Any experience of having GCA and Actemra (TCZ) being discontinued while still trying to taper steroids

[Alpineflower]

Diagnosed with GCA June 2019. Tried to taper Prednisolone but had a few flares so was prescribed TCZ (weekly injections) to see if it would help. I succeeded in being able to taper twice to approximately 18mg Pred/day but then have had flares and to get the inflammation under control have had to increase Pred dose to 50-55 mg each time and then start to taper again. Since last flare I tapered fairly fast down to 30mg Pred and then tapered 1mg/week until reached 25mg/day. Currently I am on 24mg Pred and now it has agreed that I can taper much more slowly (since reaching 25mg Pred) 0.5 mg every 2 weeks. They have now (after 1 year, which I know should be the time limit) decided to stop the TCZ as found no evidence of arterial thickening by Ultrasound in the neck arteries and therefore they have said there is no evidence of active GCA....but I have no GCA pain as I am not in a flare situation and the inflammation is under control. When I was first diagnosed by biopsy, 3 weeks after being on 60mg Pred/day, the path report stated I had 'severe' GCA, including blood clots still present.

For the past year I have 2 frozen feet and one hand that is also affected with tingling, it is like peripheral neuropathy but the Rheum says it is not related to my condition or drugs. I think there is a study being done to look into LVV being linked to Peripheral neuropathy. Does anyone know of this study, as I would be very interested. My GP checked me for Diabetes 2, B12 levels and Thyroid function, but all OK so will need to see a specialist, but with the Covid situation this will take at least a year.

When I stop injecting the TCZ, does anyone know if a flare will/could occur and therefore will have to increase Pred dose again, or will it be better to increase the Pred dose to try and compensate for any protection the TCZ was giving me? The side effects of the Pred are so awful that I am extremely concerned about the effect of withdrawing the TCZ and having to again increase the Pred dose. I understand that TCZ does not work for all, but at least I was able to taper to 18mg Pred and I have always been told that I must get the Pred dose reduced. As the faster taper regimes have never worked for me, like for so many others, this time I am trying to taper really slowly, even thinking of trying the DSNS regime. I am also on Methotrexate 15mg/week, since last flare. Any advice or comments would be great.

[PMRpro Ambassador]

I have to say - I would have thought that just because there is no sign of active GCA in the carotid arteries it doesn't mean you don't have something! One of the characteristics of GCA is that it forms skip lesion - it isn't evenly distributed throughout the body.

Have you had your ankle pulses checked? And been referred to the vascular medicine/surgery unit? Cold feet and tingling aren't only due to nerve problems.

[Alpineflower in reply to PMRpro]

Thanks so much for your reply. Did not know about skip lesions but will now investigate. I have not been referred to vascular medicine or had ankle pulses checked but will also investigate this as the ‘frozen feet’ which manifests as feeling of numbness makes walking uncomfortable and is worrying.Thanks for your helpful comments.

[PMRpro Ambassador in reply to Alpineflower]

Just had a memory poked about what I had said: there is an increased incidence of peripheral vascular disease after GCA/LVV. Poor blood flow could account for a lot of your symptoms and should be looked at.

[SheffieldJane]

I am on 1 year of Tocilizumab. Please let us know what you find out about the impact of stopping and your remaining - if any-Pred dose. Perhaps they just don’t know. My LVV appeared in my armpit.

[Chrisellie]

Hi I would like to be able to help but your journey is different to mine. I was also on Tocilizumab / Actemra weekly injections. My journey is in my profile. Hope you get to the bottom of everything soon. Take care. Stay very safe.

[Rugger]

I am on Tocilizumab injections and due to stop in April after my year's 'ration'. I'm on 5mg pred at the moment for PMR / GCA-LVV and like you, am wondering what will happen when I stop the TCZ. I believe my Rheumatologist is thinking of introducing Methotrexate or another DMARD.

