As you might remember, I have been on Actemra since 2020, prescribed for LVV. At the end of June, blood tests showed that I had relapsed, although I had no physical symptoms. I had been off pred for 68 weeks and had stretched the Actemra tabs to 4 weekly, and had had 12 jabs at 4 weekly intervals when the relapse was discovered. After the 9th 4 weekly jab I noticed that I had pain in my right calf when walking, but only when I really pushed it. I ignored it because we were going to Greece and thought it might be my imagination, yadda yadda!! My rheumatologist organised a PET after the tell-tale blood tests on y return, and put me on 25mgs of pred and back to weekly Actemra. The PET and a CT Angiogram showed that there was indeed a return of LVV and my calf showed inflammatory damage from the relapse. After tapering down to 10mgs, Rheumy asked me to return to 25mgs for a week, to see if it would get rid of the inflammation in my calf. It didn’t. Yesterday she asked me to go to 50mgs because she thought the damage showing might not be permanent, but I said I didn’t want to and she agreed to stay on track with our planned taper. I don’t know what’s going on … does the calf pain sound fixable or do you think it could be permanent damage that I either live with or consider a stent? I’m raving on I know, but just want to get the story straight. Everything else is fine, PMR or LVV pain whatsoever, just a twinge in the calf under pressure.
Update on LVV relapse, and thoughts please? - PMRGCAuk
Update on LVV relapse, and thoughts please?
Does sound as if it might be a sign of claudication which indicates PAD (Peripheral artery disease) which does sometimes occur with LVV.
I think if I were in your position, I might have been willing to try the increased dose [for 2-3 weeks] to see if that helped. Depending on that, then you could discuss options.
Others with more experience of similar will be along.
Best wishes…
Oh really? So DL, does that mean that you think it might be “fixable”?
Well most things are fixable... but some more difficult than others... but you need to ascertain what it definitely is to do that. If a higher dose of Pred help that might be a starter - I guess that was Rheumy's thinking as well. However we might both be wrong.
Yes, thanks DL. She’s thinking it’s been caused by the untreated inflammation and because it’s relatively new, she said the treatment would be higher doses of pred, if the scarring is not permanent. It’s been 3 months of undiagnosed relapse and I guess I just don’t want to muck around with upping and downing again. It’s not that bad and currently it seems that everything is back under control. I appreciate your opinion, I really do. But yes, we can’t really be sure. Sorry to prattle on, but I suggested that I go off Actemra for a few weeks to see if the inflammation shows in blood tests. She wants to press on. We know that you can’t measure inflammation in blood tests when on Actemra and she’s aware of this. I think she has a plan. Just when you think you have it sorted … grrrrrrr!!
You can check for inflammation, just you can't use CRP and ESR and if the inflammation is suppressed then all markers are likely to be suppressed. The doctors the German member sees in Freiburg (I think) use serum calprotectin as a marker. How valid it is I don't really know.
I’ve heard of that. I was under the impression that you can’t get a true measure of inflammation through blood tests when on tcz. But PET or CT can show that but then we have to deal with radiation and I’ve already had my quota for now and anyway, those kind of tests are expensive and perhaps better allocated to more serious patients.
Fully under you don't want to mess about with pred- but 2 weeks is ok to see difference [if any] and then drop back down to 25mg.
Re you reply to PP re what happens when you walk is typical of claudication - similar to what happens to jaw when eating...
.. and yes grrr... 😠
Oh thanks for being so kind DL. Perhaps I’ll give it another think. Maybe I’m being too stubborn and irrational 🤷♀️. Xx
.. I recognise stubborn very well.🤣😂
There is a little bit of us all in each of us on here. That is why it’s such a safe and comfortable place to be. Thank you.
"my calf showed inflammatory damage from the relapse"
In what way? What is damaged?
Hi PP, I can’t read the report myself until Monday but doc said that there is thickening of the arterial wall … scarring? She offered to send me the report but I said I’d wait until Monday, so not very helpful am I? I feel the narrowed supply as an ache when I pump the walking.
PAD I suppose - peripheal artery disease. I thought that is amongst the known potential sequalae of GCA. If there is scarring, not sure than even more pred would help. A vascular specialist might have views on that. And their immediate response would almost certainly be to walk - the term they use is "walk through the pain", i.e. walk until the pain develops and walk a bit further as far as you can before stopping, By doing that your system is encourage to develop collateral blood vessels which take over the job the damaged artery can't do. Think of it like the motorway being blocked so you take the side roads to get round the blockage - but magically, the side roads grow to accommodate the extra traffic!
Thanks for this. Yes, I felt reluctant to up the pred again because of all that involves and if scarring is irreversible, well then that’s it. Walking through the pain is what I have been trying to do. I got a bit worried that I might do more damage, but ignorance will do that. What you’ve said makes sense and is very encouraging. It’s not like a clot in there that might be dislodged and go to my brain or heart through exertion, right? So keep moving? On one of my walks I had the instinct to continue through the pain and I did for a while and it actually plateaued. But then I rested for a couple of minutes, and continued.
No - clots are in veins. Yes - that is what should happen and continuing sends messages to the body to grow more blood vessels - angiogenesis it is called and very clever!
I think that patients with LVV should be monitored more closely - whatever they are on. They should be aware that PAD is a risk due to the potential damage the inflammation may have caused to the inside of the vessels and the patients told what to look out for.
Thank you PP. Very helpful. What a great team you and DL are. Really appreciate your knowledge. You have given me something to pass on to my doc, and also, to work with myself.
I think what has happened is that after I tapered off pred, the tcz kept things under control. No remission here. But when I pushed it to 4 weekly tcz, that bloody dripping tap started and after 9 jabs at 4 weekly intervals, the old devil wove her magic and my leg started to bother me. It didn’t register until the bloods revealed the truth some time later. But NO symptoms, other than an “unrelated” leg issue prior to blood tests. That LVV is a wicked one indeed!!!
I wish I had "X-Ray eyes" to see what's going on with my LVV - frustrating, isn't it? My LVV first came to light because I complained of pain in my legs!
My UK ration of TCZ expired 2 years ago and since then I've been back on pred at various doses. Thankfully, we can monitor my CRP & ESR & PV to give an idea how the inflammation might be under control.
I'm thinking that your situation shows what can happen when we don't take enough of a prescribed drug. If someone with diabetes took only a quarter of their insulin, their blood sugar would soon rise - but in their case, they could monitor it on a daily / hourly basis.
I suppose it's the same as when someone with PMR tries to manage on too low a dose of pred and they're still in pain.
Thinking of you - keep on walking! 🚶♀️ 🚶♀️ 🚶♀️
Nice to hear from you. I guess it was all just in the attempt to taper the tcz, rather than merely taking a quarter of the prescribed drug. At some point we need to test it and test it we did. All good though, and PMRpro's useful knowledge about training other avenues for blood supply is great news. I hope things are going well for you!
Yes, I realise you were hoping to taper and then not need the TCZ eventually and there was only one way to test that. I hope you'll soon be back on track.
I'm on pred alone, at 3.5mg just now, but wondering if I really need 4+! What a juggling game this is after 8.5 years, but we're still here to grumble (or not, as it doesn't help!).
Let us know how you get on - I know you will.
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