0.5 reduction

[powerwalk]

Can I possibly feel so bad with a tiny 0.5 reduction?? Aching legs and wrecked tired even more than normal if that's actually possible! Been on 4.5 what seems like forever. So reduced slowly to taking the 4 for last few days. Could it be that. Should I just keep going or give in..... Again! Also taking the low dose keflex for uti prevention. Sorry probably very boring question at this stage. Thanks.

[PMRpro Ambassador]

Oh yes!!!! I wrote a post a long time ago now "How much difference 1/2mg can make..." - and that was 1/2mg over 2 days!

If you are just at the right dose to clear out the new day's inflammation then taking a bit away will be enough to let the inflammation bucket overflow very quickly. And from the experiences I have heard on the forums over the last 10 years - no, don't try to tough it out, it never works and if you wait you may have a full blown flare and need a lot more instead of 1/2mg more.

[powerwalk in reply to PMRpro]

Oh thanks. Was afraid of that. All the old slow moving and aches back. So bsck up it iss then. Thank you.

[SnazzyD]

If you forget about 4.5mg being a small number, 0.5mg is still an 11% drop; not insignificant. Add into the mix your adrenals having less steroid to prop them up while they are learning how to walk again. There is no longer enough artificial steroid in your system to deal with the stresses on the body of daily life. Since about 6mg and definitely below 5mg, reductions have been quite gruelling in terms of feeling washed out, weak, achey etc. I’m pretty sure my adrenals are working a bit because I no longer get the leg wobblies and weepy fits at the end of the day. I slowly introduce the new dose over weeks and my body notices 2 new doses in a week for sure. There is no way I could go straight into consecutive days of a new dose; I’d be on my knees.

[powerwalk in reply to SnazzyD]

Yes would seem so. Thank you. Back up it is! Definitely scary to see and feel how it affects things. Even my eyes go real black undetneath. I dont even look right

[SheffieldJane]

It’s not boring. This is the stuff of life for us! I have heard many times that 0.5 makes a big difference. If you have had a run of UTI’s maybe it has raised your inflammatory levels. Or perhaps the medication is causing side effects. Or maybe 4.05 is your perfect dose. Stop for a while and sneak up on it later, perhaps even with a quarter. I’d be pretty content at your dose. Good luck!

[powerwalk in reply to SheffieldJane]

Yes. I did say to myself a few months ago not to to try refucing til i finish work in feb but you know yourself the "might work this time" thoughts. Thank you.

[DorsetLady PMRGCAuk volunteer]

Absolutely...and for all you know 4.5mg might have only just been enough to keep things at bay, so as PMRpro says it only take the smallest change for the bucket to overflow!

Plus how slowly did you actually reduce? - DSNS or mine?. They were devised for a very good reason.

[powerwalk in reply to DorsetLady]

I did the slipping in the 4 for a few weeks on and off then a bit more. Then tbe few days on the 4. Probably not strict enough. I will wait til i finish work to try again. Its not worth this. Thank you.

[rick518 in reply to DorsetLady]

I have found on the forum DSNS but what is 'mine' please.

[DorsetLady PMRGCAuk volunteer in reply to rick518]

This -

healthunlocked.com/pmrgcauk...

[Hidden]

Hi powerwalk

This is the situation that most GP’s & Consultants simply can’t understand, my lovely consultant who died earlier this year was a fan of alternate days so you could try 4mg one day & 4.5m the next if that doesn’t work, go back to 4.5mg & stay there until you want to try again. Dr L also told me l might be on 5mg for the foreseeable but in time l might gradually get it lower.

5mg or 4.5mg isn’t the end of the world, that’s where I’m aiming for again as l was doing well on 5mg until l had the ‘unexplained episode’ l’m now back at 7.5mg & probably won’t start the Slow Taper to 7mg until after Christmas as that always brings its own issues & most people suffer from Stress at Christmas!

Best Wishes

MrsN

[powerwalk in reply to Hidden]

Oh yes my gp thinks im lower at this stage! But no. It just doesnt work at the moment. Thank you. Take care.

[Longtimer in reply to powerwalk]

It doesn't work...it's the steroids that are in charge!.....0.5mg makes a huge difference to me.........and I take weeks to drop that. Then I stay at new dose several weeks before even trying again....like now with Christmas coming won't attempt it till after January.....

My son is 50 at beginning of January....we have big surprise for him.....so bit nervous about that...so will drop after....too much excitement!😁

[powerwalk in reply to Longtimer]

Oh yes. Don't risk it.

