The below 5mm curse

[Southmead]

Hello,

I know we all seem to have this problem when tapering. I tapered down from 5mm Pred to 4 and 4.5 as per the Swedish plan. All was going well, then it wasn't.

As soon as I hit the 4mm mark, the fatigue, brain fog and stiffness returned, the bucket must have gotten filled. I hung on for just over 2 weeks, there were no signs of improvement, so I have gone back up to 5mm for 2 days, and already the sympoms have improved. It's amazing what a difference that 0.5 mm can make.

After 9 years of rarely getting a sustained result once I begin to dip below the 5mm. I'm resigned to that I will never get below that, and like or not, the 5mm is my level. Which makes me wonder does anyone know if there are long term problems with a daily dose of 5mm? As it looks like I will never be off Prednisone.

Thanks ahead of time.

[DorsetLady PMRGCAuk volunteer]

the Swedish plan…

Please elaborate - there may be a gentler slower way…and yes we know the difference 0.5mg can make

[PMRpro Ambassador in reply to DorsetLady]

Probably Ragnar's concept???

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Yes I did think that - could only find some pictures of taper, which looked too aggressive, which is why I asked..

[Southmead in reply to DorsetLady]

its the one I got from this site, from a Swedish gentleman?

[DorsetLady PMRGCAuk volunteer in reply to Southmead]

..ahh yes, Ragnar… PMRpro’s DSNS is based in that… as is mine [albeit set up as weekly rather than daily] …

[Gilberstoun in reply to DorsetLady]

Hi - I suffer from GCA and Trigeminal Neuralgia and have managed to taper to 5mm and after consulting my Rheumatologist and discussing the risks of loss of eyesight etc - I have decided to just resign myself that 5 mm is the lesser of the evils and stresses of trying to reduce. I really don’t think there is an easy answer it’s just what you are comfortable doing x

[SnazzyD]

It took me much more than 2 weeks of feeling like that when I got to 100% the new dose and even then I didn’t feel tip top ready for the next one. I got there in the end but I fear you may me expecting too much too soon. Sorry, to be the bringer of unwanted news. And yes, 0.5mg did seem to make a difference!

[Southmead in reply to SnazzyD]

I can function at 5mm, after suffering for 2 weeks, perhaps I will stay on 5mm for a week, or so.

[SnazzyD in reply to Southmead]

possibly even more. It does depend on what you’re doing too. You can make it easier for yourself by not over doing it and making demands on your body until you feel a bit more lively. It’s all a balancing act.

[Southmead in reply to SnazzyD]

it certainly is a balancing act, just when you think you’re doing well, you fall off the wire..

[PMRpro Ambassador]

I've been on pred for nearly 14 years, I have only been well under 10mg for about 18 months of that - I get stuck and cannot get lower. More recently, I was up to nearly 20mg after a massive flare on top of stress all through Covid as my husband was seriously ill and died 18 months ago but even then I couldn't get lower and then the big flare arrived, Even having been put on Actemra, after a year I am struggling to get below 7mg. I don't appear to have suffered greatly! No diabetes, no osteoporosis, gained weight, lost weight, Actemra sent the cholesterol higher, I'm alive and kicking!

[Southmead in reply to PMRpro]

Thank You, I will plod on with 5mm, at least I can function a bit more. The brain fog was one of the worst aspects of the lower dose, or below the hard line 5mm.

[PMRpro Ambassador in reply to Southmead]

Quality of Life is a key measure.

[PMRpro Ambassador in reply to Southmead]

My measure for right dose is feeling well - no compromise.

[Southmead in reply to PMRpro]

Makes sense..

[Boss302Fan in reply to Southmead]

I’m sorry, I’m cringing here in the USA, it’s milligrams (mg) Pred, not millimeters (mm)….

[LemonZest11 in reply to Boss302Fan]

😂

[Sandmason in reply to Southmead]

I think if I get to that point I will start breaking off the tiniest, unmeasurable bits. I did that trying to get down from 20, now doing ok at 17. Crush a 1mg pill and take out a tiny chunk only.

[Southmead in reply to PMRpro]

Gosh, thats stress on a titanic level! Me too for 14 years, don't think I will ever get off Pred.

[Ridge in reply to PMRpro]

Thank goodness for that! We would be lost without you! 🙂

[FixThis]

for me the trick was following the six week taper at 1/4 milligram reduction increments. It seemed to take forever, but help me avoid flares. I also hung on between reductions just to make sure I felt stable before moving on. I wish you the best. This is so hard.

[TheMoaningViolet]

Hi, I remember finding the first taper below 5 mg particularly hard, this is when I had to switch from DL method to much slower DSNS method (the Swedish one). I also repeat each step several times if necessary until I feel completely normal. I am currently on 0.5 mg for two days, just repeating this step the second time. I am doing this taper very slowly. I feel fine, but sometimes that foot where the arc dropped after a ligament injury hurts, or my shoulder where the tendon was grumpy reminds me to be careful. I would be lying if I said I never look at my leftover pack of 5 mg tablets and think, "I could take 15 mg for just one day and feel no pain at all", but I never would.

[DorsetLady PMRGCAuk volunteer in reply to TheMoaningViolet]

I had to switch from DL method to much slower DSNS method

Just information there are 3 versions of my taper -5 weeks, 7 weeks and 14 weeks..,

[TheMoaningViolet in reply to DorsetLady]

I think I may have been doing the short one.

[DorsetLady PMRGCAuk volunteer in reply to TheMoaningViolet]

Just mentioned for info -so long as you have managed to reduce as low as you have that’s good so doesn’t matter how you get there. Fingers crossed for the end being in sight 🌸

[TheMoaningViolet in reply to DorsetLady]

I have a date projected (it may change), and I am thinking od doing something special to celebrate. 🤞

[Viveka]

Some of your symptoms, like brain fog and fatigue, could be adrenals which have to be tackled at some point and likely will take more than 2 weeks to improve. Depends how much was PMR symptoms and whether they got worse over the fortnight or just grumbled? Perhaps, as people have said, an even slower gentler taper would be helpful for you. Good luck.

[Flutterbies57]

I am in the curse zone too! Again that is ! Not my favourite . I do hope we can all get there eventually .

[oscarandchloe]

I'm in that zone too and having sat sweetly on 5mg for around 2 years, I decided the time has come to wrestle the dragon. Dropped by 1/2mg on alternate days with no effect for a week, then tried two days on lower dose then back to 5mg and boy did I notice the difference. On the lower days I have a headache, feel achey (not like PMR), wobbly in the legs, exhausted and have low blood sugar symptoms if I don't eat promptly. I had to go into London by train from Oxford last Saturday to an event I'd booked thinking I'd manage fine. Forgot it was bank holiday here and had to deal with crowded trains, packed out underground and finding a venue by my Google map from Piccadilly Circus, lots of stairs to go up (weak muscles from Pmr and double hip replacements). I felt terrible. Just couldn't deal with the stress even though I'd upped my morning dose to 5mg. I did have extra Pred. with me but just about managed to find my venue and get back home. Worst moment was needing the toilet in Piccadilly Station, following the signs, putting my money in the turnstile to find that I'd gone into the men's toilets! No-one in there thank goodness but then the turnstile wouldn't let me out so had to squeeze round it! How close I came to adrenal crisis , I don't know, but the whole episode taught me how easy it is to be too ambitious with what can be handled. I've been exhausted with a pulled lower back muscle and the wobbles ever since. Now back to square one and trying DSNS over the longer period.