Hi, a quick question as I know you will have the answer. I finally received a copy of the letter the consultant sent to my gp after my phone appt on 18th Feb. She told me over the phone to reduce the pred by 1mg every two weeks, but on the letter it says 3/4 weeks after I am on 10mg. This is my last week on 10mg so 9mg will start next Monday. Any suggestions as to how long I should do each reduction bearing in mind I am also on TCZ. Had 2 months so far on TCZ if that makes any difference. My symptoms are OK-ish, mild head pressure, 10% of what it was, and occasional neck issues, but all doable. The only thing, as I have already written about, is my right buttock and right leg, which is still pretty dire, but I am doing exercises and it has improved a teeny bit after 2 weeks, but I still can't walk down the road. But this maybe something totally different.. I am also sleeping, which I haven't done for months!
Can't even do a simple question short can I! Thanks in advance.....
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Sophiestree
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I'm also on TCZ and my Rheumatologist advised 1mg every 28 days, from 10mg downwards, so similar to yours. When I got down to 3, 2 and 1mg I noticed symptoms returning, so I'm back on 5mg and she has suggested I stay on that dose until I stop TCZ when my 'ration' runs out. Then we'll see where we go from there!
I also have GCA-LVV and noticed my legs were complaining, as they did before the LVV was diagnosed. My Rheumatologist feels it could have been the claudication returning, but it might have been due to PMR, which I've had since 2016. (GCA-LVV since 2019). Whatever the cause, she suggested an increase in the pred dose.
By the way, CRP reading will be rock bottom, as the TCZ blocks our inflammatory response - no need to have it checked at all!
I hope my consultant seriously knows that, as I have said before, I have very little faith in her, but hopefully she will know, I don't want to think she is that rubbish 😆
Going to swot up on that for the next phone call. She hasn't even asked for regular blood tests, particularly for liver, which is something that they say needs monitoring, plus the fact I have had liver issues the whole time throughout. Exhausting to keep up with it all, but you're bu*%$!ed if you don't.
I have the leaflet that came in the box. I am going to have a thorough read through that as well. May even just ask the GP to organise the blood tests, but know they will say that the consultant has to suggest it first.... urgh
google that - gives you the article, It's about CRP not rising in severe bacterial infection when the patient is on TCZ - but the principle is the same. CRP isn't relevant ...
Just to add a little to this from my own medical history. I am on 5 mg of Prednisone for PMR. My CRP was 23 when I was diagnosed (1-Apr-19) then dropped back to 1 until I was hospitalized with acute bacterial prostatitis and sepsis (23-Feb-20). I was kept in for a few days on IV antibiotics. My CRP? Went to 5.8 which barely moves the needle into the "there is a bacterial infection" zone. After further treatment (a month on two different oral antibiotics) my CRP is back to 1 again, where it stays to this day. The small CRP test response to a big infection could be both the 5 mg of Prednisone and also my own personal biology. I've never been on any other drugs like TCZ for the PMR as Prednisone seems to do the trick.
If you are on 10mg I would make it 1mg reduction every four weeks not two. You then have time to ensure the reduction is OK and the PMR is still under control and does not give it so much of a chance to raise its ugly head. Being a tender flower, I reduce 0.5mg a month, as I find that works for me.
tender flower 😂 I so feel like that these days and I although thought I was quite robust. I don't have PMR, it actually sounds utterly dreadful when I read some of the symptoms you all suffer from.
The faster taper might be OK with the TCZ - only you can tell that! To some extent it will depend on how long you have been on pred and how rusty your adrenal function is. Only lower pred will wake that up and it takes time, the TCZ has no effect there at all except allowing the lower pred.
Remember TCZ doesn't get half of patients to zero, just to a lower dose, so you MIGHT get a return of symptoms and that ESR and CRP are meaningless when you are on TCZ because of the way it works.
Trying to tell my consultant that she needs to ignore my blood results for ESR/CRP is a challenge! She seems to go by that every time, but to be fair also listens to the fact I do have slight symptoms still. Maybe I could split the difference and do 3 weeks per 1mg reduction.. Is there something I need to look out for, to understand the difference, in terms of adrenal function having been on pred since last Oct starting on 40mg. I am not expecting TCZ to be the miracle, but am enjoying the lesser side effects from the higher doses of pred. They are much more manageable since I got to about 15/12.5mg whereas before they were all consuming against anything else.
Hi I am aware that crp is not reflective of condition when on TCZ but do you know if it literally zeros it or can you still expect some reading?? Hopefully you will know what I’m asking even if there isn’t an answer 😊
I am not sure actually, as i forgot to ask her what the numbers were last time we spoke, I slipped up there, as I like to keep a record, but I do know that ESR/CRP were within normal readings, just not sure what. I will ask when we next speak.
Hi I was wondering if pmrpro had any idea, my consultant still requests it when I have my bloods done but has never explained the benefits of the test when TCZ negates it . Why I was interested is mine has never been zero
It shouldn't be zero I don't think but I suppose it could be as it stops the production of the protein. But it is possible that the lab assay won't show zero, just report as less than whatever the top of their normal range is.
It definitely concerns me that they haven't read the documentation - it states very clearly thst ESR/CRP don't monitor disease activity in TCZ patients.
I am on TCZ as well and the Prof has me reducing 2.5mg every 2 weeks but on alternate days if that makes sense, for example the last 2 weeks I did 10 and 7.5mg and for the next 2 weeks I’m taking 7.5mg, then it will be 7.5 and 5mg for 2 weeks. My jaw and tongue are starting to hurt a bit more as I’m having to lower the dose though. I have GCA LVV and Fibromyalgia.
