Hi Everyone,
I’m wondering if there is anyone on here who is managing their Actemra injection pen shots four-weekly? I’m interested to know why your shots are spaced out to 4 weekly (or more), and for how long and how successfully you are managing this.
Thanks. 😘
I think you are the longest gap I have come across.
No, there is someone on here is 4 weekly. Might be American, not sure. But I definitely recall seeing someone. I guess there might be more?
Injections or infusions? They are 4 weekly.
My recollection, injections. I remember at the time that I was intrigued, but perhaps I got it wrong.
I suppose it depends on each individual's clinical response. Would the half-life of the drug also need to be considered? I've seen figures of 8 - 14 days mentioned for TCZ, which is a wide range. If it takes 5.5 half lives to eliminate, then 4-weekly injections might still be useful. Who knows? I suppose the only thing is to try it and see how you respond. All the best.
Thanks Rugger, I still don't understand how the half life thing works 🤷♀️. I've just stretched to 3.5 weekly jabs. Early days. I still reckon there is someone on here at 4 weekly jabs, but as PMRpro suggested, perhaps that was the infusions, I could be wrong.
The half life does what is says on the tin, After one half life the amount of the substance in the blood stream has halved - half has decayed (if it is radioactive) or been eliminated via the liver or kidneys. After another half life, the amount is down to a half of that level. This continues until after about 5.5 half lives the amount left is effectively zero -it isn't zero but isn't usually enough to do anything,
youtube.com/watch?v=tzM6aK5...
has a practical explanation ...
😳🤷♀️
Do you mean 4 shots each and every week?! That seems like a lot based on my information. I am on Actemra and take one shot each week. I take them on the same day each week.
No - shots administered at 4 weekly intervals.
Ok. I give myself on injection each week on the same day each week. I have been doing this for about a year and a half. No issues. Does that answer your initial question?
Wasn't my question ...
Lemonzest is off pred entirely I think and is now trying to taper her TCZ and has reached a jab of every 3 and a half weeks - the info she is looking for is whether anyone injects every 4 weeks successfully.
Correct PMRpro, spot on. So I don't need elocution lessons after all 🤣
Hello, great question and sadly I cannot answer it but I am following you on the same journey and am wondering if you experienced any 'symptoms' as you reduced from weekly to fortnightly to 3 weekly etc and how long did you stay with each time span? I am currently doing fortnightly and have been for 3 months but would love to reduce more. Thanks.x
Hi MarksPoint, I was initially on weekly TCZ jabs but my rheumatologist swapped me to fortnightly due to low neutrophils (neutropenia). I felt no change but I continued with the neutropenia so she tried me on 3 weekly needles. These continued to work well, and I have felt absolutely no side-effects. At on point in my taper, I got to 1.5mgs pred at the same time as stretching the TCZ to four-weekly needles, but I experienced a flare and so went back to 3 weekly TCZ and needed to increase the pred for a couple of weeks before going to 2mgs where I stayed for months. Over quite a lengthy period of tiny pred reductions (.25mgs per 4 - 6 weeks), I have now been off pred for 12 weeks. I have just begun the next process of reducing the TCZ. This is where I am in the dark … I don’t know if the disease is in remission or if I am going to flare at any point from now 🤷♀️. Yesterday I gave myself my first jab of TCZ at 3.5 weeks, and so far I am feeling OK. I don’t know, with all the aches that have surfaced since nil pred, not PMR/GCA related, I am just sucking it up and gratefully moving forward. How are you?
Hi thanks for all your info...it really does help to know other stories. I am in Lake Macquarie NSW and was diagnosed with GCA Nov 2021. given 65 mg Pred which I reduced to zero 5 months ago. I have been on Actemra for 14 months and since diagnosis have changed to a 100% anti inflammatory diet....walk as often as I can.... swim daily in a freezing cold pool - doing the Wim Hoff protocol and generally quietly living with this debilitating disease whilst trying my hardest to outwit it. The side effects from Pred were diabolical for me and I am beginning to leave some of them behind ...fingers crossed. I have aged physically and mentally 20 years in the last 2 years and I so want to get my life back. Reducing Actemra is my goal....but not at the expense of a flare. My rheumo is nothing short of useless when it comes to the reality of living with GCA and its medications. The people on this site are my real doctors if u know what I mean. X
I see that you are in Australia, where are you?
I'm happy to chat via phone if u feel it will help us to help each other. Where in Oz are you?
I’m in Perth, Western Australia. I’m unable to chat at the moment, I am up to my eyeballs in grandkids, organising family and an overseas trip which is being made really difficult by Qantas. Perhaps we can chat down the track. Take care xx
No worries.......keep posting about your Actemra jabs and I will keep up with you that way.
Will do, thanks.
I don't know if she did it but at one point I suggested to LZ that adding a day at a time to the gap between Actemra jabs would probably result in in a tapering effect without too much difficulty. I'm still very much on weekly jabs and need 7mg pred still but I notice I feel it is time for the next jab but that is changing subtly I think.
