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
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!
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.
Does seem a bit marmite-y though
Just to clarify, I felt pretty rough too in the early going with TCZ. I wasn't very excited about taking TCZ because I didn't know anything about it at the time. Advise from this forum wasn't very encouraging.
I had seen an endocrinologist prior to starting TCZ but was told my prednisone dose was too high and that it would be impossible for my adrenals to recover so soon. I wasn't taking TCZ at the time but I held my morning prednisone dose hoping for a synacthen test. The endocrinologist wasn't interested in the synacthen test. It was a morning appointment. Since I hadn't taken my prednisone yet she did check an a.m. cortisol level and a couple other labs. She said my cortisol level was low at that time.
After TCZ was started, I tapered by 1 mg every month the first 4 months. When nothing dire happened, I felt more confident about reducing faster but I still didn't feel well. My rheumatologist didn't give me many instructions about what I should do. I had communications with my rheumatologist so I just informed him when I got to 3 mg. I was told to stop tapering until I saw the endocrinologist again.
I was officially at 3 mg per day for three months but I was experimenting with my dose so I will say that I "bounced around" between 0 mg and 5 mg daily just to see what would happen. It averaged out to be approximately 3 mg per day. I can't say I felt well at the time either.
When I saw the endocrinologist again, I told her what I was doing for the past 3 months. She still wasn't interested in a synacthen test but did another am cortisol level. That level was "adequate". There was a lot of discussion and there were several options that were suggested. One option was stopping prednisone with hydrocortisone as needed instead of staying on prednisone. She said taking prednisone if I felt the need was okay but she wanted to know if I took it and preferably before I took it.
I elected to stop prednisone and carried hydrocortisone in my pocket.
I didn't actually start feeling better right away until I was off prednisone for 5 weeks before the uveitis happened. That's when Actemra was stopped and I was on 60 mg of prednisone again. I didn't feel well the entire time on that much prednisone and Humira made it worse. All the pain was returning and I couldn't get lower that 15 mg again. I was more than willing to restart Actemra the second time.
The endocrinologist monitored that whole situation and offered some opinions. I still see the endocrinologist for other hormone imbalances. My cortisol level has been trending higher this past year.
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.
I was initially started on injections every two weeks. I have taken Actemra a total of 28 months but the time interval between injections has changed several times..
I tapered off prednisone the first time in 7 months so a very good response given I had been on prednisone for more than 12 years. Things got a bit complicated after that.
I had a flare of uveitis which wasn't what I was taking Actemra for. It was a bit of a surprise but necessitated going back on 60 mg of prednisone and Actemra was stopped. A different biologic (Humira) was tried but that failed to control PMR symptoms. The pain was such that I was stuck on 15 mg of prednisone again.
A decision was made to stop Humira and restart Actemra with weekly injections. That worked well and I got off prednisone a second time. After a year of weekly injections, a decision was made to try injections every two weeks again. That worked well initially but I did experience significant pain after my first covid vaccine. In consultation with my rheumatologist, she suggested that I go back to weekly injections again. The discussion was such that I could return to injections every two weeks when I felt better. She rewrote the prescription so I would have enough doses for weekly injections.
I did the injections weekly for about a month. On my own, I decided to do injections every 10 days instead of weekly. I would say injections every 10 days has been good.
I don't really know what was causing the pain after the first covid vaccine ... nor did my rheumatologist. I didn't experience any pain after the second covid vaccine. My rheumatologist has always been flexible but she doesn't know that I'm doing injections every 10 days. I plan to try injections every two weeks again in the near future.
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.
It is good for me to read about the personal experience that other people have as well. So much of this is speculations so I value personal experience to a higher degree than some research which is tightly controlled. I don't think research always reflects "real world" experience.
We are all different so what applies to one person doesn't always apply to everyone.
I have more than one autoimmune conditions. My rheumatologist was always sure there were multiple problems. I could never tell which condition was causing the pain. I think adrenal insufficiency introduced additional problems so it was all very confusing.
TCZ has been amazing for me. It has brought some clarity to the problems. My rheumatologist has said it is impossible to treat all the problems adequately. However, I'm finally off prednisone and enjoying my life again. I am optimistic about the future going forward.
Flares of uveitis can be treated with high dose prednisone followed by a fast taper over a month or two. I'm not too worried about getting stuck on prednisone again as long as TCZ keeps working.
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.
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.
I had problems with infections when prednisone was combined with almost any DMARD or other immunosuppressant. The other medication was stopped instead of prednisone because prednisone couldn't be stopped. My rheumatologist said the problem was "too much immunosuppression" and prednisone was as much to blame as the other medication.
I had a problem with infections the entire time I was on prednisone. That tended to exacerbate reactive arthritis which my rheumatologist has always said was part of the problem in addition to PMR.
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.
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.
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.
"As far as Canadian dollars go, I believe this is approaching 16,000 CAD"
That is probably accurate so closer to $12,000 USD. What is billed to the insurance companies for almost any health care service or medication is roughly double what it actually costs.
It is a strange system --- the listed price for health care services and medications isn't anywhere near what the actual costs are but still expensive.
The cost is a big obstacle in the USA too and $25,000 per year sounds about right.
We have multiple types of health care systems here. Insurance companies also vary considerably in what medications are covered and what aren't. I was very fortunate when I retired. I was eligible for a government subsidized health care system for military veterans.
It doesn't seem fair but my rheumatologist at the university hospital. said she wouldn't have gotten Actemra approved for PMR. She did mention that I might qualify for a clinical trial for some biologic but nothing became of it. I assumed I didn't qualify.
When I retired and went to the military hospital with the same doctors, it was approved by a medical panel based on my medical history. I don't pay anything. I am grateful to the taxpayers in the United States.
The other thing that seems grossly unfair is that TNF inhibitors are widely used for inflammatory arthritis with few restrictions in both public and private systems. Those medications cost at least as much if not more.
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!
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.
Before covid, we were planning a trip involving airplanes, trains, cars, a cruise ship and hotels and we were going to be away from home for about 4 weeks. I had no idea how my injections would survive during that time. I asked my rheumatologist about an infusion which in theory lasts a whole month. Arrangements were made for me to get an infusion prior to leaving on the trip and then go back to the injections when we got home again. I never got the infusion because covid cancelled our plans.
Generally speaking, my rheumatologist had no problem with me going from injections to an infusion and back to injections again. Many people receive monthly infusions rather than weekly injections. I'm always curious about how that works for them. It was just nice to know that an infusion was an option. My rheumatologist did recommend taking prednisone with me just in case the infusion didn't work for the entire month.
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
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.
I wish I knew when it's time to stop the injections. My doctors don't seem to have any plan that is pre-determined. They make comments about how well I'm doing and I agree with them. I'm sure if I wanted to try to stop the injections they wouldn't be opposed. My prescription is ordered for weekly but they made it clear that I could try injections every two weeks.
I did have the experience of stopping Actemra for a total of 4 months before restarting it again. It wasn't like I had an immediate flare but the pain did gradually return even while I was taking 15 mg of prednisone. The prednisone wasn't needed anymore to treat uveitis so it should have been okay to taper off but I was getting bogged down and stuck on 15 mg again. It was very reassuring when I restarted Actemra that I tapered from 15 mg to 0 mg in about 2 months the second time.
My doctors currently hope that more frequent injections of Actemra might prevent future recurrences of uveitis. My ophthalmologist has no idea when or if uveitis will happen again but there doesn't seem to be any rush to stop Actemra in order to find out.
There was a new entry in my list of medical problems that read: "Long term/current use of Tocilizumab." It seems they do consider it a problem.
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.
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