TCZ 7 months in, and tapering Pred,- update.

[Jonimoroni]

Hello friends !

Long post, hope it’s of use to someone…!

Since early April I’d been intending to write an update on my progress at my 6-months-on -TCZ- point . There had been a request on the forum here for info at that time, and I’d reached zero Pred point, on my rheumatologists scarily fast taper, a week or so earlier. However, before the ink was decently dry on my glowing report I had a quick fall- from-grace ( “I was pushed, yer honour!”) into the usual Flare-up punishment-room.

Heres a brief catch-up, profile gives more details up to this point.

Diagnosis GCA , Oct 2020.- see profile for management and treatment up to TCZ being offered -

Started TCZ Nov 2021, on 20 mg Pred., (having reduced from 40. Had previously got to 8 ( from 60 ) and flared, so qualified for TCZ after a temporal biopsy in July’21)

Rheumatologist’s Taper.:- After 3 weeks at 20mg and with TCZ, tapered by 1mg weekly to 15mg, then a 5mg drop to 10 mg, for 2 weeks, then 1 mg drop weekly to zero. Bloods tested and judged to be within ‘normal range’.

During the last 8 weeks of the taper to zero I had increasing - but not unbearable - pain and stiffness in my neck and shoulders. I took my ‘final’ ( Spoiler - ha ha!) 1mg Pred on 1st April. Fools rush in….,,

Within 2weeks of zero-Pred I was becoming severely hampered by stiffness and pain in shoulders, arms and intense pain in my pelvis. I could barely rise from a chair, and when I did it took minutes to ‘straighten up and get going’. Getting out of bed was getting complicated, and as for getting out of a bath, or up from a kneeling position - no way. I could still walk once I got going - I normally walk at least 5 km a day - but I had to go slowly, and hills and stairs were out. The worst pain was in my groin, really severe, radiating down both thighs to knees.( I’m assuming the femoral artery is affected? ) Neither paracetamol or Ibuprofen made any noticeable difference.

So, I wrote to the rheumatologist describing this, suggesting I return to taking Pred at 5mg ( where I last felt ok ) and do a much slower taper.

His reply was a daily prescription for 1000 mg Naproxen, Lansopraz ole 15 mg, (a proton-pump inhibitor) , and 2 huge boxes of 500 mg Paracetamol to take ‘as necessary’ (Despite my writing that they had no effect!)

And a later reply that he was sorry I was experiencing ‘a few aches ‘!!!!

A Few aches!!! I was spitting feathers on reading that!Doesn’t pay to be stoic and politely underplay, does it!!

But I did try the Naproxen. Negligible effect on the stiffness and pain, perhaps just about took a little edge off, for I tried it out for 3 weeks - then I broke.

I had some pred, and, dear reader, I took ‘em.!

10mg, daily, x 3 days so far - and oh the relief ! Will now reduce to 5 mg in a week or so, and if ok, will taper very very slowly. I asked for a repeat Pred prescription online from GP surgery and it was fulfilled yesterday, so I have the means to do this.

Still have 5 months TCZ to go.

I’m thinking that the TCZ is helping (possibly a lot) with the GCA, but that I now have PMR, or some other LVV condition that requires the Pred - obviously, finding the lowest possible ‘sweet-spot’ is my aim.

Has anyone else had experience with Naproxen?

It seems bonkers to me that this whole cocktail of Naproxen, Lansoprazole and paracetamol is preferable -to the rheumy - to a sub-5mg dose of Pred.

But there we are.

Best wishes to all, I read here daily, and I’m thankful for ye! x

[SheffieldJane]

Thank you. This is a useful post. Personally, I agree with your assessment.

[Rugger]

Did you see Sharitone's post yesterday - I replied to that? There are similarities.

healthunlocked.com/pmrgcauk...

[PMRpro Ambassador]

"It seems bonkers to me that this whole cocktail of Naproxen, Lansoprazole and paracetamol is preferable to the rheumy to a sub-5mg dose of Pred."

