I have now been given the go ahead, for one year, to take TCZ. However I do have a few questions which the consultant couldn’t answer as ‘papers’ haven’t been written about the drug. So my questions go out to the people on this site that have had experience of this drug.
1. I’m wondering if there’s anyone reading this who has taken the drug and been completely cured? I realised that there must be people who have been cured but are no longer joined to this website…only the ones that might still be having problems, this I will take into consideration.
2. I’d like to know at what dosage of Pred did you start from and at what dosage of Pred did you stop? (I’m currently taking 22.5mg having just reduced from 60mg after a second GCA flare-up with 6th nerve palsy).
3. How fast did you reduce Pred after you started taking TCZ? (I was once told I was a slow reducer and a pharmacist suggested that once I get to 10mg – my previous sticking point – I should only reduce by .5mg but we didn’t discuss what I should do when taking TCZ)
4. Did you pay for extra TCZ until you completely finished the course of Pred?
5. Do you still take Pred? (I was told that I might well have to take a low ‘maintenance’ dose of Pred for some time to come.)
6. Did you take Pred, MTX and TCZ together? (I’ve been told not to bother with MTX whilst I’m taking TCZ but will have to go back on it when the TCZ has finished.)
Every ‘body’ I know is different and I realise that this drug hasn’t been on the market for very long so I guess we’re all guinea pigs with whatever we’re taking.
I know they are difficult questions but I’m trying to think through whether to reduce quickly whilst on TCZ or take the long route. After all, what damages you more, TCZ or Pred?
Many thanks for any information you can give me.
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PuttyPenguin
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1. I am not cured, though now at 5mg, which counts as a success.
2.I started at 14mg of pred (having tried several times to get lower, decreasing from 60mg)
3. At first I reduced by 1mg per month, but after 3 months, rheumy told me to speed it up to 1mg per fortnight. That was ok till 4mg.
4.No, I have it indefinitely.
5. I did come off pred for 5 months, but flared. Now reducing once every 2 months from 5mg, rheumy says to a maintenance dose of 3mg.
6. Yes. but MTX discontinued after a few months of pred because was clearly not helping. I was so pleased!
Has your consultant not told you how fast to reduce?
I've had a couple of blips with TCZ, and some people can't take it, eg Sheffield Jane, but for me, the side effects of TCZ have been less than pred. Immuno-suppression is probably the biggest fly in the ointment.
Many thanks for taking the time to reply. Sharitone. This does help immensely. I guess if I can get down to a lower maintenance level I should consider myself a success.
Never been onTCZ - hadn’t been approved when I had my GCA, so cannot give specific answers, but will say this -
1. There are some who were given the drug and have gone into remission whilst on it [I don’t say “cured”- because there is no cure in the true sense of the word… GCA like PMR is self limiting - so it goes away on its own accord.
2. & 3. no comment
4. In UK, it’s only authorised by NICE for NHS use for 1 year [due to the fact it was only trialled for that period] , and at time of writing don’t think there is a facility to fund it yourself. The only time patients got it for longer than that was during covid.
5. You do still take Pred with TCZ, certainly in UK because it is time limited - that may be different in other places where rules are different.
6. You may well be prescribed MTX once you’ve finished TCZ, probably depends what dose of Pred you are on at the time, and how your GCA behaves.
Hope it goes well for you, but please remember TCZ isn’t a magic bullet for everyone.
Many thanks, Dorset Lady. Yes you can get TCZ privately, I've already asked that. It's all a real pain, this GCA disease, isn't it. I do wonder if I'm ever going to get a life!
Many thanks for your encouragement Dorset Lady. The consultant reckoned that I'd been on Pred for life - even if it was a low dosage of about 5mg plus MTX. This left me a little disheartened but I do have a bit of the Polyanna about me and tend to be rather optimistic. I guess you have to.
Your Rheumy should have said, you may be on Pred for life, not you will… I was told same by Ophthalmologist- who said ‘at least 2 years, probably near 4, maybe for life’ He was spot on, 4 and a bit years…
It isn't a cure - it doesn't have any known effect on the actual underlying disease process which produces the IL-6 inflammatory cytokine. The hope is that by siphoning the IL-6 off and not allowing it to attach to the receptors that allow it to work and create inflammation, that the autoimmune process will run out of steam and go into remission. But some people need the TCZ for much longer than a year and others continue to need some pred as IL-6 is not the only mechanism for inflammation found in GCA. TCZ is very specific, it only works on the IL-6, not other things. But there are people who have got off pred thanks to TCZ and required no pred ongoing though there are some who have relapsed - that was the case in the follow-up to the Giacta trial - so your rheumy is talking rubbish, there are published papers.
