Flare at low dose

[Melti]

Good morning all

Could I ask for advice re a flare- I was heading from 3.5 towards 3mg using DSNS, but the old familiar pain and stiffness started to creep back.

I think I remember reading that at lower doses one should double the dose for a few days rather than increasing by 5mg, is that correct? I can't find the post. I am now on day 3 at 6mg (also 15 methotrexate) and pain free but tired.

[PMRpro Ambassador]

I shall have this put on my grave: you are not reducing relentlessly to zero, you are looking for the lowest effective dose. You appear to have arrived - and that is the aim with the DSNS approach, you spot it quickly and can abort the mission!

If you go back to 3.5mg every day that should be enough if you do it quickly. If not, take 5mg more for a few days (i.e. 8.5mg) and then drop back to 3.5mg if you are confident you were OK at that before. If not, go back to 4mg.

At this level you are at a low dose and there is no hurry (there should NEVER be any hurry). It pays to stay at each new dose for longer between attempts to drop. The lower you get, the closer you are to that target dose so there is less of a buffer. And your adrenal function must always be given a chance to start to return at this level and it takes time. Often you won;t get there the first time - but a rest and waiting a month or two often makes a difference.

[Melti in reply to PMRpro]

Thank you PMRpro - I just wish my Rheum could listen to you. I think I've mentioned before that his mantra is "we've got to get you off the steroids....." I just hope my GP continues to prescribe the pred! I'll return to 3.5 for a bit and keep a low profile and hope that the Rheum is too busy to notice that I'm still on pred.

[PMRpro Ambassador in reply to Melti]

I just wish they would learn how PMR works. Do they tell their RA patients they must get them off MTX or whatever? Pred is our DMARD - it manages the symptoms of the ongoing autoimmune disorder. And DMARDs don't work for PMR ...

[Hidden]

Hi, what a shame, but we've all been there though. I too am doing the DSNS and had to increase mine. How long have you had PMR and did GCA kick in too ? Sadly, it did for me. I'm doing fine at 9mg with next week introducing a couple of days of 8mg. Wondering if a different regime might work better where we stay on a dose for a month and only reduce by 0.5 mg per month. I suppose it's all trial and error.

Good luck

[Melti in reply to Hidden]

Thank you Anne. I think I've had pmr nearly the same time as you - diagnosed Jan 2020, on pred since mid Feb 2020. I'm so sorry to hear that you also have GCA but it sounds as if it is controlled and that the tapering is going well.

Yes I think I'll stay on 3.5 for a bit as I felt ok before I approached 3mg, then try 3.25 with DSNS if I can cut those tiny pills into quarters! Thank goodness for a good pill cutter!

All the best, mel

[Hidden in reply to Melti]

My PMR was eventually diagnosed Dec 2019. I had to go privately as my GP was treating me for OA. Then I saw a rheumatologist privately, he started me on 15mg, pain immediately went. I was doing so well until March 2020 when GCA rose it's ugly head. Rheumy then put me up to 40mg where I've been trying to slowly reduce ever since with just a few hiccups where I've had to increase slightly. Thank goodness I found this Forum. It seems GP's and Rheumatologists all want us to reduce too quickly. Even at 10mg I was feeling slight pain in both arm muscles as I still do. However, I can cope with that slight discomfort, but get anxious when I experience a tender head, then have to increase dose again. I only have the sight on one eye so you can imagine the anxiety I get.

Best wishes

Anne