Reducing in the beginning

[3daysinjuly]

What criteria do I want to meet for a minimal reduction from 15? It has been 23 days. Should I be totally free from stiffness to go 1 or 2 lower? I have some wrist and finger stiffness in the a.m. Or is low level sed, crp, what is looked at. Last taken 10 days ago they were in normal range. Would like to begin a taper.

[piglette]

A lucky few can take pred and completely get rid of the pain, the rest of us are not so lucky. If you can improve things by 75% that should be a minimum. You should be able to start reducing between four and six weeks if you feel comfortable. Some people can reduce by 2.5mg some people need to go slower. A friend managed to go from 15mg to 10 mg in one go, or so he says. The important thing is not to reduce unless you feel comfortable and if you have pain STOP.

[3daysinjuly in reply to piglette]

Thanks piglettte. 75% is probably accurate as of now. I was closer to 85% but 4 days ago I decided i would rather take all 15 in the am rather than the 10am and 5 pm that I had been doing. I reasoned that this would make the tapering a whole lot less complicated. So that could account for the morning stiffness.

[3daysinjuly in reply to 3daysinjuly]

Just as an aside, before I knew what I had and the gp did not either which was pitiful since was in horrible pain and stiffness, I took one naproxen. I had 2 days of being totally pain free. So I guess since it is a strong anti inflammatory there is something other than pred. But I would never take it again. Hurt stomach badly.

[piglette in reply to 3daysinjuly]

If Naproxen worked it is very likely it was helping something other than PMR. It is a pretty nasty drug, I agree.

[3daysinjuly in reply to piglette]

Oh, it worked. But wouldn’t PMR respond to an anti inflammatory like Naproxen??

[PMRnewbie2017 in reply to 3daysinjuly]

No because Naproxen works by blocking prostaglandins. PMR is caused by cytokines, in particular Interleukin6

[PMRpro Ambassador in reply to 3daysinjuly]

Theoretically yes. In practice, very rarely.

[PMRCanada in reply to 3daysinjuly]

I took 1000mg coated Naproxen for 5.5 months prior to diagnosis. It only provided minimal relief. When I took pred, I was about 80% better in 24 hours.

I was advised by former Rheumy to drop from 20-15 after four weeks. No problem. Then told to drop 15-12.5, big problem, flared, CRP raised back up to 15 for 5 weeks.

Next time I dropped by 1.25mg (I only had 5mg tablets that I cut in 4). Went from 15-13.75-12.50-11-10 over the course of about 3 months. No problem.

Watch your symptoms and monthly CRP and ESR helps if they are accurate (mine are).

Now I am tapering .5mg each drop about every 3-4 weeks with a transition week in between. Currently at 10/9.5

I’ve never been completely free of pain and stiffness but certainly I can live with it and it doesn’t prevent me from deep water exercise class, walking, etc. don’t lower if CRP is up and/or symptoms are worse.

Many more have additional wisdom. All the best on your first taper!

[3daysinjuly in reply to PMRCanada]

Thanks. But now I can’t help but think why did one naproxen take away all PMR symptoms for 2 entire days.

[PMRCanada in reply to 3daysinjuly]

I did have one 2 day stretch where it helped?? And I also had one full week where I had no symptoms at all while on normal dose of pred, but was sick with a cold. My theory is that my immune system attacked the new cold virus, leaving my major joints alone. As the cold got better the mild PMR stiffness creeped back in.

I have read on here that PMR surges and flares on its own in our bodies. Maybe it also lessens at times.

I’d be taking Naproxen for a couple days....if complete relief occurs, then likely not PMR (in my humble opinion).

Please let us know how you make out.

[3daysinjuly in reply to PMRCanada]

The ONE time I took it really hurt my stomach. I am probably dreaming that it is not since my symptoms are classic but still.....

[piglette in reply to 3daysinjuly]

Do you have arthritis, or perhaps you had a bug?

[3daysinjuly in reply to piglette]

Not sure what you mean but I have some arthritis, not in any way debilitating.

[piglette in reply to 3daysinjuly]

Probably arthritis was a bad choice, I was just thinking of things that might be helped with Naproxen. I suppose it would have carried on afterwards, it had to be something that lasted a short time.

[3daysinjuly in reply to piglette]

Well, all I can say is all the pain and stiffness went away on one naproxen. But after 2 days it all came back and that is when I found a rheumie who said PMR and I started pred, which, of course, worked right away.

