Tocilizumab: I have GCA and was fortunate to have... - PMRGCAuk

PMRGCAuk

11,743 members21,437 posts

Tocilizumab

DAW28
DAW28

I have GCA and was fortunate to have one year of Tocilizumab as per NICE guidelines. I was wondering if anyone would like to share their experience?

Thank you

35 Replies
oldestnewest

Hello DAW28,

I have been on Ro-Actemra (Tocilizumab) sub-cutaneous self-injections since mid July last year, after having been diagnosed with GCA in June 2017, and suffering really terrible side effects with Prednidolone.

I am unusual in that I have had no pain at all since the initial GCA diagnosis and blood tests are the only way I know I am ill- a PET-CT scan (after a sudden rise in CRP and ESR levels in September 2018) showed I have severe, life-threatening large vessel arteritis affecting all of my major arteries.

Tocilizumab has given me my life back. I have had no adverse effects, and am now taking nothing else at all- no steroids, Omeprazole, aspirin, anything.

Initially, I was told I could be on it for 1 year only- apparently this is a postcode lottery since I have heard from other people ( in the UK) that they are given it for as long as deemed necessary, and have heard from Dorothy Byrne and others (via PFA-GCA uk) that they believe this was the general situation. I hope they are right because I cannot go back to Prednisolone, and there is no alternative that works for GCA, and it makes no sense for NICE to recommend it for use with RA whenever needed but to deny it to the ( far fewer) people with other auto-immune conditions like GCA/ large vessel arteritis.

Note that the one year is a NICE “ Guideline” or recommendation for GCA and needs to be rethought! (As Dorothy Byrne has said in her articles , and on Desert Island Discs, conditions affecting mainly older women tend to be treated with less compassion! ).

PMRpro
PMRproAmbassador in reply to Suzita76

I wonder if there is a difference when there is proven LVV - which makes it much more like Takayasu's which can be treated with tcz, like RA.

Suzita76
Suzita76 in reply to PMRpro

We have to hope so, but living with this uncertainty is very stressful, and having been told to reduce blood tests to 12 weekly because of Corvid 19, it is even more imperative ( for me at least) to stay on Tocilizumab- my inflammatory blood factors dropped to normal levels within 2 weeks of starting injections and have remained so ever since.

When I was on Prednisolone, CRP and ESR were up and down all the time , presumably indicating large vessels being attacked again, (though one can’t be having PET-CT scans all the time to confirm). Prednisolone over 30 mg caused me to have horrendous side effects- hallucinations and severe psychosis being the worst ( plus pre-diabetes, and hair loss), but I can’t do that again- cyanide would be quicker and kinder!

PMRpro
PMRproAmbassador in reply to Suzita76

That's what I meant - it is allowed for Takayasu's, only GCA for which they have the time limit. It was also approved very quickly for that while the GCA approval took ages. Or has it more to do with Takayasu's being found in young people? It means the potential long term costs are far higher ...

Devoid
Devoid in reply to PMRpro

That’s interesting, I can’t imagine going back to a high dose of steroids or worse more methotrexate as Suzita says it’s definitely give me my life back, not the same one as prior to LVV but at least one I can adapt to

DAW28
DAW28 in reply to Suzita76

Hello Suzita76, Thank you for your reply. I have had GCA for 10 years and felt so well on Tocilizumab that I felt like my 'old' self. I did relapse after TCZ was stopped but I feel we must get ready to make our case for the therapy when NICE reviews the drug in 2021. PMRGCAuk did a sterling job in making our case before the drug was authorised for GCA by NICE and I feel we must be ready to put our experiences to NICE when the time arrives. Best wishes.

Suzita76
Suzita76 in reply to DAW28

Absolutely, which is why I have been trying to galvanise support from highly influential people like Dorothy Byrne ,( who is also a GCA sufferer, and I was told, is now on Tocilizumab), especially with her history of being such a strong advocate for older women’s rights.

Another point is that being in Toc. is much safer from the Covid 19 point of view than being on generalised sledge-hammer immune suppressants like steroids. Only a small part of one’s immune system is specifically targeted (the Interleukin-6 receptor), so we are not entirely defenceless and our B cells are still around to make vital antibodies.

