PMR for almost two years: I've been on prednisone... - PMRGCAuk

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PMR for almost two years

LThomas profile image
79 Replies

I've been on prednisone for my PMR for almost two years, I've gained probably 20lbs. I can get down to 5mg and maintain with minimal pain and then I have a relapse. My rheumatologist doesn't think it's PMR because my wrists hurt, sometimes the left, sometimes the right to the point where I can not squeeze a toothpaste tube. I also have swelling & pain in my hand along with my wrists. MRI's showed nothing. Looking on websites about PMR, wrist pain is rarely mentioned although I did see it, I think it was a Mayo Clinic website mentioned severe wrist pain. Does anybody else experience this? Other areas of pain/discomfort are my shoulders, upper back, neck, biceps and left knee being very stiff and difficult and painful to bend. Prednisone will alleviate my symptoms, I'm on 5mg now, it's not working, it has in the past and then I will have a relapse and return to a high dose, 30mg, and start tapering down. Does any of this sound familiar to anyone? Especially the wrist pain?

Thanks!

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LThomas
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79 Replies

Hi, Sorry, no wrist pain here, but I just Googled "wrist pain and PMR?" and got a lot of responses! I'd have another look and document the sources for your Rheumy.

"Inflammation in smaller joints such as fingers and wrists. Swelling in the wrist can put pressure on the median nerve, which can cause carpal tunnel syndrome"

Achy pain in the shoulders is typically the foremost sign of PMR, followed closely by pain in the areas of the neck, upper arms, buttocks, hips, and thighs, and even the wrists and knees in some cases.

"Numbness, tingling, or pain in the hand, wrist, or forearm.

"Clenching fists and feeling pain extending to the wrist can be very annoying and frustrating. Grasping strength is also weakened. These constant and irritating discomforts are signs for the patient to seek medical help."

Baileyw06 profile image
Baileyw06 in reply to

I had the wrist pain but my doctor has me wear a wrist brace at night and that solved my problem!I also use heat on my shoulders every morning which seems to help.I am on 8mg going to 7.Started at 20 in April 2017.

LThomas profile image
LThomas in reply toBaileyw06

A wrist brace doesn't help me at all, nothing helps except prednisone. I had one doctor yank me off prednisone completely an prescribe me a 100 dose bottle of hydrocodone, which I've never opened and found a new doctor! By the way oxycodone, Vicodin and the such does not alleviate the pain at all, which I'm thankful for, I hate the stuff.

Baileyw06 profile image
Baileyw06 in reply toLThomas

Your wrists have to be PMR Than.I have severe osteoarthritis in my hands and feet.That is why it helped.In the past week,I have had pain in my left hip and calf!I thought it might have been from using a stationary bike but I hope it is not from my PMR.

LThomas profile image
LThomas in reply to

Thanks for the reply! Yes, numbness, tingling and gobs of pain, I'm so thankful it has never been both wrists at the same time, used to be the left, now it's the right. When I'm feeling good, no wrist issues at all. Reading posts earlier I noticed someone mentioned shin pain, dang, I've been afraid to mention that, but yes I have that on occasion also. So thankful no issues with my hips.

in reply toLThomas

Well... there seems to be a lot or information out there {internet} to support wrist pain being associated with PMR! So I would not let your doctor off the hook so quickly, to disregard your issue as PMR! Make him/her work for that un-diagnoses! : )

Hi

Pmrpro has mentioned several times that PMR and carpal tunnel syndrome can go hand in hand (so to speak). I have arthritis in my wrists and hands and it hurts. I have used them a bit too much in past few days the they are swollen due to that and humidity. Does humidity effect yours?

LThomas profile image
LThomas in reply to

Yes! At least I think it does, I live in Florida so humid for sure. I was maintaining quite well on 5mg a couple of times within the last year and a half. We were in Edinburgh Scotland and the weather turned rainy, damp and cold, my PMR symptoms returned in a couple of days. Also last Christmas we were in Vancouver, B.C. (also maintaining at 5mg after tapering down), the weather turned rainy, cold and very damp, symptoms returned again. I've had an MRI on my wrist and it showed normal, the wrists, sometimes the left, sometimes the right are the most painful symptom I have. Shoulders are quite bad, I'm a side sleeper and have slept sitting up for over a year now, thank God for my LazyBoy recliner!

