For the second time my rheumatologist has weaned me off prednisone using Actemra. The first time I got to 1mg but stopped it because I had experienced constant cystitis for the 6 months I had been injecting it. That was in May 2021. She put me back on it last November as I had a VSG (inflammation marker blood test; I live in Spain) of 82. I had gone up and down between 2 and 6 with very little pain so not sure where the high number had come from. I stopped taking pred on 7th January and since then have been in constant pain: all the usual places, neck, shoulders, upper arms, hips, groin, thighs and now hands! I don’t know when I will see the rheumatologist next but am having usual blood tests this week at our local health centre so hopefully quite soon after she sees them. Usually I have to wait until I get a date for an appointment and then go to medical centre for the blood tests. I’m desperate to start pred again and aim to as soon as I have had the tests. I have waited because I want her to see the results whilst just on the Actemra. Sorry for the long ramble but , My question is; what dose should I start back on? I would love it to be below 7.5! Surely pred below the magic number is less harmful in the long and short term than Tocilizumab?
Advice please : For the second time my... - PMRGCAuk
Advice please
Nobody can advise you properly on here. Your case needs the urgent assistance of a qualified Rheumatologist. This is where I would direct my energies. It sounds like you are in a full flare of PMR symptoms. Did your relationship with your Rheumatologist break down? I also experienced UTI’s and other infections on Actemra but you forget the pain of full blown PMR/ GCA and possibly LVV symptoms. It is a very difficult position to be in and the treatment seems imperfect, but you need to attend to these symptoms as a matter of urgency. Please let us know what happens. Wishing you well!
Thank you so much for your reply. My relationship with my rheumatologist is actually very good. She was disappointed in me I think when I stopped the Actemra last May but I haven’t had any GCA symptoms since I blasted it with pred before I had even had my first appointment with her. I agreed to go back on Actemra but am not surprised that it’s not doing anything for me without the pred. If I don’t hear from the hospital after the blood tests I will try to contact her. Thanks again. You are all so very kind and I will let you know how I get on.
Ahh! So you are on Actemra alone and experiencing these flare symptoms. Did they start when you tapered off your final 1 mg of Pred.?
Yes, almost immediately
Not really something we can help with - not least because I don't think there is anyone on the forum yet who has stopped Actemra and subsequently flared. Were you put on Actemra for PMR or for GCA? I assume from your reply above it was for GCA. Is your rheumy perhaps not aware that only half of GCA patients in the clinical trials were able to get off pred entirely. There are at least 3 mechanisms that cause the inflammation in GCA and only one of them is controlled by Actemra. If either or both of the other two are involved in YOUR GCA, then you will need some pred to manage the inflammation they create as well as possibly the Actemra ongoing.
In the clinical trials patients who didn't get off pred seemed to get stuck at about 8mg but like everything to do with GCA/PMR everyone is a bit different. It is impossible to forecast what dose you will need but you will need enough to manage the inflammation acutely and then you will taper the dose again to find the lowest effective dose for the longer term, It shouldn't be high though.
If you were having urinary tract infections that alone would put the inflammation marker up (VSG is what we all refer to as ESR, erythrocyte sedimentation rate).
But you do need to see her and discuss it with her - reminding her that Actemra only works entirely for 50% of patients.
Total reliance on Actemra seems to be where I am being directed too or being switched to Methotrexate. Devil or the deep blue sea.
Does Sarah think she can get long term TCZ for you then? It is used long term in RA - I think it is disgusting it isn't used the same for GCA.
I don’t really know. I have infections needing antibiotics and an interruption of Actemra, or painful flares when I try to taper from 7mgs. I think Methotrexate is all she has up her sleeve.
Any problem with being on low dose pred alone now?
I feel really flu-like in the evenings when my 7 mgs Pred dose is hours away. It’s hard to tell apart from that I have lower abdominal pains with varying degrees of severity, bowel and bladder issues which may or may not be related. I never had very severe GCA/LVV symptoms just constitutionally unwell really. Trying to taper produces more defined PMR pain and stiffness causing the old mobility issues like getting into cars, baths etc.
Oh dear, so sorry to hear you feel generally unwell. Hope things look up with the return of warmer, brighter weather.
Thank you so much for your prompt and full reply. I do appreciate what both you and SJ say. I actually stopped pred a couple of weeks after her tapering plan suggested as it was Christmas and we were in the UK for my husband’s work and of course visiting relatives and friends. I’m surprised that she hasn’t called me in knowing that I am only on Actemra now for over 2 months. My OH keeps encouraging me to just restart pred but I got it into my head that I wanted her to see what the readings were .Thanks again
I think you do have proof you need a bit of pred too - but I don't think it would be much, you seem to have done OK below 6mg before. And it MAY be the fact you stopped pred before your adrenal function was up and running - it too can lead to PMR-type symptoms.