Oh good new PP!! I did try that, spaced it an extra day, all good, so this most recent time I went to 3.5 weeks. I’m planning on doing that, if all is OK, for a couple more times. I have a Rheumatologist appt on 1st June, she’ll be a bit cranky that I haven’t moved faster with the tcz because I know I’ll have a battle with her about contacting Roche to get my script renewed. I still have one script of 4 and a couple of other needles left so no big rush, but I always have a little fight with her but she ends up helping me after I beg!! For you, if you are having no side-effects from the tcz, I’d keep at weekly until you can manage to get down a little more with the pred. 7 is brilliant, but 5 would be wonderful!! I’m cautious, as you know, because of past experience. I am absolutely thrilled for you though.
Thanks for that suggestion, I had been thinking of doing it that way...if I decide to try and reduce. I am so unsure about what to do as the last thing I want to happen is a flare caused by not enough Actemra in my system ! I am quite keen to get off Actemra though because I also have Microvascular Angina and as we know, Actemra can elevate cholesterol levels and that is exactly what has happened to me. I somehow think I will wait a little longer before very slowly reducing the shots and keep my fingers crossed x. Thanks again.
Hi again, you mention that you have been on Actemra for 14 months now, are you using it fortnightly? Oh yes, I see that you are. With a 12month allocation of Actemra, that should give you sufficient time to reduce 🤞.
Yes LZ, I had a free 12 month script but that ended 2 months ago and I am now buying it at @$200 per jab which cheeses me off but after approaching Roche and getting nowhere I just decided to get on with it. I have also decided in the last few days to reduce Actemra by one day extra each fortnight, which is what you tried I believe. That should get me to a 3 weekly injection protocol in about 3 months time - all fingers and toes crossed no flares. I am still finding it very difficult coming to terms with the medical professions handling of GCA patients, after diagnosis and initial concern to prevent blindness, the care and concern seems to just vaporise and we really are left to our own devices for the most part. Especially it seems in the UK and Oz. Again I am so grateful for the love and help from the GCAers on this site. x
Don't think it is the medical professions so much as the clenched fist the fundholders keep in their pockets. I don't think THEY really understand the difference being off steroids makes to us since for the vast majority a very cheap drug manages the inflammation and most are off it in 3 or 4 years - though they are still told it lasts only 2 years. Most rheumies I know would use it far far more if allowed to. My guy says he is so pleased Italy gives him the option - nowhere else he knows of would.
Can I ask what you mean by Italy gives him the option ?
All such prescribing is a national peculiarity governed by the national government - he worked in Austria and the UK previously and wouldn't be able to use it in either. Here in Italy he can.
TCZ?
Tocilizumab - Actemra is the brand name, it is RoActemra in Europe.
I had no idea that it was so restricted. I realise that the allocation is for 12 months in UK and here in Australia, but that is down to our health funding, called the PBS (pharmaceutical benefit scheme) here, where we are subsidised. But that is because of trials only lasting 12 months. Are you saying that your guy couldn’t prescribe it in UK and Austria?
Only for GCA and under the national guidelines whatever they are, The rules are totally different for RA - no questions asked.
Aahhh, I see. Yes, the same in Australia. Need a doc who says we have RA 😉
Not quite - RA in remission???????
What’s the point of that? I think it might be different here. I know someone who was on tcz for RA, didn’t work for her but if it had, she’d have access indefinitely.
Think you're missing what I'm saying 
Yep, it’s not making sense.
Sorry, I didn't know you were in Italy......lucky you on both counts !
Hello again MP, I went straight to 3 weekly after fortnightly didn’t address my neutropenia. I had no problems at all. It was when I tried to go to 4 weekly that I had the flare, but that was some time ago. I’m attempting, at PMRpro’s suggestion, to space out to 4 weekly again, by going 1 day per cycle firstly, but now half weekly. This cycle is OK so far, so that’s my first attempt at 3.5 weeks. I’m going to stay here for a couple of cycles. When I say “cycles”, I mean the time in between jabs. TCZ changed things for me. I approached Roche, after seeking political support which I couldn’t get because of the lack of research beyond 12 months on Roche’s part. Roche is subsiding my scripts, but it all had to go through my rheumatologist, and that was tricky because she wanted me to try methotrexate et al before she’d help me. But she relented and so here I am. It still costs, but I pay for two scripts and they give me 3. But I understand why you went the way you did, the battle was debilitating. Keep going. I’d give 3 weekly a go, apparently the half-life (whatever that is) indicates that 3 weekly works. I am proof.
Can I ask what did the flare feel like when you went from 3 to 4 ? How bad was it and what did you do to stop it happening?
I was still at 1.5mgs pred, I think, somewhere around there. I had a return of the old symptoms … stiffness and soreness in hips, shoulders and general achiness all over. Once I realised what was happening, my rheumatologist told me to increase to 5mgs for a week, then 4 for a week and then back to 1.5mgs. I didn’t follow exactly, I went up to 4mgs, then 3 and then back to 1.5mgs, and continued my slow pred taper, returning to 3 weekly injections. All was fine. As you know, I have been off pred for 13 weeks now and just had my first 3.5 weekly injection last week. So far, so good.
Good luck LZ, I hope you continue to defy this disease ! Thanks for your experience, I hope not to need it but I have it if I do. x
And also to you. It sounds like you have things in hand at the moment. I go week by week with this. Take care.
HELP...TCA,PMR, FIBRO Actemra
Actemra
Tocilizumab(Actemra) withdrawn
