Tapering question

[PMRJ]

Tapering from 4mg to 3mg, going well EXCEPT, feel 'off,' NOT inflammation, just off my game and edgy. Anyone have input? Thanks! PMRJ

[TooSore]

You don't say how far into the taper you are- maybe just stay where you are, don't reduce further for a few days. This way you can see if it's the lower dose/flair starting or withdrawal symptoms or simply fighting some virus. I found that under 5mg I had to switch to .5 tapers. It was just easier on my system.

[PMRJ in reply to TooSore]

Thank you for the suggestion. I am almost complete on the taper to 3. Symptoms include waking very early am (4am) & not being able to return to sleep, brain foggy.

[Grants148]

HiPMRJ,I must admit that l was a lot better on 4mgs,of preds,but am trying to persevere with 3mgs as although not feeling 100percent can live with it ,as long as it does not flare up again .

[PMRJ in reply to Grants148]

What does your 'not feeling 100%' symptoms feel like?

[ConventCassie in reply to PMRJ]

Good question.

[Hindags in reply to Grants148]

That is a wonderful question. I think it deserves its own separate topic. So many different definitions depending on stage, age, and expectations. Early on when my Rheumy asked me if I had any pain, my answer was that I’m 75, and I have arthritis here and there as well as scoliosis that gets worse with age, so of course I don’t expect to be pain free.

Dirty secret is that on Pred for this past 14 months I think I’ve had less overall pain than many of the previous years. My 100% in those years was being able to stand up straight like my Mom had always told me to do and being able to turn my head well enough to drive safely.

[DorsetLady PMRGCAuk volunteer]

Hi PMRJ!

It sounds like steroid withdrawal to me. Is it possible for you to taper by 0.5mg - it really does make a difference at lower doses. At the moment you are trying to reduce by 25%, if you tried 0.5mg it would be 12.5%. Plus are you following a slow taper?

Once you get below 5mg it really is very small steps and slowly, slowly! I know we “oldies” are always saying it...but with good reason!

[PMRJ in reply to DorsetLady]

Yes, I am following that very slow taper recommended on this site via a Swedish Gentleman who got off of Pred completely using this.

[DorsetLady PMRGCAuk volunteer in reply to PMRJ]

Good, then the only thing is to try smaller reductions if that’s possible. Plus at such a low dose there is no rush, the Pred is not giving you any adverse side effects.

If you feel okay at 3mg then stay there for a little longer, and then try tapering again in a few weeks. Sometimes your body is just not ready.

I know we all want to get to zero, but don’t push things and have a setback for the sake of a few weeks.

You will get there, but when your body is ready, and maybe that time is not yet here.

[PMRJ in reply to DorsetLady]

Thank you for your wise support. PMRJ

[powerwalk in reply to DorsetLady]

Hi - How long should someone stay at each 0.5 reduction? Thanks.

[Hidden in reply to powerwalk]

I try to wait 3 weeks because it takes that long for me to be sure inflammation managed. I am currently trying dsns and have a week penned in but it feels diff doing it that way as the change or drop us so much slower and takes over a month anyway.

[DorsetLady PMRGCAuk volunteer in reply to powerwalk]

Hi powerwalk,

When I did “overnight” reductions (one day old dose, next day new dose) I stayed on each dose for about 4 weeks. That way you are sure everything is okay at that level and can attempt next reduction.

However, on lower doses when I used my slower reduction plan (which takes about 5 weeks to get from old to new dose) provided once I’d got to the end of it and felt everything was okay I’d just go straight into the next one.

It’s really up to you, but like Poopadoop says you need to be sure you feel symptom free (and if you get bloods done regularly that they show no issues) before you taper. And that takes at least 2 weeks.

I don’t know what dose you are at, but if you’re reducing by 0.5mg I guess is single figures, so take it slowly -there’s no rush. Your adrenal glands will thank you for it, and at low level you’re not getting any negative effects from Pred.

Good luck

[powerwalk in reply to DorsetLady]

thank you.

[marigoldb in reply to DorsetLady]

I have learned the lesson of tapering slowly, have taken 6 weeks to go from 5 to 4mg, and apart from the usual fatigue if trying to do too much, it’s going well. My question is how long on 4 till I try and reduce again?

[DorsetLady PMRGCAuk volunteer in reply to marigoldb]

It’s really how you feel. When I did the slow taper which took me about 4 weeks, I’d just stay on new dose for a few days and then if I felt okay I’d go on to the next one drop. However I was only tapering at 0.5mg a time not 1mg!

You just have to take account of your symptoms, or rather lack of them, and do what you thinks best. But at levels below 5mg there is no rush, the Pred isn’t having any adverse effect and really the slower the better.

[marigoldb in reply to marigoldb]

Thankyou DorsetLady, I really hope to be off steroids this year, as osteoporosis diagnosed after slip on stairs with case, led to back surgery for vertebraplasty in 2016. Asking for more physio end last year, they asked for a further MRI, which showed further fractures lumbar and thoracic area, little pain apart from back spasms when walking. Different pain of course from PMR. Seeing the endocrinologist Feb 22nd, going to start Forteo Injections.