If you have received a letter about your vulnerability status from NHS as I have, you will see that being on Toc. counts for 1 point, whereas steroids count for 3 ( and being over age 70 counts for 1 point). The very vulnerable group are those with 3 points.

PMRpro
PMRproAmbassador in reply to Suzita76

It depends on the pred dose - it isn't blanket a 3. And it also depends on the history. It isn't that simple.

Suzita76
Suzita76 in reply to PMRpro

Quite, but if you are just on Tocilizumab, (which allows faster tapering of steroids to zero, in many cases) .........

PMRpro
PMRproAmbassador in reply to Suzita76

Still limited by adrenal function if you have been on pred for any time. And 50% of patients with GCA still require some pred.

DAW28
DAW28 in reply to Suzita76

I agree. We need to muster all the help we can get.

I have the letter that says that because of immunosuppressive medication I 'fall into the extremely vulnerable category of people who require "shielding".

Hidden
Hidden in reply to DAW28

This was posted earlier today by pmrpro ....for your information just in case you hadn't seen it previously. Requires no reply.

versusarthritis.org/about-a...

Hidden
Hidden in reply to Suzita76

You have simplified it a bit in terms of health history and the process of asking people to socially isolate and shield themselves and the NHS.. I have had all the commitment to help and phone calls that I could possibly ever want, but the practical feet on the ground has taken 5 weeks to lock in understandably. I want people checking out who deliver my food and drugs. If you check out another part of the forum on toc you will see there is a general warning re the impact on the immune system that says clearly any infection requires suspension of actemra and that's from the drug company. It's no good looking for simple black and white explanations or calculations in a grey and complex situation. Dorothy Byrne is a trustee of the charity that runs the forum I believe.

I want to be safe and not argue over a point or two in terms of defining my "level" of risk. In the grand scheme of a lifetime staying home for a few months isn't that hard if you turn your mind to it. If the 6 year old and 10year old next door can do it I can. ☺️ It is after all up to you/one if you choose to follow the guidelines.

The RVS are desperate to help but no one seems to be taking it up. 600, 000 volunteers and 50,000 up take. Most people seem to want meds and shopping. No one finds it easy to get that in terms of home delivery. The box scheme is in place in most places..

Suzita76
Suzita76 in reply to Hidden

Of course, we all have different medical histories, complex problems, and different needs. I can only speak for myself; Tocilizumab has enabled me to cease taking any other medications and to feel human again- it has been a life-saver ( and because it acts so narrowly and specifically, it is most likely to be less problematic than other non-specific treatments).

Hidden
Hidden in reply to Suzita76

I think it would be good if all gca patients had the opportunity to at least try actemra, but vulnerability in the context of covid 19 is based in the past few years and the autoimmune issues you have which may be in remission ( or not).

Suzita76
Suzita76 in reply to Hidden

That’s the point- it should be available to all GCA patients to try, (and of course, it may not work for everyone).

With regard to Coronavirus, we ALL need to be shielded- my 44 year old daughter ( a very fit lady , a mountain climber, long distance cyclist, runner) fell suddenly and seriously ill just before the lockdown. Her symptoms were classic Covid-19 and we were terrified - raging fever for 5 days, couldn’t breathe. Our 9 year old granddaughter had been “a bit under the weather” the week before. They think it came from some children at their school who had just returned from skiing in Italy, and who knows?

So no one should take this lightly. I’ve made masks for all my family and friends, and we wear them ( and decorator’s rubber gloves) when we have to go out- who cares how silly we look!

(My masks are a double layer of cotton with non-woven interfacing in between. There are lots of patterns on the internet- mine can be microwaved, damp, for 2 minutes or laundered at 60degrees for 30 minutes to sterilise which will kill any RNA virus like Corvid. I’ve tested them- elastic ear loops are fine, and I’ve inserted a removable bendy wire nose pinch over the bridge of the nose, plus Velcro under the chin to get a good fit).

