Tocilizumab

[Devoid]

Soon to start on tocilizumab , any experience good preferably or bad , would be appreciated

[PMRpro Ambassador]

If you use the search box and type in Actemra (careful with the spelling!) it will bring up a list of all the previous posts about it. Actemra is the brand name for tocilizumab and what it is called in the US. Most of the people who have used it are in the USA - not a lot in the UK. And restrict the search to PMRGCAuk because it is also used for rheumatoid arthritis.

[Devoid in reply to PMRpro]

Thanks I will have a look, not responded well to steroids so hopefully this will improve things

[misha453]

I have been on Actemra injections for 6 weeks so far and I have had no side effects. I started it because I was experiencing a GCA flare and my Rheumatologist felt it was my best option since I have a lot of side effects from Prednisone and I couldn't tolerate Methotrexate. Actemra stopped the flare and I was able to reduce my Pred dosage by 1 mg last week. It has also decreased my fatigue significantly! I don't find the injections a problem since I have never been pain free since I was diagnosed with PMR in 2016 so I don't even register pain from a tiny needle!

[Devoid in reply to misha453]

Thanks for your response, I have gca that’s also in all major vessels, other than head symptoms, steroids haven’t touched any of the other symptoms, pain and fatigue major and mobility issues getting worse so hopefully the actemera will be beneficial, not worrying about injections, it’s as you say all relative,and towards the pain I’ve been in over the last few months a small price to pay

[Chrisellie in reply to Devoid]

Hi Devoid.

I also have GCA PMR and LVV inflammation of aorta etc.

I have been on Tocilizumab / Actemra for 32 weeks. Came off Prednisolone altogether last week. Diagnosed Nov 2018.

It can take a while to kick in, but I have found it works so far.

I am on weekly self injections which I put in upper thigh and alternate the leg each week.

Was on 40 mg pred to start for almost 3 months then , with injections, down 5 mg every 2 weeks untill 15 mg then 12 1/2 ,10 and then 1 mg roughly every 2 weeks although did need to take a bit longer sometimes.

Pred reduction symptoms can get confused with illness and injections, so just keep that in mind.

I do feel very tired the injection day, more than usual, but better after that.

Good luck and keep in touch.

[Devoid in reply to Chrisellie]

Thanks for that, have really struggled with the steroids, also on methotrexate for last 10 weeks but not had any relief from pain, now using breathing techniques rather than adding even more medication that wasn’t helping. Have everything crossed that this will help me turn the corner. Fatigue has been overwhelming, it’s not tiredness just literally my limbs stop working!is this something you have experienced, never sure what is the illness or medication

[Chrisellie in reply to Devoid]

Think we “spoke” on the vasculitis site.

Did you ever have no pain with Prednisolone ?

Perhaps they should have upped the dosage at the beginning

[Devoid in reply to Chrisellie]

The GCA pain went on 40 pred but the chest arm and neck etc has altered but not gone, I have had an ecg and ct pet scan and further pet scan on arm , seeing vascular surgeon next month, referral by rheumatologist, mobility is the biggest issue, and fatigue, just hope the change in medication will improve things

[Chrisellie in reply to Devoid]

Hope so.

[PMRpro Ambassador in reply to Devoid]

Has anyone ever considered it might be myofascial pain syndrome in your shoulders and neck? Mine improves some at higher oral pred but rarely goes away except with very targetted management,

[Devoid in reply to PMRpro]

It’s not a muscular pain, it’s feels more constrictive, left side of neck following main vessels, very much increased with mobility or activity

[PMRpro Ambassador in reply to Devoid]

That's how I'd describe mine too

[Chrisellie in reply to Devoid]

Sorry can’t find where you mention when you were first diagnosed and how long you were on higher pred for?

[Relative in reply to misha453]

Anyone get actemra in UK ? Or specifically in London ? From which doctor/ hospital?

[PMRpro Ambassador in reply to Relative]

You can only have Actemra through the NHS after "failing" other options and for repeated relapses of GCA. Any rheumatologist or hospital will be able to use it subject to approval.

It might be a private option if you can pay the £12K per annum drug cost - prescription and administration will be on top of that I imagine.

[Jim-CJ]

Hi Devoid,

My wife (GCA) has been on weekly injections of Actemra for over 1 1/2 years with excellent results and no side affects.

[Devoid in reply to Jim-CJ]

That’s really good to hear, some very positive messages and I keep clinging to the fact that until this I was fit and well

[enan-illuc]

Devoid,

I have been on Tocilizumab for over two years and no problems yet. It helped me taper when I was getting flares every time I tried to taper. I hope this helps.

