I'm hoping to find someone else who had GCA, has stopped taking steroids and stopped Tocilizumab (Actemra), to know how their journey went from then on without treatment.
I was diagnosed with GCA over 3 years ago. I started with prednisone, then Tocilizumab injections plus prednisone, then the injections alone for nearly 2 years. From January until April 2023 I took the injections every 28 days. The CRP remained at zero during this time. I took my last injection on 13 April and agreed with the consultant to try without medication to see if the GCA had gone into remission. This decision followed positive reports from the cardiologist and ophthalmologist too. Also, I had no symptoms either clinical or biological. We agreed that I would monitor the CRP at least every month and more regularly if it were to rise. If symptoms were to reoccur, that indicated a relapse, then I would go back to taking the injections.
I was really disappointed to find on 1 June that the CRP was 9 mg/L and I was going to the UK so I did another test on 5 June and it was 11. After getting back from the UK on 30 June it was 20. On 6 July up to 22. I worked out that it was rising by about 0.5 mg/L per day. Fourteen days later on 20 July it was 30 so the rate was roughly the same. That particular blood test included other markers that were all in the normal range. However, by this time I was starting to get worried, not knowing the cause of the continual rise. Today, 8 days later it is 44 which seems quite a considerable jump to me so I'm more worried.
I saw the ophthalmologist the 3 days ago and all tests and the scan showed no damage and no change. I feel okay except for being very anxious. I have had a couple of dizzy spells, one on a morning 3 weeks ago getting out of bed which meant I stayed in bed for another 2 hours and another last night standing up after a meal which meant going straight to bed. Otherwise I feel fine and haven't had any of the classic symptoms. However, I don't really want it to reach that stage. Luckily I have an appointment with the GP on Monday morning.
I just wondered if anyone has any experience that compares with mine and/or any of the people more knowledgeable than I am about the subject can give an opinion on whether this is likely to be a flare in which case I have to return to the treatment. Thank you for listening.
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Frenchduck
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Unfortunately it sounds like it could be, the timescale would be in keeping with a reoccurrence/relapse - 3 - 6 months in enough time for the inflammation to build back up again - hence the rising CRP levels…. and 44 is high.
Is there anything else that could account for the increase other than stopping the TCZ?
Dizzy spells could be adrenals or blood pressure … but think you need to have an open mind - and for most people, with or with TCZ, GCA seems to last about 4 years in total.
If it is GCA you may find a relatively small dose of Pred is enough to get it under control - hope so… and please let us know how things go.
I'm afraid the rising trend to well above normal does suggest that continuing GCA is a possibility. I'm surprised you don't have symptoms though. None at all?
Since you are in France I imagine they will restart the tocilizumab - in the extended clinical trials they found that restarting TCZ did bring relapses under control well and quickly.
Yes, I thought I'd have more obvious symptoms too but not yet! I was hoping it might be a urine infection as I have frequented the loo more often than normal but I don't have a temperature and as it's hot I've been drinking more water. Thanks for your reply and I'm sure they'll restart the TCZ if it is a relapse. Bon weekend!
In addition to the sensible advice you’ve had, my dizzy spells turned out to be Paroxysmal Positional Vertigo that can be rectified by simple exercises. I tried to copy and paste the Mayo Clinic’s clear explanation of it but it didn’t work. You may want to consider this possibility.
I have had this in the past and it was rectified with the EPLEY manoeuvre. I must say I was hoping it wasn't a recurrence of the same thing as it was horrible and made me very sick at the time. I think it's more likely to be blood pressure as DorsetLady suggested and in my case maybe it was low. I have had lots of ear problems, including severe tinnitus, due to nerve damage so I'm deaf in one ear and I wear two hearing aids. I can't rule out the ears as the possible cause though. Thank you.
It could be worse because of the GCA but because the deafness started a long time (since I was 46) they say they can't tell if it was caused by the GCA. I think it was a definite factor as the tinnitus was much worse as well. I took along a document relating to damage to the 8th cranial nerve, caused by GCA and showed it to the ear specialist. He just glanced at it.
He did an MRI of the brain which showed that the ear mechanisms were fine but that there were vascular demyelinating lesions. Nobody seemed bothered about what caused it but they seemed pleased that there weren't any tumours.
Me too re the ear problems, not as severe as yours though. I had forgotten that the exercises were called the Epley manoeuvre. I haven’t been very dedicated about it and I thought the vomiting was to do with diverticulitis. Gosh I am a mess.
In the UK we are limited to 52 weeks' treatment with TCZ. During my time on it, I reached zero pred. As my Rheumatologist was anxious for me not to relapse, she started me on Methotrexate. However, it didn't seem to control the inflammation (GCA-LVV) and my CRP rose to 34, so after about 6 months, we stopped the MTX and I went back onto pred, as I couldn't have any more TCZ. I have been back on pred for 7 months and currently tapering to 3.5mg. I would go back on TCZ tomorrow if I could! It really suited me, so obviously was targetting the source of my inflammation.
Thanks for your feedback Rugger. I think it's such a shame that you couldn't have continued with TCZ when clearly it was working for you. You might be in remission now if it wasn't for that. I'm pleased you are down to a low dose of pred and wish you luck in achieving remission. That's what I'm dreaming for but it looks like I may have to wait a bit longer!
