Tocilizumab and coming off prednisolone

[Stkeyna]

Just looking for current advice as regards the usage of tocilizumab as an aid to getting down and off prednisolone. I met a helpful person on this site and he had been on prednisolone for many years - more than my 12 years. He told me his endocrinologist had put him on tocilizumab and he had managed to get from 10mgs down to zero in 7 months. I am guessing he is in the USA. I have been going for over a year and have got from 12mgs to 8.5mgs and now seem stuck and just so fatigued all the time! Just wondering about the following:

1. How you qualify for tocilizumab?

2. How expensive is it to go privately?

3. Advantages of seeing an endocrinologist?

4. I take it your rheumy should refer you to an endocrinologist?

My rheumy just tells me to keep going down but when I ask for any other advice/help no suggestions are given.

[PMRpro Ambassador]

You are in the UK - you will not get tocilizumab for PMR alone, it hasn't been approved for use because it hasn't been through the clinical trials that are an essential part of the approval system. It is only available on a limited basis for relapsing/refractive GCA. The last time I looked it up, it cost in excess of £12K per year just for the medication costs.

Just because someone in the USA has been able to get it prescribed doesn't mean it is commonly used for PMR even there. This is an international forum - and all countries are not equal I fear.

In order for adrenal function to return, you need to get to a low enough dose of pred for the body to start to produce its own cortisol again. That usually means 5mg or so for the process to even start. Yes, TCZ would probably allow that in terms of the PMR side of requiring pred and in that respect using it is your best chance of adrenal function returning. But that isn't a reason for the doctors to be able to use it unfortunately. If you need the pred to manage your PMR symptoms then you won't get low enough to require advice from an endocrinologist about how best to encourage adrenal function.

[Longtimer]

I can`t advise on the TCZ, but can tell you that my Rheumatologist wanted me to see and Endo, but because I am at 7mg they refused, even though I had a very low cortisol reading. As PMRpro has said 5mg seems to be the magic dosage for adrenals maybe starting to work, and seeing Endos.......

[Stkeyna in reply to Longtimer]

Thanks for the advice. Much appreciated!

[DorsetLady PMRGCAuk volunteer]

Have had to trawl through previous posts to find how long you’ve been on Pred - would be easier if you put those details in profile posts - as asked by PMRpro - not very clear in post….sounds as if you’ve only been on Pred a year.

This post on Adrenals may give you more information - healthunlocked.com/pmrgcauk...

[Stkeyna in reply to DorsetLady]

Yes it should have been more precise. . I did post on Saturday with clearer details and had forgotten they are not linked. Anyway 1 year Polymyalgia, 11 years GCA. The last year reducing. Thanks for link!

[DorsetLady PMRGCAuk volunteer in reply to Stkeyna]

Ok…but 8.5mg may be the dose your PMR actually needs (at the moment) …1 year in is not that long..it just that on top of your GCA it’s probably does to you!

[PMRpro Ambassador]

Just another question - in one sentence you imply you have been on pred for 12 years, later it sounds as if you have been reducing for 12 months. Which is the case please as it makes a big difference with regard to a lot of things.

[Stkeyna in reply to PMRpro]

Thanks for advice. I had PMR for 1 year and then 11 years of GCA. I was told 18 months ago that my scan showed residual GCA so being reducing for last year or so from 12 mgs but now stuck on 8.5mgs!

[PMRpro Ambassador in reply to Stkeyna]

In that case it is POSSIBLE you might get considered for TCZ for the longlasting GCA diagnosis. It is very unusual.

How slowly are you reducing? Sorry if I asked before but my head is mince at the moment! Is it the GCA that is raising its head at lower doses or the adrenal-type problems?

[Stkeyna in reply to PMRpro]

Thanks! Yes I'm wobbling too. Very tired and light headed. Just gone out for birthday meal and now wibble-wobble. You hit the nail on the whatnot! I don't know at 8.5mgs if it's GCA saying hello again or not enough pred. causing fatigue. I presume my adrenal glands are not working.

[PMRpro Ambassador in reply to Stkeyna]

The only thing they aren't doing is producing cortisol - because there is plenty of corticosteroid present for normal function. Think of it like a house with a central heating system with thermostat and a woodburner in the room where the thermostat is. When the woodburner is fired up there is enough warmth to keep the room temperature above where the thermostat is set - and the central heating doesn't kick in. As the woodburner starts to die down, eventually the room temp will fall below the thermostat setting and the boiler will switch on again. For woodburner read oral pred, for central heating boiler the whole adrenal system set-up. But like the central heating, when unused for a long time, the adrenal set-up can get a bit dusty/rusty and it takes time to settle down. It takes time and patience to recover.

