I was diagnosed on April last year with Polymylgia. In August diagnosed with Temporal Artritis. Last saw my rheumathologist in Dec 16, was due to see him in March, but got appointment mixed up and have been moved to the bottom of a long waiting list as a result, so have basically been treating myself as my doc won't make a decision. Another rhumy was recommended to me so had an appointment with him on Friday. He has said that in his opinion I don't have Polymylgia or Temporal artritis, feels all my pain is from Fibromylgia (which I've had for approx 15 years) after squeezing my arms legs, shoulders and hips mercilessly, leaving me in tears. Told him what led to my diagnosis, 10mgs prednisone initially and 60mgs in August down to 6.5 now. 2 wks in on 60mg had a massive breakthrough headache on right side of head (TA side) which I was hospitalised for a week with, which he was surprised Id been hospitalised and felt it was a migraine. Told him as best i could all the symptoms which lead to both diagnosis and the 'miraculous' recovery once started the pred to which he said, well pred damps down everything in the body! Explained my diagnosis for TA which at the time felt the side of my head had been hit repeatedly with a baseball bat, said the pain could have been referred from my shoulder! Showed him my blood tests back to April 16. My ESR never went above 30 and CRP above 6, (although when they were 'high' for me was when I couldn't turn in bed and in so much pain) Queried this with him & he said can happen in rare cases! Told me he wanted me off pred as soon as possible and to reduce by 1mg every 2 wks, I queried the speed of this, he said it'd be fine, I didn't agree but he didn't acknowledge it. Prescribed Cymbalta, said it would improve my sleep and reduce the pain. I am to lose weight (I'm heavy), and to exercise! Noy making excuses but lred hasnt been kind to me with weight and fatigue from Fibro limits ability to exercise. In the meantime I've researched Cymbalta and have decided I'm not going to go on it as people's reactions to being on it and withdrawal are herrendous, plus it puts on weight! I feel I'm caught between a rock and a hard place, don't know whether to believe him about Poly and TA and when I queried about his opinion, he said well I wasn't there!! ! I have left a message with his sec so expecting (I hope) a phone call tmrw when I'll tell him that I won't take Cymbalta. I'm so upset by all if this and very scared. Could I have your thoughts on what I should do! Thank you in advance!
Exactly - he wasn't there. Did the pred help the pain HE says is fibromyalgia? Because if it did - it isn't fibromyalgia, it doesn't respond to pred at all. And the rheumy should know that. Pred does NOT "damp down everything in the body"- that is absolute rubbish. A dramatic response to pred is entirely consistent with PMR and GCA - and absolutely NOT consistent with fibro.
But I have no idea what to suggest - you have already tried another doctor and I assume you are in the USA and I really don't know enough about your system.
Thanks Eileen, I'm in Ireland. I tried explaining that I got that 'miraculous' recovery but he said bout pred damping down everything! I was so surprised at his reaction and 'answer for everything ' attitude! I don't even care about the Cymbalta, what I'm really afraid of is coming off pred, which we all know is not easy and, if I do have Poly, getting a massive flare, not to mind the TA flaring! I don't know!
Sorry yes, the pred dealt perfectly with the pain but I also had fibro pain, which obviously as you say the pred doesn't touch! Told him I could tell the diff between the two when PMR would flare!
Would "educating " him with some literature from this site help?
Dear Mrs. Hobbes, I am so sorry and quite astounded you are being treated so unkindly and with such lack of compassion. I had to see once, and never return to, 2 different rheumatologists, but quickly found a practice with 2 women rheumatologists , and a PA/ female who are smart and kind. While I am stuck in a bad phase right now, I feel they are sympathetic and trying to figure it out. I am in the US. Is this harshness common in the UK? It seems many of the people on this forum experience it. I've found women docs to be better than men. Hope you can see someone different!
Thank you! It would but I feel his arrogance would prevent him from looking at it! Although it would do no harm, might do that!
Hi Mrs Hobbles
I'm so sorry to hear about your trouble with this.
I've also been on 60mg but my rheumatologist reduced it very slowly. They should do this. It has taken me 2 years to come off pred. I'm in the UK. They are surely supposed to presume it is PMR and GCA if the symptoms go on pred!
Can you go back to the original person who thought it was PMR originally? My best advice to you, having reduced, is to do as he says but if you flare with pain in hips, shoulders etc tell him and suggest that you go back up to the dose you were comfortable with. This was how I was advised to reduce. Slowly wins the race.
good luck
Pauline
Thank you Bethune. It is quite astounding the lack of care or empathy. If they would just stop and think about what ppl with chronic pain and extreme fatigue have to deal with. It's just all about the money, this doc charged €220 for 15 mins, that's Irish Euros, pretty much on a par with the dollar. I don't have to go back to this rhumy but it's getting that diagnosis and what to do with it. I'll be trying to reduce my pred anyway and just hope he's right and I don't get a flare. I'm so glad you've found doctors you feel confident with and they're trying to figure things out for you, tho unfortunate you're going through a bad phase. Hopefully they'll work something out quickly so you get through it quickly! Thanks again.
Couldnt you just wait for the appointment with the rheumi that diagnosed you? Do you still get the pred from him?
