Morning. Just spend 2 days in A and E and acute medical ward with big flare up - jaw pain and enlarged auxillery arteries and CRP levels at 42 had in depth eye test - luckily no vision loss
Rheumy has now upped the pred to 60mg and recommends I seriously consider taking Methotrexate along side but in injection form.
Ordered an amazing book by Kate Gilbert - Polymalgia Rheumatica and Giant Cell Arteritis a survival guide - definitely worth a read
Not sure what good he thinks MTX will be - tocilizumab is the stuff he should be considering if he isn't getting the GCA under control. The option to use it is there, albeit limited in the UK.
Sorry it hear about flare - agree with PMRpro re MTX though… and a slower taper overall would probably be a good start.
We often recommend Kate’s book.. and there are some good pointers in it, but there are lots of people on here who have first hand experience of living with GCA.
Plus what you get here is probably much more up-to-date. A book is frozen in time.
He’s given me new taper sheet which goes from 60 - 4 weeks 50 - 2 weeks 40 - 2 weeks 30 - 2 weeks 20 - 2 weeks Do you think this is too fast?
My comment as always would be I’d prefer at least 3weeks at each dose -even though I know most guidelines state 2 weeks. Then once at 30mg, 5 mg a time..
But as always, you’ll have to see how it goes… so fingers crossed..
If it works it isn't too fast - and you have to try to find out. But we tend to err on the side of caution because when it is too fast, you end up taking far more pred. If you go a bit slower, then there is less risk of a flare and you don't go back up to the really high doses. They, on the other hand, have become so terrified of pred that they go at it hell for leather, miss the dose you need and cause a flare. The more that happens, the harder it gets as you yoyo the dose.
That was the taper schedule I followed. I had no problem but was also on Methotrexate as well.
Hi DL. Just ordered Kate Gilbert's book from second-hand site. Am I allowed to name the site or is that advertising?
No problem, in my mind, others do mention websites... so long as you aren't benefiting financially by doing so - and I'm guessing that's not the case!😊
World of Books! 👍
someone in my band has lent me that book! I found it very interesting and useful 🙂
I got Kate Gilbert’s book when I was first diagnosed with PMR. I then handed it on to someone else.
Have you asked anyone about taking tocilizumab? I agree with the others much more sensible than offering you Methotrexate.
I ve never heard of tocilizumab - will have to enquire at Rheumy appointment next week. Thank you x
Rules used to be that Rheumy has to try you on MTX and/or Leflunomide initially, and if they do not work then TCZ may be considered. Don’t think it’s changed.
This is original blurb -
nice.org.uk/guidance/ta518/...
Thank you for that info. If it’s all down to cost then I’m sure it won’t be offered on nhs. I’m still not happy they want to put me on mxt after such a short time on pred and would like to see if I can taper down again slowly instead, especially as it doesn’t affect the dosage anyway and just another drug that has huge side effects. We will see what doc has to say !!
It’s not all down to cost - but you probably will have try other drugs first to prove you do need it..always worth asking though.
Tocilizumab is a modern biological therapy. It is worth asking your Rheumy. It is quite expensive which may be the problem it is not mentioned.
Tocilizumab worked for me. Felt well whilst taking it but now my year has come to an end . Leflunomide is my next drug but it doesn’t seem to be working half as well as Tocilizumab. Methotrexate didn’t suit me as it played havoc with my liver function. Good luck.
I had my 'ration' of Tocilizumab (limited to 1 year in the UK). As far as I'm aware it is prescribed for "relapsing" GCA / LVV, when other things have failed. As you are relatively recently diagnosed, I'm sure that's why your Rheumatologist isn't yet considering it. Because of the 1 year limit, the problem is what to do when that comes to an end!
Best wishes. 🌻
The patent on actemra tocilizumab has now finished and there is another company, think it’s under the name tyenne, making it for less cost. Some people in the UK have been able to get this after the 12 months have been completed. Just thought this might be of interest. I’m hoping for this when I complete my year in December.
Hope you can, but I think the criteria for new patines may still apply - ie. frequent relapses - as per NICE document - cks.nice.org.uk/topics/gian...
How should I manage relapse -
"If the person has recurrent relapses — initiation or modification of adjunctive therapy (such as methotrexate or a biologic) will be considered by the person’s specialist."
Basis for recommendation
"Adjunctive treatment (for example with methotrexate or tocilizumab) may be considered, in combination with a glucocorticoid taper, in people who relapse or are at high risk of glucocorticoid toxicity [Mackie, 2020a]."
My Rheumatologist says "No" to the alternative to TCZ, as the 'rules' are still the same - and she's an world expert in PMR, GCA & LVV. Others may be bending the rules, but she wouldn't.
She may be right and I may just have been hoping! There seems to be evidence that the relapse rate is significantly reduced when 24 months of treatment is compared to 12 months though. Do you know if it is possible to pay for the second year? I guess the NICE guidance may still apply.
Someone DOES pay for it - seemed rather complicated though. You are still looking at IRO £12K a year for weekly. It is part of the reason I am reluctant to come back to the UK - I've been on it for 2 1/2 years and it has got me from nearly 20mg pred to function to 7mg but I can't get lower.
The new product apparently costs 7k per year for weekly so a big saving. I see rheumatologist in a couple of weeks so I’ll see what is advised. Thanks.
I'm managing on 2-weekly - if there is a way of paying I would if I had to. But my diagnosis here now says inflammatory srthritis and it is approved for that without limit in the UK.
Think that question has been asked on here before, but not sure who.. done a quick search but can’t find what I’m looking for..
LemonZest11 pays for it in Australia. You can read about it in her posts and replies.
During the early months of the pandemic, the one year limit was extended to save us having to travel to & fro to hospital to be established on an alternative regime. Therefore, I had 24 months, but still relapsed! That's me, but there may be others for whom 2 years has proved beneficial. I was really well on TCZ and it allowed me to reach zero pred, but a few months later, my inflammatory markers rose again.
PMR: 2016
GCA-LVV: 2019
Does she pay? I thought it was a special arrangement ...
Post 2 years ago stated this -
I decided against the public hospital trial path and approached Roche directly. Through my rheumatologist, we achieved approval for subsidised access to 60 weeks of TCZ.
Suppose that could mean she's paying something ...
Sounds like it..
Yes, I have a feeling that’s what will happen to me. We’ll see I guess.
Sorry, this was a reply to Rugger about relapsing after TCZ.
Yes - it says you are replying to Rugger!
IT issues again
Turning up again...how much?
Do I go up again?
How does it feel when PMR goes into remission?
