Has anyone got any experience of tapering off tocilizumab injections that they would like to share? I have been on weekly injections (for GCA) for over 8 months and now need to widen the gap between them. I came off pred. mid-January. I would appreciate hearing from anyone in a similar situation and/or who has come off them altogether with no other medication.
Tapering off Tocilizumab injections: Has anyone got... - PMRGCAuk
Tapering off Tocilizumab injections
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Frenchduck
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Is that something you have decided to do yourself or your consultant advised. Purely interested as I am also on TCZ and understand many take it fortnightly and some every three weeks and seem to be fine. Is that the requirement, to taper off? Sorry, I am not really replying to your question, more interested.
The consultant advised me to go to 10-11 days by mid-April, then gradually increase the gap until I see her again in July. There wasn't really a target to be on by then but personally I'd like to be off it altogether by the end of the year, if that's doable.
Amazing you came of pred, which I find encouraging, and envious. Is there a specific reason you are keen to get off TCZ sooner rather than later? Or just merely not wanting to take a drug, which I totally understand. I think from what others have said, you are likely not to notice any difference to how you feel if you reduce every 10/11 days.
I live in France and haven't seen any of my family (5 children and 2 grandchildren) who live in the UK, since November 2019 and that was at my sister's funeral.
I want to go to the rescheduled family wedding in September so I would prefer the injections to be less frequent by then. I'm not sure how I would transport them (we intend driving) if this is not the case.
Also, I'd rather not take a drug if I don't need it and that's the billion dollar question - when will I not need it and how will I know? The consultant is basing her decisions on statistics which I don't have a problem with. As a fall back position I would take prednisone with me in case I had a sudden relapse. I think this is something I will have to do from now on.
Ah I totally sympathise re seeing family. My daughter lives in Hong Kong and haven't seen my new grandson who was a year last month and I will unlikely be able to get to see them any time soon. I believe in the UK there is an infusion you can have which lasts 4 weeks, rather than the weekly injections, and if I am ever allowed into the country, that is what I plan to request, otherwise, yes, it is a tricky problem. A little mini fridge that you can plug into the car?
Yes, not taking any drug is most certainly the ideal, although I have been taking levothyroxine for 40 years now, another thing that hasn't helped my osteoporosis.
Yes, I think I'll so some research on a mini car fridge or cool box. I didn't know about the infusions so I think I'll ask about that as a possibility before the trip in September. As you say, not seeing the family isn't easy and the last thing I want to do is to have to cut the trip short to return for an injection! You must be dying to see the little one and I hope that can happen soon for you.
I have been taking Levothyroxine for the last 20 years and also a large dose of Vitamin D3 every 3 months during that period. The French GP at the time, told me that the VD3 was very important and never to stop taking it! I actually believe she was right as recent bone density tests have shown very good results.
Life In a Box is the only mini fridge company I’ve found that seems relatable for a med like TOC. Just an FYI since I spend so much time researching it for a long time. Finally found that company!
Thank you, I will certainly take a look at that.
The company Genentech has a coolbox product for transporting the injections.
I think DadCue posted the link sometime back. There are other tavel bags available but the storage temperature for TCA is pretty crucial.
Thank you. I will look at Genentech and Life in a Box. This should save me so much time. Really grateful for yours and HanaleiBa's input.
You may want to investigate the monthly IV and its effectiveness with GCA. The regular self injections I believe are more effective with less side effects. I’ve been on it 3 years now. For the past year at every other week and currently switched to every 3 weeks. Hoping to end it this year. Feel great.slight cholesterol increase but otherwise active and regained muscle loss from being in Pred for 8 years.
That's really worth knowing. Thank you and hope you do end it this year with success.
Ah, lucky you, we will only get it for one year in the UK after it has gone to a panel for approval as it costs approx £10,000 for the year.I would only consider the IV if I was planning on travelling to Hong Kong to see my daughter. I have always had a slightly raised cholesterol, mainly due to the thyroid issue, my diet is pretty good but it doesn't seem to make any difference.
Good to know you have regained your muscle loss, that is really affecting me right now.
