Tocilizumab

[PQXZT]

I have GCA and PMR. I am on 40mg Pred. The inflammation markers have normalised, but I still have headaches. Doctors want to reduce Pred because of the side effects I am experiencing. I started Methotrexate injections, but they were paused for the last two weeks to see if they were causing the headaches. They were not, it's the GCA, so I have restarted the injections today. I am also starting Tocilizumab injections tomorrow. Does anyone have experience of Tocilizumab?

[PMRpro Ambassador]

If you look at the Related Posts (at the side on a computer, the bottom of the page on a phone maybe?) there are a load entitled Tocilizumab which will have immediate info for you.

I'm on it, for longterm PMR not GCA, but I don't live int he UK so it is a different matter getting it. No problems with it so far and over 6 months have reduced from well over15mg, where I'd been for the last 3 years, to 7mg. The only thing I notice is tiredness for a couple of days after the jab and my cholesterol has gone up from an already high level.

[PQXZT in reply to PMRpro]

Thanks, very helpful and posts encouraging.

[DorsetLady PMRGCAuk volunteer]

What side effects specifically?…and not sure I would want to reducing Pred if I still had headaches. TCZ takes time to take effect, certainly longer than Pred.

[PQXZT in reply to DorsetLady]

Vibration through my body, swollen feet, red face, disturbed sleep, fatigue, weakness, severe weight loss

[DorsetLady PMRGCAuk volunteer in reply to PQXZT]

Not nice I know - but unfortunately most are are par for the course at higher doses, although do lessen as you reduce Pred. Severe weight loss is not so common, neither vibration - has any other cause been considered for that?

But, having been there, the headaches do need to be addressed - in my view.

[PQXZT in reply to DorsetLady]

Weight loss could I suppose be caused by GCA. It's a problem as I was underweight to start with. Doctors say vibration is caused by steroids.

[DorsetLady PMRGCAuk volunteer in reply to PQXZT]

Weight loss is certainly listed as a symptom of GCA -usually pre diagnosis - can’t say it happened to me in the 18months I was undiagnosed.

Can’t say I’ve come across vibration as a common complaint -but not to say it isn’t.

Hope TCZ works out for you.

[Sharitone in reply to PQXZT]

I had weight loss with GCA, which s topped as soon as the pred was put up to 60mg. Like, DL, I would be chary about reducing pred if I still had the GCA headache.

I also have the TCZ injections. The first 2 times I had a wave of weirdness sweep after me about an hour later, but since then, just a bit extra tired for a day. And, wonderfully, it has enable me to reduce the pred below 15mg for the first time - now on just 2mg after10months of TCZ. I'm really pleased for you that you're getting the opportunity. It's not like pred, in that if it doesn't suit you, you can stop just at once.

[PQXZT in reply to Sharitone]

I was on 60mg and that's whenI had most weight loss. My body seems to defy medical science! Good to hear your experience of TCZ.

[PMRpro Ambassador in reply to PQXZT]

Shouldn't be if your pred dose is high enough. The question is whether the headache is still GCA - and if you are losing weight, my suspicion would normally be the inflammation isn't properly under control - or whether it is a pred headache which does happen. Always so difficult to know. Hope the TCZ works - but it isn't an instant result even though some doctors act as if it is. And half of GCA patients don't get entirely off pred as there are other underlying mechanisms for the inflammation in GCA which don't respond to TCZ as it is extremely specific.

[PQXZT in reply to PMRpro]

Headaches are GCA. Other possible causes have been investigated and ruled out. Expect to be on Pred long term but with dose gradually reducing.

[PMRpro Ambassador in reply to PQXZT]

Don't know how they can rule out them being due to pred - but really, in that case you need more pred. No getting away from that.

[DorsetLady PMRGCAuk volunteer in reply to PQXZT]

GCA -shouldn’t still be having headaches -did they go at 60mg -and if so, what dose did they return?

