??Tocilizumab

[Hiland]

I recently posted for the first time about a flare up of GCA symptoms and raised inflammatory markers. This resulted in raising my Pred. from 10 mg to 20 mg after repeat bloods after one week were still raised. The plan is to reduce by 2.5 every 2 weeks. I was diagnosed with GCA in Mid May 2020.

My Rheumatologist would now like to start me on Tocilizumab and while I know it has good effect for some for GCA I personally feel it is too early. I am also not keen on introducing another drug with potential side effects. I would be interested in your thoughts around this, and maybe some comments from people who have started on Tocilizumab fairly quickly after a diagnosis of GCA. Thank you.

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[PMRpro Ambassador]

The ideal would probably be to start TCZ at the same time as pred - that is what was done in the clinical trials. It would minimise the time you are on pred and some in the trials were off pred in 6 months. Did the rheumy say what protocol he would use?

[Hiland in reply to PMRpro]

Thank you

[Hiland in reply to PMRpro]

Hi PMRpro, My Rheumatologist said that I could taper by 2.5 mg every two weeks if symptoms were resolved and after I have had 2 doses of TCZ. I am still having symptoms but having blood tests on Tuesday.

[PMRpro Ambassador in reply to Hiland]

Not necessarily at all - as with so much in PMR/GCA, everyone is different.

[DeepThought2]

Dear Hiland. I started directly after my diagnosis with Tocilizumab and prednisolone. That was three weeks ago (i.e. got three injections by now) and the idea is to get to zero pred by July/August (if everything works as planned 😀). As PMRpro said - the idea is to reduce the cumulative cortisol dose over time. Cannot say much about side effects on blood related markers, yet. Except that the cholesterol levels increased a bit. CRP went below the detection limit (which is as expected). I have no other obvious side effects until now (in contrast to the pred side effects). My rheumatologist (in Germany at a University hospital ) said that this is at present their standard procedure.

[Hiland in reply to DeepThought2]

Thank you, reassuring that you have no side effects.

[DeepThought2 in reply to Hiland]

Just talked to my rheumatologist - they said that increase cholesterol could definitely also come from prednisolone. They also state that the risk of acquiring infections is not much higher than with pred only.

[PMRpro Ambassador in reply to DeepThought2]

It could - but TCZ is also a culprit for raising cholesterol.

[DeepThought2 in reply to PMRpro]

I fully agree - so I need just to see how values change during pred tapering. If the remain high it is rather TCZ.

[PMRpro Ambassador in reply to DeepThought2]

They will probably tell you that any weight gain is due to pred - but it is a common problem with TCZ too.

[Frewen1]

Am intrigued by your experience (being offered simultaneous TCZ) as I was diagnosed in August, just a couple of months after you, and have been told in no uncertain terms that I will not be considered for TCZ. Currently alternating 15/12.5mg pred. Have distinct impression a major factor is the cost.

[PMRpro Ambassador in reply to Frewen1]

It depends on the country and the protocol that has been approved by the fundholders. The UK has initially limited its use to relapsed/refractory GCA patients. There is work ongoing to make representations to NICE for less regulated approval.

[Frewen1 in reply to PMRpro]

Thanks for that.

[Hiland in reply to Frewen1]

I am in Scotland and no mention was made of TCZ until my relapse. Maybe that is why.

[Frewen1 in reply to Hiland]

I think that’s right. As I seem to be trundling along ( although feeling permanently radioactive and vague) it won’t be a suggested option.

[Devoid]

I would say that the sooner the better,when I was diagnosed my consultant said that in the states I would have been prescribed tocilizumab straight away, here in the uk you usually have to show you are not responding well to steroids and in my case the addition of methotrexate. I only started to improve and be able to reduce the steroids after starting tocilizumab.Nice guidelines and cost at present are at present holding back this treatment that can be so beneficial.

[PMRpro Ambassador in reply to Devoid]

I have noticed that people with a delayed diagnosis struggle a lot more later - I do wonder whether the insistence on holding back tcz is actually adding to the difficulties in the long term - i.e. they are actually creating or at least exaccerbating the problem.

[Devoid in reply to PMRpro]

I certainly think in my case it caused problems, it was as if the tocilizumab let the steroids do their work, previously to the introduction of tocilizumab the inflammation was never fully controlled and to my mind continuing to do damage. Fortunately with always walking I have managed to get back to it , whereas I think a lot of people could lose their mobility long term and then have increased risk of co morbidities.

[Frenchduck]

Hello Hiland, I think my experience of treatment sounds similar to yours so I offer this as my advice. I was diagnosed with GCA in April 2020. I took prednisone to start with at 40 mg and tapered to 30 mg by the beginning of July but the CRP started to rise on this dose so I went back up to 35 mg. I got down to 30 mg by the beginning of August and the CRP was on the limit and it went up again when I reduced to 25 mg. The specialist said she didn't want me to keep going up and down like this and that she was going to introduce weekly injections of Tocilizumab so that I could taper the prednisone further and to zero if possible.Like you, I really didn't want another drug. I'm one of these people who reads the leaflet inside the box and doesn't want to take anything! I didn't have much choice and had my first TCZ on 22 August 2020. For me, this was the best decision ever as I tapered down to zero prednisone on 18 January 2021 and during the taper I felt progressively better. Up to now I have had 22 injections. I would normally have one today but as I had the 1st Pfizer vaccine yesterday I am waiting until Tuesday before having it. After one more month, providing I am symptom free and the blood results are good, I will go to injections every 10-11 days for another 3 months. I am pleased with this programme of treatment as I can see light at the end of the tunnel and I feel back to normal. I just need to get fit again.

My advice would be to grasp the opportunity with both hands, to take the TCZ and to taper the prednisone.

[Hiland in reply to Frenchduck]

Thank you for responding to me. If CRP is still up on Tuesday I probably will. start TCZ. My symptoms have not really improved on the recent raised dose. It is good to hear that you are so happy with the result.

[Frenchduck]

Let us know if you do and good luck. I for one will be rooting for you.

[Chrisellie]

Hi I also was on Tocilizumab weekly injections very quickly and have been successfully off everything for quite a while. All my details and reduction programme are in my profile attached to my avatar.

Always a personal decision .

Hope it works as well for you as it did for me.

[Hiland in reply to Chrisellie]

Thank you for responding. It is so helpful to hear other people's experience

[Kafkaontheshore]

Hi there. I was diagnosed with LV-GCA last September and started Tocilizumab last week having not been able to get below 20mgs pred as I felt so unwell and fatigued. Also on methotrexate which hasn’t appeared to have helped. Started on Tocilizumab as have been on steriods for nearly four years for PMR (low dose < 10mgs though) and have a flare of GCA symptoms when trying to reduce below 20mgs pred over the last few months. The aim is to get off pred in six months which would be amazing. I am very hopeful re Tocilizumab especially reading research and other posts here. I also see it as trying to protect my body (arteries) into the future. I agree about adding more drugs but the steriods at higher doses can be very destructive so here’s hoping. 👍 good luck.

[Hiland in reply to Kafkaontheshore]

Thank you. Keep in touch about how you get on with Tocilizumab when you have been on it a while

[Grammy80]

I was diagnosed with GCA in August of 2019. Steroids just didn't quiet the GCA and they did not want to give me TCZ because of a previous stomach bleed and diverticulitis. I was on 100 mg of prednisone at the time. They put me on TCZ in early October and Medrol, 65 mg per day. At present, I'm still on the weekly injections and 14 mg of prednisone and hoping to decrease by another mg next month. For me, TCZ was a blessing. 💖 Hope this helps.

[Hiland in reply to Grammy80]

Thank you