My Ophthalmologist has now mentioned ending my "allocation" of Tocilizumab whereby I will be maintained on 15 mg of Hydrocortisone and 20 mg of Methotrexate. I am unnerved by this and feel it will leave me at an increased vulnerability to relapse and have only one functioning eye. Has anyone gone through this experience? how well have they held up in terms of flare up's afterwards?
Stopping Tocilizumab: My Ophthalmologist has now... - PMRGCAuk
Stopping Tocilizumab
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AncientMariner
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I think that all of us on Tocilizumab have these worries. I honestly hope to get by on low dose Pred without additional medication. When I run out. I wish there was a way to see how GCA was progressing or not. I have GCA/LVV that hasn’t affected my temple arteries thus far. However, my Rheumatologist is unable to guarantee that it won’t one day. I have had a recent Cardiac MRI and have been called back to have a closer look at my Aortic Artery and my Carotid artery. I have no idea what this will mean for my treatment. If I had no further gaps in treatment, I will run out of Tocilizumab along with everyone in March 2022 or a few weeks beyond . I am thinking of of moving on to fortnightly injections ( with my Rheumatologist’s blessing) due mainly to infections eye, nasal, gum, UTI. I am unable to tell if Tocilizumab is helping me, I never feel well. Mostly general malaise type symptoms. If I dip much below 10 mgs of Pred, I start to get PMR symptoms and mobility problems. I regularly have my eyes examined privatelyWith my optician’s sophisticated equipment. I have the beginnings of Cataracts and dry eyes - no GCA red flags, no glaucoma. I am on Blood Pressure Meds. My blood glucose edges towards diabetes it is all a balancing act. My bones have been good ( DEXA scans) Initially I was impressed by Tocilizumab because I was able to reduce rapidly to 10 mgs of Pred. Then I found it difficult. I hope beyond hope that this drug will help me towards remission. How are you Ancient Mariner? I remember when you first joined. I would be apprehensive about Methotrexate and Hydrocortisone as a substitute. Read up about Methotrexate on FAQs. What is the thinking behind Hydrocortisone? I don’t think it is great on reducing the symptoms of PMR/GCA. The Adrenal system responds better to it than Pred because it is weaker and severel doses a day more closely mimic the action of a healthy Adrenal system. IS your Opthalmologist confident that your eyesight will be safeguarded on this regime? Research projects have shown that one year of Tocilizumab can send GCA into remission in conjunction with low dose Pred. In a way that does more that just dealing with the inflammation. I cling on to this.
It is good that your Opthalmologist is making contingency plans for you - mine has not mentioned it yet. Make sure they are right for you. As far as you are able.
Sorry if this is a bit of a long post but is an account of my worries on this issue. Let me know what happens to you and I will do the same. I also invite anyone else to discuss the discontinuation of Tocilizumab for GCA patients in the UK.
Thankyou for taking the time to respond in such a detailed manner. It seems you have a number of health issues surrounding this. I have been so far lucky, if you call it that, i have not suffered too much with more diffuse PMR issues such as joint/muscular symptoms, mine is very much around my eyesight. I o get aches in the left shoulder blade and have been experiencing this for ten years or more, it depends how I sit and sleep and have got through cans of Deep Heat in the past. It is in my view short-sighted (to coin a phrase) to provide such an excellent treatment as this only to then withdraw it, psychologically harming people and increasing risk and, as in other areas of treatment, if the risk results in a complete breakdown of an individuals sight the the cost of social care input increases exponentially, so it is a complete false economy and displays Quango thinking.
To both the AncientMariner and to you Jane, I'm so sorry that you have this concern. Hopefully, in time and research, there will be a way of measuring how lively our GCA is other than SedRate and CRP. 🤔😪 💖
I so want to respond to you AncientMariner, and to Jane also, as this affects me similarly, but I am currently out and only have my phone to tap on. Will reply more thoroughly when I return home in a couple of hours.
PMRproAmbassador
Since I'm not sure it was part of the clinical trials - I am very interested to see how this use of methotrexate ongoing will work. I believe it is a not uncommon way of proceeding when TCZ is used in RA - but as we all well know, GCA is NOT RA.
In the clinical trials, stopping TCZ after 6 or 12 months resulted in extended periods of remission that varied between patients. Presumably the hope is that MTX will suppress the immune system enough to prevent a relapse - at a very much lower cost than ongoing TCZ. I believe the use of TCZ in GCA is under review.
