Really struggling - Tocilzumab/Pred

[Inanotherlife]

Hello again,

I’m in real pain around the clock and struggling to see past it at the moment.

I’m due my second Toci injection tomorrow but the pain has gone worse since I had the first one last week. I posted that it hadn’t helped at all and was reassured when many of you said it took several weeks to kick in but I’m literally bumping along the bottom. My hands, wrists and feet are giving me such pain.

I think I just need to mull over a few questions with you if I may, I don’t know where else to turn really, I have an appointment at Rheumatology at the end of the month.

I reduced Pred from 4mg to 3mg a few days ago after going between 2 and 5 for the last few months - could it be that making me so bad? I just can’t get off it.

I need ankle surgery again and I’ve been hobbling on it for 12 months, it’s swollen and very painful. Steroids into the bone and tendon failed to ease it. Could the fact a part of my body is in a constant state of inflammation aggravate my RA?

After many years on Etanecept before it stopped working, I can’t get on any respite unless I up the steroids again. Simponi and Baracitinib didn’t help and I’m worrying Toci might not either as I’m feeling at the moment. Thanks for listening.

[KittyJ]

Have you spoken to you GP about pain relief whilst you’re waiting for tocilzumab to start working. Unfortunately, while you’re waiting for it to start working, your symptoms can increase as nothing is controlling them yet. Are you reducing your pred as planned by your rheumy, you seem to be jumping about from different doses whereas when I tapered off mine I reduced a small amount a month (0.5mg) as I found a 1mg cut too much but it does depend how long you were on them. What has your rheumy said about reducing the dose, you could contact them to let them know how it’s going and they can make suggestions. It’s possible you might need to take a low dose until you get some relief from your new med but that’s for your rheumy to decide. Worrying about it not working will also not help your RA, give it time to work and ask for extra help until it does 🤞🏻 you see some improvement soon.

[Amnesiac3637]

Pretty certain it’s not a good plan to be dropping your steroid dose -it’s probably the only thing at the moment that’s keeping your quite severe inflammation at bay if you can call it that. You may have to resign yourself to having to increase the dose when you see or talk to your rheumatologist. It’s a tiny dose anyway but even half a milligram can make a difference if you’re flaring. Dropping 1 mg can make a big difference for a short time while your body tries to adjust so that may be what’s mKing you worse.

I speak from 34 years of experience of being on steroids and I have never managed to come off them. I flare badly and immediately I go below 7.5 and have never been advised or tried to reduce when I’ve recently started on a new drug. Try not to be too impatient as it all takes forever and an industrial quantity of patience to get RA quelled enough to live reasonably comfortably with it.

I feel for you and hope your upcoming appointment will produce some answers!

[Inanotherlife]

thanks KittyJ and Amnesiac3637.

I was put on 20mg in hospital Jan 2023 and gradually reduced through the year down to 2mg but when I get an infection and stop treatment, Rheumatology tell me to go back to 5mg (sometimes 10mg) for a week then drop back to 2mg. I went to 4mg over Christmas because of the pain and then dropped to 3mg last week.

[Mmrr]

I've been on steroids for around 5 years, I've never managed without them.Like KittyJ above, I reduce by 0.5 mgs a month. A 1 mg drop sounds a huge drop for the small dose that you take and when the new medication hasn't clicked in yet.

Many (most) rheumatologist/ specialist nurses that I have come across have been very unrealistic with their advice on steroid taper.

[Slinkyminx]

I’m currently in tocilizimab and pred. It took two/three months for toc to start working and I’ve managed to reduce pred to 4.5mg. I kept trying to get down a further 0.5mg but pain returns so I go back up. It’s not helped by surgery when I have to stop toc but you do get your own rhythm eventually. Last time I was on toc I got down to 2.5mg but couldn’t get below that. There’s no rush reducing pred. It helps so much

[Inanotherlife]

thanks Mmrr and Slinkyminx, from what you’ve all said then, that 1mg drop has been too much. I don’t know whether to go back to 4 or perhaps 5. I just to need to be functional to some extent for my daughter.

