I have a Rheumy appointment this afternoon because I started to feel horrible about two weeks ago. She called me yesterday after receiving my latest bloods that showed ESR and CRP had both risen, for the second time. I sat down and did my analysis of what has been going on, and I have my own recommendation on how to get things back on track, but she may have other ideas. So, the Rheumy stretched my Actemra out to 4 weekly at around the same time I tapered to .75mg. At this point a blood test showed increased CRP/ESR but I wasn’t feeling any effect. She didn’t contact me. I continued on and at the point of reducing to .5mgs, just after my first 4weekly Actemra, I started to feel the old signs. That was about two weeks ago. I pressed on with .5mgs, due for my second 4 weekly Actemra on Saturday, but decided to check my blood to see what was going on. Bingo! Another increase. So she called to ask me to come in. I firmly believe it is the drop to .75/.5mgs, rather than the stretch to 4 weeks between Actemra. Two days ago I inceased to 1mg of pred and today I am feeling much better, almost “normal”. She won’t be happy with that but I have written it all down … the evidence is there. Does all this make sense, I’m rambling a bit but thought I’d check in before I see her.
An update …: I have a Rheumy appointment this... - PMRGCAuk
An update …
Who is the doctor who keeps his patients on a low dose of pred even after remission? I want to use his name this afternoon.
Professor Bhaskar Dasgupta.
I believe he's happy to keep patients on 3mg or so long term. This is from memory of watching his webinar so might not be correct but I'm sure the other will be along to confirm.
Thanks Coffeebeans, I just got back from the Rheumy and she plans to do just that.
Professor Dasgupta who is reknowned for his many years of research into PMR/GCA.
Thank you.
Yes, it does make sense and is helpful in reminding US that keeping and referring to records is so important, as is noting any changes in symptoms and possible links with reducing doses.I hope your appointment goes well and that your doctor appreciates your diligence.
Thank you 123-go. I learned the hard way to keep a diary, and I highly recommend everyone else do so. Logging stuff … doses, changes in progress, blood results, really helps to make sense of what is going on when something goes wrong. xx
Absolutely! Take care.
Your increase sounds sensible - can’t comment on the on the Actemra change though - so could be combination of both factors. Hopefully she will listen and agree with evidence.
I have written a report on the appointment below. She was happy for me to increase so that is a positive, given she has been ordering me off pred for months!
Have you ever asked her what she intends to do longer term if you get off pred altogether? I'd have thought a monthly TCZ jab plus 1mg pred was a VERY good outcome. Or are you restricted to the duration of the TCZ?
She has offered Leflunamide or Methotrexate if I am unable to manage on a very low dose of pred alone.
I still think that a moderate dose of pred alone is preferable to adding either of the other two for a marginally lower dose of pred ...
I’m so reluctant to start some other medication. I’m reassured to hear you say that because that is what I’m hoping for.
It MIGHT be different if they were guaranteed to get you off pred altogether. Or had no adverse effects - but neither is true.
I just read your response to my husband. It is exactly what I said when I arrived home this afternoon, and he said “thank #$*# that there is good support on your forum”. So, thanks again.
Well I have just returned and I am interested to hear what you think. It went better than I expected, and I have to say, she tries her best. She wants me to go to 5mgs for a week, reducing 1mg per week down to 3mgs and stay there. She also wants an immediate Actemra and then fortnightly. I reminded her that we went to 3 weekly because of white cell count but she wants to get the inflammation under control so blood test after two fortnightly jabs. She has to go to UK as her father died and then back to quarantine for two weeks so she booked a telephone consult with me from her hotel on 5th October, after blood test so she can plan the next move. She wants me to consider Leflunamide or methotrexate as a long term solution if I am unable to manage on 3mgs of pred alone. She’s happy for me to stay on 3mgs pred long term.
Okay…let’s hope it goes well for you, I’m sure you’ll keep us informed…
Well you are the only ones who I can talk to. No one else understands!! Thanks for reading my posts xx
Of course we do!!!!
It's so encouraging that your rheumy is working with you and giving you time to make your decision on a new medication. Hang on to that one! She sounds very caring. Good luck as you go forward. 🌻
Yes, she’s really fab, comparatively, and she called me last night and fitted me in today!!! Have to be grateful for that. Thanks 123-go xx
Thank you for this update. I'm on weekly Tocilizumab and tapering to 3.5mg pred, so it has given me 'food for thought' for what might lie ahead.
If you've already felt the benefit of 1mg, then it's hopeful that 3mg will do the trick.
Best wishes.
Hi Rugger, good to hear that you are doing well. Yes, two days at 1mg made a huge difference. It’s incredible to me, how such a small amount of pred can have such an impact. My tocilizumab has been 3 weekly for ages and that has been fine. I’m not going back to 5mgs, I’m going to go to 4, then 3, then 2 and stay there until I see her. I was fine at 1 so 2 should prove to be OK. A couple of fortnightly jabs to back it up and hopefully back on track.
Not rambling at all. You seem really on the ball. I would let you manage me. Reading lower down I see that your Rheumatologist respects you too and her suggestions seem sound. It would be a shame to introduce another drug but needs must I suppose, if Tocilizumab has started to cause problems. I hope it’s not necessary. Fingers crossed for you. I would be delighted to get to and stay on 3 mgs of Pred. I am at 8 mgs and weekly Tocilizumab currently.
Oh Jane, I was on weekly jabs but it affects my neutrophils so stretched out to 3 weekly which were working well. I have really dragged out my taper and to hear that you are at 8mgs is reassuring. Stay with it. If you can tolerate weekly jabs I believe you will be able to taper … to where, well time will tell, but I am always hopeful. No, no new drugs for me if I can prevent it. I’ll be happy with a low dose of pred forever if I am lucky enough to achieve it. You are so kind, I’m always thinking about you Jane.
