Discontinue prednisone at 9 mgs.

[Leeleep]

My thrush is not getting better and now after 10 months I’m down to 9 from 60. I am on Actemra. My doc said I can just stop the prednisone at 9 since my labs are fine and no head symptoms. I’m wondering if this is dangerous. The thrush is making my food taste like Vaseline and very depressing and I want to do this. Anyone that can share a story of discontinuing a early.

[PMR2011]

Hi LeeLeep. Am wondering if you need to be concerned about adrenal insufficiency? Even tho you are on Actemra the prednisone can still be suppressing your body’s production of cortisone. Sorry you are experiencing such a prolonged case of thrush, that is no fun!. Actemra is an immune suppressant, can that be contributing to the thrush?

[Leeleep in reply to PMR2011]

Started way before I went on the Actemra, however it might be adding to it.

[Soraya_PMR]

Have you tried cutting out all sugars Leeleep? That’s what thrush lives on, so you kind of starve it. Worked for me when nystan was having difficulty. 3 weeks without sugar and my weight fell, so I’m back on brown carbs now, but thrush at bay with alternate weeks of salt gargles/bicarbonate gargles.

Do you smoke? There’s sugar in cigs apparently!

I watched as my mother in law (with dementia) stopped her 5mg overnight. ‘‘Twas not a pretty sight, and she deteriorated physically and mentally. She also had PMR. It was of course a mistake (she had confused the doc’s instructions) and it took a while to work out that she had stopped her pred. I would not advise anyone to abruptly stop pred.

[SheffieldJane]

All the guidance I have read warns against stopping Pred suddenly. I really think that it would make you suffer much more than you are suffering now. The steroids will be normalising your blood test results. I don’t understand your doctor’s advice at all. It seems contrary to everything I thought I knew. Is it possible to get another doctor’s opinion.

Sorry you are suffering so much with Thrush. I have heard the tip about sugar too. Let us know what happens. Personally I would taper the Pred dose no matter what.

[Leeleep in reply to SheffieldJane]

Maybe because I’m on Actemra! Do you think 2 mgs a week would be the same problem.

[SheffieldJane in reply to Leeleep]

I am sorry I can’t answer that Leeleep, I just don’t know what effect Actemra will have on your reducing. You must ask for your Adrenal Glands to be tested to see if they are capable of producing the Cortisol that you cannot live without. I would use the dead slow method of tapering. 2 mg seems too much to me but I am not a doctor. I can imagine that you are dying to be off Pred because you are being driven mad by Thrush, but you really need to be careful. Perhaps your immunologist will have some useful advice. Let us know what happens.

[Leeleep in reply to SheffieldJane]

Thank you.

[SnazzyD]

Hello, have you had a synacthen test? If not, I don’t understand how the doc is certain your adrenals will just start working 100% to cope with stresses on the body. Yes the Actemra is counteracting the inflammation but you need cortisol to function and sudden loss of it can be serious. I would want to discuss this possibility with the doc before just stopping it which is contraindicated I believe.

Actemra will also be suppressing the immune system so stopping the Pred may well not be a cure for the thrush.

[Leeleep in reply to SnazzyD]

I’m going to my immunologist on Friday for my other disease. I get monthly gammagobulin infusions that I neglected for three months because I was too ill to take a 5 hr iv. Hopefully this will help to rid the thrush and I will ask her to let me have at least one Diflucan weekly.

[HeronNS]

The others are right; I'm shocked your doctor would tell you to stop prednisone just like that. You're still taking slightly more than we produce naturally so even if you don't need pred for the GCA you certainly need it for cortisol, and must taper carefully to zero. I can't find any indication whatsoever that tocilizumab has any bearing on cortisol production. As pred has suppressed your cortisol production you will need to take it in ever decreasing doses until you are off it and your adrenals have picked up the pace again. My understanding is that tocilizumab will help this taper because it should be controlling any GCA symptoms so even though you can't drop to 2 mg pred tomorrow you may well reach that desirable level much more quickly than most of us do.

[Leeleep in reply to HeronNS]

Do you think 1 mg a week is too much to drop?

[HeronNS in reply to Leeleep]

I think it depends how you feel. But once you get lower you should probably go quite a bit slower. Once you get to the physiological level, maybe around 7, you need to make sure the adrenals are responding and you'll know because of how you feel, whether you retain your energy, for example. I'm sure there will be others along eventually who've had some experience of tapering while on Actemra. I did read that when they were researching this the prednisone taper during the studies was designed to take 26 weeks but I don't know when in the treatment patients started the taper, how long they'd been on pred. Adrenal suppression occurs after just a few weeks and you say you started treatment ten months ago.

[Leeleep in reply to HeronNS]

So confused about this. For the most part I was always tapering. Do you think 1 mg a wk is dangerous?

[HeronNS in reply to Leeleep]

Probably not dangerous from 9 mg. But you really should ask your doctor what you should do once you are lower, Sheffieldjane mentioned the synacthen test, and this whole issue really does need to be discussed with your doctor.

[HeronNS in reply to HeronNS]

This is the item I read: medscape.com/viewarticle/88...