[Stkeyna in reply to PMRpro]

Thanks for the imagery which helped. I don't think I answered an earlier question about reducing. I was going at 0.5 every two weeks but I have been stuck on 8.5mgs now for just over 4 weeks. I don't know where to go or stay?

Apologies but repeating myself as not sure if I am suffering from GCA returning or adrenal issues. My symptoms with GCA were tiredness, feeling light-headed/fuzzy and headaches - the latter probably caused by the pred. So my symptoms at the moment are the same as mentioned so I imagine this is very similar to adrenal deficiency? So this is where I am stuck!

[PMRpro Ambassador in reply to Stkeyna]

I consider 1/2mg every 2 weeks is too much at this stage. Especially if it makes you struggle. There are posts in the FAQs that talk about slowed tapers and using one of them with the smallest step you can manage with the tablets you have often helps get to a lower dose. But the underlying autoimmune cause of the inflammation may still be active - and that makes dropping further at best hard, at worst not on. After this time, if it really was GCA, that would normally be burned out but the process that underlies the inflammation MAY still be active and causing PMR effects which tends to last longer.

A basic rule is 10% of the current dose for the step down and obviously the lower you get, the smaller that will be, That is to try and avoid a third complication - steroid withdrawal rheumatism. These low levels are really complicated to navigate because the symptoms can all be much the same but how do you know which is which? If they start after a few days and then get worse that usually means it is the PMR/GCA symptoms developing because the inflammation isn't being fully controlled. If it is steroid withdrawal rheumatism it will improve slowly over the following week or so. Adrenal insufficiency will eventually improve but it may take a few months and you may have to suffer it to get through. Snazzy has written well about that.

[Stkeyna in reply to PMRpro]

That's great advice and much appreciated!!

[Viv54 in reply to PMRpro]

Hi, sorry to High Jack the post, but exactly what is {Steroid withdrawal rheumatism ? Im still on my tapering plan, while i wait for my endo app.6.5 of pred, but having very odd symptoms .I will look it up, but i like you explanation.Also Snazzy has been very helpful , in the past, so will get in touch. Many thanks.

[PMRpro Ambassador in reply to Viv54]

Some people react to the change in dose of pred with symptoms that either resemble the original disorder for which the pred is being taken or are rheumatic-like. They tend to start immediately you reduce the dose and then improve over the week or two after. They tend to be worse with larger reductions. So you may reduce the dose by too big an amount and immediately feel steroid-withdrawal rheumatism which then morphs into a flare without you noticing at first. The smaller the steps and the more gradual the reduction the less likely it is to happen.

[Viv54 in reply to PMRpro]

Thanks for this, i am in severe pain atm, new symptoms i have not had before , both legs from top to bottom are so stiff , weird pains around my ribcage . A feeling of very heavy pressure in both shoulders to name just a few of them. I did wonder if there was another stage i am going through. I seem to get slightly worse on some days, while im waiting for the powers that be get it together ! The lack of continuity atm is awful ! Im getting so angry about it, which is a catch 22 as im getting so frustrated with it all !

[PMRpro Ambassador in reply to Viv54]

The frustration doesn't help - stress and PMR really don't play well together

[Viv54 in reply to PMRpro]

Exactly, I'm trying to keep calm , not that easy sometimes.

[Stkeyna in reply to PMRpro]

A new day, a new page they say but mine still feels like yesterday's old news! So sorry to pop back in but it is so difficult to think clearly at the moment with being light-headed and not a lot of energy. The question I am trying to answer is do I give up about coming down if what I am suffering from is still the original inflammation? However, if it was an adrenal problem, how long would you expect to feel fatigued for before you turn the corner? I have had four and a half weeks at 8.5mgs after coming down over the last year from 12 mgs with occasionally bumps in the road. I was going at 0.5mgs every two weeks. Can you keep feeling tired for four and a half weeks and get slightly worse? And is 8.5mgs of pred. not at too high a level for it to be adrenal problems?

