Has anyone got any experience in coming off Tocilizumab to start on Methotrexate?

[sequeluk]

I have been on Tocilizumab since August 2021 but the funding for this is being withdrawn. I have been off steroids now for over 2 months so without the Toci I have nothing to ward off any flare-up of GCA. Due to being relatively asymptomatic before diagnosis and losing sight in one eye very quickly rheumatology are recommending starting on Methotrexate to avoid any catastrophic recurrence that could lead to damage to my good eye. This seems a sensible course of action and would probably avoid much worrying from me about a recurrence of problems. However, slightly reticent to start on another biologic which, from all I've read, does seem to have some potential side effects and also question the effectiveness of Methotrexate to control GCA as I haven't seen a lot of posts on this site that has anything that's very positive to say about it. Interested to hear if anyone has gone down this route.

[PMRpro Ambassador]

MTX isn't a biologic, it is a DMARD. It is used together with TCZ in RA so combining the two isn't unusual. There are several people on the forum who have been on TCZ for the restricted time the UK allows it and have been switched to MTX as that end point came.

It does have side effects, it doesn't have a proven record in GCA - but it is the only option available other than deciding to go it alone. As I'm sure you know, it is used by quite a few rheumatologists in PMR and for some patients it doesn't cause severe adverse effects and it does work very well. It doesn't work for everyone - but the only way to find out is to try it. All drugs have potential side effects and there are no guarantees except for pred and TCZ, both of which are known to work very well in GCA.

[sequeluk in reply to PMRpro]

Thanks for the reply.

[Erikaknitssocks]

I was taken off TCZ in the summer as it kept making me neutropaenic - it was disappointing as it worked and ha no other side effects. I am 53yrs old and my LVV did not progress to GCA - but my rheumatologist jumped on the LVV very quickly with steroid infusions and a steroid taper thenTCZ when the LVV was discovered (chest pain and a previous history of PE and stroke meant X-ray and CT scan were carried out and hence LVV was discovered). I was already with rheumatology at that point for inflammatory arthritis/RA and possibly secondary fibromyalgia (whuch turned out to be LVV). Apologies, long story but I’m getting there! So I was put on methotrexate after the TCZ was stopped. I did a lot of reading on here as I was worried about side effects, and I chose to take it at night to mitigate any gastrointestinal issues. I’ve had no side effects and I’m at week 6. However, coming off the TCZ caused a flare of symptoms for the LVV (for me it’s exhaustion, dizziness, shortness of breath) and I was on a fast reduction of steroids before the methotrexate started. And I was back again on 30mg of prednisone at week 5 of the methotrexate - this week I’m on 25mg, due to another flare and massive increase in inflammatory markers in blood results. I’m lucky as I’m not on shared-care and my rheumatology dept (nhs) respond quickly when symptoms return. I don’t know whether the methotrexate will be effective for me - it’s maybe too soon to know. I have a consultant appointment in January so will be discussing it then. So for you, hopefully your experience with the methotrexate will be like mine in that you have no side effects and also as you will be monitored with regular blood tests whilst they assess if it works for you, it will give you the opportunity to see if it does have the effect you need - or you try something else. Good luck!

[sequeluk in reply to Erikaknitssocks]

Thanks for the reply and good to hear you've not had any problems with it. Surprised that they didn't keep you on Tocilizumab as I thought it was authorised for continued use in RA patients. Hope it is is effective for you and you get the inflammation down and reduce the steroids. Not sure there is anything else to try if the Methotrexate causes issues. Best wishes.

[PMRpro Ambassador in reply to sequeluk]

It depends how severe the neutropenia was - if it gets too bad, it is too dangerous to persist with TCZ,

[Erikaknitssocks in reply to PMRpro]

that’s exactly it, my neutrophils dropped scarily low … the TCZ was too effective 😂

[PMRpro Ambassador in reply to Erikaknitssocks]

Did they try spacing the injections further apart?

[Erikaknitssocks in reply to PMRpro]

yes, we tried that after I read on here that others had done it successfully, but for me it was just each single TCZ injection made me neutopaenic. It was disappointing for me as it also made me feel well…

[PMRpro Ambassador in reply to Erikaknitssocks]

What a shame.

