After having my first face to face appt in Dec 2021 (after diagnosis in Oct 2020) which went really well, sadly that particular registrar then got a consultants appt at Kings College. I think he was shocked I had not seen anyone and so arranged two futher appts for me. One which was yesterday was with the Rheumatology nurse, and the next at the end of July with my consultant, who I have yet to meet, but have spoken on the phone at the start and was none too impressed.
So everything was going fine until the nurse decided to check something with the consultant. I had told her I was slowly reducing and was now down to 7mg.
She came back and said that I had to reduce by 1mg every 3 weeks to get down to 5mg and when I said I wasn't sure if I would manage that quick a reduction, she said that it might affect my Actemra and that I wouldn't be able to have it as it was clearly not working!
I have looked at my DL tapering plan, and even if I try over 4 weeks instead of 5 weeks I would not be at 5mg when the appt is due, so considering cancelling it and just waiting until I have got down to 5mg.
They have had no interest in me whatsoever since diagnosis so I can't see why they can now start to dictate.
Interestingly it has completely deflated me. I was staying where I was because they didn't seem to care and I have been doing everything at my own pace. If they decide to change that then I may well consider moving elsewhere.
So frustrating. The implication was I was only given a further 6 months of Actemra TCZ when I thought it was a year, so have emailed the company to check that.
If it's a year, I will definitely ignore them.
Arghhhhh
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Sophiestree
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Being on pred WON'T affect the Actemra - what drivel. Half of GCA patients need a low dose of pred ongoing because there are 3 mechanisms that create the inflammation and TCZ only works for one of them, the others, if present, need pred to combat the inflammation.
No chance of following your knight in shing armour?
Well exactly.... even if Kings College is a trek, I think it might be worth it. Was wondering whether to contact him via Twitter and ask first? Or is that too intrusive and better to find details via a secretary.
Look him up on the hospital site and see what it says though they don't usually restrict who they see in an NHS post. He's not in the Lupus Centre of Excellence is he?
Yes. That's the concern I guess. I saw him on LinkedIn. I might ring and see if I can get a secretary to speak to and ask if he is only seeing Lupus patients.
Yes. My doctor was very happy to refer me if I knew who I wanted but said it was done on some NHS online thing that doesn't guarantee the actual consultant. Which would be disappointing!
Perhaps have a look at the Post on Tocilizumab - recently added to FAQ’s.
I’m not on TCZ or have a deep knowledge of it but my understanding is the point of TCZ is to reduce the inflammation enabling you reduce the Prednisolone more quickly than without it’s addition.
Yes. I think what she was trying to say was that because I was on TCZ I should have been on a lower dose of pred by now and that clearly the TCZ wasn't doing it's job and so I may not get it extended.
It is the way they get the actual rate of various adverse effects. One person suffering it during a clinical trial isn't much, but once it is in use by hundreds of thousands it may actually turn out to be far more common. And there will be rare effects that weren't seen in trials at all.
The NHS runs a Yellow Card Scheme and all Pharmacists have them free of charge and free postage.
This scheme is so that people who are taking medication and run into a side effect that is not listed common then fill it in and send it. Also when a new drug (ie TCZ) comes onto the general public because drug trials don't get a good cross section of the public and can be quite short (around a year) then it is essential that we fill them in.
The cards are collated and eventually put in the correct place.
Common, (these are in the paper which comes with your prescription and OTC stuff.
Infrequent Side Effects, Rare Side Effects and Extremely Rare Side Effects.
Now as PRED has been on the market since the 50's that is how we know there are 82 listed..
However I would add Steroid Brain Fog and Treacle Brain.
You can also put 'Yellow Card Scheme UK' in your search engine and, if I remember correctly can do it online. It is also a more detailed explantion.
That sounds like bullying to me, from your gateway person ie the Rheumatology Nurse. I had a similar experience with my GPs pharmacy. The woman over exceeded her authority and made my life very difficult at every turn, probably because she preferred dumb obedience to questions - she wasn’t even the pharmacist. When I moved pharmacies, all problems completely evaporated. I think it is a personality type that we unfortunately, encounter occasionally.My Actemra enabled an easy taper to 10 mgs of Prednisalone and then it stopped. I needed 10 mgs to prevent a return of symptoms. This doesn’t mean that it wasn’t working for me. It had worked from 40 mgs. I am sure that my very experienced, highly respected, Rheumatologist would have told me if she thought it was pointless to continue.
You may find that the new Rheumatologist is more impressive in person. I would give them a chance.
I have now reduced to 6 mgs, at my own pace and so far so good.
I learned not to ignite my pharmacy assistant by arguing. Perhaps that is the way forward. Save it up for your Rheumatologist appointment. In the meantime be on the lookout for another Rheumatologist. Any chance of following your good Rheumatologist to Kings College? Worth the trip twice a year if at all feasible. Good luck and we’ll done for remaining steadfast in your self belief.
That's exactly it, isn't it. I thought I had done really well to get from 40mg to 7mg in 18 months.
They have completely ignored me up to now. So can't see how they can start to dictate just becausethe good one who's left thought i needed monitoring more.