[peace_lover]

Oh yes it can, speaking from experience. I dropped from 9mg (where I wasn’t entirely happy but ignored the signs, silly me) to 8.5 and had a full blown flare. Had to go up several mg to get it under control and now on 11mg and staying there for a while before reducing again.

If you are good at cutting pills, perhaps a quarter 1 mg pill might be an option as SheffieldJane says? Or try a DSNS method if you’re not already using it. Best of luck.

[powerwalk in reply to peace_lover]

Yes. Will wait now for a bit to try again. Scary whats there behind the pred!! Thank you.

[Rosbud in reply to peace_lover]

I'm also on 9 but trying to drop to 8.5 , took 8.5 yesterday and today am in agony with my hips and shoulders , so will stay on 9 and try again in A couple of weeks,it's A b....r but with Xmas coming don't want to rock the boat x

[peace_lover in reply to Rosbud]

It’s just not the right time to try. And quite frankly staying at 0.5 mg higher than you wanted isn’t going to rock the boat in the greater scheme of tapering, is it? Best of luck!

[powerwalk in reply to peace_lover]

Yes sad but true!!

[Grants148]

Yes 1/2 mg certainly can make a big difference,it happened to me.l was on just 3 mg .for quite a few months and then tried to lower the dose ,this caused a flare and l had to increase to 5 mg.l am going to find it very hard to get down to 3 mg.,again.l had managed to get my weight down but it has now increased and l am finding that uncomfortable as my stomach gets very bloated on the 5 mg.,of Pred. Good Luck powerwalk !

[powerwalk in reply to Grants148]

Oh i know exactly what you mean. Stomach is not good for me. Really feel like im pregnant without the baby! Thank you.

[Mrs-CJ]

Below 5 mgs I am only able to drop by 1/4 mg using DSNS. As long as that works I’m happy 😊

[lizg0017 in reply to Mrs-CJ]

sorry, but what does DSNS stand for?

[PMRpro Ambassador in reply to lizg0017]

Dead Slow and Nearly Stop - a slow approach to reducing

healthunlocked.com/pmrgcauk...

This is a link to the original, other options are available

[aladymo in reply to PMRpro]

When dropping from 70-60-50 etc , instead of dropping 10 at a time,( Per month) would this dsns be feasible?

[PMRpro Ambassador in reply to aladymo]

Probably - especially if you feel the drop, it is fairly big even at those high doses. Or do 5mg every 2 weeks with a shorter version.

[lizg0017 in reply to PMRpro]

Wow, this is great. Thank you. I just reduced to 5mg this past Thursday. Feeling not quite as intense PMR onset, but similar arm, wrist, back of thigh pain along with major fatigue, sadness. I'm going to take this beast into my own hands and go back to 6mg following the DSNS approach. What have I got to lose other than a little time. Thanks again!

[AussiePolyDee in reply to Mrs-CJ]

Hi, I have a 'pill cutter' and also only dropping by .25mg Have been on pred for 8 + years now and whenever did dsns got to under 3mg would 'manage' to have a flare. So pred back up again.

The community pharmacist told me to try 1/4mg drop instead of the 1/2mg and so far so good...... fingers crossed. My GP said that amount 'negligible' but he hasn't had pmr and tried reducing pred.!! I am tired but happy getting down a bit. Rheumy said happy if I was under 10mg. .... even happier if I managed 4mg..... HaHa.... lets see.

Hope everyone been keeping well as I haven't been able to log in to read for last couple of months. Regards to all....D

[Tonysue]

I was down to 5mg and very stiff and my rheumatologist told me to stay on that dose for 3 months which I did and then felt much better so started reducing .5 a time DSL’s way. I’m on 3.5 now but when I drop that .5mg I immediately get symptoms back. So i’m not going to try to reduce again until I feel confident enough to start again. Always get reassurance from this site. I’m quick to cry and lose patience. Specially in the evening. Feel guilty too as see others who are much worse off. Dory’s advice when they were finding Nemo was “Keep on swimming “. So we do don’t we.

[powerwalk in reply to Tonysue]

Sooo true. Losing patience at times too. Sometimes it just hits that this pred is whats keeping us ticking over.

