I may be going on tocilizumab for GCA. The GCA is symptonless but found on scan I am very scared of losing vision but am also scared of sideaffects of tocilizumab since also on epilepsy medication. How bad are the sideaffects?
Tocilizumab : I may be going on tocilizumab for GCA... - PMRGCAuk
Tocilizumab
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WaltzG
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Dear Poli2. I self inject Tocilizumab weekly (now every 10 days) since more than a year and my GCA (large vessel type) is in full remission. I have no side effects (also liver enzymes and neutrophils are not negatively affected). I had Covid in February and only mild symptoms - also no general problems with infections. With TCZ I live my normal life as before my disease started and it is planned to try to stop the injections in autumn (approx 1.5 years after the initial dose).
Thank you that is so reassuring
The main thing I have noticed is a proneness to infection, like UTIs, sinus, nasal and Blepharitis. This will be because my immunity is so firmly suppressed what with Prednisalone and Tocilizumab. I was able to quickly get down from 40 mgs of Pred to 10 mgs without the usual PMR type pains or any flaring. I was grateful for the opportunity to try this drug that has proved effective for our conditions in research studies. I am aware that it is eye wateringly expensive.It is important that you do not have diverticulitis because a study has shown that you are more prone to the lower intestinal tears that is one of the scary side effects you read about. There have been discussions about this in recent days. I hope you caught them. I have asked Mrs Nails if we can have some information about Tocilizumab in FAQs, she will look at this after Easter. It is good to have all the discussions in one place.
Personally, I have had lower abdominal pain for the last 3 months and following a colonoscopy, diverticulosis was found - older people often have this without symptoms. In view of the pain and the slim chance that it may make me prone to a lower intestinal tear, I think I am going to stop Tocilizumab a bit before my 12 month allowance of it is finished. It is actually diverticulitis that puts you at risk not the ordinary, infection free diverticulosis that my doctor called “ wear and tear”. I am being cautious.
Prednisalone is also very harsh on the digestive system and I had 4 years of that before my GCA/ LVV diagnosis.
I understand the fear about your precious eyesight, I share it. I visit my well equipped optician for a thorough eye check every few months. Thankfully nothing untoward has ever been found, including today.. I think that my Large Vessel Vasculitis is of the peripheral artery type, abnormal cells were only found in the arteries of my left armpit, so far.
Sorry for such a long reply, I hope it is not too muddled, this is all very much on my mind today, having decided to give up Tocilizumab. I would hate to put anyone off what could be a great drug for them. Certainly ensure that your epilepsy drugs are compatible and be careful of your gut. X
Many thanks for your help.
I hope what you decide brings improvements for you....
Thanks Longtimer, I appreciate that. I hope you have a very pleasant Easter! 💛🌼
SheffieldJane this reply well worth adding to the TCZ Post So l have saved the link
Angela x
Do I have to do anything Angela? X
I’ve already attached the whole Post - as below. However, your reply is excellent so ideally l’d like you to Copy n Paste it into a Post in outs Own Right & you may wish to expand it.
Many Thanks SheffieldJane 😘
What? 🫣
Hi Jane, as l said - this Reply is excellent - see below - if you could Copy & Paste it in to a New Post & Expand or add any more information on your TCZ Story that would be perfect to add in its own right to this Topic.
Thanks Angela
healthunlocked.com/pmrgcauk...
Sorry Angela, I use an iPad and am not sure how to do that. Pre-sleep I didn’t understand “ post in outs Own right”. After sleep, I realised that it must have been a typo. I am trying.
Just select your reply above and copy it - then write a new post -and paste into it. Same procedure whether using phone, iPad, laptop or PC.
You are just the sort of colleague I would have loved, thank you. I think hand cream was stopping me from capturing the whole post. Duh!I have copied it into a new post and separately my account of GCA/LVV. I hope this is ok. X so two new posts from me as requested.
Two new posts done. One GCA story and the other a Copy and paste of my one about abdominal pain with Tocilizumab.
Both now in the New Post for FAQ’s Thank You
I am on tocilizumab (Actemra) and tapering off prednisone. I do the weekly injections. I have had no side effects with Actemra. I was completely off prednisone in January and just taking Actemra. Then, there were supply chain issues and I could not get Actemra when I needed it. I really thought I would be fine going off it, and my doctor agreed we could try that and see how it goes. Unfortunately, I had a bad flare up, so I'm back on prednisone again, and back on Actemra. I guess I learned my lesson, that GCA is with me and I'll have to keep on the medications, even though I'd rather not.
Really bad that were supply issues and sorry to hear that can't come off. I hope things go better for you in the future.
I’ve been on Actemra since December 2021. I feel so much better since I am now on only 4 mg pred. I haven’t had any averse side effects. I do sometimes have headaches and some leg pains, but I have no idea if it’s from withdrawal from pred, adrenal insufficiency or what. All I know is I sometimes feel like a real human being
Thank you for replying . I have not been on steriods other than 2 injections which weren't great. I hurt all the time all over. It would be great to feel better again glad you do . ...
Down to 4mg in only 4 months! May I ask how much pred you were on when you started Actemra in December?
I had no side effects whilst on TCZ. In fact, I felt like my old self for the first time in years. Best wishes for your TCZ therapy.
I had a 12 month course of Tocilizumab /Actemra weekly injections after starting on 40 mg of Prednisolone. I had Pmr,GCAand LVV.Within 16 months I was off everything and haven’t relapsed. I have now been off everything for 2 years so officially in remission.
It did take about 12 months to feel fully back to normal brain and body wise after stopping.
Most of my full journey and reduction is in my profile.