I know it’s not definite steroids have caused the osteoporosis, but 20 years ago had PMR, on them for 3 to 4 years, and then in remission so to speak till again 3 years ago, and have been on them since, but it’s possible.

I have always been very active, loved sport when young, lots of walking with family and dogs. Would love to have another dog, but feel not fair at the present. My choc lab had to be put down 18months ago aged 12.

Sorry to go on so long, just one more thing, I think it’s a good plan to have a Dexa scan at start of steroid journey. What do you think?

[DorsetLady PMRGCAuk volunteer in reply to marigoldb]

Hi marigoldb,

Most people on here do recommend a DEXA scan, and that’s usually because Dr wants patients on Alendronic Acid, and very often it’s not required. Most people manage on VitD & Calcium supplement which should have been prescribed along with Pred.

I took AA for 4 years without a DEXA scan, but I knew I was susceptible to osteoporosis- due to family background plus hysterectomy aged 37.

But certainly request a scan.

[ConventCassie]

How does one know the difference between a "flare" and "persevere" & not 100%?

[Hidden in reply to ConventCassie]

That is really hard to answer. This week I have felt terrible. Just sickly malaise with no energy and my friend said a pallid complexion when I saw her. My sjoulders and thighs were achy and stuff and I thought i had hit taper stop.. My blood sugar was running high and my gum was a bit sore. Turned out it was an abscess under a tooth I suspect but certainly @ENT. I woke yesterday and my mouth had "goo" in it and my mouth and cheek felt better.i have been cleaning with salt water. It obviously burst and withiwithin 24hours I feel ok. I think my pain meds and the pred had hidden the infection and inflammation. Are you having more toilet trips ..uti ? or developing a bug? Or have you had a heavy carb week? I am glad I resisted messing with my dose and hoping back in the dsns after the weekend.

Of course If your fatigue etc continue at 3mg then get Dr to rest adrenal function.🌻

[DorsetLady PMRGCAuk volunteer in reply to ConventCassie]

Hi,

A flare is usually a return of your original symptom as per pre diagnosis, but not as severe, and usually occurs a week or more after you’ve tapered to the lower dose.

Not everyone gets 100% relief particularly as you get to lower doses, so perhaps sometimes we expect too much, plus the normal aches & pains of life come creeping back in. Many get full relief initially but then you have way more Pred coursing around your body than you actually need, so it’s to be expected I guess.

And I agree with Poopadoop sometimes it’s difficult to know!

[PMRpro Ambassador in reply to ConventCassie]

A "flare" tends to get worse over time, "steroid withdrawal and persevere" gets better over a week or two and "not 100%" - doesn't really matter because you shouldn't be reducing any further anyway and it will either show itself or resolve!

[PMRpro Ambassador]

Unlike the others - I'd say it is simply your adrenal glands are not keeping up with the speed you are reducing at and you are a bit low on cortisol, otherwise termed adrenal insufficiency. The smaller the step down and the longer you spread it out if you are using Dead Slow the better at this stage. Sometimes it also helps to stick at a new dose for a few weeks before continuing. Increasing fatigue and bleugh at this stage is a sign to slow down. It isn't a race and these are really low doses so nothing at all to worry about.

[ConventCassie]

I'm not feeling fatigue except after a long day at work as much as swollen hands & pain to fingers, wrists, arms & shoulders. I can work thru it, but should I? Always worse in the morning. I split my dose to hopefully improve the morning, but doesn't seem to help.

[PMRpro Ambassador in reply to ConventCassie]

Sounds as if you aren't on quite enough - and perhaps either not taking enough in the later dose or not late enough.

[ConventCassie in reply to PMRpro]

I could certainly take it at 12 or 1 am. I don't understand why it doesn't help with the morning stiffness. Maybe I should do my stretching at night instead of am. Confusing.

[PMRpro Ambassador in reply to ConventCassie]

Probably because it isn't quite enough.

[ConventCassie in reply to PMRpro]

My doc put me down to 4 from 5 and since I can't see her till 3/20 I just went back to 5. But that wasn't so hot either.

[PMRJ in reply to ConventCassie]

My Physio says stretching at night before sleep/bed is a priority for good sleep for anyone. Results--less stiffness, soreness in morning. It has worked for me! I just need to remember to do the stretchies.

[ConventCassie in reply to PMRJ]

Wow! So going to try that! Don't have a thing to loose

[PMRJ in reply to ConventCassie]

If you have hip pain the Physio recommends stretchies called iliopsoas stretch or Lying Psoas Stretch. Google them for visual demos. My hip pain is SOOO better, almost completely gone with doing these exercises. Good luck!!! PMRJ

[Grants148]

Not feeling 100% depends on the things l may have been doing, carrying shopping ,vacuuming, walking about too much can cause some pain in my arms and legs, if l just sat around all the time l would probably feel pain free but obviously that is not a good thing to do ,it is just a question of pacing myself and not doing too much at a time. I am used to this now,very frustrating when used to being very active prePMG though.