Plus I have had covid which took 2 weeks to get a negative lateral flow and was left with the most hideous infected sinuses which keep me awake and I'm on day 8 of antibiotics and it's still bad.
Of course your nasty Covid experience will be feeding into all of this. It sounds horrible. I hope it lifts soon. As Dad2Cue says, it really isn’t one size fits all with these drugs. Good doctors listen carefully to the patient and are led by this in their therapeutic decisions in collaboration with the patient.
Yes. I can see exactly what you are saying. The funny thing is after 2 months on just pred when I told her my symptoms were just as bad she told me that the pred was clearly not working hence applying for the TCZ so who knows.
It has to go to a panel and is usually only given for 12 months for GCA/LVV, but was extended due to covid.
If you started TCZ in January 2021, then your allocation is likely to have run out on March 31st 2022. NHS England didn't extend it BY a year, they extended it beyond our 52 weeks, but only up to 31.03.2022, for those of us who started on it before 31.03.2021. Mine has just run out and my Rheumatologist is starting me on MTX instead.
Your wrote that' you do not understand why TCZ is stopped after a year if it is working'.
In the UK the cost of TCZ is £19,000 for one year. So that is the reason why and not everyone who has GCA fits the critieria for being given TCZ on the NHS.
Remember you are in the USA and countries have different health systems and that is why we ask everyone to put their location in their profile.
I do know what you mean about having excess. That wouldn't sit very well with me either. I was ring the day after my covid positive result and offered the antivirals but declined as I didn't feel that bad at the time and felt they should go to more deserving people.
You are in a tricky dilemma aren't you. You have so much going on it's admirable how you deal with it all.
You say you are at Whippy Cross - a typo? Whipps Cross? if so, you are in the area of the London Hospital in Whitechapel. I do not recommend their Rheumatology department. I was given their professor and he clearly does not understand PMR and gave me bad advice (which I did not follow and the relationship has now ended).
Just a warning!
I'm glad to have an update on Whipps Cross as I had heard that there was a good rheumatologist there - sad that is no longer the case, it seems from what you say. If I need one in the future I will remember Kings.
Ha! I didn't even see that typo. Autocorrect doesn't get it sometimes.
I don't know all the rheumatologists at Whipps, mine is a female and only works certain days so there may well be better that I don't know about. I'm not sure moving within the same hospital would help me as they are all so loyal to each other and wouldn't contradict anything that has gone before.
There are a couple of rheumies who have been praised in east London hospitals and somewhere has a GCA fastrack I think - it is finding them that is difficult.
I imagine Luton and Dunstable is pretty good for GCA - Vanessa Quick is there and I'm fairly sure someone on the forum is under her - reported she still uses the Quick and Kirwan approach to tapering. After all, she wrote the script so now she's showing the film Didn't she do a talk for us about dx'ing GCA that I saw in recent history?
She trained with Kirwan at Bristol - must have a really good basis:
I asked my cousin when I was first diagnosed with Osteoporosis as she is a nurse running Outpatients at Whipps. She recommended a cocky consultant who I've since compared notes with others and they are all in agreement. Gone to Royal Free now so that's good.
Totally within your right and I totally understand and believe strongly you made the right decision.
I fired my rheumatologist because she would not give me a medical waver so I could keep my job because I refuse to comply with mandates. She recommended I get the shot instead, as she did. I had to tell my employer to fire me because it won’t happen not even at gun point standing up against a wall. It is not worth the million dollars to me.
To each their own, I believe strongly in freedom of choice. I adhere to the Nuremberg Code.
No medical experimentation on this Jew.
Never Again
Maybe we are on the same wave length but from a different point of view?
Hi Sophiestree. Just to say that 10 weeks after starting TCZ, I was also told by consultant to decrease more pred rapidly, in my case by 1mg every 2 weeks. He told me that I could go up a mg if necessary, but to tough it out a bit. He hopes I'll be off pred by the time he next sees me, in August I've just gone down to 7mg, and seem to have more or less got away with it, bar a stubborn pain in front of left armpit. So it seems our consultants went to the same school! I don't understand why, if you decrease by 1mg every 4 weeks, you won't get down to 5mg in 3 months. But in any case, I wouldn't cancel the appointment - they're so hard to get, and in my experience, if I say I'm on a dose a bit higher than they would have expected, it is always accepted without question. In any case, if they wanted you to be at 5mg, when you're still at 6, what are they going to do about it? you only have to say you had problems reducing. As to whether TCZ is working or not, if it's got you below where you were stuck before, then it must be working, mustn't it?TCZ prescriptions - I think the prescriptions are sent every couple of months. I had a hitch with mine after the first 3 months when Lloyds Homecare said (erroneously) that they didn't have a new prescription, and again last week , 2 months later, when it seems they just forgot about it.🙄 Good luck!
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Didn't she do a talk for us about dx'ing GCA that I saw in recent history?
Will I ever be off pred with GCA?
What a difference a day makes... 
Recovered from Flare, tapering resumes...
What a difference 1mg has made!
