I have been diagnosed with GCA/LVV in February of this year. My main symptoms were fever and fatigue and I had CRP values of up to 80 and an ESR of 100. I am living in Germany and here it is a standard scheme to start with pred (40 mg in my case) and Actemra (Tocilizumab) weekly injections.
I feel that I am very lucky with the course of my disease - please consider that every patient is different - but I think it is also good to read positive outcomes in this forum. I am off prednisolone since mid of July (i.e., after 5 months) and continue with weekly Actemra injections. I have fortunately no side effects from Actemra (neither subjective nor indicated by blood parameters). Since approx. beginning of June I am feeling completely normal again (I had the typical pred side effects, which, however, ceased with lowering the dose). I am working full time, which is often 9-10 h a day - but the good thing is that I am pretty flexible. My exercise level is pre-disease (2500 km road and mountain bike cycling since May) and so is my physical strength (Garmin has a whole set of fitness parameters and they are comparable again to the years before). My blood is regularly checked and all parameters are normal (to be expected with CRP and ESR due to the mode of operation of Actemra - but als inflammation markers not directly affected by TCZ such as interleukin-6 or calprotectin are low). The plan of my rheumy is to continue weekly injections of TCZ until the end of the year and then potentially increasing the time to two weeks, check again and if everything works well to stop in summer next year. I can only cross fingers that it continuous so positively.
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DeepThought2
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I share your diagnosis and this is an encouraging story for me. Did you experience any difficulty in tapering off Pred at the lower doses? Were you aware of any Adrenaline issues? Did the fatigue just gradually lift ? You have indeed had a good experience. I am finding it difficult to know how to proceed. I am on weekly Tocilizumab injections but I seem to feel worse when I lower my Pred dose to below 10 mgs. Did you plough through Pred withdrawal or did you not experience many symptoms? I would be grateful if you find time to share your experience further.
Dear SheffieldJane. I am in the fortunate situation that I had no difficulties while tapering pred. Neither adrenal issues (might be due to the short time on pred) nor any other withdrawal symptoms. The pred side effects where mostly gone when I was below 6 mg. Fatigue as one of the main symptoms of my disease: that stopped quite fast after a few weeks of pred. Between 40 and 8 mg I was often very tired in the evenings (but that might have been related to not so good sleep) - but no real fatigue due to adrenal issues. What are your symptoms when going below 10? Is it fatigue? How long have you been on pred?
Thank you for the extra detail. When I try to get below 10 mgs ( I am struggling at 8 mgs currently) I experience stronger flu type symptoms, general malaise and exhaustion, breathlessness and headaches. I possibly differ from you in that I had PMR for 4 years prior to my GCA/LVV diagnosis. I was on 3 mgs of Pred when the LVV was discovered in my armpit. This was over a year ago. I was put on 40 mgs of Pred then weekly Tocilizumab injections. Getting down to 10 mgs was swift and easy. I am keen to get off Pred having developed hypertension, borderline high blood sugar and cataracts. Perhaps coming from a position of good general health and stamina has helped your progress. I was a pretty stressed out individual.
I am exactly like you SheffieldJane. I am on my third attempt to reduce from 12.5 slowly and every time I get to 10 or below some symptoms return with a vengeance after a week or so.I have this time gone even slower by half mg increments and next week will be my full week at 10mg. I am going to stay there for a couple of weeks and see how things are and then only attempt 9.5 on a slow taper after that. I am really hoping that it will be better. My consultant by her reckoning (although I haven't heard from them in months) would assume I am on about 6 by now. Bite me. The fatigue is almost time predictable. I feel like someone has switched the light off and it is usually about 4.00pm, sometimes 3.30pm.... by the evening it is fine. I usually try and get up and do something at that point, as unlike you, if I nap I feel utterly dreadful for the rest of the day and just spend it waiting to go to bed.
Everyone is so different but this is a great story to read all the same.
You did make me laugh with “bite me” thanks, it’s getting rare. 😂Good luck with your baby steps. I sleep for exactly 90 minutes in the afternoon. I do sleep at night with some wakeful periods, it does work for me. I couldn’t resist a nap - I would be desperate.
If it worked I would absolutely nap, but it just makes me feel rubbish so I try and work through it, by getting up and walking the dog for 20 minutes or so, something, walk to the supermarket.... If I ever do nap, like the other day when I had to get up at silly o'clock for the long awaited MRI on my hip which was requested on 6th June, just picked up the car keys to be rung to say the imaging machine wasn't working... duh, to now it's 23rd August.... at 7.45 am when I need to allow over an hour, I would put an alarm on my phone and not sleep for more than 20 minutes. Guarantee I will be napping the day of that MRI for sure.
It is very encouraging to read your post. In the UK, we are only prescribed Tocilizumab if our GCA / LVV is hard to manage and relapses over time. Pred alone is the norm for most people.