Baileyw06 profile image
Baileyw06 in reply toLThomas

Where do you live in Florida?I am in the Sunrise area.I react to the humidity like you do.This past week has not been good with all the rain.

LThomas profile image
LThomas in reply toBaileyw06

I'm west of you in the Punta Gorda area. I'm forcing myself to stay on a reduced dose, I'm seeing a neuromuscular specialist at USF next week in Tampa, my second visit to her, I guess my thought is for her to see me when I'm feeling bad.

Baileyw06 profile image
Baileyw06 in reply toLThomas

Hope she helps you!!

in reply toBaileyw06

HA! I used to live in Pembroke Pines! My daughter lives in Davie.. I head you guys are drowning!

Baileyw06 profile image
Baileyw06 in reply to

Yes,Sawgrass Mills is under water again.We are not as bad as Davie,hope your daughter is ok!Are you still living in the area?

LThomas profile image
LThomas in reply to

Yes, love the rain though, grass is finally green again!

in reply toLThomas

I'll bet and lots of gators and snakes!!! : O

LThomas profile image
LThomas in reply to

Haha, yes snakes and some gators and I've personally seen about a half dozen panthers, aka mountain lions, pumas and cougars. I watched a black snake slither in my garage a week ago, I just left the door open and hoped he'd slither on out, which I'm assuming he did. I live in the 'sticks', I'd rather have some wildlife then neighbors I guess :)

in reply toLThomas

Yeah.. I do not miss Florida at all!!!!! : ) Lived there for 32 years!

LThomas profile image
LThomas in reply to

So what area did you move to? I love where I live, I did a lot of business on the east coast, I very much dislike it until you get up to Port St. Lucie or so. I do hate the summers. I might become a snowbird and get something in Montana for the summers.

in reply toLThomas

Margate for 20 years (while raising my girls) and then Pembroke Pines for about 12 years.

Lin6075 profile image
Lin6075

I don't have the wrist pain but I do get a terrible pain in my left knee often during the nite and every morning. The dr. says that is not pmr but I disagree because it comes and goes like clockwork. When it all began, the pain was on my right side. neck, shoulder bicep right thigh leg and hip. There again the dr. said it is not pmr as it should be on both sides.

After 6 months it was in both sides

This is all very maddening.

LThomas profile image
LThomas in reply toLin6075

Mine pain/discomfort goes from side to side except typically both shoulders, left being worst. MRI on my left shoulder came back negative. Bicep goes from one to the other, sometimes in a matter of hours.

in reply toLThomas

I think it's a flitting disease. It flits from one place to another in various guises- carpal tunnel, bursitis etc.

My biceps, especially right one, was DX as muscle tear pre PMR. I have noticed that the pain follows the path of a vein/artery (rubbish at remembering which it is). But it's blue across bicep and is painful when it's in full flight.

Mstiles profile image
Mstiles

Yes I’ve also had the “it can’t be PMR pain coming back because it’s mostly on the right side, not both sides” from the rheumy when I mention this pain.

Currently on 25 mg and tapering down from 40 mg. And trying to avoid a flare. PMR/GCA since January 2018.

Hi L,

I have GCA and when I over do or get flarish (new word), my wrists and thumb joints get a bit sore. I guess it could point to a bit of PMR but no other PMR like symptoms. Just part of the inflammation process?

in reply to

Good word!!!!!

LThomas profile image
LThomas

GCA sounds very scary! I don't have any symptoms of that, thank God!

in reply toLThomas

It sucks! It's like PMR in your head, neck, behind your eye, in your temples.. even your hair hurts! I'm special (or particularly evil?) as I have both! : []

LThomas profile image
LThomas in reply to

Ouch!

in reply to

You did get slammed, just more of a Viking I guess!

in reply to

I thought I was Sicilian!!!!! I don't know where this Viking crap came from????