[Leeleep in reply to HeronNS]

Can’t open it.

[HeronNS in reply to Leeleep]

It's a Medscape article. These are the words I googled: tapering off prednisone while on actemra.

[Leeleep in reply to HeronNS]

I’m going to ask for the test.

[Longtimer in reply to Leeleep]

A rheumy several months ago got me to drop 1mg every week from 15 mg, I would not recommend it.....it was awful, pain intolerable........had to stop before 9mg!......now at 10 and staying there for several months....have suffered too much under useless rheumies😕

[PMRpro Ambassador]

Please DON'T just stop the pred! That is more than the physiological dose of corticosteroid - equivalent to the amount of cortisol, the body's own natural steroid, your body makes daily to function properly. Stopping it suddenly could leave you very unwell, it could even be life-threatening. As long as you are on higher dose pred your body doesn't make any, it doesn't start until you get down below about 7mg. And it doesn't just start up again because you stop taking pred - it requires a "staged return to work" because it is a very complex feedback set-up involving several organs and hormones that have to not only start working again but also get into balance.

You are obviously in the USA - do you have a PCP who is an internist? They may have a bit more idea about endocrinology - but your rheumy is obviously a bit ignorant! Or your pharmacist may be able to help you. Your immunologist may be more informed than your rheumy.

You could try 1mg every week to start with - and as long as you don't develop really severe fatigue you will probably be OK. But it isn't the GCA that is the limiting factor now - it is the pred and adrenal function.

It is said that even after reducing to zero slowly it takes about a year for our body to settle down and produce cortisol reliably. You are supposed to carry a card stating you have been a long term corticosteroid patient for at least that long so that if you are taken ill healthcare professionals are aware.

However - I think you can probably reduce quickly to 5mg quite safely providing you don't suffer too much with steroid withdrawal but after that please go more slowly. As long as you don't experience severe fatigue I think it is fair to say the adrenal function is returning but there is one lady on the forum who had got to 2mg without problems only for an endocrinologist to determine her adrenal function was very poor. It is impossible to say how you will react. You don't HAVE to have a synacthen test - unless you experience problems.

[Leeleep in reply to PMRpro]

I have already decided not to do it. I’m probably going to do 1 mg down either every 3 weeks or every 4 weeks. My PMR is bad and I am also scared of things you just mentioned. I’m wondering if my rheumatologist told me it was ok because I’m on Actemra.

[PMRpro Ambassador in reply to Leeleep]

The Actemra will deal with the PMR/GCA problem so taking the pred away shouldn't have any effect there - theoretically at least. I do know of people on Actemra who have been able to reduce pred far further than before but they still need some to manage their symptoms. Actemra is not a 100% replacement for pred for some patients - but there will be rheumies who don't know/appreciate that fact.

You say your PMR is bad - does that mean you still have symptoms?

[Leeleep in reply to PMRpro]

Yes..a bunch,

[PMRpro Ambassador in reply to Leeleep]

Which suggests to me that the Actemra isn't working on the PMR enough for you to have reduced to the dose you have. There are going to be people for whom it doesn't work. And you certainly shouldn't be being told to reduce further if you have symptoms.

The only reason for using the Actemra is to be able to reduce the pred to a lower dose - and by the sound of it, you've "failed" the medication (that's medical speak for "it doesn't work for this patient", it isn't you that has failed).

Given your doctor's suggestion to "just stop taking pred " at 9mg and the fact he is not treating the patient but ploughing on regardless - I think I would be looking for a new model. Soon.

[Leeleep in reply to PMRpro]

I begged to come off . Not her idea. I have Vaseline tasting thrush that is keeping me from eating and making me go crazy.

[Leeleep in reply to Leeleep]

My GCA symptoms are gone.

[PMRpro Ambassador in reply to Leeleep]

PMR is a symptom of GCA. Some people think PMR symptoms worse than GCA!

Oh well, fair enough - but you should be able to have the thrush dealt with far more effectively, probably longer term antifungals as a start. But you can also help things by cutting sugars and processed carbs as well as certain other foods, mushrooms and cheese included. Google thrush diet prevention.

[Leeleep in reply to PMRpro]

Don’t eat those foods. On a clean diet. Had a nail and toe fungus before diagnosed with PMR/Gca and was told to soak in vinegar. Soaking never worked and no docs would give me meds for fungus.

Also I had symptoms of PMR for many years before the GCA.

Getting my gammagobulin tomorrow. Had originally been on a monthly 6 hr infusion but when I hit the bad symptoms of the GCA I skipped some months and hopefully getting the Igg numbers back up will help me with the thrush . I will not decrease prednisone. .

[PMRpro Ambassador in reply to Leeleep]

Are doctors STILL refusing to give you anti-fungals? How do they think you will get rid of it otherwise?

[Leeleep in reply to PMRpro]

I was given just one Diflucan. Hopefully my immunologist will tomorrow. I’m also hopeful that once I get my Igg numbers up and more Diflucan this will get better.

[daworm]

What?? Just stop, no taper from 9 on down?? That would not be for me no matter what the Dr said....yikes...