I'm back with a diagnosis of PMR: My journey with... - PMRGCAuk

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I'm back with a diagnosis of PMR

Duffer55
Duffer55

My journey with PMR began in Oct 2018. Sudden onset of bilateral symmetrical pain in shoulder and pelvic/hip area. Prednisone was prescribed initially with relief from pain. I saw several providers who weren't extremely helpful and did not seem to have a good skill set into PMR. I found Dr. S who is wonderful and very thorough. I have had numerous xrays and blood work to rule out other problems. He fast tracked me to see a rheumatologist who is also very good. Bottom line is I have my diagnosis of PMR. He set me up with a dose of 25 mg prednisone which I split the dose; 15mg at 6am and 10 mg at 6pm. That worked wonders for me. Major pain was gone and my mobility was back. I just tapered to 20mg taken in the AM. I am a bit concerned that it is to much but willing to give it a try. So far so good after 4 days although I do feel some twinges of discomfort, but nothing like I had. My providers do not have a problem with how I dose it if I want to split the dose or take all at once. Rheumatologist wants me taper again to 15mg in one month. I think that may be too fast but we will see. I have been able to go on short term disability for now so I do not have to work for now. I am extremely tired and have issues with high blood pressure and tachycadia. And brain fog.

I continue to follow the forum and it has been extremely helpful. Thanks to all for your wonderful input. Duffer55

29 Replies
oldestnewest

My rheumie wanted me to go from 20mg to 15mg which was too much for me although I have a friend who happily went from 15mg to 10mg with no problems. I think it just depends.

PMRpro
PMRproAmbassador in reply to piglette

I did 15 to 10 after 2 weeks. Did 10 to 5 another 2 weeks later - I have never managed to do it again after I flared at 5 to zero. Never done a 5mg drop since...

DorsetLady
DorsetLadyPMRGCAuk volunteer

Personally I think a 2.5mg taper from 25mg is better - nearer the 10% reduction we’re always banging on about, but some do manage okay.

Then I would continue in same vein until I reached 15mg - but as I say that my opinion only - many Rheumies would throw their hands up in horror - but as we know, they don’t always get it right!

Where are you based Duffer 55?

Duffer55
Duffer55 in reply to Marilyn1959

Midwest usa

USA Midwest. I was thinking going slower would be better too but I am willing to try it there way. I will not hesitate to bump back up if I need to. Dr s is willing to let me figure it out. I’m seeing a nurse practioner who works with rheumatologist. In my area there is usually a 6 to 9 month wait to see rheumatologist. He is overseeing my care through her. She is the one who suggested the taper by 5 mg for 4 weeks, then reduce by 5 mg for another 4 weeks to get to 10. Then reduce by 1 mg.

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to Duffer55

I think she may be a little optimistic - but you won’t know unless you try!

Trouble is, the damage is done by then - and you can end up at the beginning again. Which is a waste of time, and actually defeats the object of reducing your overall intake of steroids.

PMRpro
PMRproAmbassador in reply to DorsetLady

You are the mistress of understatement!

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to PMRpro

Do my best!!!!!!!

Duffer55
Duffer55 in reply to DorsetLady

That’s what I’m afraid of. 25 mg for 4 weeks and I was feeling good except for fatigue. If 20 mg works, I may opt to stay on 20 for awhile. What would be optimal time to wait to taper down to 15 mg be?

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to Duffer55

Couple of options really stay at 20mg for 4 weeks as advised, but then do two tapers of 2.5mg rather than one of 5mg (again monthly), or

stay at 20mg for 6 to 8 weeks and then try the 5mg drop.

My preference would be the former - a smaller taper is always better to my mind. Easier on the body and illness.

The aim once you’ve got the initial inflammation under control is to reduce slowly to find the dose you actually need on a day to day basis. If you taper in too big a drop you may well go past that dose. For example In your case -17.5mg may be just right - but if you reduce in one drop from 20 to 15mg you will have gone past it and 15mg may not be enough. You then get a flare.

PMRpro
PMRproAmbassador in reply to Duffer55

It isn't how often you drop, it is the size of the drop that concerns us - 5mg at a time is simply far too much for comfort. You risk experiencing steroid withdrawal - which is so similar to a flare you don't know where you are. The advice from top experts is to limit drops to not more than 10% of the current dose - and 5mg is 20% at 25, 25% at 20. Doing 2.5mg twice would be far more sensible.

Suet3942
Suet3942 in reply to Duffer55

I started on 15mg and dropped to 10 after 3 months. Mind you, after 5 years I’m still at 9 after 2 flares when down to 5mg. Onward and upward!

I’m inclined to stay at 20 for 8 weeks to make sure I don’t flare then I’m going to push for 10 % taper until I get to 10. How many weeks should you trial before tapering again.

HeronNS
HeronNS in reply to Duffer55

I doubt you'd need to stay at 20 as long as eight weeks. Once your symptoms are as controlled as they are going to be, and you've been stable for a few weeks, it's probably safe to taper once a month, in that recommended 10% decrement. At lower levels, below 10 mg, one of the slow taper plans patients have developed may be advisable. They help you find your lowest best dose and reduce chances of flare.

