Hi a 'll I have been to see the rheumatologist to day he took another blood test to confirm if I have pmr or rta as he said I should be on a considerable lower dose of pred by now if I had pmr I tried to show him Eileen s notes she sent me reg pred and Ben no difference to other's that are not on pred he was just so arrogant when I told him it takes more that 14 months to get off it he said no it doesn't arrogant man I've had blood pressure done it was quite high I asked him if he was worried about it he said no as it gives the wrong reading in hospital as it could be your wArm well if it gives the wrong reading at hospital why do they take it then grrrr he got me so cross . I've had a bone density scan it came back as I have osteoporosis I told him I have problems acid and still bringing blood up so they not giving me tablets I've to go have intravenous zoledronate instead thank you all in advance
Hi paula, sorry for your problems with the doctor, some I wish they could be in our skin for a day to see how it feels. I took article from the website and gave them to my doctors and seemed to have changed their minds as to how to treat PMR. I did not succeed at first, but appear to be making progress. Hang in there this journey is not easy, but with the help, information and wisdom of the Forum my life has been much easier. Good luck, stay positive and try to smile. ☺️
Thank you michdonn he wasn't interested in anything I had to say stupid man but like you say stay positive and I will be doing thank you
Lovely ignorant rheumatologist you have! I wonder if it will ever get through that they are totally unrealistic about PMR...
No wonder your BP was high!!!!
I feel so indignant for you and also for all the doctors who are people as well as medics and who understand that WE are people as well as patients. I have been extremely fortunate in those I've encountered both as a patient and carer.
Hope he gets his comeuppance. More importantly, hope you feel better soon.
Thank you betty
Lol Eileen thank you
Take heart Paula ..there is so much support,knowledge and helpful advice on this forum,you will never feel isolated.
Thank you
Hi Paula, it took me several attempts and attitude before my Rheumy would even look at the documents I was trying to show her. Now she doesn't question the fact that I am tapering Soo slowly. Stick to it read the reports, it is very difficult to have to educate our doctors, but in some cases that is what has to be done. Keep that positive attitude and smile. ☺️
Thank you michdonn
He made me so mad condescending twit lol
Sorry about the above
I've yet to see rheumatologist but most of what I've heard I can't see it will be very helpful. Recently developed swollen feet and legs Dr seems to think it's a thyroid problem and not the steroids. Have to wait til end of month for that to,in the meantime he increased from 7mg to 10mg, said give it a month then try a drop of 1mg. Anyone else suffer with these swellings. I do get more help and advice on here than the drs give. I hope you feel better soon. I can understand how angry you feel and the frustration too.
Paula, that is why I have said more than once I wish that some of these doctors would have to walk in our shoes, suffer the way we do for a day or two, than maybe they would be more empathetic. My Rheumy threatening to stop treating me more than once and my wife suggested I find another rheumatologist. I spoke to my primary care physician who is an endocrinologist and she told me she would help me. So I had a back if all went bad. It is not easy and when your doctor won't work with you it is terrible. Hang in there you will get through it and your Rheumy will get educated. Stay active, positive and smiling. ☺️
Do you ever feel any palpitations? I had atrial fibrillation that I wasn't really aware of and that was leading to swollen feet and ankles. The cardiologist is confident it was caused by the autoimmune part of PMR having damaged the electrical cells in the heart. I had a return of symptoms a couple of months ago when I reduced to 7mg - for some reason the a/f started up again and my feet were swollen on days it was bad. I raised the pred dose and it has stopped (another mystery for the rheumy to cogitate upon) and the puffy ankles have gone too.
Hi Kathleen, I swelled up gained a fast 20 lbs. Now back to normal weight. I think you will find, there is much more information and wisdom here on the forum than you will ever get from your doctors. The articles on the website provide a tremendous amount of excellent information. Good luck, hope you find your answers soon, stay positive and try to smile! ☺️
Yes I get the occasional palpitations, I had a scan of the heart nothing wrong. I am on blood pressure pills as well as levothyroxine. Every thing seemed to go down hill after a while of taking steroids. At first I felt great but now I sometimes wish I had never started them. Go for blood test end of month check inflammation levels. Then haematologist to see why I have enlarged red cells. No worries just have to wait and see. Thank you all for the help I get it is much appreciated.
There is nothing to be seen on my cardiac scan either - I have an electrical problem, not a structural one.
Th a k you Kathleen
I have developed Heart flutter, leads to a/fib, so started a beta blocker in Jan.They (electrphysisiest)want to put in a watchman device to help prevent strokes, but I'm waiting espec. since I hade a left cochlear implant 2 1/2 weeks ago and just starting to feel less discomfort now; I had so manyi head noises (hammering EVERY time my heart beat), much pain. Waiting to get the processor in less than 2 weeks; Too much going on at once, I've had PMR for 2 1/2 years, now taking 2 mg. ev. day, and have a feeling I don't have it any more, but will still cut dose s - l- o- w - l -y !! Could the PMR have affected my pacemaker rythm? I think you mentioned this once on this site Elinor
I assume you are on an anticoagulant? Are you having problems with it? I was switched from Sintrom (like warfarin) to one of the new generation sort a couple of years ago because of problems - nothing to complain about with this one.
"Who should be considered for a Watchman Device?
Historically patients with atrial fibrillation that were considered to be of a high stroke risk were treated with blood thinning medications such as Coumadin / Warfarin to reduce stroke risk. As things stand, use of blood thinner is the preferred treatment for patients with atrial fibrillation. Almost half of patients with atrial fibrillation cannot tolerate the blood thinner. Some of the reasons for this include bleeding issues, concerns for falling, lifestyle issues and inability to tolerate the medication. In such patients, the Watchman Device is felt to be a good alternative to reduce stroke risk."
https://myheart.net/articles/watchman-device-explained-and-faqs-answered-by-a-cardiologist/
Is well worth a read.
Do you have GOOD reasons for them to want to use a Watchman rather than a/c? Do you fall a lot, can't take tablets daily? It seems very early to suggest it. The insertion of the Watchman must be associated with risks - just like any angiographic procedure and it is something I'd keep in reserve I think. Sounds like a good way to send out a large bill to the insurance to me!
My cardiologist is confident my a/f was caused by the autoimmune part of PMR having damaged the electrical cells. I suppose there is no way to prove it one way or the other. However, I believe they have shown that the rate of a/f is increased in patients with other autoimmune disorders.