Just preparing myself for a consultant phone appt as I have to be ready due to the fact, 1) she tells me this will only be for one year, 2) my inflammation markers are normal and so she doesn't understand why I have symptoms returning and 3) if I'm also on TCZ I should be able to reduce my pred quickly.
I have been reducing since our last call. At the time I was on 15mg, went to 12.5 for 2 weeks, then 10 for 2, and then 9. During this time my symptoms were beginning to return, albeit mild, until I got to 10 and 9. Vice around my head to the point of wincing and all the original symptoms of neck and glands came back with a vengeance. So I increased back to 12,5 which is working. So I think I'll stay here for 10 days and then maybe start reducing. I should say the head issues returned earlier on in the reduction at 25mg but not all the time like it is now.
When you say PMR can last between 2-6 years, is there a rough guideline for LVV?
She also has not arranged any regular blood tests and considering TCZ can affect the liver and this was he largest organ my LVV affected, I think I'm going to see if the GP will do it, as at least that way I will get to see the results online. I don't get to see anything via the hospital. Is there anything else I should be asking to check, other than the usual?
Thanks all you gurus out there!
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Sophiestree
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Neutrophils, Platelets, liver function, any signs of bacterial infection, TB is a big concern.I was asked this. Doctors should know and not expect the patient to know.
She is quite correct that this will only be for a year in one sense: in the UK TCZ is only approved for limited use of up to 1 year of weekly injections. That is NOT to say that the LVV will be in remission after a year - and that it won't relapse even if it was in drug-induced remission.
Your ESR and CRP are normal BECAUSE you are on TCZ and it is common knowledge that they cannot be used as a monitor of ongoing disease when TCZ is being use. The mechanism of TCZ prevents the IL-6 pathway of producing inflammation so the CRP does not increase. However, it has no direct effect on the underlying disease process which may continue unabated in some cases, still causing damage to tissues.
GCA, and so probably also LVV, has more than one mechanism of producing the inflammation and as a biologic TCZ is highly specific to only one of them, the IL-6 pathway. If any of your inflammation is due to the other processes, your symptoms can return.
In the clinical trials for use in GCA, TCZ only successfully got half of the patients to zero pred. Half required some pred, albeit a much reduced dose, often 8-10mg I think. That fits with what you are experiencing and suggests what I said in the previous paragraph applies.
This is an outlline of the monitoring required for TCZ in Buckinghamshore NHS - I imagine most places will be similar and also the same for the injections as well as the i.v.route. It's is the same drug.
details the manufacturers recommendations. In both cases the details of what should be monitored are quite comprehensive.
I have discussed this in the past with Prof Mackie and she was at a loss then, soon after approval of TCZ for GCA, to understand how doctors are not aware of the limitations of use of TCZ in some patients - they are clearly set out in the documentation for the trial results for TCZ and it suggests they have not read any of the documantation before electing to use it in patients. Both use of the markers for monitoring patients and the 50% success in getting patients off pred entirely are crucial knowledge I would have thought.
If it were me, I'd be asking for clarification of all those points - and a second opinion from someone experienced in the use of TCZ for GCA/LVV. Preferably someone who participated in the clinical trial if she gets uppity about your questioning her.
She also thinks that the LVV will last for a year... but I'm not sure if there is an average for that like PMR.
I need to have my wits about me with her as she always in a hurry and doesn't read my notes beforehand!
I'll write the list of bloods I need and see if the GP will do them first, although I'm fully expecting them to say it has to come from the consultant.
I am more relaxed about how long it might be from everyone here rather than the hospital, so at least I am prepared for a long haul, but would like to let her know that others have had LVV way longer than a year.
Would I know if the TCZ was affecting my liver in terms of symptoms? Or just from bloods.
Urgh another long wait on the phone today then as I'm into my 3rd month and no blood tests.
There are no figures for LVV, there are no figures for GCA either if it comes to that. TCZ is approved for one year - not because either GCA or LVV are known to be in remission after that time with its use but just a duration. Most other countries use it for longer.
It's an interesting question how long LVV lasts - its very existence was dismissed for years until the Giacta trial for GCA was done and the imaging for that uncovered the LVV going on alongside cranial GCA. WITHOUT TCZ it probably lasts far longer - but GCA can last more than a year even with TCZ and that is shown by the half who don't get off pred altogether because the other mechanisms are involved in their GCA.
The whole point of monthly blood tests is to spot developing damage - long before there is enough damage to make you ill. That is particularly the case with white cell counts where falling levels mean you are exposed to a much higher risk of infection and other things. Prevention is ALWAYS better than cure. The liver is very forgiving - IF you identify the damage in time at least.
Yes!!! Good advice. I do love writing to doctors! I need to spend a bit of time on it so I am really prepared. Sometimes I just really like not thinking about it all for at least half a day!
And below about 7mg there is also the adrenal function bit to bear in mind. It too can lead to aches and fatigue as well as the other things like gut problems and dizziness.
Oh the joys! I know I have to look out for the adrenal thing as well. That will be hilarious as I feel like someone turns a switch off sometimes as it is. I think it was because it was the very specific symptoms that I had originally that I thought I should up the dose. I did go with the head issues since reducing at the beginning of the year, until it because incapacitating.
I remember you saying about the 3 months. I think it has definitely improved my symptoms in terms of how I have managed to reduce from 30-12.5 in that time so am pretty happy with that. It was just reducing further as requested by the consultant and getting a lot of symptoms back. I will stick to the 12.5 for the week and restart tapering again but for 3 weeks and not the 2 she suggested. She is not on it anyway, so I am pretty confident she won't even realise what she said or where I should be at this point. You took a good old while to get your right medication. Thank goodness you persevered too. I know you have had a lot going on.I will request the blood tests from my gp for liver and kidney and hopefully they are all fine. Thanks for the reply
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