Two hour journey to Southend to see Prof. Das Gupta and he is applying for the 10K needed for me to have Tozicilimab on the NHS. Am pleased to have a way forward but now feel apprehensive and wish I had asked more questions. It seems it means injections for life. There are lots of side effects on the net but no idea of the percentage of people suffering them. I feel that had I had the right advice before from GP's , other consultants and the rheumatology nurse - about reducing steroids I might not have been ill for so long. I think the dead slow method is the way to go but I was pressed by everyone to reduce quickly - often being told to reduce 5 mg a week and if my bloods were up (CRP,ESR) - as they are most of the time I was told to put up my steroids - by 20 mg - not really necessary. i wish there was a protocol given to all medical people with a firm reduction plan. It all seems so hit and miss. As part of the presentation of my case I added up all the steroids taken in 15 months - 11,500 mg which seems shocking. Luckily I have kept a good record.
On the plus side I had a nice swim in the sea at Southend and fish and chips! Yum yum - know its carbs but hey ho ...
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christine2715
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Aah! I can smell the vinegar and paper right now. F&C by the sea; worth blowing every carb 'voucher' for.
It is so frustrating to hear about people's unnecessary suffering because of the relative ignorance about something that isn't as rare as all that. I'd say rather than a "firm reduction plan" it needs to be written in bold about tailoring the reduction to the patient with caution the first approach rather than jumping off the cliff and hoping there is sea at the bottom rather than rocks. I just don't think it helps the body heal when it is put through switches and turns with dosing. Sorry, rant over.
Anyway, I hope you get some consistency now, even if it wasn't how you wanted it .
I did amazing with tocilizumab for 9 months before having a reaction. It as I've said before, if I had it to do over again I would because I was able to reduce the prednisone I was taking by 80 percent in that time. When it worked it worked well and gave me the first normal labs I've had in over a decade. That being said I know a great many people who take it with no issues or issues that are tolerable.
I also feel the dead slow method is the way to go in tapering prednisone without the benefit of tocilizumab. One of my rheumatologists in the past had me reduce by 5 at a time and that left me sick and just pain miserable. I'm still tapering the prednisone now but went to the ds method because I want to get to the end of this in one piece without feeling sick and so far so good. I'm so happy for PMRPro's post about it.
A swim in the sea and fish and chips sound like heaven 😊
Unfortunately you can't have a firm pred reduction plan - because everyone is different. The BSR and other reduction suggestions are taken by many doctors to be firm plans - and they ignore the paragraph that appears in every single one that reduction plans should be tailored to the person.
I'm not sure it DOES mean injections for life. The idea is that the tocilizumab gets the GCA into remission quicker - and there are people who have had courses and got off it too. How long that lasts is another question though and the studies haven't got that far yet. Time will tell.
Looking forward to my fish and chips in Whitby in a few weeks - they even have gluten-free that is just as good as "real"...
Sorry - it'll have to be remote via the daughter. Just having to cancel the trip ... Booo - but we have plenty of t-bags to keep us going so it isn't the end of the world...
Can I ask you what is your steroid dose now, I was thinking of going to see Prof. Dasgupta as am struggling to reduce my steroids having been diagnosed with a GCA a year ago - problem is, like you, it will be more than a three hour journey to get there!
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