Tocilizumab side effects

[PQXZT]

I started TCZ injections three weeks ago and am experiencing side effects of mouth ulcers, cold sores and runny, sore nose. Does anyone else have these and if so, how long did they last, I've been told should go after a few weeks.

[DorsetLady PMRGCAuk volunteer]

Good to see you’ve raised new post -hope you’ll get the answers you seek,..as I said no experience so can’t advise.

[SheffieldJane]

I assumed that these annoying symptoms were an example of a fully suppressed immune system. However, I had my last dose of Tocilizumab 5 months ago and still have a runny or blocked nose. I am being sent for a Pet CT scan, looking for evidence of Large Vessel Vasculitis in my sinuses. During my time on Tocilizumab, I seemed to have one niggly thing after another such as Blepharitis and UTIs and bowel issues. I did however successfully reduce from 40 mgs of Pred to 10 mgs, pretty quickly without issues. For me the side effects remained for the duration and beyond. I gave up eventually with constant lower abdominal pain, after a year of taking Toc. On and off, because of infections. Others have been more successful.

[HappyDiamonds]

I haven't experienced any of those symptoms but I was asked before starting my injections if I suffered mouth ulcers or a crusty nose. I was asked the same before MTX. Now on Leflunomide and that does list mouth ulcers as a side effect. Was advised to use Biotin Mouthwash or Orbs Protection Paste if it did happen. Doesn't sound very pleasant for you.

[Sophiestree in reply to HappyDiamonds]

Interesting they asked you those questions before starting the drug

[PMRpro Ambassador]

Honestly can't identify side effects or at least none that lasted more than a couple of weeks.

[Bachblues]

I’ve had mouth ulcers off and on. It’s helping reduce - last time to 3.5 before I had a flare. Now I’m on 7.5 and hopefully reduce before the prescription runs out!

[PMR2011]

I had mouth ulcers off an on and found it related to a higher carb/sugar intake. Now, I avoid all sweets excepting a bowl of ice cream a couple times of week and no bread, potatoes, pasta etc. I also religiously brush my teeth twice a day using hot water and brush my tongue then too. If I binge a little with a dessert I always get the start of a mouth sore. Instant feedback!

[scottygirl73]

Hi when i started infusion of tocilizumab i had mouth ulcers itchy throat ect,so theygave me infusion of antihistamine first and i was fine.Did this for next 5 Infusions and then stopped antihistamine,i have been fine though i do get a runny nose for couple days.I was injecting during pandemic and was fine to.Take care.xx

[Blackcatlover]

I too had mouth ulcers for the first few months on tocilizumab. It does help to use an oral rinse and tongue brushing. I’ve been off Actemra for four months now and still have a runny, stuffy nose. Keep thinking it might be allergies but not sure. The Actemra finally got me below 20mg of prednisone after trying for many years. Now down to 4mg and hoping I am in remission. Just found out I may have heart problems related to taking Actemra. One thing after another.

[Wallysma in reply to Blackcatlover]

Hi there. I am late to this conversation but I am about to start Actemra soon infusions- for RA and PMR. I have heard a lot of positive results here but these posts are pointing out some things that are new and because of some annoying symptoms I have had for a long time that never got resolved. One is a full sinus; need to see a dentist thanks to covid and the move from DC to DE a year ago) God knows what's going on there; high blood pressure and the fun affects of prednisone on that already. So you mention potential heart issues if you are comfortable sharing a bit more info I would be grateful but I understand if you are not. I like what PMRpro shared about the mouth sores and what she does to avoid them. Do you have anything else to recommend? Who treated the mouth sires? You rheumy or a dentist? I need to get one anyway but now the pressure is on. Thanks for telling us your experience.

[Blackcatlover in reply to Wallysma]

Glad to share more. I had foot surgery in April of this year and needed to have an EKG before the surgery. It was fine. Two weeks ago was going to have surgery on the other foot and needed anew EKG because it was longer than six months since my last EKG. This one wasn’t fine. I had an echocardiogram yesterday that showed I have cardiomyopathy. Report is hard to understand but will be getting an appointment with a cardiologist to see how bad things are. Started doing research on Actemra and heart problems and was shocked to see how high the incidence of heart attacks and strokes are while taking this drug. I had bloodwork done every three months to check kidneys and liver but never had a heart check. Read there is some evidence of cardiomyopathy from taking Actemra. I did take Actemra for three years which is a very long time. I started twice a month for 18 months and then went to once a month. Wish I had known about these reports. Might not be a big problem but will need to talk to a cardiologist. Good luck. It got me to 4mg of prednisone and I couldn’t have gotten there without it.

[Wallysma in reply to Blackcatlover]

I am sorry you are going through this. The layers of things to handle with these diseases are unreal. They treat cardiomyopathy with various and assorted meds right? How are you feeling? A lot of symptoms? I hope not and I hope your report is a good one. I know one thing I want to hear from the doc are what are the symptoms of the scarier side effects....what do I need to look for. Here we are with PMR and pred both of which make our bodies feel bad and different...add to that side effects easy to.see like mouth sores or other things more hidden. It's very complicated. That is one reason why I love this site where you learn facts, people's experiences, opinions. The experiences teach us a lot. That is why I wanted to ask you about your heart issues. I wish you the best. Take good care.

[PMRpro Ambassador in reply to Blackcatlover]

The figures for TCZ and heart attacks is gathered from RA patients - and having RA increases your risk of cardiac problems. You cannot transfer the numbers from RA to PMR/GCA,

[Blackcatlover in reply to PMRpro]

I don’t think you can dismiss the studies showing increased heart attack and stroke risk if you have rheumatoid arthritis. PMR also puts you at a higher risk of heart problems. Google the latest law suits. The makers of Actemra have clearly understated the risks of heart problems. Knowledge is the power to make better choices. Would I still have chosen to take Actemra- yes but not as long. Wish I had known about heart problems but the makers of Actemra did not disclose all the heart problems.

[JuneWalker]

My rheumatologist prescribed Septra when I started Actemra injections in August, Prednisone was 60 mgs . Seized taking the Septra at 10 mgs. Oral thrush and cold sores were an issue from 60 mgs to 15 mgs. Now I am down to 10 mgs of Prednisone and no more oral thrush or cold sores. Still taking weekly injections of Actemra. My rheumatologist has said all along it was the Prednisone not the Actemra causing the oral thrush and cold sores. In my case her analysis was correct.,

[Grammy80]

I started TCZ three years ago, GCA and on 80mg prednisone per day at the time. Because I had been misdiagnosed for months, lost the sight in one eye, I had a raging bull on my hands. There were concerns about my other eye. My body was experiencing all sorts of things; shingles, bleeding under my skin, zero sleep, fatigue and brain fog.

In my case I had NO side effects from the TCZ and I still do an injection weekly and am on 5 mg of prednisone. Sometimes the road was rocky but I want you to know there is light at the end of the tunnel.💞

[PQXZT in reply to Grammy80]

Thanks to you all. Your replies are very helpful.