The nurse came yesterday to got through stuff with me and I administered my first injection, which was all fine.
But they obviously didn’t know anything about what I should be doing re the prednisolone and dosage.
I am taking 30 mg at the moment. I was originally on 40mg and the consultant tried to get me to go to 25mg but my symptoms returned and so I went back to 40mg and have reduced it since Christmas.
I emailed the rheumatology nurses after they left who got the consultant to ring me.
She wants me to reduce the dose by 5mg each week until I get to 15mg and then keep there.
Does that sound like the right thing to do? She always talks about how my CRP and ESR are normal now as if that should be it, but in fairness to her I did ask what I should do if I get more symptoms coming back, and she said to increase the dose by 5mg. I don’t have a lot of faith in her as I know she never really reads my notes and gets a lot of stuff wrong, and I always feel she is desperate to get off the phone and so it’s after that I think of things.
I also believe that Actemra can take a while to kick in.
The other thing I wanted to ask is, if I forgot to do it on the correct day will the following day be ok?
I am forgetful at the best of times, hence having Mon-Fri medication dispensers, but obviously this is different.
A huge thanks in advance.
I love this site and all of you on it, invaluable to me.
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Sophiestree
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Choose a REALLY memorable time that you are likely to always be at home and put notes up everywhere to remind you. And I'm SURE you have a mobile phone? Even I have one I can set 3 different alarm times, 2 are in use for daily medication!
Theoretically being a day late shouldn't hurt BUT that may not be the case so do all you can to keep to the right day. They do emphasise doing it at the same time each week.
They do seem to go for very speedy reductions - but if it were me I;d try the first and see how you get on. The Actemra will allow the dose to reduce with regard to the inflammation. What it won't do is cover the other aspects of pred reduction such as steroid withdrawal rheumatism. That will appear as soon as you change the pred dose, the same day even. See how changing the dose by 5mg works for you. And if it is uncomfortable ask to slow down a bit - especially as she is saying do it every week.
Others who have already started Actemra will be around later to say how they got on.
I think it is just to the degree of early/late morning or afternoon. And I wouldn't have thought it was much of a problem to switch to the weekend - as Rugger says, in the trials there was a group doing it every 2 weeks and the results weren't that different. And you may have to stop it if you develop an infection anyway so that would open up a door to changing day/time/
OK, thank you, that's good to know. I actually just spoke with a friend who suggested maybe moving it along a day each week to get to Sunday, so maybe that might be OK?
Hi, when I started on Tocilizumab my nurse was really helpful and said I could change the day I did it but to do it as you’ve just said by doing it one day later each week until you reach the day you want to change to. I have a reminder on my phone for injection time and then I set the kitchen timer when I take it out of the fridge for the 45mins warm up time otherwise I know I would have a tendency to forget it’s there 🤣. That’s the trouble with having so many different medications to take. At present I’m on 13 different meds, I’m sure I must rattle when I move 🤣🤣
Welcome to the TCZ club! I was on only 10mg pred when I started TCZ 10 months ago and my Rheumatologist set out a taper plan of 1mg every 28 days. I got down to within a few days of zero pred, but I felt some symptoms returning, so I've been back on 5mg for the last 2 months and will be reviewed tomorrow.
The TCZ seemed to have an almost immediate effect for me - so much more energy and my legs were stronger. (I am on it for GCA-LVV) I hope you feel the benefit soon.
I had my 'injection training' at 3pm on a Friday, so that became the set time and day for my dose. However, I had to miss 2 doses because my neutrophil count fell. I got the green light to return to TCZ on a Wednesday, so 3pm Wednesday is the new time! I stick to this, but you shouldn't panic if you do forget, as some people take TCZ fortnightly - especially in the US.
Yes, this is for LVV like you. I am clearly a long way off zero, but am really hoping that by reducing the prednisolone the symptoms that brings will start to subside. But I guess if you have pred withdrawal that might be tricky to differentiate.
I will look forward to having some energy!!
Thank you for replying, really helpful to see how others have managed.
Welcome to our small but growing group of Actemra users! I have been on it now for about 6 months. I was very nervous of it at first but it got easier. I was also advised to take it at the same time every day. I take it at 11 am every Friday. My husband administers the injection, he’s become very proficient and has a better memory than I do. I was advised by my Rheumatologist to do a very steep reduction from 40 mgs that I had been on for a few weeks. (For newly diagnosed GCA/LVV). She wanted me to go straight to zero in 5 mgs drops to 20 mgs and then 2.5 mgs to 10 mgs. I managed this astonishingly easily as the Actemra seemed to insulate me from the usual Pred withdrawal symptoms. After 10 mgs was a different story and I started to get headaches and feel unwell.Part of the reason for going on to Actemra was after 4.5 years I had developed significant, silent, side effects from steroid use eg hypertension and steroid induced diabetes. Both these side effects have corrected. I remain at 10 mgs and have recently had a virus ( not COVID) and this has resulted in me increasing by 5 mgs Pred yesterday and feeling instantly, so much better. It is my intention to remain on this increased dose for about a week and then return straight to 10 mgs. I want to decrease further but feel a bit stuck. My Rheumatologist seems quite laid back about this but she was hoping I’d get right off it. When the time comes I will do a dead slow taper in drops of 1 mg and then after 5 mgs 0.5 mgs to support my Adrenal function. My Endocrinologist wants to see me when I am 5 mgs Pred or lower.