There wasn't much difference between weekly and 2-weekly - except the adverse effects were far fewer.
My Rheumatologist is keen that I stick at weekly as being more effective. The rottenness I feel doesn’t seem to be made worse or better by anything I do. I occasionally feel great for no apparent reason. By the time I’ve announced it to my other half it’s gone. Sitting in a remote Irish cottage, staring at the sea, seems to suit me.🐌
Yes, it’s true because in Australia, you only have access to 12months for GCA or LLV. I have done incredibly well, I know and am grateful. I have an option to approach my local politician (for whom I have volunteered and so know him quite well) to lobby for me if I need the Health Dept to give me further access to Tcz. To be honest, I’m thinking that to be on a low dose of pred without the support of biogenetic meds is preferable. I’m in a hiatus situation. I need to follow instructions and 🤞 it will come to some kind of stasis.
I didn't mean to undermine actemra. Sounds like you are doing well and I think that is wonderful. I can't take weekly doses of it because it has a big impact on my blood. We each find our own journey and I don't judge and am hopeful for great results for us all. 😘
Will someone please tell us about Actemra?? What is it ? Is it available in the UK? Many thanks.
Hi Backfugue, I am in Australia so hopefully you will hear from one of the experts in the UK who can tell you about availability. Actemra is the brand name of a biologic drug called tocilizumab, which is used for the treatment of rheumatoid arthritis but has been effective in enabling patients with GCA or LVV to taper their dose of pred. It is an immunosuppressive drug that targets the IL-6 receptor and reduces inflammation. Most patients prescribed this drug are on it for a limited time because of the cost, so unless you have RA, you cannot stay on it indefinitely. It has been incredibly helpful in enabling me to reduce my 15mgs of pred down to 1 mg, but just recently I had breakthrough pain when I went from taking Actemra three-weekly to four-weekly, but I believe that it was just a dose of pred that was too low, and I have subsequently gone back to 5mgs, reducing weekly to 3 or 2mgs, where I will stay, probably forever, if I am lucky. As I said, one of the experts will come along and give you some perhaps more detailed information that hopefully will answer your questions.
Thanks LemonZest11, this is much appreciated. And good luck with reducing your Pred further.
Actemra / Tocilizumab (TCZ) is licensed in the UK only for difficult to manage / 'relapsing' GCA. It isn't a drug available for PMR. For GCA we are limited to a year's treatment because of cost, which is around £1,000 a month - it is taken by self-injection every week at £250 a shot!* Some of us are able to manage with fortnightly doses. As LemonZest11 says, it can affect our blood results and liver etc, etc, so it isn't without its side-effects. However, for some of us, it controls the inflammation and allows us to reduce the pred dose more easily.
I am on weekly TCZ and tapering my pred to 3.5mg, for GCA-LVV.
*Because of the pandemic, the allocation of TCZ in the UK has been extended to March 2022, so we have been fortunate in that respect. I will have been on it for 2 years by then.
In Australia the cost is subsidised by our Health Department, so each dose costs AU$10 (GBP6?), very affordable, but once the year is over, one cannot access another dose. I am in the process of approaching our Health Minister because I just cannot understand why something that is working, is made unavailable to patients. Anyway BachFugue, I hope Rugger and I have answered some questions.
In the UK, we get free prescriptions for our medication once we reach 60 years old, so the cost I quoted is paid for by the NHS and not the patient! Under the age of 60, a prescription costs £9.35, so all I would have to pay if I was younger would be £9.35 for 12 doses!! How fortunate I am.
Yes you have both been very helpful. Thanks.
Thanks Rugger, I see I have much to learn. Do you have any idea why Tocilizumab us so expensive? And as I have PMR and (hopefully not in the future GCA) it's not applicable anyway. And good luck with your rug making.
The process of getting any drug through clinical trials, as well as the cost of manufacturing such a complex substance all contribute to the cost of a drug. In the early days, the Pharmaceutical companies are wanting to recoup some of those costs by charging a high price. Later on, when it can be 'mass produced', the price usually comes down.
(At the moment, there's a shortage of Tocilizumab, as it has been used for some Covid patients.)
After many years and being a more simple molecule, pred costs just pence!!
All biologics are very expensive (relatively speaking) - as well as the factors Rugger mentions the manufacturing process is not just a case of pressing a chemical into a tablet.
archive.bio.org/articles/ho...
Very interesting article. "The product is the process" reminds me of Marshall McLuhan's well known adage regardingmedia theory, "The medium is the message". Unrelated but not dissimilar.
It is a monoclonal antibody biologic medication which stops the body producing the inflammatory substance IL-6 which is one of the 3 mechanisms that have been identified as causing GCA. It works to get about half of patients off pred altogether in 6 to 12 months when started immediately after diagnosis as in the clinical trials. It isn't entirely clear how quickly/effectively it works when used retrospectively. The other half of patients get to a much lower dose of pred but still require some to prevent symptoms returning.
It is available in the UK but only under strict restrictions as stipulated by NICE - as Rugger has explained. I think you have to have GCA that was confirmed by biopsy or ultrasound and it must have relapsed despite management with pred.
It too has side effects - ironically including weight gain - but does induce remission which persists for variable times after stopping the injections. In my opinion rather unfairly, it is approved for use in RA without the same limitations.
Thanks Dad2Cue, very informative and glad to have read these.
It does make sense and Actemra is a relatively new drug. Doctors are still learning.
I hope this is the beginning of the end of this disease for you. X
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