Hi,I was told by the nurse during my training interview that I could come straight off Tocilizumab without any kind of taper. I am about 10 months in to my year on Tocilizumab. I have had a GCA/LVV diagnosis for just over a year. I am on 9 mgs of Pred. I stopped Tocilizumab for 2 injections/weeks (infection and antibiotics)and didn’t notice any adverse effects. My concern when I stop, is that it would be very unusual for me to be free of GCA/LVV in less than 2 years. I am being urged to come off Pred so that suggests another drug will be prescribed, which I dread. I asked my Rheumatologist about having injections two weeks apart, she said it would be less effective ( although it is the norm in America) and that we get one year of it, irrespective of having it weekly or fortnightly.
Thank for your reply, it's interesting. I've got the same as you and was diagnosed possibly the same time (April 2020). I think I had it for 3 months prior to that. At the time I was told I'd need 18 months to 2 years to be well again, if all went according to plan. The end of the year would be 1 year and 8 months but I don't want to do anything silly and end up at square one.
I don't see why - the difference between the two week and weekly cohorts in the clinical trial was minimal.I suppose the idea in other countries where there isn't a time limit on the TCZ is that by making the spacing between injections they can see if they can get off TCZ entirely without a problem.
I don’t either but thems the rules apparently. Tocilizumab doesn’t seem to make me feel better in the way Pred does. I’ll be glad to be done with it. It just seems to make me feel rough in a myriad of ways.
That's a bit off-putting!!!
Mitigated by DadCue’s experience though and others too.
I have been on Tocilizumab for over three years. After about 6 months I tapered steadily down to one injection every 4 weeks. If I go over 4 weeks - usually around 4 weeks 2 days I do relapse. I seem fairly well on 4 weekly injections. I am also supported by one mycophenelate a day. I did start with 4 and tapered that as well. I am on 3 mg of pred. Did get down to 2 mg but relapse due to my injections arriving late caused me to have to go back up to 5 mg and I now cannot get back to 2 mg. I have no symptoms but do get bouts of tiredness. I confess that I probably do to much. Hope that helps.
Thanks for sharing that. It remains to be seen what the consultant offers me when I see her in July. All I've got to go off at the moment is blood tests every two weeks and how I feel. Sometimes I feel great but it's usually short lived. I've had lots of interruptions with 5 vaccines during a 10 month period so I haven't had the chance to settle down. I get muscle pains in the top of my arms if I don't keep moving but I rarely get tired. This causes me problems when trying to sleep at night.
Thanks for sharing your experience. It's really useful to know what other people have gone through when you are about to embark on a change yourself, as I am. I hope you are successful on the two-weekly injections again.
Hi. I decided to come off this drug as I didn’t approve of the side effects., I’ve not discussed this with the rheumatologist, it was my own feeling towards this drug. I had been getting a lot of urine infections and generally feeling poorly, I’m convinced this drug is not good for you, also my liver function test was a bit high, if you read the side effects it says it can affect the liver and also cholesterol levels.
Since stopping all my blood test have come back normal and so far no more urine infections.
I’m still taking pred.
I did not notice any adverse effects of just stopping this drug.
Good luck with it all.
Xx
Thank you, it gives me more confidence about coming off it.
Anyone on TCZ in the UK will just stop it at the end of their alloted supply - they only get it for a year usually, and not even as 52 doses, if they start to taper, they get fewer doses.
So it sounds like the treatment plan is geared to that rule. Thank you.
I am desperate to stop taking Tocilizumab as I’m sure it has caused almost permanent cystitis for the 5 months I have been on it. I had an intravenous first dose which lasted a month, then I have been injecting weekly since then. I had been on weekly Metatraxato injections for a month before Tocilizumab and stopped it after the first month. I was also on 24 ml of Pred. My rheumatologist told me to do a fast taper of 2 ml per fortnight and then stop. When I got to 2 I was in too much pain so went back to 4 and have been ok apart from the really awful bladder problems which have resisted 4 courses of antibiotics. I see the rheumatologist in 2 weeks time so have decided not to inject this week and see how I feel. I’m so sorry you have been suffering in a similar way but, to be honest, relieved to hear of someone else who feels the same about this drug. I too had a slightly raised cholesterol level and have had to take statins.
Thank you for your post. It has really helped me make this decision.