I think what I really want to know is why, if I was ok on 6mg and less WITHOUT TCZ do I need to take it at all? My GCA symptoms were quite mild but definitely there and had almost gone by the time I saw the rheumatologist and ophthalmologist having been on 40 mgs for a week before my first rheumatology appointment. She ordered an urgent PET scan but that took 3 months to come and was clear, and a biopsy would have been a waste of time.
The only way you can tell is by stopping and seeing what happens. The hope with TCZ is that the IL-6 part of the inflammation burns out and goes into remission so you can stop the TCZ for some time. They don't know how long than can or does last, the studies are still in relatively early stages. What they do know is that some patients are able to get off pred altogether and then also stop the TCZ without an immediate return of symptoms and that if they symptoms do return usually they are controlled very quickly and effectively by restarting the TCZ.
I imagine most doctors who are using it without having been part of the clinical studies, which is most of them, are only viewing TCZ as a way to get their patient off pred altogether because that is what they all seem so terrified of.
Perhaps your GP would authorise blood tests, you have a valid reason, if it’s quicker. They are not infallible though. Nobody has ever connected my proneness to cystitis symptoms with Actemra or the abdominal pain I seem stuck with plus bowel symptoms - possibly worse since being on an Actemra break.PMRPro makes great observations as ever.
You are both amazing. Thank you 🙏. I have actually never seen a GP . My PMR started on the first day of lockdown. We were still on E111’s and although I pleaded with them to do a blood test, they refused, even when our residency came through and therefore received health cards. I got a private test at huge cost; kept me in private hospital, did scans and every test going and eventually got my prescription for pred. I knew exactly what I had and hours after my first 32 mg dose felt I could do a marathon! The pharmacist in our village whom we had known for some years kept renewing my prescription but shouldn’t have and 4 months in I eventually went to A&E and got a rheumy appointment for 3 months later. She has since done all the referring; ophthalmology, urology etc. I have no relationship with the local health centre, only to get the blood tests which the rheumy gives me a petition for each time I see her. Usually I wait until the hospital rings with an appointment and then I go and get the tests done which they send to the hospital. I’ve no idea if this is normal as I was never ill until we retired here!
What an experience to have at the beginning of your lovely retirement! Let’s hope that is all your bad luck done with. It sounds like you do get pretty comprehensive care. Maybe an Endocrinologist would be a good addition ? It is pretty neglectful and dangerous to leave you for two months on Actemra alone. It will do nothing to help your Adrenal System to recover. She should have this at the forefront of her mind. Let us know how you get on. I can feel your determination from here.
Thank you again for your wise advice. Reading other posts I have been wondering about an Endocrinologist. I’ll get it down in writing (in Spanish)! for my next appointment. I am aware that the adrenals can take a long time to recover. And I will let you know how I get on😻
" It will do nothing to help your Adrenal System to recover"
Well it will - the only way to get adrenal function to return to normal is very low or no pred. Nothing else will "help" the return, no supplements. Only more pred removes the symptims - and slows the return.
That’s kind of what I meant. A very slow taper of tiny decrements of Pred will help, (or Hydrocortisone,) and will enable sufficient recovery for the Adrenal system to stand alone. A sudden withdrawal of all sources of cortisol could be catastrophic - worst case scenario.
Again, yours and PMRpro’s conversation has taught me even more. “A sudden withdrawal of cortisol “ makes me think I will restart prednisone now and not wait until I see my rheumy. I had my blood tests this morning so they will hopefully show that TCZ alone is not for me!
Thanks both of you.
My Rheumatologist encourages me to make these decisions for myself. It can feel lonely at times though. I would probably take 5 mgs in your shoes, but we are all unique in our response to these diseases and cannot make doctor level decisions for each other.
Thank you 😊. I am going to take your advice right now whilst appreciating that you don’t like giving specific medical advice. However, I do feel that you and others on this wonderful forum are more capable of helping us than many doctors! I will let you know you know how I get on!
My question is WHY is she substituting one drug for another? Makes no sense to me. I get to choose myself based on my history and how I know how I feel. Basically if I am comfortable at the level I am at I am ok to reduce my 10% a month each month. If that month is uncomfortable, I go back up. I don't introduce a different drug to help me, that makes no sense logically. Maybe a 2nd opinion?
It is the sheer medical conviction that Steroids cause the most damaging side effects and to get to low doses and preferably off them completely quickly, is the ultimate aim in all treatment programmes. To me all the potential side effects of the drugs on offer are pretty worrying.
