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
mimi1950 Mrs_Hobbles
Posted
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.
Mrs_Hobbles mimi1950
Posted
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.
Silver49 Mrs_Hobbles
Posted
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.
Mrs_Hobbles Silver49
Posted
Thanks Silver 49, I don't want to sound like a moaner but this rhumy WAS recommended to me!! And my GP is all but useless, when she referred to the original rhumy, she was delighted because it meant she didn't have to make any decisions with regard to me. Thing is, this arrogant rhumy will prob write to her and tell her his diagnosis, so there's a very good chance she won't prescribe any pred for me, because he'll have said he want me off it and she won't question his diagnosis!! I need to find a new TO, but as you say when we're feeling bad, it diff to organise anything! So glad things are working out for you with your GP, always good to hear when things are going well for people on the forum! Take care and thanks again!
celia14153 Mrs_Hobbles
Posted
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.
Mrs_Hobbles celia14153
Posted
Hi Celia, you're so kind, thank you! Theres no other GP in the practice and now my fear is she won't prescribe pred because of his diagnosis! Yes i can go to another rhumy just need to find one who has more empathy and more understanding of PMR, shouldn't be hard Haha!!
Anhaga Mrs_Hobbles
Posted
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.
reggie92967 Mrs_Hobbles
Posted
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.
Michdonn Mrs_Hobbles
Posted
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. 🙂
linda17563 Mrs_Hobbles
Posted
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.....
BettyE Mrs_Hobbles
Posted
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.
Mrs_Hobbles BettyE
Posted
EileenH Mrs_Hobbles
Posted
Just a thought - try cutting carbs drastically to see if you CAN lose weight without a lot of exercise. It has worked for a lot of us, I lost 35lbs that way and it started to go even when I was on crutches! It was slow because I didn't do it REALLY strictly (I need to be almost no carb before I lose weight well) but it worked.
I do know that there is SOMEONE on one of the forums from Ireland who recommended a rheumy. I THINK it was around Cork somewhere.
Will your GP accept the diagnosis in the meantime - all you really need is the right amount of pred to keep the symptoms at bay, it isn't any more complex than that. I can't say I am very impressed by your other rheumy - to shove an existing patient to the bottom of the waiting list is not good. Can the hospital help? They made the GCA diagnosis and should be prepared to defend it in some way - not accept a sneer from a doctor who himself acknowledges he "wasn't there".
Mrs_Hobbles EileenH
Posted
Thanks again Eileen! I think I'll have to go the GP route, but at that will have to change my GP!! I've read before that you lost 35lbs by cutting carbs! My hat off to you Eileen, since starting pred, I can pretty much say I'm addicted to carbs, I try to stay away from them but it's difficult!! The rhumy rang me yest but wasn't going to be moved in his stance! It was a very frustrating convo and he wasn't budging, so another rhumy bites the dust! Hope all is well with you, and thanks again for your invaluable advice!
EileenH Mrs_Hobbles
Posted
If you don't buy carbs you can't eat them!!!!!!
The proof really is in the eating - and once you start to lose weight it does become easier. And cutting sugar and simple carbs also helps the inflammation.
Anhaga Mrs_Hobbles
Posted
I have developed a theory recently, based on my experience. i think when we crave something it's because our gut flora are craving it. If you change your diet, you can change the balance in the gut and eventually you will also change your cravings. I thought I ate a healthy diet pre-pred. On starting pred and getting a high blood sugar reading I realized just how much wheat, etc I was eating. I virtually eliminated all refined carbs, added sugar, etc., substituting high protein foods for breakfast for example (pumpkin seeds, eggs instead of cereal). We started eating a lot of salads as main meal, also with a protein, and just oil and vinegar and herbs to dress. We began to eat more fermented foods, not just yoghurt. I discovered this past spring that i was actually craving leafy greens! This is not an overnight fix and you have to be really strict about not feeding those carb-loving creatures and instead encouraging a better balance.
Mrs_Hobbles EileenH
Posted
Yes, not buying would be the easiest solution tho I think I'd have a mini riot on my hands as I've 3 teenagers and hubby (plus 2 grandkids!) I did do a well known diet and lost 3 stone, was hardly eating any carbs, no sugar, chocolate etc, felt great and v determined to keep going, then PMR hit, carbs crept in and bad habits started. GCA hit and it was a carb fest! I'm def eating healthier now and able to resist carbs, so getting there slowly but surely! 😊
Mrs_Hobbles Anhaga
Posted
That's a very good theory when you think about it! Our gut flora has alot more to do with our overall health than it's been credit for! Now that I'm on lower pred, I did find the cravings aren't as bad. I've been trying to cut out the carbs, sugars etc and have been somewhat successful tho it hasn't shown on the scales! I've been dabbling with fermented food too, and have read so much about them. Am (trying) to make Kombucha but can't seem to get it before it turns too vinegary. A higher protein diet seems the way to go. I'll def make those changes! Thank you!
EileenH Mrs_Hobbles
Posted
Some people do have to get to a very low amount of carb to lose weight - I do. More than about 30g of utilisable carb and I lose no weight although I don't really gain either. A single roll can have that much or more depending on the type of bread! And as soon as you add even vegetables it all slowly adds up and you don't lose weight - add some fruit and you busted 90g of carb without even trying!
Anhaga Mrs_Hobbles
Posted
Well, that's interesting. Every time I've used the word beginning with a k in my posts it's been moderated. I have to admit I'm not into making my own. Many years ago I used to make my own yoghurt. Did so many things. And one day I woke up and said, I hate cooking. I'm not doing any of this any more. And I haven't.