HeronNS profile image
HeronNS in reply to

I stand to be corrected but I think it's because there's high rate of PMR in an area of the US populated by people of Scandinavian descent. There's a term for it, which I can't recall just now, when a population has a high incidence of a certain disease, people who have come from another part of the world but one of their members has a genetic factor, the effects of which are amplified by being spread through a relatively small population, not diluted as it would have been in the home country.

in reply toHeronNS

Hmmmm? According to Ancestry.Com (I had my DNA done) I am 1% Scandinavian!

HeronNS profile image
HeronNS in reply to

Hardly significant, methinks. I bet there are other far more important factors than a trace of this or that genetic material. I blame modern life for it. And I expected Scandinavian dna, as I also have O neg blood type. But it must be hidden in the 48% of whatever it is that Ancestry called "British" or perhaps in the 48% called "European Jew". I have to say I knew more about my ancestry than the dna test told me!

LThomas profile image
LThomas in reply to

Well the Vikings were know as pillagers and rapists, just saying...

in reply toLThomas

Hmmmm? Just sayin...

PMRpro profile image
PMRproAmbassador

I have wrist pain - and much of the other sorts of pain you describe.

Do you REALLY need to return to 30mg? Most people can get away with a much lower dose for a flare providing they don't ignore it for too long and often adding 5mg to where the flare happened is enough. I had a flare about 3 years ago and 15mg was enough to manage it, this time 10mg is well enough.

LThomas profile image
LThomas in reply toPMRpro

Pro - that is exactly what I'm trying to figure out, how to manage flareups, where to go dosage wise. The smaller the dosage the better as far as I'm concerned. I was at 20 and been dropping 1mg every two weeks, I'm due to drop to 4mg this Saturday, although I might not, trying to get down as low as possible for my visit to the specialist at USF next week. She suggested a muscle biopsy. Do you know (it appears you are the resident expert) will PMR be detected with a muscle biopsy? I'm guessing not. She also suggested IVIG, but I don't think she is considering my ailment is PMR. My rheumatologist had me on Humira for a year, did absolutely nothing besides some nasty fungal infections, I've been off of it since the end of this January. I also read somewhere an affective dose is .2mg per kilogram of body weight. That puts me right about 20 mg. What do you advise for a taper, how much and how often? I have good days and bad days, the bad days are primarily when my wrist is 'killing' me. After a two day bout with the wrist, I might feel better but I'm extremely fatigued for about one day. My buddy, a retired teaching doctor is quite certain that it is PMR, for some reason the other docs don't think it is, I do believe they are not adequately trained in the symptoms of PMR.

Finding this website is a 'Godsend' for me, a heartfelt thanks to all!

PMRpro profile image
PMRproAmbassador in reply toLThomas

PMR won't show anything in a muscle biopsy - although I think there are other diseases with similar symptoms that WOULD show up on a biopsy so it would differentiate. And no - with ideas like that I don't think she is thinking "PMR".

What I meant is that adding 5mg to the dose where the flare happened is a good start - and very often that is enough. It doesn't usually work if you try to add 1mg at a time to find the dose you need to manage it - a decent step-up is far better than inching up. Yes, the smaller the dose the better - but you need the dose you need. If you are on too little you will just flare, have a return of symptoms and need to increase the dose. Let a flare get going well and you may need far more pred to control it than if you have hit it hard for a week to start with.

Personally I push for slow tapers and the version I developed is here:

healthunlocked.com/pmrgcauk...

You can try it with any size step - for example if you were on enteric coated pred before 1mg was available (you can't cut them) it works for a 2.5mg drop for many people. Now you get 1mg tablets and down to 2mg you can combine various denominations of tablet to make doses so you can reduce 1/2mg at a time - no reduction should be more than 10% of the current dose. At 10mg that is already 1mg and below 10mg you are better with less than 1mg at a time.

