Can't seem to taper
Posted , 12 users are following.
I'll admit to some envy of the many posts I read, "I started on 20 mg of prednisone, now I'm down to 3 but can't get to 2." In my case, I started on 20 mg two years ago and was there for a year. My GP never mentioned tapering. He seemed to think it would all resolve on it's own. He became alarmed after a year and gave me a schedule which didn't work. I had been in pain at 20, and by the time I got to 12.5 I couldn't function. After he retired, a new GP thought I should go to 40 and "blast out the inflammation." I did that and felt good until I landed in the hospital with peritinitis. They got me back to 20 in the hospital, and since then, 6 months ago, I've been doing the dead slow taper. Got to 15 fairly easily, am now at 13.5 and in moderate pain. Want to continue, because I need surgery and the surgeon wants me at 7 or below before he'll see me again. That seems like an impossibility at this point. I'll try 12.5 this week, but wondering why I'm stuck at the high numbers while so many others seem to be able to get to the lower numbers relatively quickly.
0 likes, 27 replies
dan38655 susan29426
Posted
I think that you managed your taper well since you were able to taper to 13.5mg, and remember that the underlying condition most often fades over time to allow you continuing with your taper.
Dropping to 7mg may be painful, possibly almost like going un-treated. I don't know anything about your surgery or why the pred dosage has to be at 7mg for that.
Each patient is different, and each case of pmr has it's own chemical and genetic story to tell below the surface. Dosages reported here by each of us also reflect how actively our particular body chemistries respond to the pred, and are also proportional to our individual blood volume and muscle mass, among many other factors.
How unfortunate that your surgery seems poorly timed with your particular pmr journey, I hope that all goes smoothly and that your surgery and pmr are soon in the past.
macas02 susan29426
Posted
Susan, I have been trying to get to NIL for close on 7 years, Its been a very "up and down" ride. I am in 2mg now and have been for many months but am still having days wwhen I have to take a higher dose and thentaper back again. we are all so different but its such a frustrating illness, All the support o this forum is great and I it helps to be able to talk to like minded people. The sentence that helped me most was from Eileen, she said "make pred your friend dont rush to get off" and then I unserstood that I had thought of it as my enemy...
Good luck hope you feel better soon.
Mary
Jan20533 macas02
Posted
Hi Mary
I love the sentence you've pointed out from Eileen, I didn't see that post
. I was diagnosed relatively quickly and was relieved by the immediate impact of preds so I definately see pred as my friend. From reading some of the discussions it's a rather scarey even considering lowering the dose. As I don't have any current visible side effects, been on preds for c6 weeks, why and when should I consider coming down from my 15mg daily dose? Really keen to hear some good positive stories - are there any out there? 
. Thanks all.
Jan
Anhaga Jan20533
Posted
Really, your doctor should have told you when to try the first taper. My experience - one week of the 15 mg trial - miracle! Then four weeks at 15 mg, followed by tapering 1 mg per week for five weeks. When I tried to taper to 9 I experienced returning pain. My doctor had told me to stop tapering if I noticed returning pain, but hadn't said anything about increasing the dose again. Found this forum in the middle of a sleepless night. Upped my dose to where I was last fine, 10 mg, thanks to only tapering 1 mg at a time I knew this, and a few weeks later started the Dead Slow Nearly Stop plan, which I have followed, with my own customized tweaks, ever since. Journey started in June 2015. So it seems like you should be at the point where you could try a small step down, but only if your symptoms have been well controlled for some time.
Jan20533 Anhaga
Posted
Sounds like good advice and you know what you're doing after almost 2 years. Have you experienced any side effects? My ESR has reduced from 65 to 14 in a month. Doc suggesting staying on 15mg until next blood tests in 4 weeks then looking to taper. Counting back this is my 6th week so starting to taper at 10/11 weeks if blood tests are favourable.
J
Anhaga Jan20533
Posted
I did have some side effects, some of them potentially fairly serious, which is the main reason I've plugged away at the taper, even sometimes when I could have gone a little slower. I had a diagnosis of bone thinning, which might have been starting anyway but I think the pred accelerated it (stopped that in its tracks by exercise, supplements and nutrition no drugs) increased ocular pressure (not quite glaucoma but my ophthalmologist brought me in for more frequent checkups until things settled), high blood sugar (again, not quite diabetes, but high enough to be concerning and I cut back on carbs, especially grains, drastically). As for visible symptoms, I didn't gain weight (no carbs!) but I have noticed some muscle wasting, and I am weaker than I was, but as Eileen likes to remind us, I'm also older
and for a while I got some small red bruises on my arms, but the skin did not break when bumped, a few people get such fragile skin they bleed easily from a small bruise. I can't remember anything else off hand.
