Yet another update

[Griggser]

So I’ve been having Depo-medrone injections every three months in a bid to help me reduce from 10mg. I’ve struggled for the last ten years to get below 9mg!

Over the last nine or 10 months I got down to 7.5mg following the DSNS regime. The issue I faced is as the injection wore off my symptoms increased. I had a phone consultation with professor Hughes and we agreed it was best to stop the injections and return to 10mg where I was comfortable. If in three months time I feel comfortable to try and start a reduction and if I struggle to contact him again. He would then prescribe me methotrexate in an effort to help my reduction. The only caveat being I would need to try it for at least for months as I previously tried several years ago but for just three months.

[SnazzyD]

Hello, can you explain to me, what the idea is behind this plan? I don’t get how giving you a steroid by another route helps you get to a lower dose of steroid. I am genuinely interested because my brain can’t work it out. Why didn’t they go straight to a steroid sparer?

[Griggser in reply to SnazzyD]

Trialled the depo-me drone as over the years I have tried all the other steroid sparers. It was really the only option left to try. Nothing ventured nothing gained they say!

[PMRpro Ambassador in reply to Griggser]

But it is only the same as a higher dose of pred but with a forced taper - which is why the symptoms return towards the end of the month-ish.

I think Admiral06 has a post that explains the relative doses released over the period the steroid is released from the depot.

[DorsetLady PMRGCAuk volunteer]

Sorry to hear you are still struggling so much. Prof Hughes’ suggestions sounds sensible, and not putting pressure on you - all you can do is try it and see.

Go with the DSNS again, in fact extend it if necessary by repeating each stage, and 0.5mg a time [guess you were already doing that anyway] and see how it goes.

Although it’s frustrating, it doesn’t really matter how slow you go, as long as you are making progress — and you may find that, if required, the MTX helps this time around.

Best of luck.

[Hidden in reply to DorsetLady]

sorry to butt in uninvited DL but that's exactly what two of my doctors have independently said to me 'it doesn't really matter how slow you go, so long as you are making progress'. One of them said to me only the other day that it doesn't matter if I take 2 years so long as I am slowly going down, which I am.

All my best wishes to you griggser. GG.

[PMRpro Ambassador in reply to Hidden]

But our point is - 2 years is the MINIMUM!!!!

[Hidden in reply to PMRpro]

That's ok, I don't really want to get into timings anyway. It is what it is, I know that now

[PMRpro Ambassador]

I took 4 years to ever get below 10mg, later I flared badly (increase in disease activity not overshooting the dose I needed) and for probably 4 or 5 years was at well above 10mg, latterly above 15mg. MTX just made me ill and I eventually was offered Actemra which is great and I have got to 7mg. But I can't get lower. There are cases of PMR that last a long time and require heavy-duty medication. At least I can have it!

[piglette]

It is frustrating how some of us have such trouble reducing and take years while others can just reduce smoothly. I do feel that in my case some problems were caused at the beginning by a rheumatologist who forced me to reduce quickly even though I was in a lot of pain and I did not know any better.

[Hidden in reply to piglette]

You may be right piglette. I was reduced too high a dose too quickly in the beginning which is how I ended up here. Everything I have learned I have learned since I joined the HU forum and I am very very grateful.

[DrRon]

Hello Grigger. You are very much younger than I am, so I am truly saddened that you have been on this PMR/Pred etc trip for so long already. I've had the diagnosis 6 yrs. Been on the reduction roller-coaster frequently. At last I am now prednisone free- 3 months. I know, don't count my chickens too soon. Over a long haul, Methotrexate MTX that I resisted for 18 months and finally relented, assisted me I believe to reduce prednisone carefully at 1/2 mg steps. MTX also helps of course with rheumatoid-arthritis which I developed in my hands during this lengthy process and prednisone wasn't able to reach them with much relief. I am 82 and arthritis in my knees and spine, but heh, it's not PMR, and I'm not on Pred., and currently Tylenol (acetaminophen) 500mg per 5 hrs ... Dr says I can do 4000mg per day ... I never do. At most 2500mg/da. All the best Grigger as you seek your help.

[DrRon in reply to DrRon]

PS Grigger, MTX had not noticeable negative side effects for me.

[Griggser]

thanks DrRon, all useful stuff. Good luck with your pain relief for your arthritis.

[Lochy]

Hi Griggser, sorry to read your ongoing struggles and frustrations. I finally managed to taper off prednisolone last November after 8 years. I’ve not been shouting about it as I still don’t quite believe it. I feel the thing that made a difference for me was starting a biologic Benapali as my rheumatologist decided I must also have an inflammatory arthritis. I was struggling with swollen knees and problems in my wrists. After 18 months of that drug (it was a weekly injection) they decided it wasn’t as effective as they would like. This was after scanning my wrists, knees and feet. I then started Filgotinib which is a JAK inhibitor - I’m not sure I can actually explain how it works! It’s a daily tablet. I’m currently 14 months into it and I feel well with no side effects. This past year is the best I’ve felt for many years. I slowly tapered through all of this and refused to stop my prednisolone until I felt happy on 0.5mg I think they’d given up arguing with me but I insisted I wasn’t risking suddenly stopping.

I think the new drugs have definitely helped. I was only allowed them as I’d already tried leflunomide and hydroxychloroquine and they had no impact. Steroids was the only one that worked.

I’ve definitely had PMR but perhaps I have morphed into an arthritis and these other drugs have been a success. I start to reduce the dose in an other few months so fingers crossed. I’ve not had any joint problems for a few years now so whatever is happening it’s working and long may that last.

Has your rheumatologist considered these other treatments? You’ve definitely not had an easy road. Here’s hoping this approach will help.

[PMRpro Ambassador in reply to Lochy]

JAK inhibitors are a new concept in PMR - but there are trials and discussions about them