Doctors differ and patients end up in a worse place! I'd really appreciate your thoughts!
Posted , 13 users are following.
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!
0 likes, 36 replies
EileenH Mrs_Hobbles
Posted
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.
Mrs_Hobbles EileenH
Posted
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!
Mrs_Hobbles
Posted
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!
karenjaninaz Mrs_Hobbles
Posted
Would "educating " him with some literature from this site help?
Mrs_Hobbles karenjaninaz
Posted
Bethune Mrs_Hobbles
Posted
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!
Mrs_Hobbles Bethune
Posted
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.
EileenH Bethune
Posted
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.
Bethune EileenH
Posted
I hear ya! Not trying to indict or favor any country's health system. In general I seek female Docs, but that too is based on a small sample of my own experience and that of a few friends. There are good and bad apples in every barrel.
Also re: exercise and weight loss. Walking for 45 minutes or more each day really helps with weight control. Even more than when I play vigorous soccer or tennis. If you are hurting or tired and can manage a walk it's worth it. If you can't do 45 mins., start wherever you can.
Michdonn Bethune
Posted
Bethune, I am in the US and have a Rhemy, that has no empathy at all, has made mistakes in my prescriptions, rushing my tapering with too larger dosages, will not even listen to the idea of DSNS method. She knows best, her way or the highway. I am in a bind she is the only Rheumy around. I really don't have any options, but do what I can on my own, just need the prescriptions. But I am thinking positive and have a smile on my face! 🙂
Mrs_Hobbles Bethune
Posted
Thanks Bethune, that's fantastic that you can do such vigorous exercise. I do swim & walk, and have found between the PMR & Fibro, vigorous isn't possible but do feel something is better than nothing and it keeps me moving! Thanks again!
Mrs_Hobbles Michdonn
Posted
Sorry to hear you're having such an issues with your rhumy, it's ridiculous tho think a doctor would be so dognatic and unsympathetic. Tbh, I think they hate being questioned and it gets their backs up when they are! You're great to keep smiling, sure it's the only thing you can do! Take care of yourself😀
Michdonn Mrs_Hobbles
Posted
Mrs Hobbles, I am doing grand walking every day, looking forward to working as a ski instructor again this year. I will go head to head with my Rheumy again, but as long as I can get Pred I will be okay. Think positive with a smile on my face.🙂
Michdonn Mrs_Hobbles
Posted
Mrs Hobbles, yesterday was my appointment with my Rheumy, as she walked in the door she asked "well do you have another study for me". To which I replied "yes". Handed her my phone with the polymyalgia-rheumatica-steroid-side-effects-new-findings, study. She took a few minutes to read the article. Oh I know some of the doctors and will see them at the conference. The rest of the appointment went well, first time since the spring. Sometimes you just have to stay positive and keep that smile on your face. 🙂 I do really believe that!
pauline11822 Mrs_Hobbles
Posted
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
Mrs_Hobbles pauline11822
Posted
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!