Quite! On another forum someone has reported on a study that found pred isn't all bad:

"... a big study came out of Sweden on comparing RA patients on long term 5 mg prednisone (with other immunosuppressants in some) and those without. Damage was significantly less in those on prednisone and side effects negligible. This goes against current recommendations and apparently will be a big shift. The article said many rheumatologists ignored the recommendations and kept their patients on low dose prednisone anyway."

Why on earth object to a low dose of pred that replaces 3 different drugs that all have potentially risky side effects? One friend was persuaded it wasn't PMR any more but OA and she should take paracetamol. It did nothing useful and after a few weeks she happened to have a routine blood test that resulted in a panicked GP and emergency appointment for a liver scan. Nothing to be found - liver enzymes sky-high purely because of paracetamol.

[Jonimoroni in reply to PMRpro]

I must seek and find that study- I may have to justify myself to the medics and it would be just the thing. Hope the friend is now able to manage pain- I too find paracetamol does little for this vascular pain but does make me feel a bit jittery or wrongly-wired, or a nervy tummy feeling. Maybe that’s a liver thing. Any experience with this Naproxen? I can’t find many references to it here. Wondering if it’s maybe considered better in some way ( than Pred) in conjunction with TCZ. But ineffective in my case anyway.

[PMRpro Ambassador in reply to Jonimoroni]

It is claimed that as an NSAID it is less hard on the gut than others. What they forget is less isn't the same as not! The 2015 Recommendations for PMR management expressly discourage the use of NSAIDs - they don't work in PMR itself. We certainly discourage people whose doctors offer it.

What was the hurry with a 6 month taper while on TCZ? It's pretty good - but not that perfect. And however good it might be for GCA/PMR - it does nothing to encourage the return of adrenal function except keeping the pred low - it still takes time. And some adrenal insufficiency symptoms are very like PMR

[Jonimoroni in reply to PMRpro]

The Gods alone knows why the hurry - 1st rule of the secret society of rheumatologists I suspect.

[PMRpro Ambassador]

And I forgot to point out that Actemra only works for half of GCA patients - there are 3 mechanisms for GCA inflammation and Actemra only works for one of them. The other two, if present, still require some pred. And no-one knows the underlying mechanisms for PMR inflammation, it may not be only IL-6

[Jonimoroni in reply to PMRpro]

Yep. Actemra (TCZ) definitely helped me reduce the Pred. I went easily to about 8 mg, but less good after that. After the the 5mg mark I was recording stiffness in my upper body - but getting below 5 mg helped with some of the side/effects, like moon face, rosacea, weight gain & distribution . So, after 7 months I still need the Pred to feel and function .

[Grammy80]

Wow! Was the rheumy's ONLY goal to get to zero? What about how you were doing!! I'm a GCAer on Actemra and tapering. As long as you take Actemra, blood results are always in normal range....we must go by symptoms. I'd be sicker than a dog on all those NSAIDS, you have too much to lose. I was diagnosed about the same time as you were and am presently on 8mg....dropping by one mg every six weeks. At my visit last week, my rheumatologist said that I may have to stay on 3 mg or so for keeps. What I love about him, is he goes by my symptoms. You've gotten some great advice here and I think your approach is just 'better medicine'!💕

(You can probably tell I toned down my reaction. )💕

[HeronNS]

I think getting to 5 mg as you did was amazing and you should have been supported and praised by the doc rather than given a parcel of ineffective and risky alternative treament. Glad you seem to have found a better way!

[PMRCanada]

What a journey you’ve been on. I’ve never heard of a taper like that with a 5mg in the middle of quick 1mg drops. Too much, too soon I fear.

I took 1000mg of Naproxen daily for 5 months before my PMR diagnosis. It just took the edge off a bit, but no significant pain relief at all. My GP was wary of this medication as it was known to be rough on the stomach, so he insisted I take coated Naproxen tablets. I was also instructed to stop it immediately once I started taking pred.