Shortly after I was diagnosed, I broke my pelvis.The rheumi thought it was caused by pred infused osteoporosis and he told me to get off 20 mgs of pred almost immediately.The broken pelvis was due to a vitamin D defficiency and I did not go off the prednisone...I quit going to him. I waited three months to see the new rheumi and n the meantime, Eileen and this forum taught me about tapering , pacing etc.I had the advantage of being able to get the prednisone but other than that, I got through a difficult time only with the help of this forum.
If you can still get the Prednisone from the old rheumi, it's worth waiting , imo .
Hope you get it sorted out soon.
Thanks Mimi, that's very true about the pred and I think if worst came to worst I could persuade my GP to prescribe pred. I'm with you with this forum and Eileen! Since my initial diagnosis and trauma with GCA, this forum had helped me and taught me so much more than any doctor or rheumathologist! Yes, think I'll be paddling my own canoe for a while by the looks of it! Hope you've recovered from your broken pelvis, that's nasty esp on top of PMR! Thanks again.
Do you have another GP in your practice? If so I would talk to him/her and explain your concerns. Your worry about dropping Pred so dramatically is reasonable and you will need your GP on side to continue prescribing it so that you can taper sensibly. Your case sounds complicated and it sounds as if your rheumy wants to simplify it. Ask if there is another rheumatologist you could see at another hospital - in England you have this right but I don't know if it's the same in Ireland. I know how hard it is to do this when you feel so tired but you need better advice than you have been given so far. Please let us know how it goes and fight your corner. You are very much worth it.
Thanks Pauline. I'm not sure when I'll be getting back to original rhumy, as I've been put back to the bottom if his long waiting list. I wasn't terribly happy with him anyway and as this chap was recommended, I felt he'd be good to see but in hindsight, he was worse than original and twice as expensive. I know it shouldn't really be about the money, but when it's hundreds for each visit it makes it more prohibitive. And you're right, they are surely supposed to presume it is PMR and GCA if the symptoms go on pred! Do you ever feel we've learned so much on this forum? I think maybe our knowledge irritates the doctors, we're just supposed to go along with everything they say and not question it! Thanks again for your thoughts!
Could you take someone with you for support at your next visit? You have been treated unkindly and dismissively, and that is less likely to happen again if you have a companion. You had been ill enough to be hospitalized, and that fact alone merits your concerns and symptoms being treated seriously. (And, by the way, even if it had "only" been migraine, anyone with a migraine that major would deserve further investigation.) I agree with the others that under these circumstances you might do better with a compassionate GP who is willing to read the literature and be guided by your symptoms.
I'd fire that Dr. he sounds pompous & unempathetic. I drive from MI to Chicago every three months to see a most incredible, compassionate, Rhuematologist, & an incredible Hematologists/Oncologists. How much experience does he have, did you ask him, with PMR ? The slower the better has been my learned experience for reducing prednisone, & reinforced by my specialists & family doctors. Best to you, please find a doctor that understands how much pain... HURTS... & knows what empathy is.
Mrs Hobbles, the native Americans have a saying: Never criticize a man until you've walked a mile in his moccasins. I truly would like to see some of Rhemy walk I our shoe for a day or two. Then I wonder how fast they would be criticizing us on Pred.
Think positive, I smiling on my PMR journey. 🙂
It's shocking that you have been treated so poorly. It makes me wonder why some medics go in to the profession. I think as you have to pay for your consultations it may be worth asking around for a recommendation of a Rheumatologist. As the saying goes, "You pay the fiddler you call the tune". As others have said the alternative may be to go with your GP. I have been very fortunate with my GPs. They just leave me to it and prescribe accordingly. I hope you have some resolution as it's difficult enough without any added stress which only exacerbates PMR.
Exactly what happened to you has happened to me, I was diagnosed with PMR 6 years ago, and have struggled with flares ever since....had a very arrogant rheumy....so changed to another.......well, he said he doesn't think I ever had PMR, (had fibro for many years also)....when like you I said the pain is very different, and fibro doesn't respond to steroids he just looked at me.....My next question obviously to him was, what do I have then?.....no answer. Went 3 weeks ago saw his registrar, who said get off Pred, my friend asked if I had been misdiagnosed, then what do I have....no reply. She said I`ll see you in 3 months time, I said no point 6 months (I won`t go again anyway) she insisted on 3 months....why!...
If you can, try to be looked after by GP not hospital, many people on here have been better off doing that,. as I am now doing.....
Also my ESR and CRP were about the same as yours.....but that`s not all that should be considered, it`s symptoms.....and the patient!!
Good luck I know how frustrated you feel, it doesn't help us.....
Do you have to put up with this arrogant man? I've never had to use it but I know that in UK surgeries have systems for patients to complain or, rather,mine does but it's had lots of awards for good practice so maybe a complaints system is just one of their addons but I don't think so.
Not sure how system works in Ireland but in both my PMR episodes I was treated very well just by my GP.
I feel so indignant for you. Please let us know how you get on.
Just to clarify - Mrs Hobbles isn't in the UK. She is in Ireland which has a very different system. And believe me Bethune - I hear more complaints about harsh rheumies from the USA than I do from the UK.