I have PMR, I started at 19mg pred and have been down to 5mg pred but recently have had adrenal problems and have been taking 6mg recently. It took about 2 months before I started reducing 1mg at a time - as advised by my very experienced rheumy. It doesn't work instantly for everyone as some doctors seem to think.
In terms of the GCA, after a couple of months of TCZ most people can taper quickly down to about 5-7mg and then it depends on how long you have been on pred and how lazy your adrenal glands have become, if it is longer they may be slower to recover their function and that becomes the limiting factor as corticosteroid is essential to life. It is replaced by the pred and you have to go a bit slower until the cortisol is being produced again. Most people are "slow reducers" because their GCA still needs the pred to control the inflammation, too little and you flare. It's a bit of a silly expression really and rather meaningless, Some people do notice the changes in dose more than others - but more often it is doctors trying to make the patient run before they can walk and they tell them to reduce in large steps and that rarely works.
TCZ is a once a week injection standard dose, It costs about £12,000 a year - few in the UK are in a position to pay that out and I don't think anyone on the forum has done so. Someone did ask about it - in theory all you really need is a private consultant who will prescribe it with the attendant costs. But it is not possible within the NHS.
The drug itself has been on the market for some 15 years, first approved for use in 2008 for another disorder and in 2017 I think for GCA. It is regularly used in RA so there not a lack of information about it. I certainly don't feel like a guinea pig!
Which does more damage? No answer to that. I've been on pred for over 14 years, I can't identify any damage. Pred often gets the blame for things that also can be due to the PMR - I had it without pred for 5 years so I know that some things can be the PMR or the pred, TCZ also has potential adverse effects and a few have had to stop it as a result. I have had no real problems with either, I was briefly on methyl prednisolone - that was pretty foul until I was switched to prednisone. And had a month on MTX - that was pretty foul too!
It may go into remission in a year - but it is time the UK woke up and smelled the coffee, It needs to be more like two to 2 1/2 years on average so a year is a tantalising glimpse of what could be but then the patient is left in limbo. I live in Italy, there is no limit for me, I'm staying here as I wouldn't get it at all in the UK. It has allowed me to already get from nearly 20mg to 6mg. But it has taken nearly 18 months and now I have to wait for my adrenals to wake up - but maybe they won't, In the meantime I will continue with TCZ.
MTX - no evidence it makes any difference in GCA with or without TCZ. There are people in the forum whose TCZ finished - and even after an extension because of COvid, Put on mTZ in the hope of preventing a return, it didn't work so they had to go back on pred.
So far I’m one of those people who have great success with TCZ. I felt a little better immediately the next day. I was on 40. Mg pred when I started and reduced to 0 in 7 months. The only side effect I have is high cholesterol for which I take a drug for.
Once I got off prednisone I started to return to normal in how I felt.
I have now been on it for 21 months. I will be stopping it within the next couple of months. I have no idea if I’ll be in complete remission. I can only hope.
Wow! That was an amazingly fast reduction. Well done you. I wish you much luck in the future, Nallufl24, and many thanks for taking the time to respond.
I'll do my best, but I just wanted to say I'm not your 'typical' case...my GCA went undiagnosed for over a year and only because I lost sight in one eye was I finally diagnosed. Also, I'm in the US and have been on TCZ for four years.
I'm very happy for you.....
1. It is my understanding we go into remission and have to stay vigilant...because we become asymptomatic but not cured. (That works for me)
2. I was on 80mg of methylprednisone per day along with Actemra in October 2019. For some time I would yo-yo 80-60-40-60-40 and so on. It was February of 2023 when I got to 10 mg and now I am on 2 mg per day plus Actemra, TCZ.
3. Your speed of reduction is determined by your symptoms, says my rheumy!
4. In the States, my personal cost is decided by my insurance coverage. Because Actemra is so expensive and my insurance is excellent, I pay nothing.
