Lanzarote

[Devonspinner]

I was diagnosed with PMR 7 years ago but now have LVV since August 2024. Carotid, aorta, subclavian and both femoral arteries inflamed. I have always been a good swimmer and last year was able to swim 20 lengths of the pool, no problem. This year at the same hotel in Lanzarote I can only manage 4 before I am totally out of breath and my thighs hurt. I can't believe how my fitness level has plummeted. I am on 20 mg prednisolone and methotrexate

[SheffieldJane]

I had a very similar experience in Ibiza, I thought I was going to drown. All my stamina gone! My doctors didn’t warn me about this. I expect they would have said that I need to remember that I am ill and the exercise programme needs to be moderate and mild with built in rest days. Prednisolone does not cure PMR and GCA, it does a good job of relieving some of the painful effects though. Unfortunately it does not help physical fitness and stamina. Gentle exercise like Pilates and Aquarobics is brilliant done mindfully though. Good luck. I hope this helps a bit.

[Phoebenooby]

hi, I am interested in your femoral arteries being inflamed? I was suffering from undiagnosed PMR from June 23. A few weeks later got claudication in my calves on walking. I got diagnosed with peripheral artery disease september 23. I only have blockages in my femoral arteries no where else in my body and no plaque. It was only months of extreme pain that I was finally given steroids for the PMR end of January 24. My vascular surgeons don’t understand why my arteries are blocked and are on the fence about it being connected to PMR . I have read that ther IS a connection. My drs say my blockages are too long to unblock and I’m stuck with it unless I want a bypass… how are your Drs dealing with yours? How do they know yours are caused by PMR? Thank you

[Devonspinner in reply to Phoebenooby]

Hello, mine aren't blocked but inflamed. It was shown on the PET scan

[Phoebenooby in reply to Devonspinner]

I see. I’m still not sure what I have…. this is the findings from the PET scan….

Thank you for taking my call today. This was to discuss the results of the PET CT and the plan moving forward.

The PET CT was requested looking for large vessel vasculitis which is sometimes associated with PMR. You PET CT however showed only focal vasculitis at the femoral arteries.

This is a non-specific result and does not entirely fit with large vessel vasculitis or PMR.

[Nagswoman in reply to Devonspinner]

Same

[Rugger]

I was diagnosed with PMR in 2016, then 3 years later I developed claudication in my legs. A PET-CT scan showed a similar picture to yours - my aorta and all its branches were inflamed. My Rheumatologist believes I've had GCA-LVV from the start.

I've had my 'ration' of Tocilizumab, which helped, but am now back on prednisolone and tapering to 3.5mg next week. I tried MTX, but it did nothing for me, so it was discontinued.

PMR: 2016

GCA-LVV: 2019

[PMRpro Ambassador]

But you also have a diagnosis of LVV now - a far more serious place on the spectrum of PMR to GCA and even more likely to cause systemic effects, The blood flow through the femoral arteries to your legs isn't going to be ideal and as we know - pred doesn't cure, just manages.

One of the first really bad PMR symptoms I had was dreadful thigh claudication when I tried to use the crosstrainer - couldn't do a minute without agonising pain. Hadn't had any pred at that point.

[Devoid]

on methotrexate I could hardly put one foot in front of the other . Had far more effect on my mobility than the illness itself. We’re you on methotrexate last year??

[PMRpro Ambassador in reply to Devoid]

Same here - by week 3 I felt human for 12 hours before the next dose was due!!! And still knackered ... After 4 weeks off MTX - back to normal.

[CoziNess]

Yep, I've PMR and LVV for 4 years. I began to have problems when doing exercise too. I have had chronic fatigue since this all started and although I can do more now than I could at the beginning, my body doesn't seem to like getting out of breath. I was always incredibly fit before this crazy disease hit me, so I now do only gentle exercise for short periods to keep it happy. Dial down your aspirations now and you might hopefully get back your old self eventually.... Cross fingers❤️😊

[Devonspinner in reply to CoziNess]

Thanks for replying. It's just so frustrating! My bowel and stomach were also inflamed but I am pleased to say that , that has improved. It's a bit like a civil war going on inside me, that the part of my body that is supposed to protect me, i.e my immune system, is doing it's best to destroy me !!!!

[DorsetLady PMRGCAuk volunteer in reply to Devonspinner]

It's a bit like a civil war going on inside me, that the part of my body that is supposed to protect me, i.e my immune system, is doing it's best to destroy me !!!!

Unfortunately that’s exactly what is going on -but hopefully the meds (at correct level) will arrive on a white charger and sort things out… 😆

[LadyPam]

I started with PMR in feb 2020 and have just been diagnosed with LVV (Aorta, subclavian and superior mesenteric artery is completely blocked). I’ve been in 30mg of Pred since last June while I got a diagnosis (it’s taken a while !). I’m just about to start on methotrexate and I’m. now anxious about my fitness. I’ve always enjoyed sport and now play a lot of table tennis and pickleball as well as walking. Before I sorted on 30mg of Pred I had got down to 0.5 mg and thought I was almost finished with my PMR & Pred. How wrong i was ! Hoping that methotrexate will help but I’ll try and remember not to push myself too much and to pace myself.

Wishing you well

Thank you

[Devonspinner in reply to LadyPam]

Thankyou LadyPam, I know exactly how you feel. Keep me informed how you get on with methotrexate