I am happy to talk about Actemra by DM as I still think it is a minority interest. It doesn’t feel as dramatically helpful as Pred did for me but if it is safeguarding me and getting me off steroids then I regard it as worth it.
PS I stopped for 2 weeks for a course of antibiotics which is advisable. I have been told that there is no need to stop, by my Rheumatologist and my GP, for the COVID vaccine, but it concerns me.
OK, I haven't managed it anyway! But understand others might want to hear the story. I am keen to know how I get on with this, and really hoping it will reduce the pred as I find the side effects quite debilitating at times.
Hi again. Yes if discussion can be open it’s greatly appreciated. Selfishly I have been referred for Tocilizumab so all this information is invaluable. Good luck with it. Sounds hopeful which is a great thing 😀👍
Yes perhaps you’re right. It is moving towards a drug of choice in the few short months I’ve been on it. I was thinking of the niggles, like stubborn little infections that won’t go. Conjunctivitis, nasal, and even the side of my fingernail bed. I bore myself with it.
that's good to know you dropped prednisolone over a short period of time, I was concerned about that. When you say you don't find it as dramatically helpful, do you mean you have symptoms?I will try a week on each 5mg reduction and see how I go.
I have a confession to make, I wasn't 100% how to DM people!
Feel silly, but rarely do social media etc, not on Facebook etc. so I can just about manage to post!
thanks for your experience, really helpful to read
I was thinking about the Pred miracle that some of us get, me included, where you go from hardly being able to walk, get out of bed/ bath, lift your arms above your head, to being pain free, upright and mobile and a bit hyper. Tocilizumab/Actemra seems more subtle and I feel a bit low level seedy most of the time but the major symptoms of GCA are absent.
Yes, it was a miracle for me too, instantly, although I did have three days on 1 gram per day, so guess that was a massive hit to my system. Instantly got conjunctivitis off the back of that. So will look out for anything else. My eyes feels continuously blurry anyway, which I am putting down to the pred, plus I have the joy of a floater bang in the middle of my vision in my left eye. But I have terrible sinus' so I will keep an eye out on those.
Do see a good Optician with state of the art equipment just as soon as you can, just in case your eyes have developed problems such as cataracts, glaucoma or retinopathy, vitreous or retinal detachments etc. I sound like a worry wort but it is essential that we monitor our precious eyes. I was sent to ophthalmology to investigate these conditions further, small cataracts and mild retinopathy remain. I think we need to be pro-active and well informed whilst our medics battle COVID.I use Demista nasal drops to not much avail and my Actemra injection seems to set my conjunctivitis off but I have Fusidic Acid 1% ointment which settles it. I have ordered a nice pale green first aid tin. I am putting antiseptic creams, different types of plasters. I seem to be fighting little assaults to my system constantly.
If you want to DM anyone just tap on their name, this will enable you to chat about things if you need to say. “ Is this daft etc etc?
I did recently go to an optician as I now need reading glasses but different strengths for different things so had to order a pair of bifocals for driving as I couldn't read the dashboard brilliantly.
I've always had really dry eyes and have drops and gel for that, plus he said he saw the floaters but that they could take months to move away from my direct sight, and the start of a cataract in one eye but that it was to the side and would be years before it might be a problem.
I suppose it's hard to know who good and who isn't. He certainly didn't do a hard sell on me and said he was happy for me to bring in my own frames for a prescription lens.
Hi SJ havent heard of this ACTEMRA alot of people are on, the way iam reading it it's to get of the steroids I haven't got Rheumatolgist had one for a year then got phone calls then he said he would things to my GP and at the moment that's a joke.
In the U.K. GCA patients are allowed to have one year of Tocilizumab ( Actemra) thereby avoiding the very high initial dose of Pred. It is the only other drug that has shown beneficial results in our conditions. You must fit certain criteria to qualify for it ie all else has failed. I am hoping that this becomes more flexible in time especially as they have been treating advanced COVID successfully with it and it pays for itself in keeping people out of ICU. It is a very expensive drug and there was quite a campaign to get NICE to allow it for GCA ( not PMR yet). Our American members seem to be prescribed it more readily. It gives hope because it appears to impact on the actual disease process, not just the symptoms. I was able to reduce Pred quite quickly ( a relief after 5 years) once I was on Tocilizumab weekly injections.PMR is often considered suitable for treatment by GPs only. Of course everything is fraught with the Pandemic at present. Thank goodness we have this reliable forum. I hope this answers your questions.
