Hello everyone, I have GCA and within the last 6 months I have had two relapses. I couldn’t get on with Methotrexate and after my latest relapse I had to increase Pred from 15 mg to 25 mg to get control of the symptoms.
Any experience of its use, side effects, do’s and dont’s etc wound be gratefully received. Thank you xx
I am a Tocilizumab user. I have been on it for around 16 weeks. I reduced from 40 mgs Pred to 10 mgs in record time. I seem prone to minor infections - eye and nasal that persist. The relief isn’t dramatic like Pred. I do feel that I’m getting a steroid holiday which has to be good. In all honesty though, I feel fatigued and seedy. Onward though.
Many thanks SJ, interesting about infections, the Rheumy did say to be gloved up and careful when doing outside/garden jobs etc. I’ll watch out for the fatigue too as that does get to me. Onwards as you say and I hope you are doing ok:
Hope this works well for you it was amazing for me. This doesn’t mean you feel wonderful all the time but is a means to an end.My journey is in my profile which is attached to my avatar.
I am happy to answer any questions.
Merry Christmas☃️
Thanks Chrisellie for your reply, I’ve just read your journey, lots of useful info there for me to be aware of. Your Pred reduction is amazing, I’m pleased it worked well for you and fingers crossed it remains that way. I will be back in touch - and all the best Christmas wishes to you too. 🎅🎄🌟
I have GCA. I’m currently on 10mg pred.. I had reduced sucessfully to 5.5mg but had a persistent, mild headache over three days, and was worried, so my Rhemy arranged blood tests (at the Arena) and advised I stayed on 10mg until we talk on the telephone on 4th January. She suggests we discuss Tocilizumab. I’ve googled re. side effects, and am not sure if it’s a frying pan to fire situation. My BP, diabetes, bone density etc., induced by the steroids, are all well contolled by medication, but the fluid retention is a problem. Have you noticed any beneficial effects from the Toc. which make it the drug of choice, or shall I just plod on with the pred. and accept the increasing bulk ? I am undecided, which is out of character for me, and I don’t like it !
My main motivation for going on to Tocilizumab was to avoid another long period on Prednisalone. I had developed steroid induced diabetes ( now normal) and high blood pressure. I had PMR for almost 5 years and was down to 3 mgs of Pred when GCA and LVV were diagnosed a few months back. I was put up to 40 mgs of Pred. My Rheumatologist made a case for me to have Tocilizumab. Once on the self administered, subcutaneous, injections, I was able to reduce from 40 mgs to 10 mgs quite quickly. My diabetes normalised and blood pressure reduced. The protection against losing eyesight or developing heart problems are factors in my decision. I would not have taken a new drug if I hadn’t been newly diagnosed with LVV/GCA, by an ultrasound scan. I am not aware of particular side effects except the mentioned small infections and the fatigue I had anyway. I have flu-like symptoms that worsen if I try to get below 10 mgs of Pred, also headaches. My Rheumatologist thinks that these symptoms are from the GCA not the Tocilizumab. I hope this helps your decision.
Weight gain appears in the list of Tocilizumab side effects too alas.
Have you tried cutting processed carbs drastically? That not only leads to a reduction in simple carbs but also salt, both of which can be a major factor in fluid retention when on pred.
Yes I follow a low sugar and low carb regime. Have a bit of belly fat and slight moon face but normal weight for height.
If you have "bulk" from prednisone plan on more with tocilizumab. It doesn't matter how little I ate I developed large fat deposit in belly. It may not happen to you but I think others have also experienced this.
I just went off tocilizumab (Actemra) due to stomach pains possibly from it. Since on it I had very high & very low blood pressure with some dizziness. Not positive that was from Actemra either. The weekly injections were very simple & painless in the belly. Painful in the thigh, so only did once in thigh. I think the Actemra made it much easier to decrease prednisone. I had a couple flares even on Actemra but only needed to increase prednisone for short time. Insist on labs as recommended. Genentech pharmaceutical has very knowledgeable and helpful patient consultants if you have questions. Plan on your crp and sed rate to go immediately to normal but it does not mean there is no inflammation. Refer your Dr to the written materials or confirm with Genentech regarding this if he/she thinks otherwise. Must go by symptoms. I think Actemra is worth a try but side effect warnings are scary. Best of luck.
Thanks for the info Spanky - most helpful. I used to inject Methotrexate in the thigh which was quite painful so I think I’ll try my belly for TCZ. Here’s hoping I get on with it - as I can’t seem to taper from 25 mg Pred without flaring and it’s just too high a dose to be on it longer term. Hope all good with you.
Good Luck Horsewhisper 🍀 let us know how you get on!
Thank you Mrs N! Yes will do, I’m so grateful for this forum and everyone’s willingness to share info - such reassurance, especially at the moment in this rather bonkers world! Xx
Snap! If they deliver it, I will start then too. Currently on 20mgm Pred. And have a sty on my eye already! Rather nervous but game for anything that helps me off Pred as consistent reducing has not worked and the lowest I got to was 5.5mgm. Super fed up with it all and always that worn out feeling and and an underlying sense of anxiety interspersed with mad bouts of energy. Keep me posted!
Ditto! My sentiments exactly - yes I’ll keep you posted! 👍
Fingers Xed for us both.
I started TCZ 8 months ago for GCA-LVV, having also had PMR for 4 years. I felt wonderful and full of energy. It enabled me to reduce the prednisolone , but when I got down to 3, 2 and 1mg my legs complained. My Rheumatologist feels it was the PMR flaring, so I am back up to 5mg pred until I speak to her in January.
The only side-effect that I'm aware of is that my neutrophils are fairly low. My Rheumatologist isn't too worried, but they are checked regularly. A few months ago I was advised to have fortnightly injections because of this and the level rose with a couple of missed injections.
I inject into my abdomen and rotate the sites to avoid using the same spot, which can lead to a little redness and irritation, but has only happened to me twice in 30+ injections. Avoid the area near any waistband or belt.
My big worry is what will happen when my year's ration is up. I do hope that NICE change their minds!
Hi Rugger, thanks for getting back to me. I’ll avoid the waistband/belt area as you suggest.
Hi DadCue, that’s really good to hear that you managed to taper off Pred - and that you are recovering from a train wreck! Long may it continue 👍
Hi I’ve been on TCZ since November last year, so now into the extension they have given due to the pandemic. It was life changing for me as I really didn’t do well on high steroid dose and even worse so with methotrexate. Now on weekly TCZ injections and 2 mg pred. Feeling more like my previous self. I do hope you enjoy good results with it, feel free to ask if any concerns
Hi Devoid, thanks for the info, I’m looking forward to tapering off the high dose steroids as the insomnia is quite debilitating! I too couldn’t tolerate the side affects of MTX, so hopefully I’ll get some benefit from TCZ
Thanks DadCue - had the jab earlier, felt a bit dizzy for a few minutes but fine now. Fingers crossed I get some good benefits fro it 🤞
Stopping Tocilizumab
Starting again?
Tocilizumab(Actemra) withdrawn
Tocilizumab 
