Vasculitis UK

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Prednisolone Toxicity

I have been on prednisolone for over 13 years now and I can't seem to get down. I have been told by my consultant, Mr Hughes , following a scan two years ago, that I had a residual amount of vasculitis/ giant cell arteritis in my system and I had to reduce my pred. I also had paid privately, two years ago, to speak to Prof. Dasgupta who said after 11 years of prednisolone I was definitely suffering from prednisolone toxicity and it was imperative that I got down to at least 7.5 mgs. Two years later I am worse off and seem stuck around 14 mgs. I was on 12mgs when I spoke to Prof. Gasgupta

I keep trying to drop by 0.5mgs every two weeks and have done this so many times. I get down to 10.5/11mgs and then it all goes wrong and I get my usual symptoms of tiredness, headache, light headness and generally feeling unwell. These have always been my symptoms no matter what I have tried. Of late when I get a bad spell I try and sit at 1mg above where I have just been when I got the relapse. My thinking is I don't have an illness it's just too much prednisolone in my body therefore just wait until your body adjusts. I have now been at 13.5 mgs for 9 days and I am still feeling rotten. Interestingly I did get down to 8.5mgs some years ago and my original symptoms of polymyalgia started returning i.e. sore thighs and neck etc. I had initially been diagnosed with polymyalgia for two years and that then morphed into giant cell arteritis.

If you read this far then thanks for reading. Any thoughts most welcome!!

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Stkeyna

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Prednisolone

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You may get more replies on PMRGCAuk forum -see you have posted there previously-there are a few long term users of Pred on there.

Just as a matter of interest are you using one of the slower tapering plan much discussed on that forum -couple of tried & tested examples here -

healthunlocked.com/pmrgcauk...

Thanks again - we have spoken before. I did wonder where to post so will now post on PMR! Yes I am aware of the slow reducing plan and I was going to try this when I got to 10mgs. I suppose my judgement is clouded by the fact that my thinking was -this is for people who have an illness not just for those taking too much pred.?

But the purpose if the slowed tapers are to reduce the pred dose with the least agony - initially to avoid flares of GCA/PMR but at the lower doses to encourage return of adrenal function which has been in hibernation.

So I have been on prednisone since 2012 for same diseases. Now on 7 for adrenals. Muscles are always fatigued and sore. What is really weird is my ESR at 53 and Crp at 20. However if I take a shot of Actemra ESR is normal and Crp as well. Can’t find anyone in Florida to figure this out. Actemra does not take away any pain. It just lowers the numbers. No GCA symptoms. I’m loaded with arthritis and am 80. Just sharing. I think I am sending this to you PRO it was meant for the person trying to reduce prednisone. Happy Father’s Day to all you Dads out there.

It is because of the way Actemra works - you cannot use ESR or CRP to see what is going on.

So how else can I tell how much inflammation is there and where? My doctor has no clue.

There are other markers to be used with TCZ but mostly they work on symptoms. I really am concerned at how many doctors are using TCZ witout knowing how to monitor the patient.

But Vasculitis doesn't go away. Are you not on a maintenance drug like Aza, Myco or Methotrexate? Are you seeing a proper Vasculitis specialist? If not, ring the helpline to find an experienced consultant. See Vasculitis.org.uk

Thanks for your response. I am with a very experienced consultant, Mr Hughes, who just says I have to get down...and that's about it! I did try methotrexate about 8 years ago but just got the same symptoms and it didn't seem to help. I'm just in a fog, quality of life is poor and don't know where to go now. I did ask my consultant, six months ago, if I could go on something like tocilizumab but he said there was nothing available and doubted if I qualified due to residual showing on my scan! But would the vasculitis be masked by all the pred. I have taken!??

If the methotrexate didn’t work they should have tried other immune suppressants until they found one that did work for you. I’m on rituximab and got my prednisone down to 5mg pretty quickly. Alternate they were going to try was azathioprine which I’ll likely be on when my two years of rituximab ends. I appreciate you’ve probably got a good relationship with your consultant but from your description I feel like you’re getting woefully inadequate treatment. Most other people I’ve spoken to with vasculitis get put on a multitude of different treatments if the first doesn’t work, and most good consultants would do everything they can to get their patients off pred and onto something else.

Nothing else works for PMR/GCA. And vasculitis specialists aren't always any better at PMR/GCA than a bog-standard rheumy. The two StK has seen are probably among the best in the UK - Prof Dasgupta is the acknowledged UK guru on GCA and has been for probably over 15 years. Rod Hughes is just a superb doctor.