The fast drop is fine down to 10mg - beyond that there is the matter of returning adrenal function to take into consideration but that just means slowing down a lot as it can be slow to wake up. But she is obviously remembering that.
that's good to know. She did say to stop at 15mg and then she would talk to me, so I will do that by reducing 5mg a week starting on Monday. And will try and keep to the lunchtime Wednesday dose for now as it seems the right thing to do, and then will tackle it if it gets affects anything I might have to do.thank you, all really useful reading all of this and everyone's thoughts
Hi , Sophiestree, I have been on self-injected Ro-actemra for 18 months now ( thankfully extended by NHS decree because of the Covid pandemic). It’s been almost miraculous for me- it worked within a week of the first jab and I felt almost instantly completely better.
Before Tocilizumab, I had had a number of “flares” over the 2 years since first being diagnosed with GCA (June 2017), but no pain, just high blood inflammatory factors, and eventually a PET-CT scan confirmed severe large vessel arteritis.
My terrible reactions to Prednisolone caused me to reduce pred dose (very carefully) on my own- it took 8 months to get approval for me to get Tocilizumab, by which time I had reduced to 10 mg per day, but looking at my notes, I only reduced by 1mg per month after starting the injections.
By late March 2018, I had taken my last Prednisolone and Omeprazole tablet, and have not taken any since then. I get a blood test every 3 months ( all have been totally normal since starting Tocilizumab, the latest last Monday).
The only infections I’ve had have been mild Shingles (sadly I didn’t manage to get my Shingles vaccination, so it has been a constant problem, both before and after starting Tocilizumab, but I know when it’s starting up, and my GP gives me Aciclovir straight away, which clears it up usually in 7 or 8 days).
I had to suspend injections just for 10 days last Summer ( for Shingles), but it didn’t seem to make any difference.
Interesting you have had it for 18 months, that is something else I am wondering about. When it stops next January I hope I don't go back to square one. I have had shingles once, many years ago, and managed to give my 18 year old daughter chicken pox! I know you can get it more than once, so will cross my fingers that doesn't happen. Good to hear your story. thank you
Yes - tocilizumab is the substance name and Actemra the brand name. The -mab ending is the monoclonal antibody designation - no idea where the first part of any biologic name comes from but it is always unpronounceable!!
I have been on Actemra for 3 years and off Pred approx 2. It has worked very well for me. Am currently on every other week injections. I have found it very forgiving in regards to forgetting or shifting it. I circle the date I inject on my wall calendar and mark left or right belly. I can easily see when due next and which side to alternate on. I shifted to injecting just before bed as I found I slept through the mild headache and fatigue I was getting post dose. Do recall your CRP marker will not mean anything while on Actemra as it takes them to near zero by it’s action.
I am guessing, if you have been on it for 3 years, that you are not UK based, as, other than at present due to Covid, I believe you only get 12 months due to the cost.
Really interesting thread, firstly, wishing you the best luck, Sophiestree, I hope everything goes smoothly. Secondly, so agree about hating being asked how one is and, more to the point, having to answer- lovely that people care, but nothing is more boring than talking about one’s ailments ( especially as, for people to really understand what it’s like, you have to offer quite a lot of detail... and I’m not always sure I understand myself (still only 5 months into GCA). Last question - what are the criteria for being offered Tocilizumab, and what are the benefits, as opposed to just Pred?Apologies for naive question, but I’m still semi-ignorant. At my first rheumy consultation I was told I might get offered it, but only for a year... later on, she said I wouldn’t be eligible. So who is, why, and why would one be better off? Many thanks everyone...yes, this is a wonderful forum
It allows a speedy reduction in the dose of pred because it targets one underlying mechanism that creates the inflammation. In the UK it its use for GCA is restricted to patients who are repeatedly unable to reduce their pred dose without the symptoms returning or have other quite strict criteria which seems to include patients who have had PMR but which progesses quite late to GCA or LVV (large vessel vasculitis) requiring a much higher pred dose after a long history of lower dose. For some reason NICE also decided to limit funding for its use to 1 year in general - there is no such limitation for use in rheumatoid arthritis though. It is very expensive - about £12,000 a year - but GCA is a rare illness. It is sometimes used for PMR in the USA but it isn't that usual.
Many thanks, PMRPro... so it would be a slightly phyrric victory in my case, it would mean I'd had a long tie trying unsuccessfully to come off red. We'll see!
