming down from 80mg pred, with GCA. I did have several flares below 10mg.
Hi Louisa
Not everyone see’s a Rheumatologist, if the GP can manage it & everything is going pretty smoothly.
You say you’ve tried Methotrexate, so l presume you are not in the U.K?
If it is free or not too expensive, I would ask for a Dexa Scan and see if you have osteoarthritis...........if so then you know where you are and what you want to do.
If you have a good GP and they do not think you need to see a rheumie stick with them. A lot of GPs seem to not know much about PMR and are frightened of prescribing long term steroids and they normally would prefer to refer you. As you say what more can a rheumie do that your good GP cannot do? If you are asymptomatic or have GCA, yes you should see a rheumie.
I am overseen by a great GP who lets me guide my own taper. I get bloodwork every month testing for ESR and CRP which we review at my appointment every three months. He schedules an annual dexascan, vitamin d test and we monitor my bp which had been low the last couple of weeks (I’m on meds for high bp, dropped down to half dose last year).
I too am struggling to get below 9.5/9, with a couple of slow attempts under my belt. I will try to lower again next month and see what happens.
I had a horrible experience with the only rheumy I ever saw. After 3 appointments I was out of there.
My GP said he could oversee me, however if I developed GCA symptoms or got “stuck” for a lengthy time during my taper, he would refer me to a rheumy of my choosing.
I also have OA in right knee and am awaiting replacement surgery. At 9.5mg I can still feel breakthrough pain in my knee, unless I have a steroid injection (that lasts about 10 weeks). Tylenol doesn’t help much at this stage, and Tylenol 3 has some side effects that are unpleasant, so I put up with the pain in between injections.
I wish the best with your decision and your taper moving forward. Seems around 10mg can be a sticky point for some folks. Hopefully avoiding stress will help during taper time, as this is what caused a flare for me last time.
My g.p. Is great but I am apparently one of few for whom prednisolone doesn’t work so reducing - now at 4.5. Was put on methotraxate but hair loss and return of stomach bulge which I’d reduced!
Then 3 months ago my ankles and legs swelled especially insteps overnight.My g.p. Said pulses normal but saw rheumi privately and due to steroids making varicose veins worse. The ankles are slightly better did in desperation use solanpas anti inflamatory pad over instep.
Seeing rheumi nhs next week- you might as well join the queue only seen at 6 monthly appointments.
What are the grounds for declaring pred doesn't work? It works for the PMR we discuss here but not for other causes of PMR (PMR is just the name for symptoms caused by an underlying disorder and there are several). Nor will it work if the dose isn't high enough for YOU - there are no fixed doses, no fixed duration and no fixed way to reduce.
My G.P. practice was pretty useless. I was not receiving any continuity of care for about 3 years of symptoms as I was in my 50,S and just told to keep moving and the muscle pain had nothing to do with statins and was probably viral.
I saw a Rheumatologist and it was very different, he immediately ordered a PET scan and other investigations and I feel listened to. Unlike my G.P. he is not obsessed with reducing prednisone as quickly as possible.
Now I do accept that the situation could be reversed and you do hear stories of poor Consultations inRheumatology departments. I think you have to make your own mind up how happy you are with your current treatment. If you are comfortable with your Doctors then you have to weigh up if you will gain anything. Sometimes our loved ones want an one off remedy for PMR that is almost instant, sadly I don’t think this exists.
Personally I think not. I have been twice now and learned nothing more than I have from my GP, this forum or Kate’s book. To be honest the rheumatic people were like they were reading from an old well worn book. I just sat quietly
I was referred to a rheumy after 12 months of PMR.
The first thing he diagnosed when thoroughly examining me was a DVT in my right leg! This was dealt with at the local hospital and I am now on Apixaban anti-coagulant. He then suggested a PETCT scan to check for GCA, which proved negative, but showed up I had polyps in my bowel! This was dealt with (privately) and produced a "multiplicity of polyps". Still working on getting the right level of Pred plus lefluminide, but it was certainly worth seeing the rheumy to get other conditions diagnosed.
Hi there .i could be wrong but I think methotrexate takes over 3 months to start having an effect, so if you didn't have a ghastly experience it might be worth trying again . I've only taken it for a month so don't expect any results for a while . Here in the U.K. only rheumatologists can prescribe it . TBH if you can afford it I'd see a rheumy as well as keeping your excellent GP . you might find that the rheumy will run tests to see why it's so difficult for you to reduce - maybe something else is going on . At least your daughter would be happier if you see one . Good luck !
Love my Rheumatologist at Marshfield Clinic in Wisconsin. I will stick with him forever. I see him every two months. I live 4 hours away but worth the drive. The clinic is wonderful. Tapering 1mg every two weeks..now on 7 mg. My GP is just OK, nice but not the greatest at diagnosing.
I have had a terrific Rheumatologist in Geelong Victoria which is in Australia. She operates in a private Rheumatology Clinic within the public system here. There is still a big gap payment to make as the government benefit does not cover all her fees. She has been well worth the cost though and she monitors my progress regularly through blood tests as well as consultations. I’m very happy with the care I have received.
So much depends on the calibre of the GP and what the diagnosis is. My experience was that my GP was useless. He never even examined me and hardly took his eyes away from the computer screen. He finally made a rheumatologist appointment and I found out there (after 4 months of illness) that I have both GCA and PMR - so, given his lackadaisical and dismissive attitude, I might have lost all or part of my sight during that time. I realised afterwards that he wasn't even aware of GCA. So without my rheumy I might have been in deep trouble. That particular GP has now retired and I see a younger female doctor. She is much more empathetic and listens properly to her patients. I have a feeling that if I'd seen her originally, she would have fast tracked me to a hospital appointment. She's very open-minded and I think, if I have only PMR and not GCA, I'd be happy to be treated by her alone.
Hi Louisa . I would definately see a Rheumy(not necessary private) I have had PMRfor 4 year up & down with pred doses.My Gp is good but admits herself she is not an expert. A Gp should not prescibe Methotrexate. I was not getting any better and my Rheumy sentme for a PET scan. I have now LVV of the aorta. I am up to 40mg from 6. No one Knows how long PMR lasts. I added my cumulative dose up today 13mg over 4 year. They recommend 5 - 6mg but I do not agree with this as everyone is different and also the length of time. I recommend a good Rheumy. I am lucky I have a good one.
The only reason for a rheumatologist is that they know the blood tests needed to rule in or rule out different conditions. There is nothing special about them; there are good and bad ones.
If you are happy with your 2 GP teams, why change it now. I understand your daughter's concerns as a retired nurse myself,and no offense meant to your daughter, nurses can be very inflexible in how they think.
I saw nhs locum rheumatologist for first time at 14 moths after diagnosis when I had gone up to 10 mg after a flare.
She said why are you on this dose look at you - You have moon face after a flare. She immediately on seeing me said....your blood pressure is elevated you are losing iron
You are pre diabetic
I came out feeling wretched and refused to see her again.....
Hi Louisa I can only tell you about my experience . I saw my rheumy first time since I was diagnosed a year ago although he told me he would see me in four months.. I had a lot of concerns . No blood test had been taking . Everything I said was dismissed from my raised blood pressure to heart palpitations.stiffness etc etc . He said I wasn’t tapering quick enough . I told him I’d had two flares and he looked at me gone out and said what do you mean flares you are bound to get some pain just take paracetamol The whole visit took about three minutes and he said I’ll see you in another year .i think I was in utter disbelief.Im not sure what he actually gets paid for . Suffolk/uk
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