on September 7th, I slipped on my back wet steps falling on my back and breaking three ribs, 8,9 and 10. I called my doctor to see if I should increase my prednisone and was told no, I am on 4mg. The following Friday I was having trouble breathing and went back to the ER. They then found out I had a hemothorax.( blood in my left lung) they inserted a check tube ( through my breast) you heard that right. Then they had to move the tube two days later because it was resting on my aorta!! Lucky to be alive at this point. End result, I was discharged from ICU after the tube was removed five days later. They told me just to see my GP within 3-5 days. I contacted a pulmonologist the next day. He was shocked as to why they went through my breast and referred me to a wound center. I called my rheumatologist when I was informed I still had done blood in my lung but would not need surgery. There is a concern about pneumonia so I am doing daily deep breathing exercised. I then informed him the wound treatment involves them flushing the wound three times a week and packing it. This will be the third week without Actemera. One more week I will be a month behind. I get monthly injections.. I have PMR and GCA. Right now I do not have any pain. I am concerned if I am not permitted to go back on the actrmera due to the lowering of my immune system. Has anyone else in the group had anything issues, surgery ect affecting the use of actrmera?
Thank you.
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No advice on Actemra, but just wanted to say my goodness what a lot you’ve been through - hope you soon improve, and best wishes sent - and a virtual hug 🤗.. definitely not a real one.
Seems to be a duplicate post. Have also replied to other.
I assume you mean you have a monthly INFUSION? The subcutaneous injections are to be used weekly.
At that low a dose of pred, you do have some risk of the GCA reviving - I hope they are keeping a better eye on you now because if it does, you may well need a highers dose of pred in the absence of the Actemra.
Only if you have tapered them, extending the time between injections. I have been on the injections for well over 2 years. I started with weekly and later slowly extended the time to bi-weekly. Those were the intervals used in the clinical trials. Three and 4-weekly intervals have never been studied.
However, having looked back through your posts, I see you had tapered to the 5 weekly - and the GCA flared. Something similar happened to LemonZest11 when she tried to reduce the frequency of the Actemra injections having got off the pred and it was eventually found that she has LVV I thinkand is back on a higher dose of pred.
How interesting that you have been able to remain on Actemra long term in the UK - how was it possible to get that approved? It is applicable to me as I am also on longterm Actemra to be able to reduce the pred dose after some 15 years - I don't live in the UK at present so it is possible here but I will need to return to the UK in the next few years and I dread not having the Actemra.
Hi Pro I’m on long term Toc as they couldn’t control LVV without it. I’m now injecting every 9 days, my consultant didn’t want me to rush the spacing. I’ve been okay on 9 days since May this year.
I’ve just done 7 to 9 in one go which I did in May the consultant didn’t want me to do anything more until he’s seen me again which will probably be in December.
I was on the original trial so have been on Actemra 6 years. The lady in question is already on 4 weekly i think and her concern is that this delay would be extending to 8 weeks. I think its also a balancing act with the pred. Hence my flare. I am now onv3 weekly.
Now THAT is interesting - one of the excuses for not using it for longer is they don't have long term safety data. Despite it being used in inflammatory arthritis for the last 10 years or so and THEY don't have a time constraint!!!!
And yes - I'm very aware of the balancing act with the pred. I had been happily stable for some time on 2 weekly jabs, more than that at 7mg wasn't effective. But I also get flares every few years and must just have had one. So for a couple of weeks I have treated as a flare - and I can feel a big difference. It is all confused by a long term back problem that is also slowly improving - I don't think it was PMR-related so maybe I will be able to see the wood for the trees now!!!!
Thanks PMRpro, yes, once the Actemra was spaced to 4 weekly, my GCA/LVV relapsed. I had been on 3 weekly prior to that but without relapse symptoms, we don't know when things started to devolve. It is understood that Actemra doesn't work at 4 weekly injections and possibly not at 3 weekly, however if you're on pred as well, this can "hold" the inflammation for a while. You need to continue with blood tests to check inflammatory markers because the damage can occur "silently", as in my case. I'm tapering pred from 25mgs, now down to 5mgs and fortnightly Actemra. Will be having regular blood tests once I'm off pred, but in order to get an accurate reading, Actemra will need to be spread back to 4 weekly. It's all a bit of a juggle and I imagine I'll need to be on very low dose pred for the foreseeable future.
Yes I have been on a monthly infusion. I am going to the wound center today idk going to ask their opinion about my chances of getting an infection. I am feeling I want to start the infusions again. I agree with the GCA concern. It’s tossing the dice for sure. Than you
I was taking Actemra 5 weekly at one time but began to get symptoms of GCA. I am having an operation on 14th oct and am advised to give up Actemra for 4 weeks and for just a week double my pred dose to 5mg per day. The Actemra causes your immune system not to work properly so you are less likely to fight infection in your wound. I am so sorry you are having a bad time. I will pray for you and send a hug.
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