Have other TCZ users still experienced really bad chronic fatigue? I've been using TCZ for about 5 months and managed to get down to Pred 9mg (after 2nd bad flare-up with 6th nerve palsy of GCA) and have never got rid of the fatigue. When I was down to Pred 9mg I did begin to get really bad withdrawal symptoms so went back up to 10mg and these have now stopped.
I know TCZ doesn't work for everyone and I'm wondering if this fatigue is telling me something - such as it's not working for me? I do have some days when I feel quite good but then it's generally followed by a few days when I feel quite bad. Does the PMR not respond to TCZ? I thought it would flatten it!
If anyone's experienced the same please let me know your outcome
Many thanks!
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PuttyPenguin
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Hi .I was put on TCZ for GCA after never being able to get below 20mg of pred over a period of 9 months and a few relapses.
After 1 month of weekly injections I did start to suffer with bad fatigue which lasted for about 3 or 4 days after the injection.
After about 6 months the rheumatologist reduced the injection to one every 2 weeks for 3 months and then back to once a week which helped.
Up until a month ago I managed to get to 7.5 mg of pred but after stopping TCZ my inflammation markers started to rise so back up to 20mg of pred and a very slow taper down now .
Thanks for your reply Highland. I'm so sorry that it all went pear-shaped when you stopped TCZ and that is also a concern that I have for myself. However, nothing ventured nothing gained and I expect we all hope to be in the 60% (I think it is) who really benefit by TCZ. Wishing you well xx
Hi. Do you think it could be the GCA rather than the Tox? Or perhaps a bit of both. Severe fatigue can be a symptom of GCA. Have you any other symptoms eg. Night sweats, weight loss.
I tolerated Tox with no problems but we all react differently. Perhaps discuss with the team that prescribed it.
Thanks for getting back to me Kaf (hope you don't mind me shortening your name). Yes I do have night sweats and day sweats as this disease kicked-off menopause again. I did look up your bio as I wondered where you are in the world because you suggested that I talk with 'my team'. No chance! The hospital I'm with is the worse hospital I have ever had the misfortune to come across. I often have to pay to go privately if I have any problems.
Like pred, TCZ doesn't have any effect on the underlying autoimmune disorder that creates the inflammation by producing large amounts of and inflammatory substance called IL-6. That continues in the background, attacking the body in the same way and making you feel fatigued and a bit flu-ey if you are unlucky.
IL-6 has to attach to receptors on the surface of the cells in order to cause the inflammation. TCZ elbows its way in and occupies them instead of the IL-6 so there is no room for the IL-6 to get a foothold to be able to work. This reduces the inflammation created and you need less pred.
I have said in the past that all TCZ is, is a very expensive - albeit very effective - steroid sparer. It isn't a cure. There is no cure. The hope is that the mechanism that makes the excess IL-6 will fade away at some point - which is the case for 95% of patients anyway with or without TCZ. Some rheumies think that the constant disabling of the receptors will also have some effect and the immune system will get "bored" and wind down its action. But there is no proof of that.
In addition, GCA definitely and PMR probably have other mechanisms that create inflammation and TCZ does not have any effect on those, it is entirely specific to IL-6 effects. If your GCA/PMR involve these other mechanisms then you will still need some pred to manage them, 8-10mg seems to be a common dose for this. This is the case for about half of patients - it was clear from the clinical trials this was the case but there seem to be many doctors who are using TCZ who haven't read that documentation nor do they appreciate that TCZ doesn't work instantly - it takes some time to build up its effect even for the part of the inflammation that it affects.
Some people start to feel the effect of lowering the pred and their adrenal function lagging behind as early as about 10mg - and the fatigue may also be due to that. If it is adrenal insufficiency then the only way round it is to persist with tapering the dose, VERY slowly, and ramp down other activities until the adrenal function starts to return.
However, it is very difficult to distinguish between any of those 3 possible underlying causes of the fatigue - and you may be someone for whom TCZ causes fatigue. It isn't that it isn't working, it is because there are a lot of factors involved and TCZ isn't a perfect solution to the disease - it just reduces the pred dose to some extent providing IL-6 is involved and that is all a lot of doctors are interested in: less pred.
No. I'm talking about the biochemistry in your body that causes inflammation. The cytokine IL-6 pathway is one but there are at least 2 other pathways involving other bits of the immune system.
Madame Ambassador what would we do without you? You explain things so clearly and have put my mind at ease. Your knowledge far out-shines those on my 'clinical team'...I laugh at that term because they are quite useless at times so I ever now and then I go privately. You are worth your weight in gold and if I could buy you a large bottle of champagne I would...but you probably wouldn't be able to drink it because of the drugs...but the thought is there.
Many thanks for all that you do on this forum. Bless you x
Just one more thought to add. TCZ played havoc with my white cell count, more specifically, the neutrophils, which made me extremely tired. Has this been checked? My Rheumy put me on 2 weekly and eventually 3 weekly jabs becauseof this, and it continued to be effective in allowing me to taper, albeit, VERY slowly.I agree with your comments re PMRpro, she's a godsend.
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