My GCA-LVV is in my aorta and its branches from neck to legs - fortunately at the moment it is not affecting my eyes. I had a PET-CT scan at diagnosis which showed the extent of the inflammation.

Let us know how you get on. Best wishes.

[Katiecatweazel in reply to Rugger]

Hello Rugger. As I'm slightly ahead of you I thought you would like to know that so far , so good, for me since I completed my TCZ on the first week of November. About six weeks beforehand the Rheumatologist prescribed MTX 10mgs to avoid a 'cliff edge'. I have tapered to 2mgs Pred and am sitting there in current situation. Blood results are checked monthly inc liver because of MTX, AOK so far. Liver stiffness test next. She's going to follow up in a year which seems a long time but hey ho. All the very best.

[Rugger in reply to Katiecatweazel]

Thank you so much for this KatieCW. That sounds reassuring if I do start MTX. Reading Devoid's reply, one would have hoped that for 250 of us, they would have extended the TCZ period indefinitely, or until CV-19 is no longer the issue it is now.

All the best to you too.

[PMRpro Ambassador in reply to Rugger]

I think it is appalling it is so restricted at all - not so when using it for RA, no permission required, no time limit as far as I can ascertain.

[Devoid]

Hi my 12 months of tocilizumab was up in November but the government wrote to me extending it until April as it was considered risky to stop during the pandemic. The letter said that there’s only about 250 people in the uk that it would effect so I’m surprised that they are stopping yours at this time

[Rugger in reply to Devoid]

I had heard about the extension to April, but as I started TCZ in March, I get just 2 extra weeks! If it was considered risky to stop during the pandemic, do you suppose CV-19 knows it's got until April to 'disappear'?! Maybe you/we'll get another extension - for 250 of us it's not much to ask. Watch this space!

[Devoid in reply to Rugger]

I think there’s a good chance that they will extend again, the letter I received said it was because they would want to keep me out of health settings, when regular monitoring would be needed initially After stopping medication. I have already had my March consultant appointment cancelled so it doesn’t bode well to getting back to normal quickly

[Rugger in reply to Devoid]

🤞 and 👣!

[PMR2011]

Given that GCA tends more towards lasting 5 years, will need to be very alert when stopping the TCZ. There have been cases where inflammation was evident with imaging even though symptoms were minimal. This link has some interesting cases. videocast.nih.gov/Summary

[Rugger in reply to PMR2011]

That is my worry. I had very few symptoms of extensive inflammation, other than elevated CRP & ESR, but the PET-CT scan images were scary! How will I know when I stop TCZ, other than waiting for the CRP to rise again....

BTW that link doesn't work for me.

[PMR2011 in reply to Rugger]

Sorry, I think I copied only half. Try this: videocast.nih.gov/Summary.a...

[Devoid in reply to PMR2011]

Thanks for that pro , a most interesting presentation. I have been questioning the monitoring of the disease after treatment and it all seems to be on a wait and see basis , plus blood results, not sure that seeing it on post mortem is that helpful to the individual!!

[Alpineflower]

Thank you for your reply. You seem to respond well to TCZ but I am one of those that do not but it does not necessarily mean that it has not helped me to taper down to 18mg Pred as I was having difficulty before the TCZ in getting down to 40mg.....I will have to wait and see what happens when I have stopped the injections....quite a frightening scenario.

My peripheral neuropathy started 6 months, after being diagnosed with GCA, in both feet with slight numbness/tingling just in toes. Now 1 year further on are both feet are quite numb/tingling but improves slightly when go to bed and 6 months ago the numbness feelings began in both hands and on one side it is spreading up forearm. My feet also go very cold and pale which suggests to me that the blood supply is not good. I also have very weak legs, but thought this was probably due to the Pred dose. Hoping GP will take it seriously and send me for further tests to find out cause as Rheum says it has nothing to do with my meds or GCA, which I find difficult to understand. Going to ask about having ankle pulses checked as the Pro suggested.