Welcome back Duffer55. At least now you have a diagnosis and a couple of healthcare professionals that work with you....that goes a long way.

I started at 20 and went down to 15 in one drop after 3 weeks, on my insistence despite GP wanting me to stay at 20 (silly me, very early days, was afraid of pred). Then my (former) rheummy told me to drop down to 10......flare, back up to 15 again for 5 weeks (just as Dorset Lady described).

From then I dropped by 1.25 increments (13.75, 12.5, 11.25, 10) by cutting 5mg uncoated tablets in 4 (rheumy refused to give me 1mg tablets). The drop happened every 3-4,weeks. Now I drop by .5 every month.

Finding your ideal dose can be a matter of ongoing experimentation. I’ve taken mine all in one dose upon rising, spilt morning evening, 4-6am in one dose, and currently taking 7 at two am and 2.5 at 4pm. I’m pretty much pain free till midnight.

Listen to your body, symptoms rule. I’d try less if a dose drop before a steeper option. Keep us updated and ask anything. The collective wisdom of these folks is outstanding, and we will “get it” more than most.

So far so good. I’d be worried about spoiling it too. Have a look at tapers on the PMRGCAUK website and sell one to your Rheumatologist , much less likely to flare.

Hidden
Hidden

I am from the Midwest ... Iowa to be exact. I am new to the forum but 10 years with a PMR diagnosis and 20+ years of prednisone experience. For what it is worth, slow tapers are probably better for PMR. On the other hand, 20 years ago, I was able to go from 100mg to 0mg in about 2 months. That was for something else ... not PMR.

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to Hidden

Yes you can reduce quickly.

But the point is, it was for something else- as you say PMR is different- and that’s what many doctors don’t get!

Most illnesses are cured by the medication, PMR and GCA aren’t- only the inflammation caused by them is CONTROLLED by the Pred, the underlying disease is not. Somewhat different.

Hidden
Hidden in reply to DorsetLady

I'm not sure the other inflammatory condition was ever "cured" either. I think it just stays in remission with low dose daily prednisone. It behaved very differently compared to PMR. It would pounce and was very vicious but quickly retreated. PMR seems to be always stalking. After 10 years, I am still confused by it.

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to Hidden

No it probably wasn't - I think AI diseases are like that. I meant illnesses and medication in general. Not very well expressed.

Morning Duffer, you have my once upon a time symptoms though once very quickly diagnosed, I was prescribed 20mg of steroid ( pred ). The instruction was to stay on that for 1 month then reduce by 1 mg a month. It works though I`m now at 2 mg per month and am beginning to notice a few strange stabbing pains / bruise / joint issues, so long as I can identify why, I`m OK. But it`s nothing like the almost rigamortis feeling when I was hit with it.

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to Oldman-1

Just be a big aware though. Sometimes it difficult to know at such low loses what is normal aches and pains and what is the beginning of a flare.

If you suspect the latter then act quickly to catch it!

Hi DL, you seem in fine song - how are you with your op?

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to Telian

Good thanks, third full day at home, and coping well.

Jackoh
Jackoh in reply to DorsetLady

Great!! Xx

Telian
Telian in reply to DorsetLady

Well done you, didn't expect anything else though! X

Hi, Neighbor! I'm in MInnesota and need to add a word about seasons and PMR. In addition to slowly tapering, consider the time of the year. I have found I have to take a little longer at a comfortable dose before trying a reduction as we move into a new season. My rheumy had advised me to hold off on a taper until spring in one case. He has been very supportive of slow taper and staying put at a dose that works until optimum conditions are there for the next step. Length of time on that dose, holidays, other stresses, climate all play a role in succeeding at a reduction, so it is nice to have support for taking one day at a time. Do get really comfortable at a dose before moving on, you won't regret it. Glad you have a diagnosis and can get this under control.

Your case sounds exactly like mine, though still waiting for a diagnosis. See the Rheumatology consultant mid March and been having symptoms since Oct 2018. Immediate relief with steroids, been given by my family, then visited GP which took over a month for them to agree. I am a nurse consultant myself though this is not my area of expertise, I am very familiar with the use of high dose steroids. When the GP eventually agreed, I started on 30mg pred for 3 weeks, told to reduce by 5mg but after reading the posts here, reduced by 2.5mg weekly. Got to my second week of reduction (25mg) and within 5 days just felt extremely unwell, fatigued, ?getting a cold? And some aches/pains returning, plus insufferable insomnia, waking up between 3-5am daily. As I work full time, I was exhausted and very irritable. So I increased back to 30mg and improved within 3-4hrs, amazing. So as a health professional myself, I am still finding it difficult to get the appropriate stock of pred and I constantly need to chase my prescriptions. I am going to ask for 1mg tablets so I can reduce even slower. This forum definitely provides good sensible advice and can give confidence to all when dealing with health care professionals who do not have the experience, though I do sorry about others who are pushed away etc and the serious consequences they may encounter. Thank you to all who contribute.

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