But a bit of sense as to whether they are managing PMR or something else wouldn't go amiss! PMR needs pred - nothing else will work. Humira certainly won't - Actemra might. Even then it is used together with pred but it allows a rapid reduction of the pred dose.

LThomas profile image
LThomas in reply toPMRpro

Hi Pro - I would be grateful if I could ask you some questions. As I mentioned I've had a bad relapse, it was my stubbornness to show my doctor how bad my symptoms are, she's only seen me when I'm feeling good on prednisone. So I continued my taper (1mg every two weeks, and now I understand that was too quick). I was on 5mg (from 6) for one week and symptoms started returning, predominately my right wrist and then progressed to the other typical areas, upper back, biceps, left knee, triceps, etc. I was stubborn and was trying to wait for my appointment (which is today by the way) and my symptoms got way worse to the point I could not tolerate it. So, last Thursday I took a 40mg dose trying to knock it out, I was successful with that dose in two past relapse episodes. I did 40 for 3 days, and now I'm on 35. My wrist pain never totally went away, maybe 95% initially, still here with today being a little worse, maybe 70% vs. 100% being gone. Every other pain/symptom has gone. I'm under the impression I must totally 'knock it out' before I can start a taper regimen. Should I have stayed on 40 for longer? Was 40 not high enough initially to get rid of all pain/discomfort. Should I stay on 35? As you can see I'm very confused except for one thing, I'm not confused anymore about what my ailment is after reading this wonderful website! Would you be so kind to give me some guidance on my initial dosing to get back on track? And how I should continue once the discomfort has stopped?

I've been successful at 5mg for a few months at a time and then I would relapse, so I'm thinking a good maintenance dose for me would be a little higher than 5, maybe 7 or 7.5, or try to work down to 5 again and bump up to 7 or so at the first sign of trouble? I'm thankful that I stumbled on this site, I've learned more that I knew in the past two years! I also learned I won't hold out for it going away after two years, now I need to learn how to manage it!

I have read in other people's posts that humidity seems to affect PMR, every time I've had a relapse it's during rainy weather. My last 'bout' was during tropical storm Alberto last week.

I didn't know if I should send you a private message or post this for public viewing.

One more thing, I had my blood drawn when I was in trouble last week and I've received the results, My C-Reactive Protein count was 25.2. When tested prior and on prednisone it's in the normal range. I also had elevated absolute neutrophils and eosinophils and glucose which is to be expected I understand.

Thanks in advance,

Larry

PMRpro profile image
PMRproAmbassador in reply toLThomas

40mg is a very high dose for PMR - it is a GCA level dose. Really - when you are deciding to ramp up the dose that far you should not do it without discussing it with your doctor - I know WHY you did it, but it isn't a good idea.

Once the inflammation is well built up it is likely to take several days to calm down again - much as it probably did originally. The tendonitis in my wrists took a few months to calm down originally - and I have never let it build up since if I can help it! But I did have a couple of flares that weren't my fault (dodgy pills and switching to a drug that didn't work for me) and it was a few weeks before the wrist pain was gone and it is the first sign I am having a flare now.

If most of the pain is gone, if it were me I think I would certainly drop immediately to 20mg for a few days - that should still be enough to finish the job if you are patient. A good guide to whether you have got the inflammation down is going to be your CRP level, it obviously is meaningful for you. Providing it continues to fall you could reduce the dose a bit which would be good. If it stops falling then that is a sign you have gone a bit too far.

Then 15mg and 10mg each should get you back to not that far from where you want to be. I'd then stay at 10mg until the symptoms are stable and then reduce slowly the last bit. It is possible that you don't even need 7.5mg - 1mg can make a BIG difference. But 5mg is obviously just minimally too little.

But tomorrow - do talk it all out with the doctor.

