Hi everybody,just need a bit of advice/reassurance from the forum if I may? Rheumy is having a n ENRAD meeting next week to discuss my case and if I can have TCZ.I am currently on 7 mg of pred after a very quick taper for eye pressure and I have told Rheumy that I want to stay on this dose until I know the outcome of the meeting What I really want to know,if I was turned down for TCZ or if I decided not to have it,what would my prognosis be and how would I safely taper ?I seem quite reasonable at present ,obviously if I over do it I suffer next day but last bloods were pretty ok!All such a minefield for me,Diagnosed Dec 22 with GCA and sight loss in one eye,2 relapses since.I seem to get much better advice from you all here and feel much reassured by it.Many thanks in advance x
To TCZ or not to TCZ??: Hi everybody,just need a... - PMRGCAuk
To TCZ or not to TCZ??
If you are offered it, then try it, nothing to lose. But at the moment you will only get it for a year, although the charity is working hard to get that changed - see this posted earlier today -
healthunlocked.com/pmrgcauk...
As you were reduced quickly because of eye pressures, do you know what they are now you are down to 7mg? Hopefully back within normal ranges.
TCZ hadn't been approved for GCA in my time, so cannot give personal view on it, but I managed to get to zero without any issues {having lost sight prior to diagnosis]... but then I never flared... although eye pressure were slightly raised on v. high doses, they soon returned to normal.
Best of luck...
Hi Dorset lady,many thanks for getting back to me,.My eye pressures about 3 weeks ago were down to 18 L and 19 R.Eye clinic seemed happy,just continue with drops .Back in 2 months .I would dearly love to be like you and just take the pred,never been one for pills,always healthy but I know that they are my “friend” .Because I have had such bad luck with the Metho and Leflunomide I just feel “stuck” as to what to do.Maybe I should just take it if it is offered,but wish I had a crystal ball to see if I could just successfully wean off pred,and not have anything else! I think that you wise people were right about the “racing tapering”.Probably did not do my body any good at all!Do you think that if I told them that I would like to go on a really slow taper(7 was my lowest dose before I flared),and see if I fare ok ,but take the TCZ,if I am offered it,if I flare again?Sorry to be a Numpty!xx
Join the queue for the crystal ball.., 🔮
At 7mg Pred, I think most of us would feel like you regarding adding in another med especially after experience with MTX & LF -and say let me reduce really slowly…
TCZ is not a 100% guarantee (but what is) for many it works well, but there are some when it doesn’t. But you won’t know until you try, if it cause issues you can just stop it. However, if you refuse, doubt it will be offered again should you get into difficulties.
It is a difficult decision-but I’m afraid it’s yours… 😊
Thankyou Dorset Lady,maybe they will turn me down,then I won’t have to make the decision,but guess I will just take it,and hope it treats me better than the other DIMARDS.As you say,if I turn it down I might not get it again,so shall bite the bullet(hope I don’t sound ungrateful?),and give it a try.AND I shall tell Rheumy that I want to stick on the 7 mg of pred for 3 months and then reduce 1 mg every 6 weeks or so.Hope I am correct on that !Many thanks again.x
If offered, give it a try… as for reductions of Pred… yes 3 months on 7mg , it takes time for TCZ to get working anyway… and maybe only 0.5 mg every 6 weeks… particularly once below 5mg.
Thankyou very much.Will write the dosage down and tell Rheumy when I speak to him,X
Give it a try if offered it, you have nothing to lose - but I hope your doctors are bearing in mind it only works 100% for half of patients and the other have continue to require some pred to manage the inflammation caused by the other two underlying mechanisms for inflammation in GCA and which DO NOT respond to TCZ, 8-10mg seems to be a common sticking point in that scenario,
To be truthful PMR pro,since I have joined your forum I have realised that maybe that they do not know too much ,unless they are relying on me to tell them .???When I spoke to the Rheumy nurse on wed.I had to tell HER that upon advice given by someone,I am not dropping from my current 7 mg ,as they still wanted me to drop 1 mg every fortnight until zero!😱😱😱.So just a waiting game now .Many thanks again for your input.x
I'm speechless - an unusual situation for me!! TCZ takes at least a couple of months to work fully and anyway, at this stage the speed of reduction will be governed by return of adrenal function. Did they really not realise that would put you at risk of an adrenal crisis?