5. Right now I am on both the injection and 2 mg.....time will tell. I know some folks get by with just Actemra...some with a small dose of pred. One woman I know takes an injection every other week. I think it is whatever works for each individual.
6. Yes, pred and TCZ together; my rheumy doesn't tend to use Metho for GCA.
Grammy, thank you so much for replying. It does seem that TCZ helps a lot of people and yes I am aware that people inject every other week. It's a strange old journey that we all seem to have embarked upon. Wishing you well, Grammy!
I was given TCZ very early in my LVV journey and got down to 4.5mg after 18 months (extended due to covid) when it was stopped. Within two months it all came back with a vengeance and went up to 20mg.At present I am on 7mg, 13 months after stopping TCZ still with symptoms albeit milder and tolerable and 3 years since my diagnosis.
I'm now doing a .5mg reduction over 6 weeks
Would I take TCZ if it was offerrd to me again (which it won't but...) I'm really not sure if it just means some false hope to only go back up afterwards. I'm clearly someone where it's not just IL-6 that needs the help.
But, that all said, it's definitely worth a try. I, thankfully, was not a candidate for Methotrexate due to liver issues that presented pre diagnosis, but hopefully now resolved. I'm happy with just the pred at the moment.
"I'm clearly someone where it's not just IL-6 that needs the help."
Not necessarily - what it means is that the production of IL-6 was still going on at a lower level and built up again when the TCZ was stopped. It, like pred, doesn't cure. It is a steroid sparer that works reliably while you take it but that means you need it for more than a year. The year rubbish is like saying you have GCA - here, take pred for a year ...
I've just read your profile. You had a lot of side effects but you'd still would have taken it for longer??? How are you now Sophie? (Hope you don't mind me shortening your name). Are you down to a manageable dose of Pred? Wishing you well.
I think the side effects were not bad enough for me to consider stopping, that was taken out of my hands.I am taking 7mg at the moment and reducing by .5mg every 6 weeks. I always have some symptoms, mainly my head/neck and shoulders/back but tolerable.
I'm happy to carry on like this for as long as it takes. Have stocked up on enough spare pred so I don't feel panicked if anyone decides to change what I'm doing!
I had 2 years of TCZ (extended during the height of the pandemic) and felt really well on it. However, it didn't 'cure' my GCA-LVV. It bought me 2 years of feeling better than I had since diagnosis 4 years earlier.
I started TCZ at 9mg pred and it enabled me eventually to reach zero. I started to taper by 1mg per month, but after 6 months on TCZ symptoms returned, so I went back to 5mg and stayed there for 6 months, before tapering at 0.5mg per month to zero, just as my ration of TCZ ran out.
My Rheumatologist didn't want me to be on no medication at all, so I started on MTX alone. This didn't seem to do anything for me, as the symptoms returned after 6 months. The MTX was stopped and I went back onto 5mg pred and stayed there for 5 months. I am tapering at 0.5mg per month and am now on 2.5mg. My Rheumatologist is happy for me to take "the lowest dose that is effective " for my PMR/GCA.
I decided not to look into buying TCZ. One member of this forum in Australia has done so - direct from Roche, with the blessing of her Rheumatologist. Things could change for you in a year's time, now that a 'biosimilar' has become available.
As far as "damage" is concerned, you should have regular blood tests while on TCZ.
My experience sounds similar to Sharitone and Sophiestree.
Yes it seems the Rhuemies don't like us not to take some sort of medication - they're probably erring on the side of caution. I wish you well rugger and thanks for taking the time to reply
When I finished with TCZ I would have liked to have gone straight back to pred, but as I have osteoporosis and some steroid myopathy, my rheumatologist, who I trust, wanted to try MTX. However, it allowed the symptoms to re-surface, so I could have had pred - but at least it proved that I did need something!
1) I am in remission from large vessel vasculitis but I still take TCZ (biweekly at present with the idea to take it 3 weekly after November) - remission started approx 3 month after starting TCZ (and pred (starting dose 40mg)) - that was when I could do reasonable excercise (50 km cycling) again.
2) starting dose 40 mg together with TCZ - 0 mg after approx 5 months
3) see 3
4) I live in Germany- no time restrictions for TCZ - insurance pays as long as necessary
5) no
6) no MTX - only pred and TCZ and after 5 months TCZ alone
For me TCZ worked and still works well - I work full time as a University faculty and exercise at the level as before the disease - no significant side effects and I try to very slowly increase the time between injections
You are in drug-induced remission, as you are still using TCZ. The time you will know you are truly in remission is when you have been off TCZ for some time.
