After successful reduction to zero prednisolone the symptoms flared again. Back to the (different) consultant who said I can give you an injection instead. So I had 120mg of Depo-Medrone injected. But... after ten days the symptoms are back. I had never heard of D-M as an alternative to Pred. Seemed like a good option, but now I am not so sure. What would you advise as to the way forward? Another dose of D-M, or back on the Pred? (I had previously tried this at 7.5, but the consultant gave me the injection instead). All advice gratefully received.
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Sarnano
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Depomedrone is still a steroid and the idea of the injection is that it gives you a decent dose that dies down over a period of days to weeks. . In your case 10 days seems to be the window. A conversion I saw was 120mg DepoM is equivalent to 150mg Pred but it isn’t all going into your system at once like if it was IV or tablet. Why did they go for that instead of tablets? What expectation, plan or advice were you given for after? Was it a nip it in the bud and carry on as normal on zero Pred or is there a plan B?
Very much the nip in the bud (and hope it goes away) I think. No plan B other than the offer to come back for a top up, which I guess I will do. Not sure about the side-effects thought. Nothing much at the moment, except for pain and weakness in my right hand, which is new. I think on the whole I'd prefer to be back on the pred, and a reduction regime, but I don't know what level to start at, or what the reduction regime will be. At the moment I await a response from the hospital. Thanks for your reply.
Looking at previous correspondence on this, agree that you probably would be better going back on oral Pred - and probably need a higher dose than you tried last time.. or at least stay on it longer..
If I'm correct you tried 5mg..a month or so ago... so are you say you are back at zero since then, or what?
.. and did you discuss that with the Rheumy or not?
Thanks. No, I was taking 7.5 when I saw the rheumy. But still not high enough I think. Then he said I can give you a one-off injection, but now my one-off has worn-off! I guess they will offer me another jab, but I agree that a managed regime of oral will be better. Just need advice on the level to start at...
If it were me, I’d opt for a more controllable oral dose instead of trips to get an injection every few weeks and bit of a rollercoaster with symptoms.
Okay thanks… well maybe try the flare protocol again see here [although you may already have it in previous replies] rather than a one-off injection - and then back down to 9mg or 10mg as your starting point -as 7.5mg is obviously not enough -
I appreciate it’s disappointing, but you do need to get things back under control… and sometimes that requires a higher dose than some doctors would like - but if it works, it works. .. and probably better than experimenting with injections that don’t last.
I'd dispute the "successful reduction to zero" - how long did it take for the symptoms to reappear?
It seems the rheumy may not believe in your diagnosis of PMR - or not actually understand how it works. PMR is a chronic disorder - you get off pred when it has burned out and gone into remission and I think it is fairly clear yours is still bubbling away very gently. Unfortunately, even a very slowly dripping tap will fill a bucket eventually.
D-M can be used to manage PMR but the idea is an injection is given every 3 to 4 weeks - and a few people I know who have had that approach found that over time the D-M injections became less and less effective.
is the original work done by Prof Dasgupta 30 years ago but it has never really been followed up. Nevertheless, he has managed to get it included in the recommendations!
There is an interesting set of posts from someone who used the injections and did a lot of research into how they worked:
The biggest problem is getting the injections in a timely manner. It isn't as if you can have one injection and that is it - they are needed ongoing and before the symptoms are bad again or all you are doing is yoyoing the dose and allowing flare - which is what seems to make the pred increasingly ineffective. They are also deep intramuscular inections which require training to administer. And you need one every 3 weeks at least - bit of a nuisance if you want to go on holiday!! Oral pred is so much more convenient.
You probably need a week or two at 15mg to springclean - and you would hopefully be able to get down to 5mg quickly since you were well below 5mg and fine. But that last couple of mg needs to be reduced over a LONG time - some people say it took them longer than the whole of the rest of their taper!
Which suggests the PMR is still active but at a pretty low level. The inflammation that isn't being mopped up by pred builds up until it reaches a level you can feel. It does suggest you shouldn't need too much once you have had a decent springclean. But it is getting things under control that is difficult once you have flared up. There is always also a possibility that the disease activity has increased but that is unusual. Just never say never. I know it is disappointing but it really does happen quite often.
My rheumatologist wouldn’t give me the injection as an alternative because you can usually only have one every three months. Chances are the symptoms would be back before then so you’d always be chasing your tail.
The every 3 months rule is for joint and tendon injections. The deep intramuscular injections can be given more often without jeopardising tendons which is the reasons for the restriction.
I can tolerate the jabs but he won’t let me have them. I don’t get the side effects anywhere near as much. And it was definitely the Depo he was referring to.
Heck - your local choices seem seriously uninformed when it comes to PMR!! Obviously don't keep up to date! Though truth compels me to point out - the depotmedrone work is hardly the latest publication - Dasgupta did the work and published in 1991! So it is a while since they did any reading ...
I had 3 depo medrone injections this week, but for targeted ‘problems & places’! I’ve been having them for about 5 years now. I’ve tried two deep intramuscular D-M injections, too. But I don’t find them as effective for PMR, the oral are better, despite the dreadful side effects I suffer from, as you know what the disease is doing & can do slow tapers with oral pred. The control is in your hands with oral pred & the slow taper here on this forum, & the details of how to treat a flare, are excellent. There’s no rushing PMR!!
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