Pains starting to come back

[Leepeelee]

Hi everyone

I recently reduced from 10mg preds down to 9mg, I had the usual withdrawal pains which lasted about a week and then things settled back down again apart from some fairly mild aching in the mornings.

So, after 2 weeks of things being fairly settled, the last 3 days have gradually worsened to the point where the pains have started waking me up early in the morning. It doesn't feel like a full on flare up but it has increased to significance. This morning I have aches in my upper arms, forearms & thighs, and I have the horrible foggy head thing back to.

I don't know what I should do, should I stay where I am and see if thing settle again? Or should I increase the preds?

I'm so unhappy, the tapering has been such a struggle, I thought that I had done well to get down to 9mg but obviously not

Any advise would be very helpful

[SheffieldJane]

I just wouldn’t persist Leepeelee. Your body is telling you loudly. A strategic withdrawal is what is required. Things shift and you can go again. It isn’t like it is a failure of willpower or anything. My body felt comfortable at 10 mgs. The doctor who PMRPro tells us about, who keeps his patients all on 10 mgs for 1 year, has a point, I think.

[Leepeelee in reply to SheffieldJane]

So, do you think I should go up above 10mg to get things under control and then drop back down to 10, or should an increase of 1mg from 9 up to 10 be enough to get things steady again?

[SheffieldJane in reply to Leepeelee]

I usually do a bit of detective work. These flare symptoms are two weeks away from your taper down. Have you been ill, or stressed, or overdoing things? Or do you think it was the drip, drip effect of being on an insufficient dose. The point is whether 1 mg will do the trick at this stage. You might want to do the 5 mgs for a few days then straight back to 10. I might do that.

[Leepeelee in reply to SheffieldJane]

I definitely haven’t been overdoing it, I’ve been resting quite a lot.

I’m wondering if my managing dose is 10 and by dropping to 9 I’m just below where I need to be?

So should I go up to 14 for a few days the drop back to 10 in one go?

[SheffieldJane in reply to Leepeelee]

That used to rescue me and it won’t hurt you. My doctor gives me a fairly free hand, does yours?

[PMRpro Ambassador]

It is one thing to persist with the withdrawal pains but when the pain is not for a couple of weeks and then gets worse it is time, as SJ says, to beat a strategic withdrawal. It may not feel like a full flare yet - but the inflammation builds up and it will eventually get to as it was originally.

I have just said on another post that sometimes it takes 2 or 3 attempts before it works. If tapering is a struggle then 1/2mg drops and slowing the taper may help but you won't get below the dose you are looking for, the lowest dose that manages the inflammation, without a flare. Waiting a month or two between drops to be sure will show that - if you are teetering on the borderline then the symptoms will return fairly quickly but if you still have a cushion it will be longer.

[Leepeelee in reply to PMRpro]

It is so difficult to know what to do. Since 6am today until now (10.20am) I have gone from pains, struggling to move my arms without creating massive pains, to - loosening up, reduced pain and much more movement (but still mild pains when not moving around)

Each morning for the past 3 days this has got progressively worse

[PMRpro Ambassador in reply to Leepeelee]

Interesting - had you been doing anything unusual over the past few days? How much did you take this morning?

[Leepeelee in reply to PMRpro]

I took 5mg 2mins ago, should have been the first thing that I did when I woke up but being beside myself, I had forgotten!

[PMRpro Ambassador in reply to Leepeelee]

Do you split the dose then?

[Leepeelee in reply to PMRpro]

Yes, 5mg in the morning and 4mg before bed

[PMRpro Ambassador in reply to Leepeelee]

Had you reduced the night dose? Maybe the other way round would work?

[Leepeelee in reply to PMRpro]

Actually, it was the other way round (4in the morn and 5 at bed time)

I took 5 this morning as I was going to take another 5 at bedtime to increase the daily dose to 10

Maybe I should try splitting it to 4mg in the morning and 6mg before bedtime to give the heavier dose before bed

[PMRpro Ambassador in reply to Leepeelee]

Oh right. Always worth the try - though 5+5 worked didn't it?

