Hello Everyone, I’ve been sitting on 2mgs of pred since mid October and attempting to stretch my TCZ jabs out to 4 weeks. I haven’t had a blood test since 1st December, when all was well, so thought it time to check in with bloods before having my 2nd 4 weekly TCZ jab. Rheumatologist sent me a text today to say that CRP is up to 10 and to go back to 5mgs pred for a week and then down to 3mgs. Do you all agree with this?
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LemonZest11
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Seems fair - obviously the a/i bit hasn't entirely gone into remission during the TCZ course for you. That's a shame. No way you'll get more TCZ is there?
What’s the a/i bit PMRpro? AutoImmune? You are correct, and stretching the TCZ out to 4 just isn’t working. I’m fine on 3 weekly, though when I got to 0.5mg, at the same time attempting 3.5weekly TCZ, I flared. No, I can’t get any more TCZ, unless I approach my local politician, which I could do but I don’t seem to have the support of Rheumy. I still have 10 jabs left, at 3 weekly I could go for another 30 weeks but what then? Conundrum.
If 3 weekly is working for you and 4 isn’t, then I think you have your answer….and a lot can happen with your GCA in 6 months. ….
Know what I’d do, be comfortable in the present, and fingers crossed for future.
Thank you DorsetLady, 3 weekly it is.
…and yes as Rheumy says for increased Pred….
Thank you. Just like to get the confirmation from the experts here. Appreciate it.
Yes - sorry, shouldn't have been lazy 
As DL says - a lot can happen in 6 months! TCZ gets half of patients off pred entirely - the rest seem to have a different mechanism causing the inflammation that is left, there are 3 different known mechanisms, TCZ works for one. GCA does burn out for pretty much everyone sooner or later, 4 to 5 years seems common but sooner does happen and 4 years will be up by then won't it.
We'll all have our fingers crossed for you - make the most of it in the meantime.
Aren't you watching the tennis? Well done Ash Barty - I was getting a bit worried in the second set though!
Yes, watching the tennis, feeling very proud of Ash. Thank you for being so kind. I’m shedding a bit of a tear knowing that I’ll just have to remain hopeful and enjoy this pain-free time. Sounds selfish, I know. I was so hopeful. Ah well … onwards. Think I might have that chat to my local polly though, you never know 🤞 You and DorsetLady and Sheffield Jane are just so generous and kind, while all the time juggling your own challenges. Thank you so much.
My challenges are minor….except today up at 6am….normally unheard of.
At son’s and we went to watch racehorses going through their early morning ride on the gallops at nearby trainers yard. DIL joined syndicate for Xmas present for son..so they “own” one 20th of a horse!
Don’t think they are going to make a fortune ….. but son, like his dad before him, does like the sport. Late hubby and I used to like a day out racing when we could…
How exciting. I have a friend who has become involved in that world recently, through a romantic connection. Today she was urging us all to vote on a website for their silks. I have no idea what it all means but I see pics of her on fb looking gorgeous and having fun. Exciting world. I hope your son and DIL enjoy themselves, and you too!
I think it is having those challenges that help us do it. We are grateful when someone helps us - so it's passing it forward.
Stay hopeful - it will happen, just when you don't expect it. And your polly might come up with the goods - they have to do something good in life surely
Yep, they do, and he’s a good one. I have done many a letterbox drop for him, I’ve even door-knocked. He’s our State member, he’ll need to plug me into the Federal Health minister (or his underlings). A project for next week. Still watching the tennis, not so proud of our Kyrgios, he’s a bit of a clown. People seem to enjoy the antics of this doubles team, always looking for the laughs!! Thanks again. I hope you realise the difference you make. 😇
I was just going to ask that - I remember being in a Greek restaurant in London while he was playing in that first big match at Wimbledon and the owner was going nuts! However - his messing about can all so easily be taken as disrespectful. I do like doubles though when it is good
Agreed. 🎾 Thanks for cheering me up.
GCA burns itself out after 4 years ? If I’ve had it for four years do I need to still taper slowly?
I didn't say that - I said that that seems a common time for GCA patients to need pred before being able to stop. Some people need less time, others need longer. I know of people off pred in 2 years - but they really are very rare and a couple had a return of symptoms a couple of years later.
The only way you know is to taper very slowly and if you can reach zero pred and then stay off it without a return of symptoms then the GCA has burned out and gone into remission. No other way to know - there are no tests that can be 100% certain.
That is very good to know that GCA burns self out after 4 -5 years. Does that mean you don’t have to taper after this time
That is very good news to hear that GCA burns itself out. Does that mean you don’t have to taper slowly? ( after 4 years?)
