An update on my tocilizumab experience.

[LemonZest11]

Hello Everyone, from Downunder,

I have now had my 12th jab of tocilizumab and my inflammatory markers have reduced to “normal” levels. I feel strong, full of energy and mentally positive for the first time in some months. My pred is down to 6.5mgs, Rheumatologist thinks I could reduce more rapidly, but I am trying to be cautious given my previous flares, and she is being patient and supportive. I have an unrelated shoulder injury and have had two cortisone injections in six weeks, I know I will not be able to have any more so trying really hard to protect my shoulder and follow my physiotherapist son’s exercises. Thing is, when you feel well, you don’t think you need to do the rehab. I said to my hubby this morning, “what happens when all of this ends?”, and he replied, “just enjoy this time”. He’s correct, I have to really make the most of now because I know it will not always be like this. Thanks for support and advice, I am continuing to learn so much and the biggest part of that is to take nothing for granted and from experience, expect things to change at any moment. For now I will continue a slow taper and cross my fingers that adrenals kick in at some point and just wait.

[DorsetLady PMRGCAuk volunteer]

good so far - and take every day]y as it comes - that's all we can ever do!

[LemonZest11 in reply to DorsetLady]

Thank you DorsetLady, you have helped me so much. Some how I think I might be asking for that again. X

[DorsetLady PMRGCAuk volunteer in reply to LemonZest11]

that's what we are here for 😊

[Tamtan2 in reply to DorsetLady]

Hi Dorset lady hope your well. At last a phone call from Rhuemy nurse at hospital he said the bone nurse at my practice been on and wants to start a intravenous injection for a year ? Could this be tcz as he didn’t say anything I to,d him I need to know more as I could not tolerate AA or mtx and am scarred out of my wits as I know I couldn’t go through that again. Still awaiting dexa scan. For bones but been asked to ask nurse next Friday when I get blood done To add calcium and vit d Onto test. Thank you once again. Your a ⭐️ 🙏🏽

[DorsetLady PMRGCAuk volunteer in reply to Tamtan2]

Me good thanks.most people on TCZ seem to cope with it, it might be worth asking the question with a new post or searching for either Actemra, Tocilizumab or TCZ.

Bit of info -

webmd.com/drugs/2/drug-1535...

[Tamtan2 in reply to DorsetLady]

Hi here a question for you how did you know you were in remission and that your Pmr and Gca had settled itself no one mentions how you know I Know the obvious signs I think pain free, inflammatory marker normal. What did you notice first. 🙏🏽

[DorsetLady PMRGCAuk volunteer in reply to Tamtan2]

I had GCA only, no PMR.

My journey through Pred was really good (despite usual side effects), but virtually pain free and certainly no flare.This I attributed to slow tapering, and never being hassled by doctor.

The only issue I had was when I reached 6mg and continued down to 3mg - when adrenals were really taking their time to spark again. This period lasted for about 9 months and comprised of random attacks of fatigue - nothing else.

A few months later when I’d got down to 1mg I woke up one morning and felt different, as if a ton weight had been lifted from my shoulders. I’m afraid I can’t explain it any better than that (wish I could) - but I knew I felt different.

Hoping it was remission, but not really knowing I continued reducing slowly to zero, and - nothing, no symptoms, no raised markers.

Timeframe - 1.5 years undiagnosed

Time on Pred - 4.5 years - but probably only 4 years necessary if I did go into remission when I think I did.

Total length of GCA 5.5years definitely- 6 years if you count last 6 months (debatable).

[Tamtan2 in reply to DorsetLady]

Thanks for that Going to see dr In north east who is studying Gca. In a few weeks so hopefully I will get Some answers. Bone sCan results came back perfectly normal so I must still have pmr . gca bloods don’t show any inflammation Monthly results the same For the last 3 months now But still have lumps on scalp but not much pain in temples. No jaw, face, head pain. My fingers are crossed 🤞🏼Thanks again.

[PMRpro Ambassador]

Good!!!!

[LemonZest11 in reply to PMRpro]

You're one of the best! X

[SheffieldJane]

Hello down under! What an encouraging and hope filled post. I have given myself subcutaneous injection number 1 (Tocilizumab) and I really needed to hear that.

Sounds like your Adrenals are working, possibly not to full capacity, that might take another year. I expect now is the time to work towards fitness and ditch the elasticated waists - eek! 🌺

[LemonZest11 in reply to SheffieldJane]

All the best Jane, I hope you will be feeling strong and well soon. You really deserve it. Xx

[Jackoh in reply to SheffieldJane]

Well done that you’ve started - let us know how you get on.

[LemonZest11]

Thank you, it's certainly making a difference for now. 🤞

[Tamtan2]

Good luck stay healthy and happy. 🙏🏽

[LemonZest11 in reply to Tamtan2]

Thank you, it’s all we can do. You too. xx

[Jackoh]

Yes you can only take one day at a time. Good to take your husband’s advice and enjoy this time.

[Dunkel]

stay positive,

[Telian]

That is good news, just don’t overdo it now.