Another little cue that it might be inflammation is that at the beginning of 2020, when told there was only a residual amount of GCA showing on my pet scan, that I set off lickety-spit to get down and when I got to 7.5/8mgs I had a flare of pain just like I had 12 years previously when I was diagnosed with PMR i.e. pain in shoulder and thighs etc. This was a shock. I hadn't felt PMR symptoms for 11 years. I had PMR for my first year and then 11 years of GCA. So it really surprised me to feel that I might still have the original PMR?! You seemed to be alluding to this in one of your messages to me

Anyway just a little concerned that if it is inflammation then it is building up the longer I sit on the prednisolone fence! Thanks again for your advice!

[PMRpro Ambassador in reply to Stkeyna]

PMR isn't a different illness, it is part of a broad spectrum which runs from mild PMR to severe GCA:

academic.oup.com/rheumatolo...

PMR can be a symptom when a patient has GCA with histologically visible and identifiable giant cells or if a PET-CT scan shows inflammation in arteries in the trunk - or it can be "just" PMR with no identifiable pathology except inflammation around joint structures.

Do your doctors not check your inflammation markers? What do they do for you? Are they meaningful?

[Stkeyna in reply to PMRpro]

Thanks! I forget and should know what you have described!! My rheumy mmm yes he has checked inflammation markers but really they have been fine for 10 years. He just tells me to keep on going down as best as I can and that's about it! I do pester him for further assistance but I think he feels he has done his bit and I should just get on with it. Well that's my take on it but I'll try knocking on his door again soon.

[PMRpro Ambassador in reply to Stkeyna]

So obviously your markers aren't that helpful - and that means symptoms rule.

What does need to be worked out is whther this REALLY still is GCA ... It would be unusual to last this long in GCA

[Stkeyna in reply to PMRpro]

Indeed and for me that is the lottery winning question but how can you tell? The symptoms for my GCA are fatigue and lightheadedness. There were those headaches but the lower I dropped the more they just became an unpleasant memory! So symptoms now seem to be the same for adrenal deficiency and GCA. As I said previously the only sign, which was a year ago, was the appearance of polymyalgia which the rheumy didn't comment on. Anyway will sit on 8.5mgs for another week and see what arrives! Thanks as always and take care yourself!

[Blossom20 in reply to PMRpro]

Another fab analogy! Have you thought of writing a book? With illustrations....!

[Viv54]

WOW , how true is that !

[Ballywilliam]

Can I ask how long you were on prednisolone when got this advice re adrenals/ HPA axis fizzling 😊

[Stkeyna in reply to Ballywilliam]

I have been on pred. for over 12 years now. I didn't get that advice it was sent to me by Dad2cue who received it.I think he is based in the USA but not certain.

[Viv54]

It's so hard to know what's best, I was so low about the whole fatigue thing last week, wanted just to give in and up the dose. Most of the symptoms you quote I have or have had severely. After all this time my GP, says I may be sensitive to Pred! I'm on 6 mgs still, waiting to talk to the Endocrinologist. When the pain from RA, spine ,hips etc ,plus PMR on top, I feel hopeless. If I could only shake the fatigue, I can cope better, I'm getting a few breaks in the fatigue, wonder if it's a sign, things may be improving. I'm trying to hang on to this ! Thanks for your reply , it does help .

[PMRpro Ambassador in reply to Viv54]

"my GP, says I may be sensitive to Pred!" - you'd hope, or it wouldn't manage the PMR symptoms!!!!

Most of managing fatigue is pacing - maybe there is something here that will help:

healthunlocked.com/pmrgcauk......

[Viv54 in reply to PMRpro]

Thank you , I will read them tomorrow, when I can keep my eyes open🌸

[Viv54]

I already assumed you were from the USA, I don't see what difference it makes .Thank you for your replies , I feel they have been most helpful from a fellow sufferer, regardless of nationality.

[PMRpro Ambassador in reply to Viv54]

It makes a difference in that his experiences with tocilizumab for PMR is specific to the USA. It is not available for PMR in the UK, Australia, NZ and most of Europe outside the UK. Other protocols differ too.

[Viv54 in reply to PMRpro]

Thanks , i was aware .

[Darcy2000]

Slow but steady for both … after a year on Tocilizumab weekly now on every 2 weeks along with a slow decrease of Pred 1 mg every 6 weeks ?… started at 60 mgs 0ne year ago… so far no flares as I have GCA and PMR .. not sure about funding as in Canada a Dr has to make a special request