No, because as PMRpro has said there is no set date for it going into remission-and if you’ve been on Pred for a long time you need to continue slow, or slowish tapering to help adrenals re-awaken
Thanks DL. I’ve been through the mill and will continue on my your Tapering plan even though it’s so slow at this High dosage but it’s working!
It might be slow but if it works - that’s the main thing. …
So far so good. Thanks again for everything that you’ve done for me on this journey. Take care of yourself and stay safe
If I had another 30 weeks of TCZ, I know what I'd do! My allocation will run out in a couple of months. 😟
A year ago, I flared at 1mg pred and my Rheumatologist put me up to 5mg - the difference was she kept me at that dose for 8 months!! I've been tapering at 0.5mg a month since then and I'm now back to 1mg again.🤞 At this rate, my TCZ and pred will run out at the same time - then what? 🤔
Enjoy your pain-free time and long may it continue. Club Zero membership means nothing if we're in pain!
Thanks Rugger, it seems we have much in common, as we did at the beginning. I have 30 weeks if I take it 3 weekly: 10 jabs left. The pred never runs out, does it? I was hoping to taper off TCZ but it seems I can’t, I need it. But I need the pred too, I flared at 0.5mgs pred but my Rheumy put me back to 4, then 3, and 2, weekly. I’ve been on 2 for months now. Should be back on track in a week but I’m going to run out of TCZ and then it will be “game on”, to use tennis parlance, since I’m watching it. I’m thinking of you Rugger, you haven’t had it easy, have you? xx
Quite right - the pred doesn't run out, thank goodness! I just meant that my tapering will have reached zero, if all goes to plan and by sheer coincidence, that will be at the same time as the TCZ runs out. I would rather stay on a low dose of pred for longer than start another DMARD. I'm seeing my Rheumatologist in a couple of weeks to discuss it all.
I hear you. I'll not attempt a taper beyond 2mgs. I'm sure we'll talk again soon. Thinking of you.
Fortunately I am not experiencing any debilitating effects, slightly sore knees that could be unrelated. But the inflammatory markers indicate that I'm a sitting duck so hopefully nipping it in the bud before disaster rears her head. I need TCZ and I need to work out a plan for the future.
You've got GCA? In my humble view, I wouldn't hesitate! why can't you get more TCZ - world shortage?
Yes, I do. In Australia the Government has approved TCZ for 12 months only, for people with GCA. My allocation is coming to the end.
Not quite as simple as that…..different countries, different protocols.
I suppose, Dorset Lady, you don't know what our NHS view is on this, do you?
At the moment it’s usually only authorised for certain GCA patients (Rheumy has to apply, but criteria is quite strict) on an annual basis , and then at the end of that 12 months it’s reviewed. That timescale has slightly slipped because of Covid. …and there was a worry on shortage last year because it is also used for Covid patients.
See this - england.nhs.uk/coronavirus/...
Thanks for that, Dorset Lady. I've been having a lot of trouble reducing - which is hardly front page news. I was on 10 in June and I'm now on 11 and a private rheumy in London, who specializes in GCA/PMR, suggested TCZ as MTX apparently doesn't work very well. According to a member of the charity, it has never been approved for use for GCA. Professor Dasgupta also recommends TCZ (on a charity talk). I'm experiencing so many side effects from all the drugs that this current course of 'action' isn't working. I know it costs about £1k a month but without an alternative solution, I think I'll probably have to pay for it myself as there doesn't seem to be an alternative.
Can you get your Rheumy to make an application for you? It has really helped me to taper. I don't need it weekly, 3 weekly has been sufficient for me and so I have made my allocation last longer than the 12 months. Apparently it doesn't work for everyone but I think it's been worthwhile for me.
Thanks LemonZest! I'm glad to hear that the drug has been good for you. And three weekly sounds much better than weekly.
I can't see a rheumatologist until June and they have now closed the helpline - so absolutely no access to help. My GPs have said that anything to do with the diseases have to go through the hospital - that includes any discussions on reducing. I'm not sure I'd have any trust in my GPs as on Friday I asked for my latest blood test results and I was told that 'no further action was needed'. I asked for a copy and when I read it, it stated very clearly that the test for ESR had been corrupted so it needs to be done again. I am writing to the senior partner of the surgery. God it's a battle at times!
But as I said, I'm glad to hear that it does work for some people. Hope you have continued health.
Oh no! How awful. I'm sorry that you have to wait so long, hopefully you can continue to manage things until your appointment. Sometimes it's just not fair. This is a fabulous group with such generous experts ... stay in touch and I'm certain they'll support you.
What’s never been approved for GCA?
TCZ has - but as I said only in certain circumstances….