LThomas profile image
LThomas in reply toPMRpro

Thank you! I did get advice from a doctor, he is a personal friend. He is a retired teaching doctor from a university. When I first discussed my symptoms with him he spent time researching it. He has said right along I have a 'classical case' of PMR. He has continued to say that over the past two years. You have answered my question about 'knocking it out' or reducing the dose and 'waiting it out'. I will drop to 20 tomorrow and see how it goes. Then if pain is still abated (all but my wrists, they are very tolerable now) down to 15 and then 10 and start the slow taper from there.

How long would you suggest on 20, 15 & 10 considering it does not get worse at those levels?

Do you see a correlation with humidity?

The doctor I see this afternoon is a muscular neurologist at USF in Tampa.

Larry

PMRpro profile image
PMRproAmbassador in reply toLThomas

I think a lot of people find a correlation with humidity - and in Germany they actually have a bio-weather forecast where they give a list of medical conditions which may be problematical the next day.

It really is impossible to predict how you will get on - and we are all just patients here, albeit with a lot of experience of managing PMR and GCA. You will have to feel your way with each dose and work from there I think.

Purplecrow profile image
Purplecrow

Hi, I too, have had pain in wrists, biceps and forearms. I blame all these weird pain events on PMR. The pains come and go, without provocation, some lasting for days, others moving from location to location for brief times.

Again, this illness has yet to be fully described...rather like the blind men describing an elephant.

LThomas profile image
LThomas in reply toPurplecrow

Sorry for your pain and discomfort, but for me it's nice to hear I'm not the only one. I can tolerate all of the different areas of pain except the wrists, that is horrible. Luckily only one wrist has been effected at a time, whew!

Purplecrow profile image
Purplecrow

Sometimes, I heat a wet washcloth in the microwave, then wrap it in a small towel around my wrists. Feels so good, and helps the pain. Fyi jerri

Sheilamac profile image
Sheilamac

I don't have wrist pain, but it seems to me that 5mg is too low to mop up your inflammation. Sounds like you need to stay at 5.5 or 6mg for a while.

Ta1ch1 profile image
Ta1ch1

I do suffer intermittent wrist pain and loss of grip strength in both wrists. But my wife thinks I am beginning to blame the PMR for every little ache and pain. Weight is also becoming a problem and I am doing my best to stick to the healthier options. At 12mg daily at the moment and will be reducing that by 1mg a month. ( Doctors recommendation )

I am now convinced that there is no standard opinion of what PMR is or how to treat it correctly. At least here in South Wales UK, the rheumatologists don't want to know and every doctor I speak to has a different idea of PMR.

On the bright side, I had a 2-day remission this week and today the aches and pains are less severe than they have been recent. Onwards and hopefully upwards.

PMRpro profile image
PMRproAmbassador in reply toTa1ch1

The healthy option when on pred is low carb - and it does help a lot. I lost 35lbs using low carb and it maintains my weight now even not being terribly strict. It also helps the inflamamtion - sugar is very pro-inflammatory.

Marie1479 profile image
Marie1479

I also have PMR for 2 years. Down to 3mg along with Actemra. Getting past five was very difficult and took a couple tries. I also have had swelling in my right hand and developed knobby knuckles that I was told by Rheumatologist will go away once I’m in remission. Hang in there and listen to the Aunties. They got me thru some difficult times. FYI, I’m feeling great and sometimes forget I have that disease.

kulina profile image
kulina

Hi LThomas , sorry you feel so lousy after 2 years of treatment. At my worst, 2 years ago before Prednisone treatment, I felt exactly as you do. Everything hurt except my ankles and toes. Yes, wrist pain is an issue but even my doctor dismissed it because it's supposedly unusual with PMR. I hope you feel better soon.

kathleen18 profile image
kathleen18

I too have been suffering from painful wrist and hand. I didn't think it was anything to do with PMR but after reading your post I am beginning to wonder! Rather depressing as I have just reached 7.5mgs Pred and thought I was doing well!! My left wrist is the painful one and I get a lot of tingling at night up my arm, my right hand is beginning to get a bit painful as well which I thought was just arthritis or old age?