If you get off of them too quickly your adrenals will go into shock. Any quicker than a 10% reduction can cause prednisone withdrawal. At my age, 65, my doctor is comfortable with me staying at 5 mg or less for the rest of my life
Quite, and it’s up to the patient to choose which side effects they can live with and which they can’t. In the short term term of course. Goodness knows what long term damage awaits us. For me, a bit of hair loss, bruising and on occasion unstoppable bleeding, was preferable to completely overwhelming UTI’s for 6 months. Oh and I lost weight on pred; about a stone. A few pounds have crept on since stopping it!
Thank you 🙏. When I couldn’t see a doctor at all at the beginning I took advice from 2 doctors in the UK; one a friend and the other a relative, and they both said exactly what you have said and that is how I was dealing with it until I saw the rheumatologist 6 months in. Also, my mum had PMR and a very close friend who by huge coincidence had been staying with us the week before it hit me; literally! So I was in no doubt what was wrong and of course the first miracle dose of pred confirmed it. Thank you 🙏
Tocilizumab/Actemra is the new approach to managing GCA, the first option in 50 years - new patients would be started on high dose pred for safety as it is known to work effectively to reduce the risk of visual loss with TCZ started at the same time. It combats the inflammation and it is possible to reduce the pred dose very quickly as a result. They don't use it on its own as they don't have studies that show it works as well as pred for the visual loss aspect and it would be very difficult to get ethical permission to not give patients with known GCA high dose pred.It is available in most countries for GCA, even the UK has limited use of it. I think anyone would say 6-12 months of pred at GCA doses is preferable to years and years.
I have found the conversation between you, Mahler2, and SJ really fascinating and informative...I debated whether to jump in after so many days, but that post of yours above that I'm responding to, 'hit the bullseye with me,' Pro! My journey with pred and TCZ is all about saving the sight in my right eye. So, for me and all the specialists, it is my eye driving the engine...until I get cellulitis, for example...off the TCZ...then the markers go sky-high....then the pred...then a little more vision lost...back on TCZ.
I've been on this ride now for a few years but WOW, am I lucky the TCZ option was available, 80 mg a day for months of pred didn't help. The doctors were reluctant to use TCZ because I'd had stomach bleeds and issues with the large intestine. It is all a benefit vs cost evaluation. If I pay a tad with one discomfort in exchange, so be it. I understand it is all so personal to each of us...we make our own choices in the end. You three are like getting an IV of positivity~!!! You gals rock!!
Now I take TCZ weekly but am having a successful taper for the first time in over 2 years!! I'm only taking 10 mg each day, this is down from 40 just 7 months ago. Today I went for a walk and I saw flowers blooming in neighbors yards, it was great.
However things go, I'm ready. I'm such a good candidate for a flare but even with that, I've no complaints. I never met such a group of brave, wise and kind women in my life. Hip-hip-hooray for the forum. I'm 81, I could be a young mother in Ukraine trying to protect her children....I'm damned lucky. 💕💕💕
Didn't mean to go on so but you all inspire me and make me smile~! We don't get to chose but we do chose how to deal with what life sends our way. xo
Hi Grammy, your post has just started my day off in such a beautiful, positive way. Usually, at breakfast I read the news online 😿😾but today opened the emails and I’m so glad I did. If I was ever moaning about something my gran would always say “count your blessings”. That is obviously your outlook on life. Thank you so much for reminding me and good luck with your onward journey 😻
That’s all very interesting and a useful story to help me understand more about the interplay between prednisone and Tocilizumab. In my case I was managing on between 6 and 2mgs of prednisone but one high ESR reading caused my rheumatologist to knee jerk me back onto TCZ. It all goes to show that no 2 people are going to react in the same way to medication, except I suppose, the immediate improvement of PMR with a corticosteroid .
I do have raised blood pressure and borderline type 2 diabetes, weight gain ( lucky you, mine was dropping off with PMR). I enjoyed a period of curls which I enjoyed. I felt pretty well though - on the right dose.
O dear, im sorry, a mixture of negative and positive side effects in that order. I forgot to say I have mild excema withTCZ. Not too bad but another sleep disturber!
A proneness to infection is the main side effect that I have noticed, with Tocilizumab. Mild but annoying, such as nasal, eyes and UTI. I have Psoriasis on my feet but this has remained stable. All this is tolerable, with drops and sprays and Mannose-D.
Yes, as well as 6 months of antibiotic resistant UTI, which was not mild, and a bit of excema, I have had persistent mild cold symptoms; drippy nose and post nasal gunge and a cold sore which also won’t budge. Hey ho!
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