[PMR2011]

I have been on tocilizumab for a year and a half. It’s been a game changer for me. I came off Pred completely in January this year. Good energy level, no side effects. One does have to be very “germ” conscious while on it and a cold can knock you for a loop. Cholesterol, blood pressure and liver enzymes need to be checked regularly. Hope it works for you!

[Devoid in reply to PMR2011]

That’s good to hear, fatigue has been a big issue, now wondering if it’s the methotrexate as it’s definitely got worse as the time as gone on . I have been on methotrexate for 10 weeks now along with pred ,,now down to 25 , but was thinking more about nausea and tummy problems as side effects, but it’s dawned on me today that the lack of mobility has gradually got worse!!! Did you have methotrexate at all?

[PMRpro Ambassador in reply to Devoid]

I did, after a mere 4 weeks I was so fatigued I could barely put one foot in front of the other but the pain and stiffness was at a similar level to PMR without pred!

[Devoid in reply to PMRpro]

Will speak to the consultant as the plan is to continue with the pred and methotrexate, introducing the tocilizumab and then reducing, thinking if this empty tank feeling is more the methotrexate if it would be better to stop it?? Certainly food for thought!!!

[PMRpro Ambassador in reply to Devoid]

The usual argument is that the mtx adverse effects usually improve after a few months - I wasn't prepared to wait it out. They did improve within a few weeks of stopping the mtx.

I would like to know why they are using pred, mtx and tcz in parallel. I realise that might be the case in RA and so what they are used to. However, it was pred plus tcz in the clinical trials for GCA. They are different diseases.

[PMR2011]

I was never on MTX but still had fatigue. I think the higher dose Pred becomes cumulative too. I felt very weak and had to be cautious of a leg or arm “giving out” without notice. That improved on lower doses and is much better now I’m off Pred.

[Devoid in reply to PMR2011]

Can’t wait to be able to say that!!😊

[PMR2011]

Do be careful weaning the Pred. Tapering can go faster once the tocilizumab kicks in (usually after 4-6 weeks) but there is a balance. I had bad muscle spasms until I slowed it down.

[Devoid in reply to PMR2011]

That’s useful to know, have really struggled with the steroids and certainly with trying to reduce, flu like symptoms for 3 days each time,

[PMRpro Ambassador in reply to Devoid]

And below about 5mg you still need to slow down some to allow adrenal function to get going again. I know a few who struggled because their rheumy didn't take that into account.

[Chrisellie in reply to PMRpro]

A question I don’t know the answer to is to do with tapering off pred while on Tocilizumab injections and the Adrenal gland cortisol production.

On 5 mg 28 th June down to 0 on 27th of September, still on injections. But how do I know if Adrenal gland is working ok? Is it just by how I feel ?

[PMRpro Ambassador in reply to Chrisellie]

Partly yes, a lot depends on how long you had been on high dose pred beforehand and at what dose you started tcz. If you'd been at 5mg at any length of time before that it would help. Theoretically a 3 month reduction could be enough and what a lot of doctors think - but the previous history is important.

However, one lady on the forum was at 2mg and felt OK but a synacthen test showed she had no reactive adrenal function at all. If she were subjected to stress of any sort - illness, trauma, emotional stress - her adrenal glands couldn't react and produce the boost of cortisol she would need.

Even after we stop pred altogether, it is felt it may take up to a year for adrenal function to recover fully and be reliable. That is why we should carry a steroid notification card saying we have been on long term corticosteroids for that year, at least and always tell healthcare professional - just in case.

[Chrisellie in reply to PMRpro]

Thanks.

I was on 40 mg for 3 months from mid November 2018

1st taper 35 mg 22 Feb 2019

Then tapered to 0 on the 27 September this year

Started weeklyTocilizumab injections 19 th of February this year

[PMRpro Ambassador in reply to Chrisellie]

I'd say be aware, especially in the next month or two. If you feel unwell, fatigued, confused, nauseated don't hesitate to speak to your doctor urgently. Don't wait for an appointment, if you can't get a same day one, go to the ED/A&E.

medicalnewstoday.com/articl...

If all else fails - like you can't get to A&E, dial 999 and tell the call handler you were a long term steroids patient and feel ill. It is very treatable - a shot of steroid works wonders! But if you ignore it and collapse without anyone around, you could become VERY ill.

[Chrisellie in reply to PMRpro]

Thanks for that. I will keep a watchful eye.