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How does Kevzara help with PMR symptoms and pain? I am being weaned
Polymyalgia Rheumatica (PMR) | Last Active: Mar 30 11:10am | Replies (104)Comment receiving replies
I had multiple blood clots in both of my lungs that were documented as a massive pulmonary embolism (PE). The event was called "unprovoked" and I was told that I was lucky to be alive. I heard whispering outside my ICU door about prednisone being a factor for why I had such a massive PE. Did your doctors say prednisone might be a contributing factor for your blood clot?
I usually say "long term" prednisone increases the risk of side effects. I'm beginning to think that "short term" prednisone isn't any better.
https://www.uspharmacist.com/article/shortterm-corticosteroids-increase-risk-for-range-of-conditions
I guess the overall risk is still very low but when a patient is one of the "unlucky ones" to have a serious side effect then the overall risk doesn't matter.
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I remember a self proclaimed "expert" on another forum saying that prednisone side effects are easy to manage. Obviously that expert never did patient care in a hospital.
It was also said that if I needed Prednisone for the rest of my life that was okay if it improved my quality of life. My life could have been shortened by 20 years when I had the PE. I have to admit my quality of life was pretty good on prednisone up until I had the PE.
Since my PE was so massive and unprovoked, I was told I would need to be on warfarin for the rest of my life. I took warfarin daily for about 15 years along with all my other cardiac medications.
A few years ago I was evaluated to see if I could switch to Eliquis instead of warfarin. I told my doctors that I was on high dose prednisone at the time of my PE but Actemra allowed me to taper off Prednisone. I was already off all my other cardiac medications. That was when it was decided that I didn't need any blood thinning medication anymore. Warfarin was stopped so my treatment wasn't lifelong. I have been able to survive 3 more years without warfarin and I haven't had any blood clots.
Replies to "@stonewheel I had multiple blood clots in both of my lungs that were documented as a..."
@dadcue Drug risks are a percent of hundreds to thousands of people who will have a specific problem. I am a mathematics major and 25 years ago when m breast surgeon quoted me my chance of recurrence - I looked her in the eye and told her my personal chance is either 0% or 100% - that no one has a percent of a medical problem. I look at the list of drug side effects the same way - either you have it or you don't. I make treatment decisions with that in mind.
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@dadcue my DVT extended from my groin to ankle. I self-research discovered that Prednisone was linked to blood clots during the 72 hours before going to the ER. By their reactions, most had studied that it could, but not witnessed it in practice before me. That was the impression I gathered.
It did not take long. I consider five-six weeks to be short term, in this matter. I noticed other side effects in the short term also. Tingling and swelling feet and hands, irritability, increased appetite, brain fog, stomach irritation, severe herpes breakout on my bum, slow to heal cuts, bruise easily (I had never bruised before) thin skin, muscle weakness, vision change (which actually has been improved, go figure) and could not sleep. Note: I believe sleep is crucial with this disease (PMR.)
After the Heparin drip, I took to Eliquis well, they decided. Now, I bleed for days after a minor scratch. I had, all my life been a “no bleeder,” I scabbed almost instantly and moved on. Then, upon follow-up, my (now I have a hematologist) she told me I’d be on Warfarin for the rest of my life. I see her again mid-April. I shook my head “no,” thinking to myself, I’d rather stay on the Eliquis, if I have to continue with a blood thinner. And, I’d rather not. I wake up every morning and blood blood out of my nose, because of the blood thinner.
Eliquis and Prednisone are the same for me in this way, both keep me from having certain problems; but both have created more new problems. It’s a “benefits vs risks” thing for sure, for me.