[PQXZT in reply to DorsetLady]

They have never gone. I have had them for 3 months now, since it all started. Also, my body weight is so low the effect of pred must be increased.

[DorsetLady PMRGCAuk volunteer in reply to PQXZT]

Well then, I would question whether it is GCA……

[PQXZT in reply to DorsetLady]

PET/CT scan confirmed diagnosis and consultant, at a leading London teaching hospital, I spoke to yesterday has confirmed this. Investigations have been done, including MRI brain scan and no other cause found. Headaches have been in same places in my head from the beginning, although they are less intense now.

[DorsetLady PMRGCAuk volunteer in reply to PQXZT]

Hmmm- bit of a conundrum -as J sayd earlier in thread, hope the TCZ sorts things out for you….

Take care -and let us know how you get on please.

[PQXZT in reply to DorsetLady]

I will. I'm going to the hospital tomorrow for blood tests and a clinic appointment with the consultant. She said I may have the first TCZ injection then.

[winfong in reply to PQXZT]

Weight loss is one of the constitutional symptoms (along with fatigue, cough, shortness of breath ...). I lost 40 lbs, 20% of my body weight,

[PQXZT in reply to winfong]

Do you mean symptom of GCA or Pred?

[winfong in reply to PQXZT]

GCA

[Greytree in reply to PQXZT]

I have exactly those symptoms. I am on 10 mg prednisone and an TCZ/Actemra infusion every month (4 months so far). Plan to go to 9mg this week.

[HeronNS]

Persistent headaches can be related to other things, which you could have as well as GCA, your diagnosis being confirmed. What sprang to my mind was the possibility of a micronutrient imbalance. For some time (bearing in mind I only have PMR, not GCA) I was waking up with a headache every morning. This was sorted quite by accident by a passing acquaintance suggesting I was salt deficient. I think I must have been as I tried her suggestion to take a bit of salt (if it tasted good it meant I needed it - it was delicious!) and see what happened., That was the end of these persistent and rather debilitating morning headaches. We do know that pred can mess with our mineral absorption. Something to do with electrolyte balance and stuff beyond my understanding, but it might be worth looking into this, checking against your own diet, etc. I found out, by using an internet tool to learn how much sodium I was actually ingesting, overestimating to be on the safe side, and at that time, before I started to salt my food, it was in the region of 900 mg a day. Far too low even compared with modern medicine's rather low recommendation of 2000. Along with the headaches going away a number of other relatively minor but persistent issues, which I'd never thought of as being related, also disappeared, so you never know....

[PQXZT in reply to HeronNS]

I do in fact also suffer from SIADH which causes low sodium in the blood and is made worse by illness. In order for the sodium levels, which are being checked regularly with blood tests, not to drop to dangerously low levels I have to restrict fluid intake. So, that could be adding to the problem but as I have said the headaches have felt the same all the way through.

[HeronNS in reply to PQXZT]

Oh dear, you are caught between a rock and a hard place. I can do no more than wish you a good resolution to this problem. Hopefully TCZ will help.

[PQXZT in reply to HeronNS]

Thanks!

[perceptual63 in reply to PQXZT]

Dehydration can also cause headaches.

Been there, done that.

[Helipad]

I’m on Tocilizumab and have been for nearly 2 years now. I have it for GCA. I now take 2.5mg of Pred every other day and Tocilizumab every week but now about to reduce down to 2.5 every 3 days and Toc every other week. As far as I’m aware I have had no adverse reactions to Tocilizumab.

[PQXZT in reply to Helipad]

That's encouraging. Thanks.

[Elephants2019 in reply to PQXZT]

I too am taking Actemra for GCA, and wish I had been able to start it sooner. I have been on prednisone, and methotrexate, for 2 years and 7 months on Actemra. At first I did not think anything was working, as simply never felt “right, (it has been a mental struggle) then after 3 months on Actemra, I turned a corner, to feeling what I would call more normal. I too have SIADH, which always makes me wonder when have headaches or feeling off if it is low sodium. So many variables! I also had weight loss, which I attribute to losing a lot of muscle( had been very active prior to diagnosis)-have now reduced to 5 mg of prednisone and stopped methotrexate on my on, as felt it was not helping me, once I had been on Actemra for 3 months. I wish you well! I also hope the Actemra helps you, tapering off prednisone, which seems to cause so many side effects.