Finally home. I have been on 3 weekly shots of TCZ now for nearly a year. Because the script was to run out last August, and I knew it was unlikely that I would get any more, I began stock-piling until the repeats were all filled, and now I have enough to get me through till around April, if I continue with 3 weekly jabs. I too have GCA/LVV, and so far it has not affected anything in my head. The TCZ has worked well, up until a couple of months ago when I was down to 0.5mgs of pred and my Rheumatologist asked me to go to 4 weekly jabs. I had a mini flare which was brought under quick control by an increase to 5 mgs pred for a week, then 3mgs and now I have been on 2 mgs for a few weeks. Like Jane, I am hoping to survive on a low dose pred once the TCZ runs out because like you, my Rheumatologist wants to put me on Methotrexate. I told my Rheumatologist that I just did not understand why TCZ isn’t funded for more than 12 months when it is effective. I told her that I intend to approach my local politician, whom I know quite well, to see if he can lobby or advise in this regard. Rheumy said she wouldn’t support me on that because it’s so expensive and there are cheaper, effective drugs like Methotrexate and Luf-something (can’t remember just now). Without a letter of support from her my quest will surely fail. I was very upset about her attitude but I have calmed down now. So to sum up, I really feel your pain and concern. If a drug is effective and available, why should it not be prescribed and funded? I have paid my taxes all my life, never asked for govt financial support in the past, why am I not as good as someone with RA? The answer is that there have not been sufficient trials. Very frustrating. I’m going to begin stretching my jabs out to 4 weeks while remaining on 2mgs pred. I’m really hoping that I will be successful, but who knows. That is my story AncientMariner.
leflunomide. But neither are proven to work alone in PMR - don't care what she claims, no large-scale studies at all yet. There ARE some underway. And if trials are required for TCZ for GCA to achieve the same ranking as for RA - where is the difference?
Yes, that’s it. She hasn’t claimed any studies, just says that there has been success with both metho and leflunamide, and she loves that they are cheap. I asked her why the hell did she prescribe TCZ if she knew it would be short term … no reply your honour.
Some success - yes, maybe, but there are plenty they didn't work for. I don't object to them trying them in the absence of another option. Just don't present them as wonder drugs ...
Well she hasn’t exactly done that, but she talks them up. Why go with TCZ if they’re so great! I have listened to your advice and I am going with it. I will not, if at all possible, go on any more drugs. I would rather try to stay on low dose pred. I’m not reducing any more, she knows that, and I will begin the process of spacing the TCZ out to 4 weeks. It’s an unknown but I will give it a go. I’m not complaining about my situation, I feel reasonably fortunate compared to many.
Exactly - had she tried them before TCZ? No - I realise you aren't complaining - but this really is something that needs discussion and openness. Two things that are rarely forthcoming anywhere.
I would welcome that discussion.
Thanks for sharing, fortunately I have a fast car and have had to hurtle to the eye hospital with one eye gone and another going in the past. It was that episode that got me an appointment with a Rheumatologist who listened to my family history replete with Rheumatoid arthritis (My Aunt takes Methotrexate) and finally I got a diagnosis of GCA and was commenced on Tocilizumab. Looks like I may be revisiting that at some stage again as I was on Methotrexate and a higher dose of Prednisolone then and it didn't hold it. I will always make sure there is petrol in the tank, what we are forced to do, it really is inhumane to withdraw a working treatment.
“fortunately I have a fast car and have had to hurtle to the eye hospital with one eye gone and another going in the past.”….
Even if said tongue in cheek, I do hope that’s not a recommendation to other GCA patients.😳 …unless you are being driven by someone else.
…and that from someone who’s son calls her “the one-eyed Schumacher!”
I live alone and imagine getting a Taxi now? You would be waiting some time with a condition where time is crucial, it was my own choice in a time of acute fear and a description of an event not a recommendation and faced with the same terrifying circumstances would do it again.👍
I live alone as well - but not sure I’d risk it!… but we all have to make our own decisions.
I am in the same boat, AncientMariner! I received a letter just yesterday from my Rheumatologist asking to see me in February, to discuss starting Methotrexate prior to stopping TCZ in March 2022. I have been able to taper the pred to 2.5mg and expected I might be on 0.5mg by March, using a 0.5mg/month taper. I had hoped that by March, 2 years on TCZ might have put my GCA-LVV into remission, as for some in the clinical trials, but who knows? I feel fairly sure that my PMR is under control, having been diagnosed over 5 years ago. I get no PMR symptoms, but can't see inside my arteries to know what the LVV is doing - that was diagnosed 2 years ago, but had been brewing for several months before.
I share everyone's concern and distress at having to stop a drug that appears to have been very effective in controlling my condition(s). Like SheffieldJane and LemonZest11, I would rather stay on a low dose of pred than take Methotrexate.
We must all keep in touch over the next few months.
As we share a Rheumatologist, I can safely assume that I will have a similar conversation on 10/12. Unfortunately the further look at my Aorta via MRI takes place the following day. So we can’t really make an informed decision. I am still footling about at 7/8 mgs of Pred. Similar timescale to you. It’s fear of the hidden progression of the disease, that we cannot really know, that is worrying.