Fully agree - the guidelines in Germany (as well as my rheumy) are quite clear about the difference between remission under treatment and remission without any treatment. My rheumy follows a very careful reduction of TCZ (which is possible in Germany as there are no time restrictions) to avoid any flare and this worked very well by now.
Really wish other nations were as clear about it! Far too many don't get the concept of drug-induced remission and true remission. Not sure what went wrong with their training!!!
Wow Deepthought2! 50km on a bike! Impressive! I could only do 25km when I was fitter - now it's 2km on a static bike and I'm knackered! So glad to hear that TCZ is working for you and that you can get it on your insurance. Were you advised to gradually reduce the frequency of your dosage of TCZ or was that something you decided? TCZ does seem like the way to go . Many thanks for your time. x
The gradual reduction of the frequency of application was agreed between my rheumy (at a University hospital) and me - he thinks it is better to slowly and carefully reduce and I fully agree.
Complete remission/cure. Started 40 mg Prednisolone December 2018. Tocilizumab weekly injections from mid feb2019. Pred finished September 2019. Injections finished mid February 2020 (12 months). Still felt not quite right for quite a while after stopping everything but not achy, more slightly not there mentally. This wore off.
Details in my profile.
Hope it all works well for you. ( I had PMR, GCA, LVV)
I too am in remission, have been off all meds for 1 1/2 yrs. Started at 60m of pred, after 2 months was down to 40m and started on weekly TCZ, after additional 3 months was off pred entirely.
Overall took weekly injection of TCZ for 1 yr, then over the next yr weaned off it by going to once every 2 wks, then 3 wks, then once a month.
My Rheumy is believer that you are less likely to have recurrence if you slowly come off TCZ over 2 yr period.
I had no side effects from TCZ, tolerated it very well, found it much much easier to take than pred. Energy level gradually returned after I had been off pred, even while on TCZ.
Rheumy is optimistic I will not have recurrence but said if I did he would put me back on TCZ and try to avoid putting me back on pred.
Hi, I was just reading these replies, surprised I didn't, and wondered how you were doing? Briefly, I started TCZ (States) weekly while on 80mg of methylprednisolone back in the fall of 2019. I was headed in the right direction until fall of 2022 with a slight bump. In February of 2023 I hit 10 mg for the first time along with my years of weekly TCZ!!! One mg this fall and my body decided to act up a few times and I was off TCZ for 4 weeks plus other immunosuppressants and now had a flare. I just reduced to 20 per day from the 60 daily I was prescribed on hospital discharge and will see my rheumy next week again.
I LOVE TCZ...no problem, no reaction for me....a lifesaver that was a bit slow in my case but so worth it. A friend in the state of Maine has been on two injections per month for maintenance for years. Grab it ~!💞
Also, I have a friend in the UK who just finished her year and has been assured that it needed, her rheumatologist will put her back on it.
Many thanks for replying, Grammy. I haven't started TCZ yet - this is the UK...red tape rules! I see that you were diagnosed a year before me - the GCA can be a lot more stubborn than I thought it was going to be and I'm sorry it's clung to you for so long. I am an inpatient person - I was the one who was going to get over all this within six months - another life-lesson I've had to learn. I am down to 17.5mg but every time I reduce I feel awful for a few weeks which I hope won't be the case when I'm on TCZ. I know that when I get down to 10mg and below, I can have some sort of life.
Again, I am grateful for your reply and I really wish you well. Bless you x
In the UK it isn't in the gift of the rheumy - it is up to the funding authorities, Even the 1 year isn't automatic, Totally wrong in my opinion - since it is unrestricted for RA.
Totally wrong I agree...especially since RA dosesn't jeopardize sight!If a person loses sight, does the UK help fund their living? TCZ is more cost-effective!!
Well I thought so initially… but as I’ve said in my post re dealing with it… it’s not the disability I was expecting at the beginning. It can be an impairment at times, and a flaming nuisance at others. But in all honesty it doesn’t stop me getting on with life, so far do’s I guess…
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Tapering below 10mg steroid on MTX and TCZ
