Haven’t written on here for a while but do pop in and read what’s happening. Had my second rheumatology appointment yesterday over the phone. He said he had come out of retirement to help out for now during lockdown.
He went through ‘my story’. He questioned whether the pains I have in the bottom of both legs on walking are PMR related but didn’t know what it could be if not that. The pains only started last year prior to my diagnosis. He has also suggested I continue to reduce my pred but instead of the slow taper over four weeks he said I should reduce it by half a mg every fortnight. I’m now pre diabetic, got the start of cataracts in both eyes and my cholesterol is high. Lucky white heather lol...
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Spittal9
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I went from 17 down to 15.5, then down to 13.5, then down to 12. First and only flare so far happened when I started the first full week on 12. Upped to 15 for three weeks and then down to 13.5 over four weeks. This week going to start going down to 12 again
So in essence he’s saying reduce by 1mg a month - but rather than a slow taper, do it in 2 steps.
His advice on 1mg per month is good, but wonder why he’s not keen on the slow taper - odd!
Why not partially follow his advice by tapering 1mg per month but continue the slow taper. The result at the end of 4 weeks will be the same, but just a slightly different route!
He never said what he thought about the slow taper but I’m quite happy reducing that way. He is putting me down for a nurse led appointment in three months and then a Rheumatologist appointment in six months. I attended A&E on Monday due to concerns over headaches I’ve been having for months and a weird feeling/shadow in my eye that started a few days before. Concerned it could be GCA but was told they didn’t think that was the case although didn’t know what it was. There didn’t check my bloods so rheumatologist wants me to have them done by GP as not been checked since lockdown on
GP is suggesting they are migraines. I’ve had migraines for 20 years and was at the stage of about to get Botox injections into my scalp to try to help them, as have used so many medications that didn’t help. Started taking prednisolone last June and the migraines disappeared completely. These headaches are in a different place and just feel different but he reckons that’s what they are
I don’t see the point in changing the slow taper just for the sake of it, s as it has been working well apart from the recent flare. The pains have come back again since the flare in April. I had them way at the start of this journey for a long time. They only come on if I’m walking, in my calves and shins. When I stop walking they quickly go away
And that doctor has no idea what they might be? I'd question his competence to be filling anything more than a cup of tea!
Those are typical symptoms of claudication, especially in the calves - due to inadequate blood flow to the muscles when they are asked to do more than normal, as in walking. It is sometimes seen in LVV (large vessel vasculitis) and PMR when the blood flow is affected by the vasculitis narrowing the blood vessels. When you are on the right dose of pred then they often improve if it is in the early stages and not too bad because the pred reduces the inflammation and the blood flow is improved.
You could speak to your GP and ask if it is possible to be referred to the local vascular unit for testing - usually they wait until you can walk less than a certain distance before stopping. But in the meantime, the first instruction would be to try to walk through the pain - and over time that should increase the distance you can manage without pain.
The rheumatologist said that he didn’t think the pain in my legs is connected to my PMR. He said that is not a ‘normal’ pain in anyone with PMR. I do walk through the pain. Or, if they are particularly sore, I stop for a bit and the pain goes away. Comes back again though lol
He wants to think again - and maybe ask a few patients! The number of things I have mentioned to one rheumy that she didn't know happened in PMR - then she asked her patients and discovered that there were a lot of things they didn't know about!
It MIGHT not be due to PMR - it happens to people anyway. But long term there IS an increased risk of peripheral vascular disease in patients with PMR and GCA. Especially if they develop diabetes.
I have foot leg and ankle swelling as well as tightness in my chest since the beginning of PMR and my rheumatologist now thinks it might be due to LVV and has arranged a PET scan to investigate. My legs have always been painful since the start of PMR and need a high-ish dose of Pred for me to be able to walk. I've had all sorts of other tests via my GP eg doplar tests and they prescribed support stockings, but they don't do anything, only Pred works. They are less swollen in the mornings so maybe elevation helps, but they get more swollen during the day even though I walk at least 30 mins per day.
I went through a period of swollen ankles - but the cardiologists seem to have sorted that out! Neither diuretics nor light support socks did anything. One thing that did was manual lymph drainage - one session targeting the worse leg resulted in an amazing improvement in both legs and haven't really needed it since.
All the doppler test showed was that your arteries were OK so you COULD have support stockings - not whether anything was wrong anywhere.
Thanks I wondered what it actually showed. At one point they mentioned about sending me to some type of lymph clinic but I put that on the back burner as Pred sorts it out and it would have involved trekking over to Bradford. GP also mentioned varicose vein surgery but there is only one vein that becomes prominent if things really swell up, which is the worse leg. I had all sorts of ECGs and blood tests this week too, doesn't seem to be anything wrong with my heart function. As I've been put on 20 Pred temporarily, the ankles and legs are near normal now and I have loads more energy. Am tempted to go for a long walk even in the pouring rain, just because I can!
Having read up on claudication in legs it does seem to fit with what I've been asking my rheumies for years - have I got some kind of vascultis? Interesting that some rheumies like Drs Mackie and Dasgupta and your rheumie in Italy are seeing PMR and GCA as being part of the vasculitis spectrum, I read the paper on it you posted last week (when I say read, mainly skimmed through the pictures). I wonder if the PET scan at the end of July will show us anything useful, hope so.
Just read up on claudication and it sounds very pain. I will speak to my GP about it. It went away for a long time and has only come back since the flare in April
After about 3 months on Pred for GCA my musculoskeletal skeletal health went down hill due to muscle weakness. It took next to nothing to hurt my muscles and ligaments. However, as PMRPro said it does sound like a claudication type symptom and ought to be looked at to be ruled out.
Pred+Sunshine is a problem - that combination can cause cataracts or if you already have them they grow. If you were spectacles, get them changed to Re-actolite Rapide. If not use sunglasses all the time when the sun shines.
My optician immediately changed my lens as I had the beginnings of cataracts, 14 years later, they have only grown slightly.
I didn’t know that about pred and sunshine. The optician never mentioned it. I got a baseline assessment by the optician earlier this year and that’s when they were spotted. She said it could be the pred that’s caused them but they also may have been there previously. Will now get recalled every year to check them out. Glad to hear that there’s not much difference in yours over the years
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