That your rheumy would suggest 3 medications (that don’t work well), instead of one that does, goes to show you how desperate some doctors are to get their patients completely off pred, at whatever cost to the patient.

Sounds like you’ve got a supply of pred and Actemra and a slower reduction plan which makes more sense. You’ve done it their way and it resulted in the return of symptoms. All the best moving forward. Keep us updated.

[Frewen1]

Hi everyone, very interesting thread for me, Jonimoroni, as a GCA-er…thanks …had got down from 60 mg twice since August 2020 diagnosis ( first flare because of too quick reduction ) … got to 5 mg after another year, now have jaw problems, intermittent ghosting vision, blood results on the rise again, back to 20mgs and rheumy says I have to keep increasing until I’m “symptom-free”…(!!?? What’s that?). However, she now says she’s referring me for TCZ because of these recurring flares. Should I be ecstatic? Had always understood this to be the “holy grail 12 months” if offered it, but I just don’t know - all adverse symptoms of Pred returning, now back to 20mg, ( so feel fairly rubbish ) - seeing Rheumy next week, I guess I’ll see what she has to say.

Oh, I probably also to have an operation on ankle as it broke a year ago ( I stepped off a 2-inch kerb ) and bone has never mended - it’s the ever-giving gift, isn’t it? 🌺

[PMRpro Ambassador in reply to Frewen1]

To have got to 5mg after barely 2 years having flared once and returning to 60mg still shows you are being expected to reduce the dose far too fast. With a basic taper as described here

rcpe.ac.uk/sites/default/fi...

which is still in use by the author at Luton hospital, you would have taken a good 2 years to get from 60mg to 5mg ONCE, never mind twice.

If they stopped rushing the patient off pred, they would have fewer flares and fewer failures,

Even Chetan Mukyhtar at Norfolk uses a 100 week taper and claims 80% of patients with GCA are off pred in that time. I have my doubts about his 100 week claim for the longer term but I haven't seen his data.

It might work using TCZ - it works for half of GCA patients to get them off pred entirely but even it isn't perfect - Mukyhtar was talking about it on Wednesday in his webinar. Half of patients still need 8-10mg of pred to manage the parts of GCA that aren't IL-6 mediated and TCZ has adverse effects too.

[Frewen1 in reply to PMRpro]

Thanks PMR Pro, yes I attended the webinar with interest… now not seeing Rheumy next week, apparently, phone with nurse instead, so no idea what has been decided…

[DorsetLady PMRGCAuk volunteer in reply to Frewen1]

You wouldn’t have recurring flares if she let you reduce sensibly-I really do not understand the thought process of some doctors. I know they don’t like Pred, but they just make life intolerable for their patients -and then add in expensive drugs when a slower taper on “cheap as chips” steroids would do the job.

[PMRpro Ambassador in reply to DorsetLady]

Plus the too fast tapering and resultant yoyoing of the dose creates longer term problems. I still maintain at least half of patient difficulties are due to poor diagnosis and management of the symptoms with pred.

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Absolutely agree -but what do we know! 😳….Only answer that if you can do it politely 🤣😂

[Jonimoroni in reply to Frewen1]

Hi Frewen1 -yours is quite a similar pathway to mine. I can’t say if you should be ecstatic or not!! But In almost certain that TCZ has helped me enormously, and that until I got to about 7 mg of Pred, I felt very much improved, and had more energy than I’d had since GCA struck. Daily 5 -8 km walks - with a hill!- and a fair bit of physical work decorating in anticipation of downsizing soon - though I did pace myself. After 5 mg on the fast taper I had to slow up considerably. Rest is detailed above. I had a huge fear of needles - self- injecting seemed like a nightmare scenario to me - and this was my biggest barrier. However, it’s turned out to be a doddle! Don’t feel it AT ALL, so long as I’ve warmed the biz-end of the pen to skin temp (by holding it in my palm for 15 mins ) - if it’s cold I do feel it. But not much!