[Leepeelee in reply to PMRpro]

When I dropped from 10 to 9 , I reduce the dose from 5-4 but kept the bedtime dose at 5

[Zozoi in reply to PMRpro]

Hello,

I follow Dorset Lady tapering down program with success. However, the drop from 11 to 10 did not work so I went back to 12 to tackle any accumulated Inflammation. Then, dropped again to 11, waited to be comfortable and I just achieved to go down to 10,5, again following DL program. Rhumas keep saying that 0,5 make no difference, I disagree. I inted from now on to only attempt going down by 0,5, repeating week 2 and 3 if necessary. The important thing is to be able to go down, and if it takes longer then be it. Taking out of your diet all inflammatory food is important too. An Alkaline, gluten, sugar free diet has helped me hugely.

Good luck with it, but do not feel you are failing because you have not achieved to go down, we cannot go faster than the disease.

[Leepeelee]

Thanks Pmrpro, so do you agree that I should increase from 9 to 14 for a few days and the drop back to 10 in one go?

[PMRpro Ambassador in reply to Leepeelee]

Just a couple of days might be enough - in fact, just going back to 10mg may be enough. But you see how quickly you lose all the supposed benefit of pushing a reduction!

[Leepeelee in reply to PMRpro]

Yes, I guess this must be a common problem, we live and learn!

Maybe I should try going up to 10 first to see how that goes?

[PMRpro Ambassador in reply to Leepeelee]

I would

[Leepeelee in reply to PMRpro]

Ok, I am now 4 days into my increased preds to tackle what must have been a flare. Days 1 & 2 were an increase of 3.5mg (from 9-12.5) which had improved things but not fully back to where I was prior to the flare, so Days 3 & 4 i went up another 1mg to 13.5mg. So I am now at 4.5mg above the point where the flare started and although things have improved a bit further, I am still waking up with more pains than pre flare.

As I am now at the beginning of day 5, do you think I should go up again?

The dose that I had reached prior to the flare was 10mg (although each taper down had been a struggle) it was the reduction from 10 - 9 that must have caused the flare.

I’m splitting the dose with the slightly heavier dose at bed time.

What do you think??

[PMRpro Ambassador in reply to Leepeelee]

Have you spoken to your doctor? Are you also resting to give your body the best chance to recover? Recovery won't happen overnight - even if the flare seemed to! It is normal for the pain to be worst in the morning so don't panic about that.

But if you were struggling before the flare it was a warning to be careful.

[Leepeelee in reply to PMRpro]

I am not working at the moment due to shielding so rest is something that I am getting lots of.

My doctor is pretty useless when it comes to PMR advise, I struggled at the beginning with him.

I do have another video consultation with my Rheumatologist on 22nd June. Until then I guess I should just leave it a few more days before I attempt to drop back down to 10mg. I’m not keen on the idea of having to keep going up, and leaving it to long before I go back down.

[PMRpro Ambassador in reply to Leepeelee]

The dose you are at is near enough the recommendation for a flare due to reducing too far/too fast. I think you have to give it a week at this dose at least to see where you are. By which time you will have access to your rheumy. If you are still having problems then you have to consider whether it is a flare due to increase in disease activity. They do happen.

[Leepeelee in reply to PMRpro]

Thanks pmrpro

I’ll see what he says, I’m hoping that he doesn’t send me for blood tests!!

[Leepeelee in reply to PMRpro]

I’ve not been feeling that good today, I’ve felt a bit of nausea and it feels as if my heart is beating faster than usual. Is this a side effect from preds?

[PMRpro Ambassador in reply to Leepeelee]

It can be, yes.

[Telian]

Seems you’re not on enough to settle your inflammation. We usually say go back to the dose you were pain free on and stay there until symptoms have subsided before trying a smaller reduction of .5mg.

If you’re on the cusp of what’s the right dose for your inflammation it will probably take longer for symptoms to settle and you might need a bit extra.

If an increase of1mg isn’t enough go up another 1mg until you’re symptom free. If it’s really bad you might benefit from a 5mg increase and once things have settled you can come back down to where you were before. Bit of trial and error but listen to your body - it knows best.

[Leepeelee]

I increased my dose 24hours ago now from 9mg up to 12.5. I woke this morning feeling a bit better but not 100%. Still had aching upper arms and forearms but not as bad as the day before with slight flu-like symptoms but again, less than the day before.

Also I’m feeling a bit of nausea this morning, not sure that I have felt this before with preds.

Should I remain at 12.5 for a few days or go up again. Not really sure how long to try the current increase before I make my next move ?

I really appreciate all of the advise on here, it seems to be much more useful to me than speaking to my GP.

I have got a video link consultation with my Rheumatologist in 22nd June. I’m sure he will give me some advise to