Experiencing my first flare, moving backwards…

[canadacando]

Hello all,

After 8 months, I have experienced my first significant flare, and I am frustrated and worried. Up to this point, my tapering regimen has occurred without problem, and I considered myself to be one of the “lucky ones” who hasn’t been experiencing setbacks. You all have been so amazingly helpful, and I am turning to you now hoping for assurances and guidance.

I was trying to reduce down from 7mg. Up to that point, my tapering has been successful with no issues. After 3 weeks of attempting to reduce to 6mg, I settled on reducing from 7mg to 6.5 mg, but I only made it a few days on 6.5, with my pain increasing to a worrisome level. Based on suggestions here, I have increased to 10 mg to flush out the inflammation where I have been for 3 days. But, my pain is increasing instead of reducing. I fear that I now need to start all over. I had hoped to stay at 10 mg for 4 days, and then drop down and continue on at 7mg.

Now, do I need to increase above 10 mg? My pain is tolerable, but obviously the 10 mg hasn’t kicked out the inflammation. What do I do if it gets worse? If I stay on 10 mg longer, I won’t be able to drop back down to 7, but I guess I’ll have to start the slow taper from 10 mg? Any guidance you can give will be greatly appreciated! I appreciate this forum and the fantastic “experts” who are selflessly helping us all as we move through this process.

[DorsetLady PMRGCAuk volunteer]

This link contains usual advice for dealing with a flare- but short answer is you may need a little more - say 12mg and give it a bit longer to work - up to 14 on increased dose is okay - doesn’t impact on your subsequent reduction- but I’d be inclined to go down to 8mg or 7.5mg rather than 7mg when you do.

healthunlocked.com/pmrgcauk...

You are also in the realms of adrenals needing to stay thinking about working again - see link - and for illness and adrenals a slow taper with small steps is best.

healthunlocked.com/pmrgcauk...

[canadacando in reply to DorsetLady]

Thank you DorsetLady, as always! I appreciate the links here, as it is sometimes difficult to find the right links when needed. I will read now, and I thank you for the reassurances that this isn’t the end of the world.😅

[DorsetLady PMRGCAuk volunteer in reply to canadacando]

By no means is it the end of the world…but some days it just seems like it is….😉

[PMRpro Ambassador]

As DL says - you might just need a bit more - and it sounds to me as if 7mg was very much the baseline and you might have flared a bit had you stayed at 7mg, SO you probably need at least 12mg.

And have you been doing ANYTHING at all different? Activities, diet, anything at all?

[canadacando in reply to PMRpro]

Thank you PMRpro for this. I’ve just increased to 14mg, and am reassured to know that I should be able to drop down once I’m past the flare. Regarding diet - I’ve been drinking a more than usual with a few special occasions happening all at once, but I’ll stop drinking completely until I’m past this. I’ve also been on Weight Watchers for the past 6 weeks, and dropped 5 pounds - it has been great for helping me manage my weight while on steroids. I was starting to exercise more because I was feeling well “until” I flared, so now my activities are reduced again.

[PMRpro Ambassador in reply to canadacando]

Yup - knew there'd be something exercise related! You have to build up VERY slowly - what did you introduce?

[canadacando in reply to PMRpro]

I was highly active before PMR struck. I started doing 4-5 mile beach walks (3x in the past few weeks), doing Pilates 1x per week, and OrangeTheory 1x per week modified to reduce strain, making it about 35k steps per week recently. Before PMR, I was at above 50k steps.

[PMRpro Ambassador in reply to canadacando]

Ah yes - but this is post-PMR and you have a whole new normal and you have to start from scratch, as a real beginner. Sounds crackers but your muscles are likely to develop DOMS (delayed onset muscle soreness) much more easily and then take a lot longer to recover. I suspect that is the culprit.