Dear Frenchduck; it might be a relapse but certainly other causes that can lead to an increase in CRP should also be ruled out. The slow increase might be a sign for low disease activity (and once inflammation has built up there is systemic self-reinforcement which might explain the jump later). In the follow up of the GCA Tocilizumab Trail (the one where 56% where symptom free after 52 weeks) 46% of GCA patients successfully treated with TCZ for 1 year experienced disease flare within the next 2 years (after Tocilizumab was stopped) - median time to flare was approx 27 weeks. And as PMRpro said above, a flare can be quickly controlled with Tocilizumab again. So no need to worry but your GP should take it seriously. Bonne soirée !
I didn’t stop, yet - I take it every 14 days now and will increase to 18 days or 3 weeks in September/October- all good at present; my rheumy just thinks that stopping slowly is better.
My doctor was very cautious about stopping too. I was the one who wanted to try without medication as I thought if I was okay taking TCZ every 4 weeks with no rise in CRP then it was worth trying to stop. Until that point she had resisted all my suggestions to stop. She gets my results automatically so I'm half expecting a call after the last result. Bonne soirée.
Good Day and thank you for posting as I have been experiencing similar, and about the same time line as you. Although still feeling symptoms of PMR (neck/shoulders) thought I was doing fine and after 3 monthly lab results, CPR on the rise, similar to yours. My rheumy not concerned at present and wants me to wait til the Fall to see how it settles in. HOWEVER, this week started with some dizziness as well! Yuk to that. Since I am blind in one eye, the dizziness makes me more concerned about walking easily. Thank you for sharing this as it is reassuring that it is not only me. I have no answers for you and just hoping that the vertigo ceases. Because I have an inner ear problem, wasn't sure which was causing this! Will keep in touch, hopefully, if things change. Thank you.
Hello jarn, sounds like you are in the US of A! Thanks for sharing your experience and yes, it would be good to keep in touch when we know what happens next. I hope your dizziness gets sorted and goes away. If anything new comes out of my GP visit on Monday, I'll let you know.
Thank you. Just did the Epley and hoping that things stabilize. Strangely, all the time I was on the Pred + TCZ, had no occurences!! Strange that. May need to be on TCZ come Fall. Good luck to you!!
Hmmm - only half of patients with GCA get entirely off pred with TCZ. There are at least 3 different underlying mechanisms for the inflammation in GCA. TCZ only works for one of them as biologics are extremely specific in their action. If YOUR GCA involves the other 2, then you continue to need some pred to manage that inflammation. It may be the pred you need for longer.
Clarifies. Thank you. If I start small doses of Pred (2.5mg), and just do so daily, will all the terrible effects of Pred return? I reacted rather badly with shaking etc. So was quite happy being off the pill and just TCZ. Sighhhhh
Only high. After the first 3 months and I got down lower, the shaking did stop. But in the meantime all the other effects of pred had made their mark. As far as thin skin Etc I am referring to.
If you get away with a low dose, the chances of adverse effects are lower, My skin has improved amazingly since I got down to 8mg. And I'm slowly losing weight.
Well, that is encouraging. And congratulations to you for being persistent. I lost weight when the GC A set in so that wasn't a problem, fortunately. Nice not to have one of the problems. Thank you for being valuable information.
I was doing well on TCZ and tapering off it. I got to the point where I thought I could be in remission so I wanted to stop it to see what happened. I could go back on it tomorrow and it sounds like I probably will unless there is another reason for the steady rise in the CRP. Not sure if it's a relapse or something else.
I get tested for serum calprotectin while on Tocilizumab - this is not affected by Interleukin pathway blockage (other then CRP) - calprotectin is at normal levels at 14 days so if that stays I will increase the interval- all the best
Hi DeepThought2, can you please tell me a little more about serum calprotectin? I am currently having TCZ 3.5 weekly, about to move to 4 weekly jabs. I have been off prednisolone for 24 weeks now, and all is going well. I have been injecting 3 weekly for a couple of years now, due to neutropenia, but have commenced the TCZ taper. My rheumatologist is keen for me to cease TCZ because I am not following the normal protocols here in Australia, where you can only have it for 52 weeks. I managed to get support from Roche and so I have been able to continue with TCZ for around 3 years now, having just had my 71st injection. At four weekly jabs, she wants me to stop. I am too scared, hence my question regarding calprotectin.
Dear LemonZest, serum calprotectin is a still somewhat experimental marker for local inflammation. It has been shown in a few studies to be able to track disease activity (in RA, different forms of vasculitis including GCA) under Tocilizumab. It is differently from CRP and other acute phase proteins not depending on the Interleukin-6 signaling pathway and thus not affected by Tocilizumab. I get it tested every half a year and it is done in the lab of the university hospital - but there are also commercial medical labs in Germany measuring it. My rheumy is convinced also from his own experience that this is a central marker for disease activity that helps to guide Tocilizumab tapering. I am sure that serum calprotectin can be measured in Australia - they measure it in Freiburg only once in two weeks in the lab - so storage and shipping should be no problem.
Oh thank you for that. It is ringing bells, it’s been mentioned on here before, but you have explained it clearly. It’s worth asking my Rheumatologist about it, though she will probably “poopoo” it, as she tends to do with any suggestions I make. All the best with your taper.
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