It certainly is much bigger and seems to go against all the guidelines but when I said before that some of my GCA symptoms were returning/feeling worse and another rheumatology doctor told me to increase my Pred the Prof got really mad and said not to ring again or increase my Pred as he would take me off TCZ. It’s all very confusing.
By the Prof you mean Dasgupta? Several people have noted that sort of reaction from him. Sorry - he is a leading light in the GCA world and without him the charity would possibly not exist but he still needs to listen when patients report problems.
It came as quite a shock as previously I had only spoken with him at the end of my appointments with his research fellowes and he had always seemed so lovely and approachable, so when I turned up for my last appointment and saw it was going to be with the Prof I was initially really pleased and then it all went to pot and I came away quite upset and feeling quite alone, luckily I have a really good GP so have decided that I will speak to her and she has agreed to liaise with Rheumatology if needed. I will still attend my 3 monthly appointments as I am part of the research study. It’s such a shame because as you say this forum would not exist if it were not for him and he is the one that recommended it join it. It is an amazing forum.
I don't know your whole story, but is it possible you've been told not to deviate from the prescribed pred dosage because you're part of a study? If that is the case you should be informed, and also given guidance what to do if your symptoms continue to worsen. Not threatened.
It could be but if so they have never told me that and yes I agree. There are many different ways for someone to ask/tell you something. I rang to speak to one of the rheumatology nurses about 2 months ago as wanted just to clarify some procedures with regards to antibiotics and TCZ and even she told me not to ring again 😱
Wow, people seem to like to hold things against people don't they.Threatening to take you off TCZ is pretty poor. Like a child throwing their toys out of the pram. Was the other rheumatology doctor in the same hospital? Is this Prof Dasgupta?
I think Kendrew had experiences with him in the past.
Yes the other doctor is in the same hospital and yes it was Professor Dasgupta, I had to ask him to stop in the end as I was so close to tears and it did make me feel that I had nowhere to turn for advice but I have since spoken to my GP, who is amazing and she has said she will liaise with Rheumatology if need be. Yes Kendrew has had experience with him before.
Interesting that you had to tell him to stop. I would like to think that he thought about that and has taken it onboard. I have far too many experiences of medics who have grown into monsters over the years.. a great shame and I am really sorry you experienced that. He needs reminding why he is there and who he is working for.
I’d like to think so too but I won’t be holding my breath on that one. I know what you mean about medics becoming monsters and have had a few run ins since my accident 3 1/2 years ago, but at least I have an excellent GP who always talks everything over with me giving me options and ways forward and she is definitely not adverse to looking things up to try and help.
a keeper! I have one who I really like, but I don't always get her unless I write to her specifically. She rang me every day when my husband went into hospital, I think she felt guilty, but why I have no idea, as she certainly didn't need to feel like that. He was stubborn, and no one could tell him what to do regardless. But it was great she did that. I did buy her a gift at the end to say thank you as I wanted to acknowledge she went above and beyond for me, and often suggested things for me to relay to the hospital. The outcome was never going to be anything different though, as by that time he was beyond saving.
Luckily I can always get an appointment with her, sometimes it does mean staying up till midnight, which is when they put some appointments on line for that day, but it is so worth it and she is always happy to book me a face to face appointment when needed.
OK, I definitely can't say that.... but I can get to speak to someone on the same day if urgent or two days if not so that's something I suppose. If I write to her personally, then she calls me when she can. That's brilliant you can get an appt and face to face, the last one of those I had was last August pre-diagnosis. That's with the GP, not hospital obviously. I have requested my own locker there!!!
The trouble is you are so taken aback when they turn nasty - and when I spoke back sharply to one I had a nurse approaching me with raised hands (I gather it is supposed to calm the patient but it causes flashbacks for me), I was hysterical after that. Not helped by OH sitting there with his mouth shut! But it had been HER omission and ignorance of how HER system worked that led to me not being able to drive for months - and she tried to push the blame on ME not having got my results from an EEG! I should have raised a complaint but OH sometimes worked with her - which made it all the more surprising. I refused to see her again.
Oh, I so know that situation, with family members being in contact with them. No wonder I don't trust any medics. Blame game is often due to the person's error and responsibility, rarely the other person they are aiming it at, but a very poor weak way of behaving. Own your errors and I will have a lot more respect for you. And holding your hand up to someone's face is aggressive, if that is what you meant. Either way, it is patronising at its best.
No, it was raised hands as in hallelujah! for some reason - which I now realise is totally not advised! All I'd done before that was speak loudly asking how she thought I could have got the results and that I had come expecting to be told I could be mobile again. She had told me I had to surrender my licence - no I didn't as it turned out, DVLA said so - and that was why OH was there, I couldn't manage public transport and it wasn't the hospital 150 yards from my house! I suppose she realised she was at fault and wasn't going to admit it. No attempt at deescalation - "You will not be seen for the rest of the appointment" , i.e "we'll throw you out"
that's also why you need to go with someone, and most definitely, in my experience, NOT your OH. He was utterly useless at defending me in situations like that, so I always took my sister!
I am on Actemra and 10 mg of Prednisone. My rheumatologist whom I really like and respect takes the the very slow reduction plan. I reduce 1 mg every 6 weeks .. he is a firm believer that slow but steady wins the race ... we’ ll see
Hi Sophiestree. My journey including my reduction programme on Tocilizumab and Prednisolone is attached to my profile.hope you walking improves soon. Take care
Every 1 has their own agenda 4 reducing Pred, but most people (including me) say the DSNS say, e.g. 1/2 mg per month method works better than per week.
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