[Dochaz]

The taper down from 7 mg to 6 mg was hard for me too. Tried twice before I got past that stage, but be reassured, you will get past it eventually. Follow the advice of the experts and take your time! I'm on 5 mg now, reducing by half a mg only when I feel ready. Sometimes it's after 2 weeks, sometimes 3, sometimes 4. I haven't had another flare so far 🤞

[AmberAliona in reply to Dochaz]

I really can't get below 5mgs. I was diagnosed in 2017. Luckily I have a very understanding Rheumy. He says I may be " one of the unfortunate ones" who just can't go lower, and trying to makes me stressed which just causes a flare.

[BiBaBo]

I could have written your post! I was reducing 1mg every 2 weeks but once I got to 9/8mg I had issues. I've always done alternative doses though since getting to 10mg. So, 10mg for 2 weeks, 10/ 9 mg alt days for 2 weeks, 9 mg for 2 weeks etc. Once I tried to get to 9/8mg, the twinges started to happen - but I managed on paracetamol and continued to try to taper. Each drop the pain increased! Stupidly, I continued down to 6.5mg and had a Flare. My Consultant was rather unhappy with me for not contacting the hospital and just waiting for my appointment.

Now back up to 10mg for a month, then reduce 1/2 mg alternate days for a month. So now 10 mg, then 10/9.5mg for a month and so on. Any more problems then I'll be looking at adding another drug.

Going to be much slower now, but lesson learnt. I was so desperate to get off prednisolone I was ignoring the pain! Silly woman.

[Miserere]

I could also have written your post. I was absolutely fine and galloping down the doses until I reached 7mg - then it flared. I had to increase to 10mg and this time got to 6.5mg and flared again. The third time I got to 5.5 mg. Tiring, isn't it? I am now on 8.5mg and taking it slowly. I think I am also a little anxious this time as I don't want to flare again - hence taking it more slowly. I'd rather do that than have to increase and find it even harder to reduce again. I am hoping there will be a point at which it might get easier. Mine is not helped by osteo-arthritis and restriction in walking etc.

Good luck and take it slowly - at first I thought I would be through this in no time. Just goes to show.

[PMRpro Ambassador in reply to Miserere]

Please bear in mind that you are NOT heading relentlessly to zero pred. You are titrating the dose to find the best dose for YOU at any given time, the lowest effective dose. When you flare at a similar dose more than once it is a sign you have reached that goa; FOR NOW. It doesn't mean you won't get lower - just not yet.

And if you try to force to a lower dose it often means subsequent reductions may be harder. As you are finding.

[canadacando]

It is comforting to hear that I am not alone. I have also heard that once one gets down to 7 or so, the negative results of the prednisone are lessened significantly, as that range is similar to what the body would naturally produce. I would appreciate confirmation from the experts here that the 2 doctors have told me this correctly. This would mean if I can get back to the 7mg I was at 2 weeks ago and doing fine, I can then reduce much slower and cautiously, not having to fear the negative results of the prednisone. Is this a correct understanding?

[DorsetLady PMRGCAuk volunteer in reply to canadacando]

One of the links I sent you previously explains about the physiological level of cortisol your body produces -roughly equivalent to between 5-10mg of Pred. So when you get down to your natural level, your adrenals need to start working again. Easier for some than others..

Less negative effects on lower doses of Pred yes, but probably more noticeable nearer 5 than 7mg but again often down to individual circumstances.

[PMRpro Ambassador in reply to canadacando]

Depends on the person - I have not got near 7mg for most of the nearly 14 years I have been on pred, just once for about a year before another flare. I have negligible adverse effects from pred anyway but it, in combination with the anticoagulant therapy I've been on for about 10 years now (amazed to be told that on Friday!), I did have bruising on my shins and since I have been on Actemra and got down to 8mg that has almost gone. My skin had also become quite delicate in that area and it is back to more like normal now. But none of the improvements happen overnight.

[canadacando in reply to PMRpro]

Thanks for this reply! I haven't had the need for any added meds, hope that I won't, but will be open minded as one must when dealing with this very unpredictable condition!