Rheumatologist

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

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

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

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. ??

Lol Eileen thank you

Thank you

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.

Hi Eileen,  I do not take an anti coagulant, only ASA lo dose as recommended by my internist, cardiologist and the electrophysiologist kept it the same for now, due to my age, easy bleeding tendency, long time for "injuries" to heal. (I still have some bruising on my neck area and upper cheek from the cochlear implant surgery I had 2 weeks ago).  I did have a complete electrophysiological study in March in the cath lab at Sarasota Memorial Hospital, under anesthesia, plus a CT scan a few hours after, and the Watchman device was recommended.  They recommend warfarin (or such) for a month or so after the procedure.  I will see my cardiolist on Wednesday the 16th to further discuss this with him   My sister had a stroke in Dec., went to rehab for 3 weeks and then died Jan 1.  She was 15 mos. older then me, so I do have concern.  Luckily my appendage is a windsock, the easiest to do.  I did read the site you listed and found it very interesting and informative, I really appreciate that!  So I have decisions to make.     My easy bleeding had been caused by the larger amts. of pred that I took early on with PMR.  So I'm stuck with that!  I'm not rushing into anything, I've had a lot to go through, and my cochlear implant will be activated in one week and I will have lots of "homework" to do to make it successful.

Thanks so much for the great information and your knowledge you've shared so generously.  I know you have been through a lot.     Elinor

Good evening @Kathleen21605,

Both our Rheumatologist sound like twin brothers. arrogance ego whatever you want to call it irritate the hell out of me. I've tried to educate mine also with articles and research that was a waste of paper and ink. looks like I will spread it my search for a new Dr.

In the meantime, all of those things could give you heart palpitations the prednisone the blood pressure medicine the thyroid medicine. Prednisone and thyroid medicine or like oil and water. I was having severe migraines heart palpitations sleep changes when I learned from my blood Labs that my thyroid is very hyper As of May 2nd. On January 30th 30th it was extremely hypothyroid. A swing like this is not normal for me but is well-known when using the medicines together. you have to look at all the interactions. thank goodness I have an endocrinologist who's at least willing to work hard with me on the thyroid endocrinologist end. I did message my Rheumy last Wednesday questioning how we might get the prednisone and Synthroid to work more harmoniously. No reply... Good luck to you.