It would seem that using TCZ from the start has been of great benefit to you and that is wonderful.
I recently consulted with Dr. Avril, Chairman of rheumatology at Mayo Clinic, Jacksonville FL, USA. I was diagnosed with GCA by arterial biopsy in May and was started on 60mg of prednisone. At the time of my diagnosis I had been tapered to 50mg. He recommended I go on tocilizumab immediately and stated that “the new guidelines were coming out” and that TCZ would be started from the beginning of treatment and would be the “standard of care.” Hopefully, more people will benefit from this. I have to take the infusions because the injection cost is prohibitive for those on Medicare drug plans here in the states. Medicare covers the infusions at the hospital when approved. For those of you under national health coverage, this should make a difference when the guidelines are changed.
That post from Deepthought2 is very encouraging and I am so pleased to read it.
10 of us were involved with Roche, prior to the trial starting., so I have a particular interest in Actemra.
Rugger and Sheffield Jane and others I don't want to be a party pooper but:
Deepthought2 is a 55 year old male. Lives in Germany and was started on pred and Actemra immediately.
Age, gender, a fast diagnosis and location has a part to play. In the UK you have to be referred when complications occur.
This reminded me that when one of the our female members, diagnosed with GCA etc aged 60, met the criteria to take part in the trial of TCZ as it was known then. Within 6 months was on 5mg of pred and TCZ, then in remission around 14 months later.
The cost to the NHS for 1 year of TCZ was around £19,000 per patient per year as far as I remember - this figure was quoted when the announcement was made on here that TCZ had been approved by NICE.
I fully agree jinasc - that‘s what I meant in my original post with „every patient is different“. I am also pretty sure that an early start with TCZ is helpful (at least when the diseases is clearly interleukin-6 mediated (I had increased IL-6 levels).
Your original post gives us hope that although we still do not know the cause, it looks like we might be on track with IL-6, but a cure is not yet in sight.
The lady I referred to is still in remission 5 years later. I, on pred the whole way through, remission after 5 years and still in remission now into 9th year.
But I really do think that starting TCZ immediately at diagnosis - as was also done in the clinical trials - may well make a great difference.
However, it is also possible that you and SheffieldJane represent the two cohorts fond in the study - half got off pred entirely relatively easily, half got stuck at a much lower dose of pred but I seem to remember it was often 8-10mg.
There are 3 things that can cause the inflammation in GCA - only one responds to TCZ/Actemra, If you have the others as well - you still need some pred.
Not entirely clear - and there may be others but this mentions T helper cells in 2 different lineages. As I understand it, that would require 3 different specific biologics and you can't use more than one at a time.
God, the immune system is really complex. I was discussing with a doctor on another forum who said it was challenging as a student medic 40 odd years ago, but today the syllabus has grown enormously. No wonder rheumatology is a separate and complex discipline. I stand in awe.
Quite -when I was at medical school doing physiology it was exciting new stuff and mind-boggling. Now it just makes my head hurt! But then, I'm over 40 years older - nearly 50 when I stop to think!!!!
hopeful post . Not on TCZ but it's early doors for me. PMR and GCA just showing good results for inflammation control after 2 months on 40mg. I'm a fit cyclist but not like you able to maintain cycling as it floored me. 70 not 55 so will make a difference. Have lost muscle but will build back when able.
I think it will be not too difficult to gain muscle mass again when you can slowly start to excise again - I also lost a lot of muscles but it is always easier to gain strength again when you had a good fitness level before the disease.
Brilliant news! Thank you very much for posting this - I’m awaiting arrival of my first doses of Tocilimuzab any day now, and your experience makes me feel more positive towards it.
( GCA diagnosed by ultrasound 09/20, 60mg Pred tapered to 5 by 06/21, big relapse, ( hardly surprising given speed of taper) temporal biopsy 07/21 showed active giant cells and inflammation, back up to 40mg and TCZ prescribed)
I’m actually feeling good with higher dose Pred, I’m a fairly active walker and glad to be back out, but I’m hating the side effects - moony face, weight gain and redistribution, irritability, brain fog etc….So this is great news! Long may it continue for you!
You’re right- the wrinkle-free zone is a good compensation! And the feeling of having energy - once you learn to spend it thriftily or you’ll pay!- is great too, and a reminder of what life felt like pre GCA /PMR. Low carb diet is working, just over a stone and a half gone since January- but rate of loss has slowed since increase in Pred dose. Almost DSNS! - I’m probably cheating on my calorie counting or letting portions get a tiny bit bigger..
I don't know whether this will help - in the FAQ's there is the Newcastle Diet. Really relates to Type 1 and 2 Diabetes............but we can slip into Type 1 once on pred. Luckily it does not happen too often.