Both PMR and GCA do go into remission without ongoing drug immunosuppression for most patients but there are small numbers where it lasts much longer than the more usual 4-5 years. The only option for management of either until recently has been corticosteroids and they remain the mainstay despite tocilizumab having been approved in the UK by NICE - but only for difficult to manage/recurrent GCA and only for 1 year although it was extended during Covid but that has come to an end now.

I was also about to say that the place to ask this question is PMRGCAuk where there are a lot of us in a similar boat. By no means all here are even on pred never mind long term. GCA is a vasculitis - but it has its own rules.

By the way you describe the symptoms, my suspicion is that you are someone who gets into adrenal insufficiency territory at a relatively high dose - it can happen around 10mg or more. And the only way to get past it is to accept the fatigue and limitations until your body catches up - Snazzy will tell you about her story. And the only way to get it to catch up is to stick at a dose of pred that is lower than your body requires for ideal functioning so the HPA axis (hypothalamus, pituitary, adrenal glands and associated hormones) is prodded to wake up - the system producing cortisol goes into hibernation while you are on higher doses of pred because the feedback set-up signals that no more corticosteroid is required, the pred does the job. Just like your central heating boiler doesn't kick in if the woodburning stove in the room where the thermostat is has been lit. Not until the pred level is down will your adrenal function return - and it can take a lot longer than is pleasant or expected. The smaller the reduction steps the less uncomfortable it is likely to be - but we are talking months here, not a few days.

Thanks again for your very helpful advice which I always appreciate. Quick question how long would you say I should sit at a certain level feeling ill - it's now been 9 days at 13.5mgs - before I give in, give up and therefore go up! I would have thought, if it is pred. toxicity and nothing much else, it should not be this hard to get down? It hasn't before but each time I lapse it gets harder after 13 years. A few years back I use to skip down from 15mgs to 10mgs!! It's also tough mentally as well as physically.

I think it will probably be as long as you can hold out - you won't get lower otherwise if it isn't the PMR/GCA that is the problem.

I've added to this reply on PMRGCAuk so have a look at taht

I been taking Hydroxychloroquine For around 6 years , 3 times a week (200mg) each.

And prednisone 0.5 mg if needed

when I have a flare up. Work very well for me.

Thanks. I have tried hydrox. previously but might have to try again!

👍🦋 try it again . It takes acouple weeks or so to feel the Hytrox. build up. I think, at least for me , it is best choice. And prednisone if needed when flarup.

When I first went down with Vasculitis (wheeled into hospital), I was on 90mg Preds, my consultant "zapped" me with cyclophosphamide and rituximab together twice within about 6-8 weeks, and tapered off the Preds. Followed up by 6 monthly rituximab - 18 months later I am now classed as in remission. I was very glad to get off Preds - sleepless nights and no dietary control. As I understand Preds don't fix your immune system, they just stop it doing too much damage. The immune suppressants actually give you your life back.

Good luck.

Thanks for your thoughts!

I am so sorry to hear that you don't really get breaks from your GCA. I would suggest that you taper using the "dead slow and stop" method:Week 1, take the lower dose for one day and normal dose the rest of the week.

Week 2, take the lower dose for 2 days and normal dose the rest of the week

Week 7, take the lower dose for 7 days.

Then you can start again or stay at that dose for a week or two before tapering again.

In my personal opinion they should try another immunosuppressant , the main problem is that your GCA doesn't go to remission and as the only medication you take is steroids you cannot get below a certain dose without flaring.

“the main problem is that your GCA doesn't go to remission and as the only medication you take is steroids you cannot get below a certain dose without flaring.”

Actually GCA does go into remission for the majority of people -there are quite a few of us ‘remissioners’ on the PMRGCAuk forum -mine for example has been in remission for nearly 6 years.

But whilst it is still active you do need to be on the right dose for the diseases’ activity.

Thanks again. My problem is that does a residual amount mean it is still active. From Mr Hughes' demeanour it was as though it was nothing to worry about and just get down off the pred. So I don't know if I have vasculitis causing me problems or is it pred or both? If it is just the pred. and I get a relapse, for whatever reason and I sit there for a week feeling poorly every day, do I then go up 5 mg to cope with it? But then I am back to where I was 6 months ago sitting at 14/15mgs and off I go again trying to get down. This is what has been happening. Or do I just continue to wait - but for how long? - thinking I am just suffering from pred toxicity and therefore just have to wait it out and stay at that level?

Sorry I can’t answer that, and wouldn’t want to disagree with RH - he may be correct in the only way is to continue decreasing. However that does leave you in a bad place, did he suggest any way to help you decrease? I’m guessing not or you wouldn’t need to be asking the question. A steroid sparer or painkillers to take the edge off pains.