I have no idea of the effect of epilepsy meds on everything else but I hope it all works well for you.
I was very very lucky.
Best of luck
Thank you and so pleased you are in remission
I’ve been on Actemra 3 years now (in the US). Off Pred for 2 yrs. As others have said it has been a game change with almost feeling “normal” again. The only side effect have had is a occasional mild headache after injection day. Staying well hydrated and injecting at night before bed seems to have resolved it. Hope it works for you! Did I read correctly that you’re not on Pred? It is unusual to treat with just TCZ at the outset.
Hi tried 2 steriod injections had difficult reactions and didn't bring down esr. I hope will b given tocilizumab. Didn't have diagnosis of GCA until 2 weeks ago only PMR. Now I have to do something.....
Injections are hardly ideal to manage GCA though it can be done. But not getting a move on giving you either pred or Actemra immediately is playing russian roulette if it is cranial. If it is extra-cranial it is less of a problem.
How would I know if cranial or extra cranial? Thank you
Cranial affects the head, headache, jaw ache when eating, visual symptoms. Non-cranial affects the trunk:
academic.oup.com/rheumatolo...
Fig 1 has a simple diagram - the rest is more complex.
If your symptoms have resolved and you are off pred, why do you have to keep on taking TCZ?
I have just finished 2 years of TCZ for GCA-LVV and it has helped me to reduce the pred to zero a week ago! The only side-effect that I'm aware of has been a lowering of my white cell count, but this is closely monitored by my Rheumatologist with regular blood tests. When I started TCZ it gave me a new lease of life! It is specific in its action and I seem fortunate to have the type of inflammation that TCZ targets.
Best wishes for whatever you decide to do.
Thank you glad it worked
I had absolutely no side effects…but that was me …also on an array of heart meds
I have been on TCZ infusion every 4 weeks since July 2021 for GCA. I will be off pred in one more week! So far no discernible side effects. My rheumatologist says I will be on it indefinitely because if I have a bad flare I would be starting over with high dose pred again. Thankfully in the US, Medicare & my supplement policy pay for it. I wouldn’t hesitate if I were you.
Many thanks...... after all the positive feedback here I am hoping to get the go ahead to have it
I thought the whole point of TCZ was that you could discontinue it when symptoms were gone, and its advantage can be that it works better than pred if the cause of your symptoms is the cytokine which TCZ targets. Doesn't seem to be much point taking it if you have to stay on it forever. TCZ can have a very serious effect on the immune system and make a person much more susceptible to serious infection.
My symptoms were “gone” the next day after starting 60mg prednisone. The TCZ is a biological DMARD:
Biologic disease-modifying antirheumatic drugs (DMARDs), also known as "targeted biologic agents," "biologic agents," or simply "biologics," are DMARDs that are produced using molecular biology (recombinant DNA) techniques. These agents were designed to prevent or reduce the inflammation that damages joints. Biologics target molecules on cells of the immune system, joints, and the products that are secreted in the joints, all of which can promote inflammation and joint destruction. There are several types of biologics, each of which targets a specific type of molecule involved in this process:
●Tumor necrosis factor (TNF) inhibitors, such as etanercept, adalimumab, infliximab, certolizumab pegol, and golimumab
●Biologics that target other molecules, including abatacept, rituximab, tocilizumab, sarilumab, and anakinra
(Quoted from the site Uptodate.com)
They do not give immediate relief from symptoms. Prednisone is necessary to prevent blindness in GCA which can be sudden and permanent as some of our members can testify. Until the discovery of TCZ and its efficacy in treating GCA, prednisone in high doses was all we had. We know it’s long-term side effects. I am sure that TCZ has some, too, but definitely prefer it over the way pred makes me feel. I have been told by my rheumatologist that at some point they will try a taper with the TCZ, but it won’t be for a while. I am not even a year out from diagnosis, but my pred taper has been very smooth with the TCZ combination.
That's different than being told you have stay on it forever. Yes, I understand high dose pred makes people feel really awful and I'm glad I didn't need it. I can appreciate that in your case the TCZ might be preferable. It was the taking it forever which piqued my curiosity!
Lots of good reports, I see. Now, let me tell you my story ...
I was getting infused with TCZ for, maybe, half a year when I came down with diverticulitis & then a bowel perforation. Very painful, very serious. Had to drop TCZ like a hot potato.
All that said, it's probably just me. I seem to be the living embodiment of Murphy's Law.
Very curious about how you were diagnosed with asymptomatic GCA?
Hi I had a scan which showed large vessel vasculitis and polymyalgia weith uptake in the walls of medium and large arteries thx
Yup, that was how mine was identified as well. Just curious how it came about for you to get that scan. My presenting symptoms were classic constitutional ones.
After 4months of Actemra (with pred) I can't identify any side effects. (I'm assuming the continuing fatigue is due to the disease or pred). However, I was warned to be very careful about avoiding infections, and food poisoning, including eating chees made from unpasteurised milk. And in the UK, it makes you automatically 'severely immunosuppressed', so you get all the vaccines.
Thank you. It's not great having to avoid infections if living any kind of normal life. Ie I have young grandchildren !!
I have been on 3 weekly TCZ jabs for two years now, the only side-effect being low neutrophils, hence the 3 weekly spacing. I have been able to taper to 2mgs pred, got to .05mg but flared. That was quickly brought under control by increasing to 5mgs and then 3 and 2, over 2 weeks. I had been stuck on 10mgs pred with rising PCR of over 100. I was in "normal" range within days, so TCZ has been fabulous for me. Wishing you all the best.
Many thanks for your help
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