Hi,
For those of you who are taking Mepolizumab what was the protocol for discontinuing Prednisilone before you started it? Is it done gradually? Can I do it myself or would I have to be admitted to hospital? What were your experiences?
I have CSS/EGPA (10 years)
Any information gladly received.
I imagine that your current dose of pred and how long you have been on it is significant. No drug (other than hydrocortisone) can replace pred in the context of adrenal function so below about 8mg the reduction will require to be slow enough to allow adrenal function to return if you have been on higher doses of pred or for a long time. Without that information it is difficult to say more.
At the moment I've been increased to 10mg daily (been on this dose for 1 month - prior to that 6mg daily). I have been on Pred for 10 years, in varying doses from between 60mg - 5mg.
Then I would think that you can probably get to 5mg relatively simply. Beyond that it will very much depend on the state of your adrenal glands and whether they can take over the production of cortisol as the dose of pred is reduced slowly - which probably means 1/2mg at a time, if you are lucky each month, so your adrenal glands are able to undertake a staged return to work. There is nothing that will speed up this process, it requires time. And once you get to 5mg, a synacthen stimulation test will provide information as to whether the adrenal glands are CAPABLE of producing cortisol again. That is no indicator of whether the rest of the set-up will click back into duty as it is a very complex feedback system involving various organs and hormones.
Such a reduciton will take months - but you can do it yourself, you don't need to be in hospital. Just someone needs to take an interest and check you are OK.
Thank you for all this information, very interesting.
I can get to 5mg but that is when all of my symptoms start to flare. That's why I've recently been put up to 10mg daily. And none of the immunosuppressants work for me that's why Mepolizumab has been suggested.
I'm a bit confused as to what happens when I get to 5mg? As you say a synacthen test will be performed to see if my adrenals are capable of producing cortisol again but what if they're not? Would I still have to be on 5mg daily or can't I use Pred as well as Mepolizumab?
Sorry for all the questions!
Are you trying to go from 10 to 5 in a single step? If so - no wonder you have problems!
On my home forum, PMRGCAUk, all of us are in the process of tapering pred from various level of high to low and, hopefully, off pred. The slower you do it, the more successful you are likely to be. Below 10mg in particular the steps should never be more than 1mg - they should never be more than 10% of the current dose anyway. The bigger the ratio the harder it is to drop the dose. You also need at least a month at a new dose to be sure it is still enough before trying again - and that is when you are reducing slowly and in small steps. This slow reduction below 8mg is essential for the return of adrenal function too - as well as identying the right dose of pred for you. If you drop in small steps you may find that even just 6mg is enough - 6mg pred is a very low dose (less corticosteroid than your body needs naturally) and if it works well, maybe you wouldn't need the MAB?
I don't know about interactions between pred and Mepolizumab but I'd think they are OK together when the pred is being used as a replacement therapy for poor adrenal function. But you aren't there yet.
No, no, I am not trying to go from 10mg to 5mg in a single step. Heaven forbid! I think I know the consequences of doing that! 😊
Well I received my appointment letter, to see the relevant medical professionals, today. So I shall be interested to see what way they are going to approach my treatment.
Thank you PMRpro for your input. Very enlightening.
Phew - that's OK then! But I do know doctors who would tell their patients to do it and not take no for an answer! And other doctors who can't accept that (say) 7mg is such a low dose of pred tha tit is safer to leave their patient on that long term rather than introducing a new fancy and possibly risky medication that may not get you to zero pred anyway for whatever reason.
They are aspects to consider.
Hi!
I’ve had MEPOLIZUMAB injections for 18month now. I was told DO NOT reduce or stop any meds without strict & closely monitored advice!
Initially it’s regarded as a SUPPLEMENT til the see how you’re responding. I was on it for a full YEAR before slowing reducing the Mycofenalate mofetil, then when still stable a few months later, I’ve been asked to very gently reduce steroids by 1mg a month! I’m on regular fortnightly blood tests to monitor this closely, but having got down to 6mg ( they were hoping I could completely come off steroids after 8 years) the eucinophils its meant to control, are jumping wildly again.. looks like it’s already met it’s match with me...
But, please DONT start reducing Pred yourself. This must be done VERY carefully with close monitoring too.
GOOD LUCK!
Rose
Thank you Sparkimoore, for your advice. Very much appreciated.
Quick question Sparkimoore; Do you inject yourself? My Rheumatology consultant intimated that I may have to.
No! I have to go onto the Medical day Unit each month, where I’m admitted for several hours after the injection for very careful monitoring as there is a risk of ANAFALAXIS.
Initially I was kept on the Ward for 4hrs after the injection, as time has gone on, this has been reduced to 2hrs.. This is 18months on.. The nurses keep a close eye on you in that time, & initially do 30min one.. BP, pulse, oxygen sats, but now they just do them when I arrive then when I leave I’ve had no problems.. but I do get SEVERE fatigue for about a WEEK after the injection.. one of the lnown side effects.. Initially I was sleeping about 20hrs a day for a week.. just UTTER exhaustion. Now, I just feel Vv tired. It does ease.
Many people have had miraculous improvements on this drug ( tho sadly not me.)
Good luck!
Please feel free to ask any other questions you have...
Rose
I've been on Mepolizumab since March. I was diagnosed last year with CSS/EGPA. My rheumatologist left me on the methotrexate and prednisone as well because it takes several months for the Mepolizumab to fully work. I get monthly injections. They started at 100mg and ramped up in later shots to the full 300mg. They kept me in the office after the initial shots to watch for reactions until they were sure I could handle the drug at full dose. I've recently been reducing the prednisone and have been able to gradually drop from 9mg to alternating between 6mg and 7mg. I'm not sure that I'll be able to come off the prednisone completely.
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