Keeping good records has been key too - a few bad days can send my memory a bit haywire, so having making sure I fill in my dosages (am) and symptoms (pm) really helps when I want to see how things actually are - and great when it comes to writing a post like this

Wish you well - let me know your decision how you get on either way

[Frewen1 in reply to Jonimoroni]

What a great reply, thank you … just had the message today that my consultation next week is now with a nurse, by phone … don’t see quite how that will work, as big decisions unlikely to be made by nurse? We’ll see … good luck you, too x

[PMR2011]

Once on TCZ inflammatory markers are not useful as it takes them to zero. When I went on it, we stopped bothering to check them. Waste of health dollars. Symptoms rule and agree with the others, your physician is not listening to yours!

[PMRpro Ambassador in reply to PMR2011]

I have lost count of the patients who are over the moon because their ESR/CRP are so low on TCZ! There are a lot of doctors who aren't registering it isn't tell them anything except that the patient is on TCZ and it is doing what it should. Doesn't mean the actual disease process is gone though.

[Sharitone in reply to PMRpro]

It is my rheumy who is over the moon about my CRP level! Do you think they have targets to hit?😆

[PMRpro Ambassador in reply to Sharitone]

Obviously hasn't read the documentation then! Really worries me ...

[Frewen1]

Thanks very much for that … it’s all so subjective, isn’t it?

[Frewen1]

I’ll let you know if I ever get put in TCZ

[Sharitone]

Yes, Rugger is right: your story wounds very similar to mine. Interesting that while you flared, you still didn't get adrenal problems. I am also getting stiffer and stiffer at 4mg. I also have all sorts of pains, some definitely tendinopathy, but others too. They're not bilateral, so presumably not PMR, but the cause is nebulous. It would be really useful to know whether they are linked to the reduction in pred, or having been on it for a while, and whether it is likely to clear up eventually. Do you think we have the same rheumy?

[Jonimoroni]

Hi Sharitone - yes!! Similarities indeed. Hadn’t seen your post, possibly it didn’t come up on my daily ‘feed’ - but now I’ve read it, and caught up with your profile. Will follow you to see how it goes for you. Probably it’s early days yet to extract for TCZ and Pred tapering best practice. We’re all part of the experiment…my own experience is that fast to 10 has been ok, but I want to go very very slowly now, having had this flare at 5>. but have only 5 months TCZ left. I’ll sit down and do the math tonight to see how slow I can go within that constraint - I’d be very happy to get to 2 or 3 mg and stay there, unless something miraculous happens and I can abandon Pred altogether.

One good thing is that I’m better able to judge what my body is feeling now - I have an internal ‘pain scale’ that I’m familiar with.

My Rheumy is in Ninewells, Dundee. - certainly seems to have the same attitude as yours.

[PMRpro Ambassador in reply to Jonimoroni]

I think one of the problems is that the clinical trials using TCZ in GCA were in newly diagnosed patients who won't have been on pred for long - as soon as the TCZ started to take effect they were reducing so the adrenal suppression effect won't have been so marker. Using it now for relapsed patients means they have been on pred much longer - more adrenal suppression, takes longer for it to return.

[Jonimoroni]

Sounds sensible (as always!) Pro. How can I tell the difference between symptoms of a flare and symptoms caused by adrenals re-awakening ?

[PMRpro Ambassador in reply to Jonimoroni]

A flare is likely to resemble the original problems. Adrenal problems tend to be fatigue above all. You could ask Snazzy what she thinks - she has the t-shirt.

[Jonimoroni in reply to PMRpro]

Great - will do - Thanks!

[DorsetLady PMRGCAuk volunteer in reply to Jonimoroni]

See these -

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

[Jonimoroni in reply to DorsetLady]

Thanks DL! Those are great articles,just what I need, I’ve saved them to re-read - it takes a few readings before it all goes in 🧐

[DorsetLady PMRGCAuk volunteer in reply to Jonimoroni]

😊…hope they help