I think PMR pro,that as I have heard SO many times on this forum,that all they really want to do,is to get us all off the pred ASAP!Maybe if they had to cope with all the ups and downs we have all experienced ,maybe they might be a bit more cautious!They even contacted my doctor and said I don’t want to drop from the 7 mg yet!2 flares in 16 months,I told them I don’t want another,especially as I have no DIMARD back up!Thank god I found this forum,just do not know what state I would have ended up in!Starting to be a bit braver with them ,now I have REAL knowledge.Thankyou!xx
I have been on TCZ (in the States) and prednisone since October 2019. I've never thought of it as a substitute for pred, but I think of it as an 'assistant' and 'facilitator' in conjunction with prednisone. I started at 125mg pred in 8/19---can't remember what my numbers were 'but high and afraid of losing additional vision'. With TCZ, I dropped to 80, then 40, but finally got to 10 this year, and on the 18th, I'll drop to .05mg!!! My rheumy will have me continue the weekly injections
It is certainly worth a try, and I never experienced any side effects. As the other gals have said...you have nothing to lose. I've found it very reassuring and I sure hope they offer it to you.....and you grab it~!!
PS Even though my medical (intestinal/bowel) history did not make me a good candidate; it has never caused an issue. My best...💞
Thankyou for your input Grammy 80.Looks like I shall listen to you wise old lot!PS I LOVE blueberries!🐈🐈🐈🫐🫐🫐🫐
Looks like I shall listen to you wise old lot!
Not so much of the old if you don’t mind! 😳Age is just a number ….😊
You are right!I am 71 going on 101!Methusalah is my middle name!xx😜😜😜😂
Yeah!! Watch who you are calling old...🥊🫵🏼....thanks, DL.💞
I have been on TCZ since December with no problems. Closely monitored with bloods and consultant appointment. I have managed to reduce prednisone to 5mg for the first time. Seems to be helping me but it is another decision on this long journey.
Thankyou Smelly dog,so grateful for everybody’s input.Just the thought of ANOTHER drug,after having bad reactions to Metho and Leflunomide.Such a long journey,but now I know I am not alone on it,so thanks again!x😜
I too have been on Tocilizumab for nearly a year now. My last delivery will be in June. I’ve not had any side effects. I was on Methotrexate too but my liver function was all over the place even at lower doses so I’ve ceased taking it. My rheumatologist wants to try me on Leflunomide when I have completed my year of Tocilizumab. What side effects did you have for this particular drug?
Hi Noni71,Thankyou so much for your input on TCZ.Regarding Leflunomide,please don’t think that because it was not right for me,it won’t be for you!I had eye pressure readings which were quite high,now resolving with eye drops,total fatigue,and chronic diahorrea.All problems practically resolved now,but I know that everybody is different so it may be good for you,so don’t put off taking it if you want to.Same as me,if I go on TCZ,it may not be good for me,but ok for lots of people.Everyone of us is different,we just share the same illnesses don’t we.Good luck to you,and let me know how you fare if you go on it.x😜
Raised occular pressure is not an effect of leflunomide, it is caused in some patients by being on pred. The fatigue and diarrhoea were probably due to leflunomide - though fatigue is part of GCA anyway and some people find pred causes it.
Hello Angelsmummy, late to the thread… I had TCZ for the allowed year, it was fine in my case, then 5 months after the last dose I had a flare and went back up the ladder from 2mgs Pred to 40… now back to 10, with Leflunomide as the current DMARD. If you’re granted it, I agree with the others … do try it.
Thankyou Frewen for your reply.Guess I shall take it and keep everything crossed!Good luck and health to you!x😜
🙏😊xx
I don't have anything to add as others have made great input. But brilliant you have found this forum as it's been my saviour since the start of my LVV journey. I was offered TCZ very early on and it helped me get down to 4mg But like Frewen1 I flared after stopping. Struggled a lot to get below 10 and now trying 8 to 7.5 but my rheumy wants me to do it over 8 weeks which I am happy about. It must be a huge worry for you. I think the slower approach seems to have a far better outcome. I didn't have too many side effects with TCZ and I am very sensitive to medication, just bruised way more than pred bruises and a few eye infections. Good luck with it all.
Thankyou Sophiestree,all good info I am getting here from you all.,x😜
I have no experience of TCZ but I do have experience of a different biological in the ... 'mab' family for migraine. It totally transformed my life with zero side effects. How helpful that is to you I don't know but thought I'd mention it. Good luck.
Thankyou Dinahmite,as I have been told,nothing ventured nothing gained!A new chapter starting on this long road!x😜
I hope it is offered to you. All I can say is that TCZ has given me far fewer problems than pred, and got me down to a dose of pred at least 10mg lower. One drawback, is the immunosuppression, though that at least does give you access to all the vaccines that are going!
Thankyou Sharitone,I am on 7 mg,so am hoping that once on TCZ ,I might get down eventually to a nice low stabilising dose.Glad it is working for you and I hope you contininue to do well!x😜
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