[DLeaMac in reply to Tonysue]

I have had PMR for over 5 1/2 years and it has truly taught me patience. I had a few flares mostly caused by my impatience. The last time I got to 5mg I stayed there for around 6 months. I then started a decrease of

1/2 mg using an even slower method than DSNS or Dorsetlady’s that I worked out for myself. Once I reach a whole week at the lower dose

(ie: 4 1/2 from 5) I stay there for 4, 5, 6 months or longer until I’m feeling really good (as I can be) with no stressors in the immediate future then I start again. It is a very slow process but I have been able to avoid the up and down seesaw and have noticed that my body and mind are happier. My memory is better, I don’t get quite so tired and have finally been able to lose some weight so I look about 6 months pregnant instead of 9 months😛

I should note that I am trying to reach the lowest dose that will manage my PMR and I’m prepared to take prednisone forever if necessary.

Best of luck with you decreases and take good care of yourself.💕

[powerwalk in reply to DLeaMac]

Thank you. Yes I am looking forward to finishing work in February - so that I can at least pace myself better. My stomach has been very bad between thePred and the antibiotics I've been taking for almost constant UTIs. Thought I might manage to at least get one of them down!! Ah well net time!

[Roxyart]

I'm sure any reduction once you get low especially under 5 will start to cause a flare-up this is the first I've heard of Keflex for UTI prevention does that mean you've gotten frequent UTIs

[PMRpro Ambassador in reply to Roxyart]

Only if the new dose is too low to manage the inflammation. You might notice steroid withdrawal more as the percentage change in dose is greater - but that is the idea of the slow reduction approaches and if the plain version doesn't do the trick - slow it down even further,

[powerwalk in reply to Roxyart]

Keflex is an antibiotic. Used at higher doses to get rid of UTIs and now on a lower dose to try prevent them. Yes absolutely constant UTIs. More with them than without them. So not helping the fatigue or the stomach!!

[Hidden]

I would say yes. I’ve been trying to get to 5mg from 7 had a couple of failed attempts ...

if you th8nk about it the %s are higher.

I’m trying a 1/2 reduction every other WEEK next time.

Good & luck keep trying x

[powerwalk in reply to Hidden]

Yes I will. Get there eventually. Hopefully. My rheumy took me off pre completely over a year àgo - according to her I was now cured after 12 months. She must have been off her head. I was in a dire state. My GP gives me the prescription now with the talking to to get it down!!!!! Thank you.

[PMRpro Ambassador in reply to powerwalk]

Shame she doesn't know a bit more about her supposed specialist subject isn't it?

[piglette in reply to powerwalk]

I am just appalled at your rheumy, she really does not deserve to call herself a specialist.

[powerwalk in reply to piglette]

Couldn't agree more . She told me to "get my arms moving". I could just about function. And I had to pay her a decent sum for that!!!!!!

[karools16]

Yes, 0.5 does make a difference, as I recently discovered. Was doing DL taper from 7mg Pred to 6.5...GCA. After 3 weeks, and seemingly, doing well, I had a flare. Went up to 10 for awhile and now on 9. Now waiting until after the festive season. Hope you do well.

[powerwalk in reply to karools16]

Oh no. How disappointing for you. Seems to be the way of the beast. Unpredictable. Thank you.

[karools16]

No, not disappointed, really. I will be on Pred for life. Last year, my S.Test showed I have Addison's disease, and will never be able to taper beyond 5 mg Pred. Am ok with it.

[Grants148]

I may try the DSNS approach,l never thought of lowering by just1/4 mg.nevertheless l am afraid of another flare as If that happens l may end up having to take more than 5 mg.The tinnitus in my head was much worse during a flare and my pulse very irregular but l did manage to reduce to 3 mgs.,once without that problem.

[PMRpro Ambassador in reply to Grants148]

I find that if I reduce my pred dose too far my atrial fibrillation (a/f) is much worse - so I discussed it with the rheumy, who looked confused and admitted he had no idea, and with my cardiologist. She agrees with me that the autoimmune part of the vasculitis underlying PMR and GCA almost certainly is linked to the a/f and if more pred controls it she is delighted since she can't offer me anything any better.

Both your arrythmia (the irregular pulse) and the tinnitus are signs that the vasculitis part of your illness is probably flaring and contributing. If they get worse you should take them as signs of a flare and discuss it with your doctor.

[Grants148]

Thankyou PMRpro,l am afraid to lower my dose because of this,it seems settled at the moment on 5mg.,of Pred,l also experience numbness across my face when l do get a flare. I hope to discuss this with my doctor next week.