Congratulations DT2, early intervention with Tocilizumab seems key. In my case it was several years after the GCA/LVV diagnosis in 2012 before Tocilizumab was prescribed and it was stopped last November after one year. Since when I am now teetering between 6 and 5.5 mg Prednisolone. Your story was very encouraging. Also, I think I read on this excellent forum that someone received emergency treatment with Tocilizumab for threatened vision loss which saved their eyesight. Personally I regard it as a miracle drug because I had good results and no apparent side effects with TCZ. Best wishes for your future.
Thanks a lot - yes I am really happy that TCZ works so well - it really looks like I am one if the 50-60% that responded well to Actemra in clinical trials. I had definitely increased Interleukin-6 levels indicating that TCZ might be the appropriate drug and the signs of inflammation of the arteries (PET-CT, MRI) where still low - so I think it is a good working hypothesis that early medication with TCZ might be beneficial.
My story is very similar to yours. I was diagnosed with GCA and PMR just as I turned 50. I was put on 60mg of pred and two weeks later weekly Actemra injections. I came off pred five and a half months later and I’m now on my 14th month of Actemra, I inject every 9 days.I’ve had relatively few problems just the usual side effects from pred. I don’t seem to have any issues with Actemra. I did go back to weekly after I had my second vaccine as I had one of those headaches that wouldn’t go away. I’m now back to exercising trying to lose the pred weight and I just got a new bob hair cut, to get rid off all the steroid damaged thin hair! I hope to carry on weaning off Actemra and hope I don’t have a set back if we need a third vaccination, but so far so good!
two months into pred. not even started tapering yet and all this talk about getting off whatever med we have to take to handle it is scary. I don't have a choice but it makes me remember growing up. I had a friend IQ 180 and tried every drug known to man. Died at 28...what a waste of such potential. Another a talented artist fell out of first floor window when 15 ,thought he could fly, high on something....all my life I have resisted taking anything I didn't need because I never wanted the drug to be in control and now because I will be a curled up ball of pain if I don't take this it's in control of me. I'm sad, hurt and grateful. I want my life back and don't know if it will be possible. PMRpro says i am grieving and she is right. I didn't plan for this and have tried to do right by my body. I'm sure we've all been there so I am staying positive and hoping that I haven't run out of luck yet. Not on TCZ but your story helps DT2
Dear cycli, for me it was also hard to be forced to take medication (s.th. I was not used to before - except short term antibiotics or so). I can fully understand you. It is good that you are staying positive and it‘s always important to look also at small progress.
see my profile Dad2Cue....550miles over the dolomites in 6 days at 68....I know your pain. Getting back is a dream I will keep but I need to adjust my brain now to deal with what has happened to me. It is a new world for now and maybe the future. There is hope and sound advice here. We are all on a journey not of our asking and how we travel varies as much as we all differ in how we all react to it. Nothing is written in stone. Choices lie before us , some wise some foolish but while I dream I hope and that is a powerful friend. I trusted my body and it failed maybe because I drove it too far and now I am listening. If I pay attention it may reward me and allow me to recover.
You've been on a mammoth journey of pain and discovery Dad2Cue. Dwarfs mine. Either genetic or possibly viral for PE. They have no idea. I have been fighting symptoms of PMR and GCA for years without realising what it was until it floored me almost literally. Even then diag. took time. I'm going for stress or viral as the final trigger which brought it to a head. Was cycling in Spain when pandemic was at worst and caught last flight back before shutdown so may have had it but no obvious signs. I'm on this journey now and going to try for a good outcome. I want to see those mountains again under my own power but maybe taking it a bit easier next time 😀.
Hi I’m so pleased for you, I feel so much of what I have experienced has been because of unsuitable medication and time lapses , when I met the criteria for tocilizumab from the start ( other than what nice felt ) Hopefully you can now just get on with your life, with good health and appreciation of so much that we previously have taken for granted. All the best
haha...I like your style. Pain is relative and cyclists are well known for being a bit strange that way. Cycling up a continuous climb of 7-10% for 11 miles takes training for 6 months so that was why I ended up in beautiful hilly Durham/North Yorkshire. Don't worry about euphoria, as there are some kind knowledgeable people here who put me straight. I'm experimenting with a window of inflammation control to rebuild and use my muscles better before I hopefully go on reduction, but I have to be careful not to push it too far. I'm not religious but respect belief. It's a powerful tool.
Hello Dad2Cue, yes I was overstating it a bit with 'miracle'! But after years of an elevated CRP it was very heartening that TCZ got it down to almost zero. However soon after I finished, the CRP shot up to 28 and Prednisolone had to be increased from 2.5 to 10mg and gradually reduced. I am glad to hear you have no restrictions with TCZ. Thanks very much for your remarks, I'll keep ploughing on.
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