Hello French Duck. I too am in France and have been on Tocilizumab for 18 months. At first I had MTX to help me reduce but I could not get below 7mg pred so I was put on Tocilizumab weekly injections. All went well and I could reduce to zero pred within about a year. Now I'm reducing Tocilizumab: it was first weekly, then fortnightly, and I am now at every three weeks. So far all is going well- no fatigue, I can do a whole lot more and feel nearly back to my previous self (after 4 years of PMR/GCA). I was told one can stop Tocilizumab and restart if necessary. My specialist's preference is to taper Tocilizumab- the gradual approach. I think it's a good idea for you to take a stock of pred when you travel and the mini-fridge in the car for the Tocilizumab even if only for psychological security reasons. Recently I had a tooth extracted so I was told to stop Tocilizumab a month ahead of that. I did and had no adverse affects.( I resumed my injections thereafter). Very likely then I will be told to stop Tocilizumab completely at my next consultation in a couple of months. Thanks everybody for posting experiences- it's incredibly helpful in getting one through all the ups and downs of recovery.
That's all good news and thanks for letting me know. It gives me more confidence to widen the gap a bit between injections without the fear of something going wrong. I'd like to get to a certain regularity before I see the consultant in July. I generally feel better as the time goes on after an injection but can feel "off" again in the days after having it. However, with having reactions to the vaccines, I can't be too sure that Tocilizumab was the only cause. Time will tell.I'll definitely take on board the idea of the mini fridge and also taking pred with me when I go to the UK or elsewhere.
Do you mind me asking which part of France you are in? I'm in the south west. Also any tips on which brand of mini fridge is best would be gratefully received. Thank you.
I'm in the Massif Centrale, Puy-de Dome area. I find the healthcare here excellent. Don't have to wait for appointments among other things. I have a brother in the south west- he also speaks very highly of his healthcare. Bon courage with reducing! I just remembered something from my last consultation...I was told coming off Tocilizumab can be problem free (like Chrisellie has posted) OR it CAN be a problem- 50/50 chance. Everybody is different . However one can go back on as necessary.
Yes I agree that the health system is great. I really like getting results straight away too - eg blood test in the morning and results on my laptop the same afternoon. Long may it last!
My injections were just stopped after 12 months. No tapering involved. Over a year since last injection and no problems, touch wood. I have my reduction rate and dates in my profile. Hope it is successful for you.
Thank you and well done! I'll take a look at those.
Interesting 🤔Xx
Hello all, just curious about this topic regarding cost of this drug. I live in Canada and was told it costs roughly $25,000 a year with no coverage. Is this correct? Maybe it is less expensive in the UK. I was immediately put off ever considering it when told of this high cost.Thanks
Here in France it costs 830 euros for 4 injections which I pick up every 4 weeks. The total cost is covered by the "health section of the Social Security" and Complementary Insurance". Social Security pays 540€ and the Complementary pays 290€. I don't pay anything as this is automatic but the figures are printed off by the pharmacist on the back of the prescription. I pay a monthly subscription for the complementary insurance which is voluntary. If I didn't have that insurance I would have to pay the 290€ myself.
One year's supply of this (52 weeks) is 830 X13 = 10, 790 EUR
As far as Canadian dollars go, I believe this is approaching 16,000 CAD
I haven't looked up the price recently for the UK but I believe it is similar to France. In the UK it is funded totally by the National Health Service.
I too am from Canada and investigated Actemra when first diagnosed with PMR. I then found out it is not prescribed for PMR in Canada 😔. In the interim I did find out the cost would be covered by my benefits provider (Greensheild) should I meet diagnostic requirements. So having the extra health benefits through my husband’s former employer made the difference cost wise. I’m just disappointed that it’s not even an option for PMR patients.
I live in B.C. and certainly not $25k/YR. Think it is more like $1,500/mo and then our provincial medical covers part of it. I don't have personal medical, only our medicare.
It's about that, bit less probably. £12,500 was the figure quoted previously. It may be more for the infusions as a hospital clinic cost for the i.v. administration must be factored in.
However anyone wants to presentit, the primary reason it isn't available in most countries for PMR is because the healthcare systems have rules and one is that either it must be clinically trialled for that illness and then submissions made for approval for widespread use or each individual patient must be presented for off-label individual use. The clinical trials were for GCA.