[HeronNS]

Well, first of all, your doctor should be advising you on this. I know many people here have had problems with their doctors but not everyone does and I believe most doctors would keep you on the starting dose for at least a month. There are different ways of reducing from 15. Some will suggest 2.5 but I personally think this is often too much. Too many people experience increased pain, whether from pred withdrawal or a PMR flare, when reducing by more than 10% at a time. I was able to taper, after five weeks at 15 mg, by 1 mg a week until I got to 10 mg. Even that may be too fast for some people and you may want to stay longer at each level. I also was lucky in that ALL my aches and pains went away, even those which had nothing to do with PMR. Some of these, notably osteoarthritis, came back later, but not until I was at a much lower level. I used a very slow taper method after I got to 10, because 9 was a step too far. So I think it would be wise to stay at your current level until you are sure that the slight discomfort you are feeling in the mornings doesn't get any worse. Does that stiffness disappear a few hours after you take your dose and do you feel pretty well most of the rest of the 24 hours?

[3daysinjuly in reply to HeronNS]

Yes when that dose kicks in and I am up and about it is 90% I would say. One doc said 2.5 but yeah maybe less.

[HeronNS in reply to 3daysinjuly]

When you do come to taper if you do 1 mg a week that adds up to 2 per fortnight, which is very close to a 2.5 taper if you are tapering per fortnight. If the 2.5 was for a month then you may even be lucky and find that you can manage to taper by three or four in the time. But nearly all of us have to slow down drastically at some point and it is often around the 10 mg level. although we're all different!

[3daysinjuly in reply to HeronNS]

Makes sense. Thank you The first rheum actually said if I feel ok try 10 but I fired him weeks ago.

[PMRpro Ambassador]

Significantly reduced and stable symptoms really. Most people would do 4 weeks and then start the taper. Where were your ESR/CRP originally? They should be low and not continuing to fall - my normal is low single figures, so 16 is well in normal range but high for me.

[HeronNS in reply to PMRpro]

My doctor (and I) went by symptoms. I think if I had waited for the test results to come back as low as they were going to get I'd probably have been waiting for months to taper, although I felt very well.

[3daysinjuly in reply to HeronNS]

Good point. Thanks

[3daysinjuly in reply to PMRpro]

I would like to know what you think of piglette saying that if one naproxen pill gave me 2 days of total relief from PMR symptoms it was something other than PMR. Just curious on your take. Thanks

[PMRpro Ambassador in reply to 3daysinjuly]

I agree with her - it is enough to suggest it MIGHT be something else and my first thought would be a spondyloarthropathy, some of which respond very well to Naproxen and for which there are other much better options now. You wouldn't be the first on the forums to be diagnosed with PMR that eventually turned out to have been late-onset ankylosing spondylitis...

[3daysinjuly in reply to PMRpro]

Well, I will stick with the diagnosis of PMR. AS is no day at the beach I see. By the way, my morning hand and wrist and elbow stiffness

continued again today. I hope I didn’t make a mistake by switching from 10 and 5 at night to all 15 mg in the morning. Or maybe I just need to allow for the adjustment. I hope so. I want to begin to taper in a week.

[PMRpro Ambassador in reply to 3daysinjuly]

Depends how you look at it doesn't it? There are other drugs that work better for AS so it isn't necessarily worse. Well managed something else or badly managed PMR?

[3daysinjuly in reply to PMRpro]

So the key, as has been said on here a million times, is to manage our PMR well. I am trying, and learning, and hoping not to make too many mistakes along the way.

[3daysinjuly]

Yeah, normal for me as I look back at those numbers from many years ago is very low. So even 3.4 crp down from 15 when I was first diagnosed is probably high for me. But then again I am inflamed now. And the 13 sed is probably not normal for me either. Thanks.

[dancersize]

I was diagnosed in July 2017 and put on 15mg. I think the inflammation was 37.I was amazed because I could move again without too much pain. Before the pred I couldn't get up from the toilet and had flares most nights so I was very happy. My rheumy had me on 15 for a month, reduced to 12.5 for a month and then 10. I was thinking, that this was going to be easy. No problems with the reductions until I tried 10 to 9. Been very gradual since and when a problem occurs I go back to previous level until things settle then try again. Now comfortable on 6 and trying for 5.5. My rheumy suggested staying on 5.5 for three months since last time I had some niggles. See her again in December. I have tried splitting my dose so I take 1mg before bed then 5 with breakfast and that helped the morning stiffness.