I’m sure most people on this forum are of an age that learned to sew, so won’t have to buy disposable masks that might deprive our frontline services of vital PPE.

Hidden
Hidden in reply to Suzita76

Believe me if you knew the 10 years of skills, pressure, old friendships being used in high places , contacts and general patients forum set up in research and members of this charity and forum had used to try an shape PMR and GCA treatment protocols. Only last year a patient group managed to get nice to reduce potential age of onset of PMR to 40ys instead of 50.

10 years a long time for "small" changes but they are massive added up. I am entering my 5th year of PMR and the information flow to patients and Dr is phenomenal. Some rheumies now recommend Dec the site to new patient. Result. If more to that with colleagues then research starts to be coordinated . The research of the effects on the 8th cranial nerve happened from here. Some people have been doing significant things via being research partners who have more impact on policy change...if possible!!

PMRpro
PMRproAmbassador in reply to Suzita76

Maybe - but while I used to make my own clothes I don't have a functioning sewing machine and I won't be buying one.

However, the purpose of individual face-covering is not to stop YOU getting the virus but reduce the chances of you giving it to OTHERS when asymptomatic. The fabric masks will not stop you catching it - neither do the green "medical" masks you see people wearing. They are intended to protect staff from accidental splashes of body fluids - not the virus.

And skin, disposable gloves or decorators' gloves - pretty immaterial for us. The outside becomes contaminated and require either correct disposal or sanitising. Incorrect use of PPE probably spreads it as much if not more than not having it - it conveys a false sense of security. As you see with someone standing at a checkout with a trolley, wearing gloves, holding a pack of crisps in one hand and eating a crisp with the gloved other hand. Or removing a mask by pulling it over their head touching the outside which is potentially contaminated.

But one pair of decorator's gloves - how often do you clean/change them while out? I clean the trolley handle with kitchen roll and bleach cleaner - including the slot mechanism for the coin - I use gel and put on gloves to wear gloves around the shop and dispose of them as I leave, using the kitchen roll to hold the trolley handle until I have returned it, again cleaning the handle and coin. Then I use gel on my hands and wash them thoroughly when I get in the house. By no means perfect even so.

Suzita76
Suzita76 in reply to PMRpro

You are right- I suppose I take common sense too much for granted (and having worked for many years in high security microbiology labs. where everyone is trained in such safety procedures, should not assume that the majority of people will do things correctly).

On the radio yesterday, a specialist was warning people that flushing the loo without putting the lid down, for instance, could spread viruses in micro-droplets, which could land on surfaces.... such as toothbrushes.... again, “common” sense and we should be doing it anyway.

Do you think something like a YouTube video on simple procedures ( like safe use of face masks, cleaning doorknobs/ handles, quarantining mail, “Milton” treating fruit and vegetables, decontamination of cans of food, etc. etc.) might be helpful?

PMRpro
PMRproAmbassador in reply to Suzita76

Probably not - they rarely manage the handwashing properly even with all the ads on TV ;)

Tamtan2
Tamtan2 in reply to DAW28

I have tmr and Gca not many tmr symptoms lately had it roughly 4/5 Year’s undiagnosed but still on prednisone so don’t know can anyone tell me why my rhuemy nurse told me he doesn’t think need to be on tocilizumab To taper. What Else is on offer? And is it right that Gca activity takes 6 months to Settle down diagnosed March officially but still have lumpy head and tenderness. Nurse said I’m to highly strung, no wonder can’t get any answers on where my immune system is affected.🙏🏽

Tamtan2
Tamtan2 in reply to Suzita76

Talked with rhuemy nurse Monday After bloods Which all normal except for kidney function I’ve had chronic kidney disease in the past but recovered. I’m on 25mg prednisone only nothing else want off prednisone ASAP I asked about tocilizumab Nurse said I didn’t need to be on tocilizumab to to taper. I think I had a flare up over a week ago So they up dose for a month to 30 mg.as I have few old symptoms ie running to loo every 1/2 hour usually ending in an accident? I know I have no problems with bladder i I have been to see specialist who stated I’ve a healthy bladder etc for my age 69 so what is this very embarrassing add on symptoms? Anyone help me here is this linked to the kidney function. 🙏🏽

PMRpro
PMRproAmbassador in reply to Tamtan2

It is very unlikely you will be able to get TCZ until your GCA has posed problems with repeated relapses. The guidelines in the UK are very strict - and you only get it for a year anyway. After a few months of GCA and already at 25mg it is really not going to be considered to be required.

