Blood Clots - Connected with PMR?

all those thoughts have gone through my head since day 1. COVID or flu vaccine. one or both?? Just so strange to get this when I was in nearly perfect health, on a healthy diet, no drugs, limited alcohol, etc etc. very suspicious

Many people on this platform feel the same. Mine did not start until 10 days after my second vaccine, although neck pain started all summer after the first one in May, but I did not put 2+2 together. Does not run in the family. Never even heard of PMR until I started doing my own research. My health was excellent and now I have this auto-immune disease that may or may not go into remission or may or may not go away. In 2 years of COVID-19, I did not get it, nor a cold, nor a regular flu. Never even had a regular flu shot. So no boosters for me, because I do not need a flare up. My healthy diet, very limited alcohol and only prescription CBD oil makes no difference to the vaccines, which were originally meant to boost the immune system, but in many went way beyond and now they've developed a pill which is meant to suppress the immunity effects of the vaccines, so what are left to believe? It's ludicrous.

Yes! we are very similar. Any autoimmune type is not in my family. I too never had COVID, nor a cold or flu in over 2 years. not sure when I had a cold the last time actually, probably 2018. I agree, I am very leery of the booster. I also never heard of PMR before until I did all the research. I figured out that this is what I had before my Primary and I was armed with information when I went into see her in December. Mine started in November a couple weeks after the flu shot. My suspicion is that the flu shot was probably too much on top of the COVID vaccines. I've always gotten flu vaccines however I really did not want the COVID vaccines but felt pressured for numerous reasons. Isn't it shameful?! By the way, I was also using CBD oil but I just recently stopped because I have read there is cautioned use with this condition- I don't recall if it's in conflict with the PMR or the Prednisone but I want to get my Rheumatologist's opinion at the next visit. By the way, he says there is no evidence that eating a non-inflammatory diet does anything to help PMR recovery.

Christopher, I appreciate your posting an update to tell us that the blood clots dissolved! Phew. And for clarifying that the blood clots were unrelated to PMR.

Are you able to go off blood thinners now or do you have to continue taking them?

Thanks, Colleen.I’m still taking the blood thinners and will have to for another three months and then my hematologist will reevaluate.

This is an important update to my previous post about bilateral pulmonary embolisms (blood clots in both my lungs) that were diagnosed about four months ago and have since cleared up as a result of being on Xarelto, an anticoagulant drug, for about two months. I am still taking the Xarelto and had a follow up visit with my Hematologist yesterday.

After having sent her some articles I found noting that PMR is a form of Vasculitis and that Vasculitis could cause blood clots, she acknowledged that my blood clots may have been a result of the combination of PMR and having taken a long car ride about two weeks before the blood clots were found inadvertently on an abdominal CT scan. Despite my wife and I stopping every two hours on about a six hour trip to walk and get the blood flowing in our legs it appears that the blood clots formed anyway.

This is very important for sufferers of PMR who I am sure know that when they sit for any extended period of time they get stiffness in their legs. You should be aware that blood clots could form in your calfs and eventually break up and migrate through the heart to your lungs, which if not detected and treated could be fatal.

My hematologist wants me to continue taking the Xarelto for at least two more months (which will bring it to six fall months). At that point she will make an assessment as to whether I should stay on the Xarelto at half of my current 20 mg per day dose for the rest of my life or is its safe to stop taking them. She commented that my PMR is likely to go on for quite some while and it might be advisable to stay on the Xarelto at least for the duration of the PMR.

Thanks for this. I sit for a good 5 hours per day for my job (work from home at a computer). I do find my legs getting very tired. Not so much walking through a store, but actually taking an exercise walk. I don't know why it's different, but it is. I will have to be more vigilant (not hyper-vigilant). It's extremely difficult to get hold of any doctor here in Nova Scotia, nevermind my neurologist so a lot of my journey with PMR over the last 8 months (4 months diagnosed) has been winging it. The information I receive in this group has been extremely helpful. All the best to you and the Xarelto and continued progress.

It’s a good idea, PMR or not, to get up at least once an hour and walk for a minute to get the blood flowing in the legs and hopefully prevent blood clots from forming. Good luck to you in your journey back to good health.

This can happen even while on steroids and if you don't have any PMR type pain/stiffness?

I noticed that my left foot is slightly puffy in the mornings some days. I spoke to my doctor who attributed it to vascular causation but did not seem to be concerned. I am tapering now and am at 9mg. Prednisone.