Oh - when I first started I felt so brilliantly well, better than I had for many years, my husband said I was like Energizer (or Duracell on the Eastern side of the Atlantic) bunny. That energy has long since vanished, along with the other less salutary side effects! Another good side effect was my chronic itchy skin (dry skin I guess, worse in winter) went away, but has been returning recently. As a life long intermittent insomniac I wasn't much troubled by sleepless nights, another possible side effect, and since I started taking a calcium dose near bedtime I sleep very well.
Anhaga Jan20533
Posted
EileenH Jan20533
Posted
Jan20533 EileenH
Posted
I'll need to get some 1mg tablets, only have 5's at the mo. Thanks Eileen you've helped set my expectations.
EileenH Jan20533
Posted
Have you seen the Dead slow approach?
https://patient.info/forums/discuss/reducing-pred-dead-slow-and-nearly-stop-method-531439
macas02 Jan20533
Posted
Hi Jan, It was my friend as far as the pain but when I looked n the mirror I hated it. I had a huge face and a body shaped like a lemon !!! Its not much better now but I am trying to follow the "No Carbs" diet.
I only found this forum about 3 years ago and its been invaluable. There are lots of posiltive stories and I.m sure someone more able than me will advise you on reducing safely.
Mary
Anhaga susan29426
Posted
American Academy of Orthopedic Surgeons says on their website preparing for surgery:
Steroid Medications
If you have recently taken a course of steroids or are on long-term steroid therapy, make sure to tell your surgeon and anesthesiologist. Steroid medications, such as Prednisone®, should be continued both during and after surgery. Most likely, your surgeon will give you additional doses at the start of your procedure. This is because long-term steroid therapy suppresses the adrenal gland, which manufactures the steroids your body needs. Inadequate steroid levels during surgery can lead to hypotension or low blood pressure.
Loves_Golf susan29426
Posted
How sad,Susan, I truly sympathize with you!
Don't you think it's all a result of your being way too long on 30mg., then that jump to 40? Your body loves more and it is likely what's revolting, not the PMR.
In my case, the pain wasn't/isn't at all the same as my initial PMR pain. Phantom pain is real, and horrific at times, as the body screams for more. .
Does your current doctor do blood work? The two tests which routinely check my levels are: C Reactive Protein and Sed Rate. I remember one time when they were elevated, and the doctor did nothing. I was in minor discomfort and the higher levels weren't a surprise. However I was not called in or told to boost my dosage. By the next visit, those levels were down--who knows why
Have you thought about reducing with the schedule that's on this site? That may be your answer.
Best of luck. I guess we are blessed PMR isn't life threatening, normally goes away, and is unlikely to return (sometimes once, rarely twice more.)
EileenH susan29426
Posted
There really aren't that many who get to 2 or 3mg easily so dn't feel too bad.
But have you never seen a rheumatologist? If you were still in pain at 20mg and really struggle to reduce below 15 then there is the possibility it isn't PMR.
What on earth makes them think you can "blast out the inflammation" using a high dose? That is like expecting your kitchen floor to stay dry after getting the fire brigade in to pump out the flood but not turning the tap off that is running into the full sink.
As for the surgery - it depends what it is but it may be worth shopping around various surgeons. Some couldn't care a toss if the patient is on pred - they just want to know so they can compensate for it.
On another forum a lady was told by her very expensive private dentist he couldn't possibly remove the wisdom tooth as she was on pred and might die (seriously, he said that!). Her el cheapo NHS dentist happily removed it for her and she has recovered fine. Often it is laziness...
amkoffee susan29426
Posted
I've been at this for close to six months and I'm on my fourth attempt at trying to get to 10 mg. Right now I am at 11 mg and starting to feel a little discomfort in my legs. But it's not something I can't handle. I am hoping that I can get to 10 mg this time. So don't feel too bad. I have certainly felt a lot like you feel now every time I read how someone is at 2 or 3 mg and they've only been at this for a year or less I want to scream at my body why aren't you cooperating with me!
EileenH amkoffee
Posted
Because it isn't your body that is not doing as you want - it is PMR doing as it wants. And that is the bottom line - you will get to 2 or 3 mg when the PMR allows. And while you may feel that it seems as if people get to 2mg in under a year - you are misremembering I fear. The people who get to 2 mg that fast don't usually come to the forum, they have no need of it, But they also probably didn't have PMR in the first place. Those who DO get off pred quickly, under 2 years, are at a higher risk of a relapse later - and since every episode of PMR can be different, that means starting at the beginning again.
It took me 5 years of no pred and then a good 2 years to get to 9mg from 15. I have been to 5mg for an extended period but then had a flare. Back to 15mg 14 months ago and I'm now trying for 6mg. You really are not alone amkoffee.