[PQXZT in reply to Elephants2019]

Thanks for that. Again very encouraging. Hopefully I start injections on Friday.

[brenda1207]

Yes I have been on tocilizumab (Actemra actpen) for about 2 years and have experienced no side effects. My inflammation markers have been down the entire time. I was previously being treated with prednisone and methotrexate also. So my experience with it has been good.

[Preacherball]

I am on weekly injections of TCZ for more than a year without complications. I have GCA and have reduced pred. to 5 mg. Are you on both methotrexate and TCZ? I thought TCZ was a replacement for methotrexate and you took one or the other to more quickly reduce pred.

[PMRpro Ambassador in reply to Preacherball]

No they do different things. However, most rheumatologists experience with tocilizumab is in RA where it has been in use for about 10 years. They are used together there because while TCZ reduces the inflammation, it doesn't stop the underlying disease process which attacks the joints and erodes the surface. DMARDs like methotrexate do something in the disease process which reduces the erosive effect and so the longterm damage which is what causes the malformed joints that used to be so common in RA. TCZ doesn't do that. PMR doesn't show that effect but some rheumies seem to like using it with the TCZ - and in the UK they are using MTX for when GCA patients have to come off TCZ after a year in the hope it will keep the immune system quiet.

[PMRpro Ambassador]

I suppose it depends what you call "new" - they've been around and used since the 1980s.

[PMRpro Ambassador]

I was quoting Pfizer - who actually point out some biologics have been around since the 19th century which I didn't know!

pfizer.com/news/articles/bi....

[Preacherball in reply to PMRpro]

So, it sounds like TCZ and methotrexate are sometimes both prescribed, depending on the particular illness and condition of the patient. Good to know. Thanks for the info.

[DawnMezza]

I had the injections for about 6 months but I developed another disease where my body hardened and the Injections weren’t fully going in, so I am now on monthly IV treatment.

However when it was getting into me properly I started feeling much better. Headaches went and I started having energy.

[Elephants2019]

interesting regarding immune memory…first time I have read that. Please keep us all posted if and when you begin taper off Actemra…will be interesting to know your journey.

.I am right now just hoping to get off prednisone. Was told my my endocrinologist that Actemra was certainly kinder to the body and the sooner I could get off prednisone the better! You give me hope!😊🤞

[jarn]

Not sure if I read your post correctly, but hoping that you are STOPPING Methotrexate BEFORE TCZ?? Shouldn't be doing both. TCZ preferable to Meth. however. My rheumy switched me to TCZ after about 3ms. No pbms with it

[PMRpro Ambassador in reply to jarn]

They are used together in RA and I have come across rheumies who use them together in GCA as well. I don't know why - you'd have to ask them.

[PQXZT]

I will be having both. Today's blood tests showed ESR and CRP normal, also sodium. Will hopefully start TCZ on Friday once application approved.

[Carver63]

my reduction off pred was largely added by Tocilizumab (Actemra) in Canada. Very effective at neutralizing the side effects . But as mentioned tiredness and some swelling was part of the process. if you can have the injection i would recommend you consider it vs Pred. Especially if your medical people agree.

[Elephants2019]

how interesting! Thank you for taking the time for explanation-had to read a few times, but understand the jist now of immune memory-makes sense. Whew-35 yrs of autoimmune problems…so glad you have a good rheumatologist now! Interesting to read how Humira was not as effective. Was wondering if you ever had a cytokine panel done? I have not-but do wonder why it is not done, as would think would give us a more accurate look at what is causing inflammation and target it with correct meds.