What I struggle with is that it is approved for Takayasu's because of the potential damage to other organs - surely it is the same with LVV? I'd like to ask Sarah what you would have been diagnosed with if you had been late 40s. I know someone on the forum a bit back noticed her original diagnosis of Takayasu's made before her 50th birthday had been changed to GCA - she asked and was told that at over 50, it would be GCA ... There is NO logic to that.
Thanks Rugger, you do feel as if you are battling on your own, whereas treatments for "Popular" conditions that make it into the media get funded.
Yes, let's keep talking, sharing our experiences with the end of TCZ just around the corner. Thinking of my TCZ friends UpYonder ❤
Just to say that I am not on TCZ, but am appalled by the stress that you are all experiencing over its upcoming withdrawal. What on earth can be the justification, other than cost? (And that’s not earth-shattering, surely, albeit much more than pred or MTX)….
Maybe PMRGCAuk could lobby about this?
In support xx
In UK around £12k for one year- not sure in other countries - so significant. Plus as PMRpro states quite regularly it’s not the miracle cure for everyone.
The charity has done it’s bit on the subject….it is how patients got it in the first place . Wasn’t available for GCA patients when I was diagnosed in 2012.
No, I can understand that it wouldn’t be the best treatment for everyone - and that consideration always has to be given to cost - but I’m still shocked…..
Unfortunately that’s the way it is ….
Sure, not all drugs work for everyone. But it's a rigorous process for approval and if a Rheumy has prescribed it and it does work, what's the justification for ceasing, other than cost, and that is not good enough.
Unfortunately that’s the way of the world….not saying I agree with it…There is a finite amount to be spent on drugs in any country……and for everyone that gets the medication of their choice, there are many that don’t.
I have been on TCZ for 3 years. Rheumatologist now wants me off it. Had already tried Leflunomide and Methotrexate which hadn’t worked ( Criteria for starting TCZ in first place) . I asked if it was about cost and she replied “oh no. It’s that if they had an audit in the department they would be in trouble for continuing to prescribe it”.Really?? What happened to patient care? It looks like we’re all going to have a battle with this.
I am not sure what the rationalisation is for it's limited availability, cost probably, but I wouldn't imagine there are an absolute army of us requiring it! One earlier commentator suggested it was being rediverted to treat Covid patients which is plausible particularly if we are finding that we are all or many of us being told that at the beginning of winter, that level of synchronicity would indicate that there is a policy behind it and we have a new health minister also.
Thanks for your response, I find it encouraging that thus far you have not had a flare up. I think I will start stretching my injections to two weeks now as It may educate my system that a change is coming, just stopping something dead never seems a good idea.
I think it is definitely worth trying 2 weekly jabs. I had to change to 3 weekly because of neutropenia and that was successful. Not so sure about 4 weekly but about to give it a go.
A PET scan can determine if you still have GCA and Southend also do ultrasound. I take TZ three weekly supported by mycophenelate and have been on TZ for over 3 years due to being on a trial. A case can be made that mycophenelate takes 2 months to be fully effective and can work on uts own so there is a case for continueing with TZ til myco kicjs in and myco can work fairly well on its own. I took TZ 4 weekly for a while but did relapse. Hope thst helps.
Anything form other people experience's helps so thankyou.
Hi, I too am due to finish Tocil. next March. I had arthritis in my hip, neck, and back before being diagnosed with GCA/LVV. I finished taking Pred. (after 1 previous failed attempt earlier this year) in October and now have the very same aches and pains from the above as before. I also have a headache some nights which has been diagnosed as migraine, which I had for approx. 20yrs. All the above disappeared with Pred. I don't feel bad, but am not sure how I am supposed to feel (hope that doesn't sound too surreal). I also feel breathless, and have sinus symptoms, sorry to moan, but it feels like a lottery sometimes, at least with the Pred. tests, we had an idea how we were faring.
OA pains are masked by higher doses of Pred, but certainly resurface as you get lower - if you are sure that’s what they are have you tried painkillers or topical gels? Ir flexiseq?
They certainly are (masked)! I almost wish I could go up to 10mg.😏
True!
I probably would ...
I had a feeling you would say that!😂 As the arthritis is inflammatory I suppose even the doctor would say "increase the pred", but I really don't know by how much (after all this time)!! I suppose 7 mg would probably be enough. I cannot reduce the pain killers (Cocodamol) because relief comes within 3/4 hr with just one tablet.
No I haven't, but thanks for the advice. The Rheum. last time gave me 5mgs. to prevent a possible flair, but I had to start tapering again. It was nice while it lasted!
I’ve been on Actemra for 5 years. I think your ophthalmologist is making a mistake.
You may be correct, but for information, the difference between Ancient Mariner’s case and yours, is he is in UK, you are in US…different protocols apply.
At the moment in England, Actemra/Tocilizumab is only licensed for use in some (not all) GCA patients for only one year (although during Covid the rules have been relaxed slightly).
It’s also Government policy, not necessarily individual consultants.
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