PMR and blood clots

[lsplumb]

Have had PMR for 7 months and currently on 8.5 mg Pred. Just ended up in hospital with multiple blood clots in lungs. No apparent cause (don't smoke, not overweight and exercise regularly. (I'm 75 yo female). Just wondering if the inflammation caused by PMR could trigger blood clots. Think my PMR is pretty well controlled, although most mornings I do still wake up with just slight groin pain which goes away after my a.m. dose of Pred (split my dose: 6 mg in a.m. and 2.5 mg. late afternoon). When PMR started, nearly all my pain was in the pelvic girdle (thighs, groin, buttocks). Possibly I should be taking 9-10 mg of Pred so I don't have ANY discomfort in mornings, but hate having to take that much. Thanks for any input.

[DorsetLady PMRGCAuk volunteer]

Can’t advise in the PMR -blood clot connections sorry . Others will be along shortly..

But would say you do need to be on the correct dose of Pred for your PMR…and to be honest the difference of 1mg or 1.5mg is marginal in the side effect line… whereas if it gives you quality of life it’s a no brainer. The other issue wit not being on enough, you run the risk of allowing the inflammation to build up again and ending up having a full blown flare - where you will need more.

[Queenie1901]

I have no medical background in order to reply but did the hospital give you any indication of their consideration of your concern?

[lsplumb in reply to Queenie1901]

Hospital doctors didn't think that PMR (inflammation) or prednisone caused my blood clots. But I still wonder... they don't always know everything!

[Queenie1901 in reply to lsplumb]

So if not the PMR etc, did they offer any other reason?

[Polygolfer]

All this is quite serious and you should be having these discussions and conversations with your doctors!!

[Queenie1901 in reply to Polygolfer]

Totally agree

[Sophiestree]

This must be very concerning for you. Did you have to have any procedure for this? Plication? Stents? Have they put you on blood thinners? Nothing to explain them? Long trip?

I hope they are following up.

I have a history of DVT and have been on high doses of prednisolone, now 7mg, for nearly 4 years so appreciate your concern but wondering if this is just a really bad coincidence?

[Pixix]

it’s serious when blood clots reach your lungs! My husband currently has DVT in leg & we were warned of danger re lungs. Think you should be discussing your pred with your medical team, who are looking after you in hospital, surely?

[Potter100]

Like you, I developed 2 blood clots in my calf, for no apparent reason. Now on blood thinners for 3 mths. I am tapering off pred & down to 5mg. I have bad hip/leg/groin pain which is thought to be a hip problem. I am going for an x-ray. I also have some pain in my upper arms again (bearable), but it does make you wonder if all these things are linked to PMR.

[Fishface21]

My suggestion would be to have a read of the leaflet that comes with the tablets if you haven't done so already. If that doesn't help maybe try to speak to a pharmacist, they are easier to contact than other medical professionals (in the UK) and knowledgeable about side effects. I hope you find some answers.

[AtopicGuy]

Blood clots in the lungs have often broken off from somewhere else.

[Sandmason in reply to AtopicGuy]

People often have undiagnosed Factor 5 Leiden. It's helpful to take a commercial DNA test, very cheap. Pulmonary embolism are life threatening.

[AtopicGuy in reply to Sandmason]

True, but it's far from the only cause:

mayoclinic.org/diseases-con...

[PMRpro Ambassador]

Did they justify the claim that it is nothing to do with pred? Or PMR? There is evidence that VTEs are associated with pred and the disease it is being used to manage. This is a Dutch study - so they probably wouldn't believe it ...

"In conclusion, patients receiving oral glucocorticoids have a more than threefold increase in the risk of a first VTE. Patients with prior VTE have a twofold increase in the risk of VTE recurrence during periods of oral glucocorticoid treatment. As oral glucocorticoids are commonly prescribed for a wide range of conditions, 44 awareness of the drug‐associated risk of VTE may improve treatment strategies to prevent this complication."

ncbi.nlm.nih.gov/pmc/articl...

[lsplumb in reply to PMRpro]

Thanks for the info on that Dutch study. I also read something that Pred could cause blood clots. So I asked the doctors at the hospital. One told me that, yes, Pred could cause this problem. Two other doctors pooh-poohed the idea. I'm more inclined to believe the Dutch study! So I guess I'll be on blood thinners for the foreseeable future. Nuts!

[PMRpro Ambassador in reply to lsplumb]

Not the end of the world - I've been on them for about 12 years. But slightly appalled that the docs dismissed pred as a risk factor ...

[Pollyone]

HI there sorry to hear of your situation. Might be worth asking if they have checked your blood for Factor V Leiden which can contribute to clots. I was found to have this condition which can cause clots. and on lifelong blood thinners now having had a possible TIA a few years ago. Currently like yourself I’m on 8.5 mg Prednisolone from 30 mg December 2023. Each time I reduce (Monthly by 1/2 - 1 mg after12mg ) I get severe aches and difficulty getting up stairs etc but am trying to persevere having had to go up previously when I’ve slowly reduced. By the afternoon much reduced pain for some reason. As previously active 70 year old getting pretty fed up with this debilitation on a daily basis but there’s worse conditions and I’m trying to lead a ‘normal’ life but taking care to work with it.

Good that they found your clots. My 21 daughter has had 2 but fine now. Has to inject blood thinners if she flies over 2-3 hours. Just thought the info might be helpful. Wish you better.

[Thelmarina]

I’ve been on Pred for 7 years and had an ‘unprovoked’ DVT in my leg 2 years ago. I was given antibiotics which were useless and the swelling went as far as my groin. The result is that I will be on blood thinners for the rest of my life. Grateful for them of course but agree that Pred may have played a part.

[lsplumb in reply to Thelmarina]

Thanks, Thelmarina, for your comments. I am also suspicious of the Pred since I don't have a single other risk factor for blood clots.

[pmr_nikola]

I am surprised that nobody mentioned COVID as well as COVID vaccines. There are some reports that it may cause increased tendency to blood clots.