Telian profile image
Telian in reply tokathleen18

According to statistics 7.5 is the sticking point for some, I was lucky I got below it on a DSNS taper. I suffered with pain in both wrists and the tingling you describe came along every night as soon as I lay down, with both wrists affected it was a little difficult, had to get up or the whole arm was numb, saw Orthopaedics and had both carpal tunnels operated on at the same time, it cured it. I have to say it took a long time to get diagnosed. All the best.

PMRpro profile image
PMRproAmbassador in reply tokathleen18

That sounds a bit carpal-tunnel-ish. Ask your doctor.

kathleen18 profile image
kathleen18 in reply toPMRpro

Have just seen my acupuncture doctor and he suggested going up to 8mgs for a while and see how it goes. So I will give it a try and see if there is any improvement.

LThomas profile image
LThomas in reply tokathleen18

MRI showed no issues in my wrist, although it was swollen and very painful, I would think the MRI would show arthritic changes if I had RA or similar. My PMR was so bad yesterday, I said screw it and took 22mg, I was taking 5 and getting progressively worse. Today is my second day on 22 and this morning both wrists are painful, just like it was the first symptom to appear and the last symptom to go away. Knees and shoulders feel ok today. If my wrists are still sore tomorrow morning I'm going up to 30mg. It has been my experience with past flare-ups that you need to totally knock it out before you can start tapering down. I have taken higher doses in the past, up to 40mg and was able to knock out the pain and successfully taper down to 5mg for a few months before having another flare-up.

Leeleep profile image
Leeleep

Get a cortisol level done. If you are not producing enough on your own you will not get rid of pain. We have to be concerned about our adrenals. I was almost off prednisone and then relapsed because of this. I went back up

on my prednisone and I’m using a method called dead slow and drop. Dorset lady sent it to me. I’m not happy how long it will take but it is what it is. Good luck.

daworm profile image
daworm

thats mostly where mine has settled...wrists, fingers, especially morning...have not been to a rheumy yet so I'm trusting my Dr's diagnosis....so far...im "only" into this since Oct 17 and currently at 10mg...started at 20...I pretty much know how this works now...pay when you play, etc...since summer weather seems to have arrived I feel much better and am as active as I wish to be...sort of...fatigue is the thing I hate the most....which currently isn't too bad..

Telian profile image
Telian

Hi LThomas

Have you thought about seeing an Orthopaedic Surgeon for a second opinion? I did and diagnosed carpal tunnel, had both wrists operated on at the same time, all fixed - symptoms painful wrists, cannot grip, drop things, pins and needles as soon as you lay down in bed so up down up down all night long - no more thanks..

LThomas profile image
LThomas in reply toTelian

I did with my shoulder, my 'family doctor' was convinced I needed shoulder surgery, I had an MRI, showed nothing except a couple of minor tears. Same with my wrist, showed nothing abnormal on an MRI.

Telian profile image
Telian in reply toLThomas

I never had MRIs just normal x-rays showing wear and tear and it wasn't straight forward getting the diagnosis. It was the disturbed sleep that made me insist they do something, plus I was working at the time. Can't recall the name but had some sort of electrode testing first which didn't show what they were looking for and they referred me to hand therapy. It took weeks of trying different exercises but they weren't working and eventually diagnosed carpal tunnel, even then they said they weren't sure. The rest is history as they say. I was diagnosed with OA and in all had 10 surgeries, mainly bilateral, over the following 10 years. Good luck!

sdero profile image
sdero

Hello,

Wrist pain is how I know I'm having a flare. It is my first symptom. Can't open a jar, etc. Next comes neck/shoulder, hips, and back of knees. I was diagnosed with PMR in July of 2017, but had serious symptoms starting in May of 2017. I am down to 7 mg of prednisone, but have had to go back up to 10 on a few occasions to get relief. If i go up to 10 mg for just a few days, then I can usually go back down to my current dosage and feel better. Hope this helped. Good luck.