Thanks AGAIN! No you are right he hasn't suggested anything apart from initially offering me tocilizumab then after the scan showing residual amount he changed his mind. That was two years ago ! Then six months ago when I asked about the tocilizumab he just said there was none available and didn't think I would qualify! After 13 years!!!!! Anyway trying to get an appointment with him which is proving very difficult. I usually see him every six months but it would seem there are no appointmnets at present - too long a waiting list! I must have a word with Boris!!!!

Think the issue with TCZ was muddied by the whole Covid shenanigans (what wasn’t)…

.and tbh honest I thought it was meant to help patients like you who cannot seem to get off Pred after such a long period. But all things seem to have changed…

Do hope you can get an appointment asap.

oops should read appointments!

Thank you! Much appreciated.

That's very kind and you are quite right. Things are always changing and, of late, not for the better! Enjoy your day and I DO appreciate your efforts to assist!!

Just a quick note about how I've cut down and advice I've got from endocrinology (it sounds like an appointment at endocrinology might help you).I have to cut down super slowly. I cut 0.5mg then leave it a month before another cut. The first week is terrible then it gradually gets better. I'm really sorry to say, you have to grit your teeth until your body had adjusted.

Endocrinology have told me that what the body needs when "normal" (eg no infections/flares) is around 5mg. So, I've managed to get down to this as my baseline but frequently increase due to infections. I also have grumbling GPA but the vasculitis team at my hospital (Addenbrooke's) don't think I need to be on more than 5mg.

At first, anything under 10 made me feel pretty lousy and I'd cut down very slowly after this point. What I've noticed recently though is because I'm getting to lower doses I can now cut down more easily to about 8 mg. Each time I go up, I set the goal of being up for as short a time as possible and then cutting down to 5mg,hoeever slowly. over time I can now get down to 5mg - maybe not for very long but I do get there.

I still don't feel great at this level but endocrinology told me I basically needed to suck it up and make it through the bad spell until my body had adjusted and although it hasn't been fun, I am now beginning to see the benefits as cutting down is getting easier.

Endo can also do tests to see how you metabolise the pred and whether you actually can't get too low or whether 5mg is achievable. They can also advise you on what to do if you have an infection & need to increase. Because of these things, I don't feel I'm going to do anything dangerous.

Sorry so rambly - currently on iv antibiotics so brain not that sharp!

Do hope you get on top of this soon - the cutting down can be horrid.

I DO much appreciate you contacting me and I read with interest your 'pred' story. Can I ask how long you have been on Pred. and why you were referred to an endocrinologist? When I asked my consultant he just said I wasn't at a low enough of a level to involve an endocr. It didn't make sense to me as they deal with adrenal glands so surely they might be able to advise from a slightly different point of view. I had thought about going privately but I didn't know if it would be worth it - now I am thinking I should. I also have been living in a haze of late so not much gets done!

Anyway I have finally got an appointment to see my rheumy in two weeks time so I will bring it up with him and see what response I get this time. It is interesting that experienced rheumies perhaps are not quite in the same world as the long-term sufferers!

I've been on pred for 12 years (I think similar to you?) The vasculitis team did a couple of short synacthen tests (which show how much steriod you are naturally producing) over several months - mine were always flat (which shows not much being produced) so they referred me to endocrinology. Probably worth discussing a short synacthen test with your consultant. If you've been on pred for a number of years, your body may stop producing it's own steroid which is why it's so flippin' awful when you cut down . Apparently the natural amount of steriod is 3-5mg so above that we don't really need it (unless for clinical reasons) but need to encourage the body to start producing again. It's called HPA axis suppression.Hopefully you can see from my first article, you can cut down, but it may just take a long time and isn't always easy (I cut when I have a week ahead of me where I don't have to do anything) but does get easier. Last year I had a day where they measured my cortisol levels throughout the day as I was feeling so lousy, but annoyingly the levels stayed ok so I had no excuse not to aim for 5mg!

I had hoped it would be easier to lose weight when I got down to 5mg, but sadly not!!

Good luck - I hope you get some more support.

Interesting you have been offered all this support. I'll have to be a bit more assertive. Anyway I'm now better armed as it were!! Thanks again.

Luckily I haven't put on much weight... I do fight it... well.. just had my chocolate allowance for the day!!! And that's not to say I haven't got a prednisolone stomach which I have!!

I am trying to come down after 8 years. But it is a very slow process. Because my symptoms keep coming back and when they do in theory i should go back up to at least 20 mg for a week. Then I have to go back down slowly again. It's hard work .

Yes It is very hard but it depends on what your symptoms are? Are you suffering from your illness or just too much prednisolone! If the latter then do you need to go back to 20mgs? However I don't know what your illness is etc so perhaps something to discuss with your doctor or rheumy. Good luck!

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