Not much problem getting it for RA though and they aren't limited by time either.
I am hoping you can help clarify my situation regarding the payment of medical bills when you live outside the UK. We have retired to live in Mallorca and intended to keep registered with a surgery in the UK until we obtained residency here. My PMR started on 23rd March 2020 when we were intending to be here for a only a couple of months. We couldn’t get home of course and therefore my initial rheumatologist consultations we’re on my E111 card. I obtained residency a couple of months ago and therefore now have a healthcare card and have been able to register at the local health centre. I know that the NHS is billed for all my medical treatment but I’m just a bit worried about the cost of Tocilizumab. My rheumatologist started me on it almost immediately. I had been self-medicating Pred for 6 months before I saw her. Presumably there wasn’t time for her to check that the NHS would cough up the £12,000 for the 12 month course.
I would really value your help in this.
No idea I'm afraid - I worked at first and then used an S1 once I got my UK pension. That was just reciprocal treatment so I got anything a local would get. I'm now Italian pension age, don't know if I get money but having been here long before Brexit I'm effectively a local and have been for a couple of years. And every country is different. In Spain I know you have to be careful about who your doctors work for - the UK agreement doesn't cover anything in the private clinics but I know no more than that.
Thanks for your reply.
My journey has been a bit different from most. My rheumatologist started me on 60mg of prednisone, then two weeks later I started weekly Actemra injections. I was on an incredible fast taper, so I finished prednisone in five in a half months, but continued on Actemra. I was in the process of tapering from 10 to 14 days and I suddenly out of the blue, in mid conversation to my friend I got a such a pain in my head on the side where my GCA was, I ended up coming home and taking my injection early and was fine the next day apart from one twinge.I have since seen my rheumatologist since and he has put me back to every 10 days for 4 months. He said I also could of taken 20mg of prednisone if I had wanted to in that situation. So like most people have said, I would bring your Actemra, because you never know if you will run into problems and you’ll be thankful you had it.
That seems to illustrate that the gap between the injections can make a difference and it confirms that having prednisone on hand is a good idea. I think I'll be doing belt and braces!
Thank you.
Yes I would and I was also in a similar situation to you, were I was going away for 10 days and asked could I postpone taking my Actemra and my rheumatologist said no, just to pack it up in a cool box.
Thanks, that sounds great and I'll be doing that.
That's really interesting. It's a pity that covid cancelled your plans, mine too! Let's hope that post vaccine we can feel safe setting up our plans again.
I also have GCA and came off prednisone in January. I had to reduce my tocilizumab to two a month due to low WBC. Started weekly shots again after increase of WBC but went down again due to low WBC. I have been taking shots for a year and a half. This is a side effect according to my doctor.
Thank's interesting information, thank you. How does anyone know when it's time to stop the injections altogether? Some people are on the injections for a year, due to them being stopped after this time and others have them for much longer. What does your doctor say would happen if you stopped them? It's a question I'm going to ask my GP soon.
Don't think you do until you try. Same as with pred, you would taper by increasing the time between injections until you were going long periods between without a return of symptoms.
Thanks, that makes sense. I'm not sure what information the doctors are using when they decide to keep you on the weekly injections for a particular length of time. Is it just based on past experience of what has happened to other people when they have tried to come off it?
Don't know really. The Giacta clinical trial had 2 cohorts on TCZ, one had their pred tapered over 6 months, the other over 12 months. Then they went into the second phase to see how remission continued and results are only just starting to be published - literally in the last few weeks
thelancet.com/journals/lanr...
Bit more complicated but with some nice slides that aren't too difficult to read:
Google "Long-Term Outcome of Tocilizumab for Patients ... - Medically...
Results From Part 2 of the GiACTA Trial. John H. Stone."
and a link to a PDF of a slide presentation should come up to download.
Brilliant! Thanks I'll look at this later. I love this sort of stuff.
I had MRAs of my abdomen and of my neck. I don’t have all the results, but I do know that my temporal arteries are thickened and I have narrowing of arteries of the kidneys. Will see cardiologist and rheumatologist in the coming weeks to see what all this means. I will let you know what they say about the injections. Stay safe.
I hope it all goes well for you and I look forward to the follow-up.
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