MTX is used for rheumatoid arthritis, psoriasis and some cancers, and as a steroid sparing agent in GCA/PMR , but not for those diseases per se.
Personally have no experience of either, TCZ hadn’t been approved when I had GCA, and fortunately never had issue reducing Pred.
Not sure how easy it is to get privately, and unfortunately you’ll know if it’s for you until you try.
How long have you been diagnosed…can’t see that on your profile, know you joined this time last year….
..know you don’t want to hear it, but just wondering if you are expecting too much too soon…
Of course I'm expecting too much too soon - what other way is there? I'm the impetuous one!
I was diagnosed in November 2020. I was on 10mg last June and I'm on 11mg now. I don't seem to get very far. I'm also experiencing a lot of side effects. So I contacted Dr Hajela who is a PMR/GCA specialist who advised me to take TCZ as I could be playing this snakes and ladders game for some time. I think Kate Gilbert advises steroid reducing drugs in her book - not sure, I'm re-reading at the moment.
Many thanks for your time and advice x
Kate probably mentions methotrexate and leflunomide as I don't think tocilizumab was available in the UK when she wrote the book. Both are classed as steroid sparers, there is no real study evidence for either and the best that can be said is that they seem to work for some patients but not everyone and rarely get a patient off pred altogether, just to a lower dose. Both have their own set of adverse effects, for me, the downside of methotrexate was infinitely worse than anything I've had with pred.
TCZ also doesn't work 100% for everyone, about half of patients are able to get to a lower dose of pred, often 8-10mg, because there are at least 3 different underlying causes of the inflammation in GCA and it only works on one of them. If the other two are involved, you still need some pred to manage the inflammation they cause.
But for all of them - you can only find out by trying.
All of this is solid information and background for my argument when I meet with my politician soon. Thanks.
Kate does mention TCZ in the 2nd edition. Thanks for your time.
That's good - will file it for reference.
She only talks about the early signs of TCZ are looking good. Her 2nd edition was published in 2016. Professor Dasgupta also echoed her thoughts in the same year. I have found several favourable reports online for TCZ so I just might break open my piggy bank!
Unfortunately impetuosity doesn’t often work with GCA or PMR as many have discovered…..so even though it might not be natural (says she who’s been known to be that way inclined 🙈) …you have to be a bit more patient.
"According to a member of the charity, " - not that I want names and packdrill in public, I'd be interested to know who is under that misapprehension! They need to be corrected.
NICE gave limited approval about 3 years ago I think - certainly pre-Covid. Funding has been available for a limited period of 1 year for relapsing GCA or cases that are difficult to manage with pred alone. Due to Covid, patients who were already on it had their allocation extended. I think each rheumy must apply to their local funding committee. There are also problems with supply because it is used for severe Covid - that should improve as the company sorts out its production.
Gosh! Gasp! I can never reveal my source, Madame Ambassador! I shall inform 'Deep Throat' of their error myself! But many thanks for clearing that up.
Do you know that I almost feel like a 'grown-up' on this site these days? A year ago, I lived my life in a mist and often wondered what the hell everyone was talking about but now that I've lived through so much and, of course, learning from conversations on this site, I feel I can actually converse with people. So nice but still such a shame we have to all be here.
You're funny. 🤸♀️
I think the supply problem is with the epi-pen variety, but the syringe version seems to be ok.
So sorry! But what does TCZ stand for?
The drug Tocilizumab - brand name - Actemra -
rheumatology.org/I-Am-A/Pat...
Since 2016/17? some GCA patients in UK use it but not many (and usually authorised on an annual basis - expensive), used more widely for rheumatic diseases..
Other countries use it more for GCA which is why it gets mentioned quite a lot on here.
It has been used successfully for Covid patients
Thank you, sounds similar to one I have been prescribed: Amgevita, brand name Adalimumab.
Not exactly - adalimumab/Humira IS a biologic but it is one that is classed as an anti-TNF agent which don't work in GCA and PMR. They are used a lot for RA but are expressly warned again for PMR as being ineffective and with potential damaging effects.
That is worrying, started yesterday, worried about side effects.
WHY have you started it? For PMR? Or have you also got RA?
PMR
I would want to know why.
ard.bmj.com/content/74/10/1799
In the Summary in Box 1, Recommendation 8 under Specific Recommendations says
"The panel strongly recommends against the use of TNFα blocking agents for treatment of PMR."
Excuse my ignorance. What are TCZ jabs?
See my reply above to Bedwell and Photojournalist
Goodness! Thanks
Thank you for your reply. Definitely need to chat with him more on my next visit in 3 months. All along he has said PMR but struggling on 7.5 mg Pred so trying this as I continue to taper. Do anything to get some normality and energy back into my life!!
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