Rheumatology would like me off Pred and whilst I’ve tried, it’s 2 steps forward and 3 steps back.

[Slinkyminx in reply to Inanotherlife]

I think it’s good to bear in mind percentage drop. 1mg drop is 30 percent. That’s quite a lot to drop in one go. I normally wait until I’m feeling good then just drop 0.5mg then go back up then down 0.5 again until steady.

[Deeb1764 in reply to Inanotherlife]

I am always on a minimum of 5mg but usually 10mg as my rheumatologist said anything under 5mg means either coming off it as it has no real effect under 5mg. Who knows we all get different view points.

Re coming off it IF you can great as I am now seeing the other side of constantly being on steroids diabetes 2/heart and other issues which my GP feels is linked to being on so much pred for my lungs and pain control. Many of us call it the devils drug as it can make you feel so good but the unseen damage kicks back at some point.

Big discussions needed with your team re reality and needs and meds - good luck 🤞

[aliplayspiano]

I think I replied to you a couple of days ago re my toc experience. When I started on it I had been on no medication for four months other than a couple of General steroid injections which gave some temporary relief. The first few toc injections seemed to have no effect, in fact about the fourth week in I felt at my lowest point. I stuck it out because I felt I had no choice and gradually over the next few weeks I began to see improvement and after three months I felt so much better. I was back driving and a few weeks later was able to go back to work part time.

I am still on it nearly six years later. I now only take it fortnightly as it does send my neutrophils quite low.

[Inanotherlife]

thank you, I’m desperate for it to work, I can’t go on like this. It’s affecting us as a family in so many ways as I’m sure many of you will understand. I had to give up work but I just want to be able to be a mum and look after my home.

[Inanotherlife]

meant to ask, can you take ibuprofen for the pain whilst being on Prednisolone?

[Amnesiac3637 in reply to Inanotherlife]

You really need to talk to your medics about your medication and pain relief. All of us on here can give you advice but only based on our own experiences which doesn’t help you as all our circumstances and the way we react to drugs are different.

You’re now transitioning from one major drug to another which hasn’t yet started to work so your body doesn’t like having to try to cope with the very small dose of steroids you’re on and keep trying to reduce. In effect, as we’ve all said, you’ve got very little giving you any effective relief from your RA at present and the steroids are there to reduce inflammation. Even if you increase the dose for a while you’ll always be able to go back down again once your TOC starts to work so, as I said before, don’t be too impatient, try to stop getting too stressed about it all not working as that just makes everything worse and please do talk to your doctors as soon as possible.

P.s. you are not advised to take Ibuprofen with prednisolone as both are gastric irritants but if you have adequate stomach protection (Esomeprazole or similar) a short course under supervision by your doctor is sometimes prescribed but again, check with your team or GP. Very bestto you and hooe you get the relief you need very soon.

[oldtimer2]

I would be considering increasing, not decreasing the steroids if I were you! Ask, and ask again, for help from your medical team. You should not have to suffer in this way - my heart goes out to you.

[Inanotherlife]

thanks old timer, I don’t know what they could do, I have a new treatment, steroids and a selection of painkillers & anti inflammatories. That’s where it feels hopeless at the moment

[wilbertjellyfish]

Id speak to your GP to see about better pain relief and take more steroids if they help. It'll definitely take the Toziludimab longer to kick in but you don't have to suffer while you wait.

[Inanotherlife]

Hope you are all enjoying your weekends.

Just a little update, I increased the steroids to 5mg a day and had my third injection a few days ago. The pain has definitely lessened, I don’t know whether it’s Toci is starting to work, it’s going up to 5mg or a combination of both.

Past few days, I’ve had a lot of bloating and stomach pain. I’ve had a hysterectomy so it’s nothing to do with that side of things.

Is this something anyone else has experienced as a side effect of Toci?

I’ve read the information with it and been online but it basically with most of side effects it says contact your your doctor so I’m not weather I should be worried or just accept it as a side effect.