Both PMR and pred can cause interstital cystitis. So can calcium supplements so if you are taking them try stopping them for a while. We have said for years that PMRGCAuk should have taken out shares in Tena ...

Tamtan2
Tamtan2 in reply to PMRpro

Thank you I’d never heard it could affect the bladder but this illness can affect anywhere At least I know it’s not abnormal.🙏🏽 Off to loo yet again.

PMRpro
PMRproAmbassador in reply to Tamtan2

I told Prof Mackie - she asked her patients. And yes, to her surprise she discovered it was the case.

I was diagnosed with PMR in May 2016 and by November 2019 I seemed to think that it might be going into remission. My CRP and ESR had always confirmed how I felt - if my PMR pains were worse, the blood levels were up and an increase in pred brought the pains and the blood results under control. However, in 2019, my blood levels kept rising without any return of PMR symptoms. A PET CT scan revealed, likeSuzita76, that I have GCA-LVV in my aorta and its branches.

I started on TCZ 6 weeks ago and after just 7 injections I have so much more energy than in the past 4 years. I am reducing the pred by 1mg a month and am now on 7mg.

It's early days for me in terms of the one year 'ration', so I'm taking it one month at a time, especially in the present situation of COVID-19. However, it would be good to keep in touch with others who are on Tocilizumab.

DAW28
DAW28 in reply to Rugger

Hello Rugger, I'm pleased the drug is working for you. I agree, we must keep in touch and be ready to convince NICE when the time comes.

Have you completed your year ? Not quite sure what you would want to know at that point

Hidden
Hidden in reply to Devoid

I presumed it was how you go if GCA still active after the one year.

It seems a sad state of affairs that even if it works and reduces pred to very low or zero that it's a year whether or not GCA still active. Obviously based on the 18month to 2 year obsession.

Chrisellie
Chrisellie in reply to Hidden

I have completed my 12 months. My markers were good all the way through. I was told if I have symptoms to get various bloods tested and if increased I would be put back on Tocilizumab and possibly Prednisolone depending on how bad I was.

Extra note.....There was no tapering involved with Toc just stopped after 52 injections.

Hidden
Hidden in reply to Chrisellie

That's good. Fingers crossed you are ok and good to hear they will revisit. Let's hope they don't have to. 🤞🌻

DAW28
DAW28 in reply to Chrisellie

Hello Chrisellie. That is really good news. I am pleased that it has worked so well for you. Hopefully you will not need further therapy.

I was on Pred for PMR for 7 years and had tapered to 2-3 mg when I was diagnosed also withGCA of the LVV type. I went on Actemra after a year of high dose Pred and it has worked very well for me. I have been on it 2 years and a bit. Tapered off Pred the first year. Am off all other meds except D3. Have good energy, and no side effects from the TCZ. Have tapered to every other week injections and hope to go monthly soon. Our disease makes us just as vulnerable as our treatments for Covid (or other infections) so have always been conscientious on prevention.

It is a bit ridiculous to think you would only need treatment for one year since the disease lasts much longer than that. Hope it works for you and that you can get it as long as needed.

DAW28
DAW28 in reply to PMR2011

Hello PMR 2011. I have had GCA for 10 years and have been unsuccessful in stopping Prednisolone and Methotrexate. I felt great whilst taking Tocilizumab and would be pleased if NICE removed the one year restriction. I feel we need plead our case with NICE in 2021.

Devoid
Devoid in reply to DAW28

My consultant suggested that nice would review once they had more data available. I have been on tocilizumab since November with fantastic results towards previous 5 months firstly on pred and then pred and methotrexate. Would be interested to hear from anyone who is on tocilizumab, methotrexate and pred as I’m still on all three , pred now 5 mg

You may also like...