Augustus-6 profile image
Augustus-6

Oh definately yes. Mine started with pmr 15 years ago two years later i had exactly your symptoms and still do. I was diagnosed with severe rhumatoid arthritis. I refused all those anti arthritic drugs and still take pred. Like u i get flares and can take a high dose with good effect but drop down to my 5 mg in days. Perhaps say 20mg droping 5mg daily. Im in agony in my shoulder and right elbow right now this morning i took 20 mg hopefully tomorrow i will drop 5 mg to 15 or even 10.

GerriMc profile image
GerriMc

It’s interesting that your Rheumatologist doesn’t think your wrist problems are PMR. Mine checks my hands and wrists at every visit. I don’t have wrist problems but he checks them every time. Hope you get sorted soon.

sondya profile image
sondya

The ancestral connection - it's just not fair! I was born in Ceylon (Sri Lanka) just 8 deg north of the Equator. Six generations ago my ancestors were from northern Europe, some came to Ceylon with the Dutch East India Company (VOC) and settled there. Apart from my blue eyes, they gave me GCA!

I had GCA - ghastly - but prednisone whammed it away pretty quickly. After that, the worst was the side effects of prednisone and long, slow tapering off the drugs. As they said, it will take two years and I'm almost there.

LThomas profile image
LThomas in reply tosondya

Sondya - Have you had any/many relapses since tapering your prednisone? If so, how do you handle those? Do you start the taper from high doses again, or just increase a little?

Thanks!

Larry

sondya profile image
sondya

Hi Larry - No relapses of GCA - that's well and truly gone. But there were moments of 'steroid withdrawal' after each reduction - while the body, the adrenal glands came to terms with the change. I avoided upping the dose which would have set back the tapering schedule! That was the last thing I needed. Steroid withdrawal - done correctly - does not trigger a return of the inflammation. Once you know this, it's easier to cope with those 'bad days'.

Cheers - from a nearly-winter in Auckland, New Zealand.

Sandy

LThomas profile image
LThomas

Sandy - my last relapse got bad, I tried to wait it out but it got worse by the day where I could hardly move. I was on 5mg, today is my third day on 40mg. It took 40 to knock down the symptoms, tomorrow I will try 30 to see how it goes. My past two relapses were the same, high dose to knock out the symptoms then the slow taper. Last time I went from 40 to 30 to 25 to 20, dropping every three days till 20 and then a 1mg drop every two weeks until I got to 5. It seems that rainy weather triggers the relapse, 1st time in Scotland, 2nd time in Vancouver and here now in Florida with tropical storm Alberto. Go figure!

My wife wants to visit New Zealand but I dread the plane ride, way too long!

Larry

Rugger profile image
Rugger in reply toLThomas

That taper you've descibed seems quite fast. 1mg over 2 weeks is not a "slow taper". A lot of us taper at 1mg every month or longer. I'm tapering at 0.5mg over 38 days using the DSNS taper schedule. Have a look under 'Topics' on the right of this page and choose 'Tapering steroids', then scroll down to find 'Steroid Taper Web Application'. You'll find many examples of taper plans, including the Dead Slow Nearly Stop (DSNS) schedules in 3 different versions.

If you drop by 1mg every 2 weeks, you're likely to miss the point where you're at the correct dose to control the inflammation, then it builds up and you 'flare' - when in fact the disease was active all the time and you just passed the correct dose to manage it for the time being.

I've had 2 'flares' in 2 years and each time it was probably because I went beyond the dose of pred that I needed. Click on my name to see that in graphical form - my last post 'Happy Birthday PMR'. The first time I was tapering at 1mg over 26 days. The second time, 0.5mg over 26 days, so now I've increased the days and slowed the taper - could do it even slower!

Me: PMR 2 years. 1 flare at 12 months and another at 22 months. Now tapering to 7.5mg from 8mg, over 38 days, DSNS.

LThomas profile image
LThomas in reply toRugger

Thanks Rugger! Now that I'm convinced, even though my rheumatologist isn't, that I do indeed suffer from PMR I can hopefully do a better job of managing it. With that comes a better job of tapering my steroids.