To be honest, I am not sure what criteria they used for me. I do have pretty bad osteoporosis, and my calcium levels were high pre diagnosis which is why they are also looking into my parathyroid. When they started to reduce my pred dose my symptoms came back almost overnight, but from knowing what I have read on here, it was likely way too quick anyway, but the consultant decided that therefore the pred was not working.She gets bogged down with my inflammation markers being fine. But from suggesting it to getting it was weeks which I was not expecting. I am unsure why it was so quick, other than wondering, as it is considered a training hospital, plus they were about to start research in this area, with volunteers, that maybe their internal panel could approve it that quickly, rather than going through NICE which takes longer. I may never know to be honest.
It could well be that it is extensive LVV (affecting the arteries in the trunk) - TCZ was approved for use in Takayasu's ateritis and wide involvement of the trunk arteries may well bring it closer to that with the potential to affect more organs.
Yes, I definitely have extensive LVV as you say in the trunk area which has affected my liver, colon, lungs etc so maybe that is why. I'm not complaining and am hopeful that this will help.
Of the organs? I had endless CTs/MRIs/Ultrasounds etcThey found adenomas, lesions etc,,,
Pulmonary nodule and pleural thickening
Lung cyst
Benign cyst in tonsils
Adenoma on parathyroid
Lesions in both lobes of liver
cyst in kidney
thickening of colon
as much as that reads as a crazy list, I am not worried about any of them to be honest, they are keeping an eye on things regarding yearly scans and depending on the consultant they are confident some things are old scarring from Pneumonias and Pleurisy for many years as a child, others age related,
The gastro side has definitely been affected by the inflammation, but settled now.
Plus I have embraced the low carb diet well, and wasn't a huge sugar fan before really so that isn't difficult for me. Rarely drank, so again, not an issue.
I am however, keen to find out about the parathyroid as have had an underactive thyroid for over 40 years which runs in the family, and the osteoporosis is a huge concern for me. My mother was in a pretty bad way by the time she died from it.
I need to build up my exercise though, as that has suffered terribly. I have definitely lost muscle and merely gained fat. Not great with liver issues.
That's a respectable haul!!! I suspect that all contributed to the TCZ decision! And yes - I'd want to know about the parathyroid issue too. To be continued ...
It is rather hilarious... hence so many consultants, scans etc. I have an indexed folder now it has got so out of hand. But to be fair, if you asked me, I don't feel that bad really, I think it just looks overwhelming... definitely a glass half full girl...
Sadly, no, when I was under the Infectious Diseases Consultant they might have done, but as soon as I got the diagnosis he discharged me.. The one that's really on the ball is the Endocrinologist, but they are so backed up it took 4 months for my first phone call appt, and the next one is April...
But I'm guessing if the nuclear scan and next weeks CT show anything they'll ring.
Liver and Lung guys are pretty good too.
The consultant rheumatologist hasn't read my notes and she gets a lot wrong. The one I need right now!
Well gosh - there's a shock!!! They seem to be very uncurious about the complex stuff - I'm sure they went into rheumatology thinking it was an easy life with no night duty and weekend callouts! I'm old enough to remember the days when consultants did case conferences to join up the dots ...
Yes indeed...My father , who died over 30 years ago in his early 60s,was a GP and was never home. Always out on calls. I remember being so happy he was on call on Christmas Day as few people would ring, but come Boxing Day, it was a totally different story... but the flip side of that is, there could be some incredibly arrogant consultants. I remember seeing one when I was 11 who stamped their feet at me because I was too shy to talk... at least 95% of the ones I've seen in the last 5 months have been very different with a better 'bedside manner'.
And they've all wanted to see me at least on the first appt before phone calls, except... oh yes, my rheumatologist.
I started Actemra 17 months ago for GCA / PMR. I noticed improvement in the first week and I continued to improve for several months. I was on 10 mg prednisone when I started and the Actemra stopped the GCA flare without using high dose Prednisone which I had previously struggled with because of the side effects. Although I try to take Actemra at the same time each day, to avoid introducing any more variables, I have moved it both earlier in the day and later with no difficulty so that I could manage my work schedule. I have also delayed the shot for a day (missed flight) and felt fine. I just continued on the 7 day schedule from the new day. My Rheumatologist has said eventually I would move to a 14 day period between shots but not sure what the criteria are as I haven't seen him in a while (COVID)!
In the U.K. I think my assumption is right. We would still only get it for a year if we moved to fortnightly injections . I hope this situation improves by some little miracle along the road. There certainly seems to a buzz around it, mainly due to the success with advanced COVID I think.You seem to be a very good fit for it Sophiestree.
Someone said that - which seems very silly! The results weren't that different so why not start with weekly and switch to 2-weekly and extend the duration. Or is that too logical?
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Tapering and change of status 
Doctor has dropped my pred 15mg to 2.5mg !
More advice please
predetermined!
Rheumy appointment