[Kafkaontheshore]

Hi Sequeluk. Like you I finished Tox when my year was up in February this year. I had already been started on MTX so continued with this. I had no side effects really but at the same time didn’t feel it did much for me in terms of symptoms which have mainly been extreme fatigue. I had a flare of LVV in June so back to 40mg Pred and then again in November so again back to 40mg Pred. I was also switched from MTX to Mycophenolate, another DMARD. I’m starting Sarilumab today. An Il-6 receptor antagonist like Tox as my LVV still active and I’ve had two small strokes in the last four months. Sorry lot of detail about me but basically I think it’s worth having some protection on board. As PMRpro said it’s about finding the right combination that suits you. Good luck 😀

[sequeluk in reply to Kafkaontheshore]

Thanks for the reply and encouraging to hear you've not had any side affects which is my main concern. Agree that it is good to have some protection as I would be constantly worrying about a recurrence (or worrying more because it is always at the back of your mind). Up to now have not really had any flares and my reduction to zero prednisolone went pretty smoothly. Also, good to hear there are some other options that you mentioned. Hope you get everything under control and can reduce your steroids. Kind regards.

[PMRpro Ambassador in reply to Kafkaontheshore]

How did they get the sarilumab justified?

[Kafkaontheshore in reply to PMRpro]

They put me forward as a special case due to the flares and strokes. It is not via NHS England but funded by the hospital itself.

[PMRpro Ambassador in reply to Kafkaontheshore]

Very interesting though - hope it works.

[Rugger]

I finished TCZ in May this year and around the same time, had tapered the pred to zero with its help. This would have left me on no medication for the GCA-LVV - a similar situation to yours. Therefore, my Rheumatologist started me on MTX to ward off any potential flares. I have been on it for 7 months and haven't experienced any untoward effects that I can blame on MTX - other than being quite alarmed by the huge list of possible side-effects on the information leaflet in the packet! My Rheumatologist describes MTX as "gentle" in the doses we take and says the list is long because the drug has been around for so many years. The plan is to take it for a year and then decide what next?

I take folic acid 5mg on 6 days a week and have regular blood tests - my GP is 'sharing' my care. I have paused the MTX for 2 weeks after my Covid boosters and recently paused one dose before a tooth extraction. With MTX it's possible to monitor CRP and ESR, which we didn't do while on TCZ, so any disease activity should be picked up. My markers have always shown when I've flared.

I was reluctant to take MTX and sad to stop TCZ, as I felt so well on it. I don't have the energy I had on pred and TCZ, but it's hard to say why, as we've stopped 2 things and started another, all at the same time! Also, 6 years of pred have taken their toll on my muscles.

From my experience, I would say, give it a try. All the best!

[sequeluk in reply to Rugger]

Thanks for your response and yes your situation does sound similar and good to hear you've not noticed any side effects. My worry about starting it was triggered by the radiologist when I went for a chest x-ray who told me she'd been on it for 10 years or so and now had liver damage!!!! Your point about monitoring CRP and ESR has left me wondering about why I have had monthly blood tests since August 2021 to check on these if the tests are not an accurate reflection of level of inlfammation! That said, my CRP reading did go up a little in the Summer when I had an elbow infection. Hope you continue to keep the GCA at bay. Good luck.

[Rugger in reply to sequeluk]

Hope we might not need it for 10 years! Others understand better than I do about the immune system, whereas TCZ blocks IL-6, which is one of the causes of inflammation in GCA, maybe the elbow infection affected your CRP via a different mechanism.

[PastelsinArt]

Hi. I'm in the UK and was on TCZ for a while. During the last 2 or 3 months I used it only every 2 weeks, and started on Leflunomide 10mg. Once I'd used all my remaining TCZ the Leflunomide increased to 20mg daily. I'm still on a low dose of Pred, around 2.5mg at the moment. I had monthly blood tests when I started on Lef reducing to every 3 months once it was clear I was tolerating it OK. I haven't noticed any adverse side effects, although my tapering regime is extremely slow (once or twice a week I take 2mg). My rheumy agrees it's more important to avoid a flare than try to reduce at this low level. I realise I'm not adressing the Methotrexate issue, but hope this is useful.

[sequeluk in reply to PastelsinArt]

Hi PastelsinArt, That's good to know. Leflunomide is another DMARD so should work the same as Methotrexate but with maybe different side effects. I still have a few TCZ pens left so not starting it for a few weeks and encouraging that not hearing anything really bad about it on here. I did suggest moving to a bi-weekly injection but rheumatology didn't want me to do that otherwise could have stretched the TCZ out a lot more. Best wishes.