PMRpro profile image
PMRproAmbassador in reply toLThomas

It isn't entirely clear to me if this is what has happened to you and sorry if I have said it to you before, but if you have a flare at a similar dose more than once it is your body telling you to stop BEFORE you get to that dose because you have found what you are looking for: the lowest dose that manages the symptoms. Forcing to go lower than that dose will trigger a return of symptoms as the inflammation builds up - and you are back where you started. It doesn't matter how slowly you try to do it - you can't fool the PMR.

LThomas profile image
LThomas in reply toPMRpro

That makes total sense to me, and I agree. Since my last flare, I'm trying to get down but seen to be stuck at 18mg. I have discomfort in the mornings, not too bad, but I can feel the pain in my wrists as well as weakness in my legs. After I take the steroids, typically at 8am, they will start to subside in a 2 to 3 hours. I know 18 is still way to high, should I go lower or go back up to alleviate all pain? It's so confusing!

Thanks!

LT

PMRpro profile image
PMRproAmbassador in reply toLThomas

If you go lower does the pain increase? Many people are never totally pain-free and you may be able to get a bit lower by accepting some pain - PROVIDING it doesn't then increase. The morning pain is absolutely normal - the inflammatory substances are shed in the body at about 4.30am - the sooner after that you can take the pred the less inflammation is created. The optimum time to take ordinary plain pred is 2am - then the blood level peaks just before the inflammatory substances are released.

Or you could try splitting your dose - maybe the antiinflammatory effect isn't lasting a full 24 hours. Some people take about 2/3 in the morning and the rest a bit later in the day - when is a variable feast and you may have to experiment a bit to find what works best for you. Some people have sleep problems for example - others don't.

LThomas profile image
LThomas in reply toPMRpro

Yes, it was definitely worse this morning. I will give it another day to see if it stabilizes. I might try splitting the dose as you suggested, although I have had some sleep issues taking it later in the day. Good info about when to take it though, as many times that I'm up in the night I should be able to dose close to 2am. Thanks so much for your thoughts!

LT

LThomas profile image
LThomas in reply toPMRpro

Two nights of taking my pred around 2:30am instead of in the morning at 8am. Remarkable difference so far! I felt good all day yesterday, just the occasional twinge. I dropped to 17 this morning, woke up feeling so good!

Thank you PMRpro for this excellent suggestion!!!

LT

PMRpro profile image
PMRproAmbassador in reply toLThomas

Always worth a try - even if it means waking up at night!

LThomas profile image
LThomas in reply toPMRpro

Hi, I wanted to give you an update. I'm continuing to take my prednisone in the am, between 2 & 3am depending when I wake up. It's made so much difference, I wake up in the morning feeling good! I'm at 13mg, I've been going for 3 days and then dropping 1mg. Do you think that I should start tapering more slowly once I reach 10mg? Dropping 1mg every three days hasn't caused any recurrence of symptoms. I just got results from a blood test from last week and my C-reactive level was 2,6, much better than the 26 I had a month ago!

Thanks!

PMRpro profile image
PMRproAmbassador in reply toLThomas

If you get to 10mg OK then yes, I would go a bit slower from there. However - reducing every few days isn't giving any chance to see if the dose is still enough but you'd hope that being still well above where you flared it still is OK.

dancersize profile image
dancersize

Just read your post. I also get pain in wrists, ankles and knees more than across shoulders. When rain is coming pain increases. I'm in Australia and with summer approaching less of that happening. I'm stuck on 6mg with a bit of niggledy pain but still can do all I need. My rheumy wants to put me on methomextate since pred isn't managing the inflammation at 6mg.

PMRpro profile image
PMRproAmbassador in reply todancersize

Then you probably need 7mg of pred rather than mtx. You are already at a low, what is called physiological. dose and to add in another immunosuppressant drug with an entire layer of potential adverse effects rather than add a mg or so of pred is rather silly on their part.

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