PMR - GLAUCOMA - D-DIMER RAISED

[2009jayne]

I was diagnosed with PMR in July and started on 20mg of Prednisolone. Had taped down to 9 mg end November . For the last few years (since 2015) also I have been suffering from Glaucoma which was being controlled by eye drops. Having had a nasty bout of Covid back in February 2020 I was in hospital for 19 days in May with the after effects. However, my d-dimer still remains high never <1200-1400 ish) and despite PET SCANS appearing normal - thank goodness this still confounds the consultants . In January I’m having surgery on my eyes - to relieve the eye pressure IOP) as the steroids have sadly worsened my eyesight SO quickly and was diagnosed with secondary glaucoma just before Christmas!! Rheumatologist Consultant has now dropped me to 5mg from 9mg to preserve my sight - all abit stressful to say the least - wondered if anyone else had similar situation with either Glaucoma and/or ongoing raised D-Dimer?? Thank you . Stay safe Jayne ❤️🙏🏼🌈

[DorsetLady PMRGCAuk volunteer]

Sorry can proffer any advice - but do send best wishes to help you get through.

[SheffieldJane]

Sorry that you are going through this. I knew that Pred can increase eye pressure. I have no advice to proffer. I am glad the doctors are acting for you. Good luck with your operation!

[SnazzyD]

So sorry, you had all this. I have no experience of glaucoma but on a Covid Facebook group mostly populated by long haulers, it has come up a few times with people saying they’ve had a persistently high D Dimer with nothing to show for it.

[PMRpro Ambassador]

Elevated d-dimer levels are found in patients with systemic inflammation including some forms of vasculitis.sciencedirect.com/science/a...

And since the ramifications of long Covid are not entirely clear yet - I'd assume there was a high chance that the persistently raised d-dimer is most likely due to the Covid infection:

thorax.bmj.com/content/earl...

Have you had any follow-up of the potential Covid effects? Are you on any anticoagulant treatment? It was clear here back in June if not before that the effect of Covid on even young healthy, non-hospitalised Covid patients had left serious lung damage that was likely to take a very long time to heal, if it ever would. That was just the start of observing it. The d-dimer will remain high if there are any clots in your system that are still to dissolve.

[2009jayne in reply to PMRpro]

Thank you for your kind reply. When I had my 19 day hospital stay they only offered the usual hospital dose of Exodaban despite protocol from other hospitals recommending double. Still not on any anticoagulants and GP’s sadly next to useless saying: “it’s a slow process recovering from COVID get out and exercise - try not to be anxious”. No offer of A/C’s whatsoever!

[PMRpro Ambassador in reply to 2009jayne]

For goodness sake, "get out and exercise" - that has been discounted for CFS as it can make patients worse. And it is particularly daft to tell a PMR patient that. No chance of seeing another GP in the practice with a bit more sense? Even if it weren't due to the Covid, the fatigue of autoimmune disease is enough to make it difficult to exercise, a lot of people here will vouch for that. They say they have set up special long Covid clinics - demand help and complain if it isn't forthcoming.

healthunlocked.com/pmrgcauk......

has links to help you understand better how to deal with it.

Do try to get out, especially if there is ever any sun - start with a 5 minute walk out, and back. Have a rest day next day. If that is OK, add 1 minute each way to your walk the next day. Keep doing that until you get to a walk that is about your limit - it doesn't matter if it is only the 5 mins each way and you can't increase it. Maybe you can do it once in the morning and once in the afternoon - it doesn't have to be all at once. And keep practising - it will improve, you will build up the time you can manage. But don't go somewhere you can't bail out if you get stuck - look for somewhere you can rest before going home again if necessary. And Captain Sir Tom's technique of up and down the garden is perfect really - not far to home when you hit the brick wall of fatigue.

I do hope your GP develops PMR one day - they do change their tune then. One on the forum apologised for the way they had treated their PMR patients in the past ...

[123-go]

Has the Glaucoma forum on Healthunlocked been able to help?

[Phoenix51]

Hi. Sorry to hear this. Im no expert unfortunately but I was diagnosed with glaucoma and the beginnings of cataracts in March, one Dr thinks it was the high dose of steroids (60mg) for the GCA, the other thinks not as it wouldn't have developed so quickly. I am now on various drops to reduce eye pressure but fear my follow ups are greatly reduced due to the pandemic, this makes me nervous. How often are your eyes/IOP tested? I worry as I have been on relatively high doses of Pred since last January which can't be helping my glaucoma or osteoporosis. I am going to sound really ignorant now but what is a D-Dimer? I haven't been much use to you, apologies, I guess I was just responding to your question if anybody had had similar situation with glaucoma. Hope your surgery goes well. take care 🌈

[AdoptMeow in reply to Phoenix51]

D-Dimer is a substance released when a blood clot breaks down. The test is a screening tool used when there are some indications of possible deep vein thrombosis, but not definitive enough to go straight to getting a scan. It measures the amount of D-Dimer in the blood at that point in time (not a measure of inflammation). Normal D-Dimer is less than 0.50. A result higher than 0.50 can also be caused by a clotting disorder.

[2009jayne]

Sadly - due to the COVID situation - my pre-op was cancelled on the 6th January. Eye pressure was meant to be checked every couple of weeks but the administration is sadly not keeping up to speed with appointments. I am on medication (oral) acetazolomide and Fixapost and Timolol daily to bring pressures down. As for D-Dimer it is a blood test for inflammation - usually for Pulmonary Embolism or DVT - all of which I have been screened for - including cancers (have had a PET Scan to rule this out too - thankfully). The doctor was meant, again, to follow up with monthly D-DImers blood tests but due to pandemic are not following through. Frustrated to say the least. Thank you for your good wishes. My current, reduced, dosage of 5mg straight from 9mg has finally settled though it took a few bumpy days (over a week) to feel reasonably OK again. Stay safe. 🌈 Jayne