How many MG starting Prednisone do you think I sh... - PMRGCAuk

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How many MG starting Prednisone do you think I should have been started on?

nickmits profile image
nickmits

Hello I'm 60 years old. My rheumatologist thought I had PMR four months ago and started me on15 mg , the pred reduced pain and stiffness about 50% and for some reason he started tapering down to zero and I was in excruciating pain for weeks while he did all these other diagnose, the DR was going another direction thinking it could be other arthritic conditions, however I feel I have all the classic symptoms of PMR and told him on Friday he has to get me back on it... My ESR is 39 my CRP is 44 a week ago.... If you were a RHEUMY doctor ...what would you recommend my starting MG should be. Otherwise I'm healthy , was very active before, I have a good diet and had no side affects to PRED . I weigh 76 KG and 86CM tall.... I've tried Paleo diet for months ,reduced alcohol intake and all kinds of supplements for anti-inflammatory nothing helped... Also he gave me Naproxen and that did nothing. This has been really a tough few months-but last Friday he agreed with me and I'm starting on Pred now again...I hope it works!

My pain was a 9 most days. Pain in hips, low back, upper back, the whole chest area , excruciating if I did a little sneeze, my neck was very stiff and sore, not my rotator cuffs, but my clavicles at the base of my neck were very sore and tender---- so it was all the pain in the chest area and clavicle area that the DR was taking a different direction to the PMR -- but I thought PMR can still affect those areas( anyone had a similar pain areas?) Raising arms, rolling over in bed, crazy pain and stiffness for the first 4 hours on the day, and all the other classis issues I have....

Wondering what MG prednisone you would have suggested for me for my re- start.

Lets see what the consensus is.

Thanks to all the great people on here-- thanks for your heartfelt support!

Nick/Toronto

45 Replies

Hello and welcome. It’s not clear to me how long you were on the 15mg for. 15mg might have been adequate but you may not have been given enough time on that dose to do it’s job.

nickmits profile image
nickmits in reply to SnazzyD

Thanks Snazzy that is possible .

nickmits profile image
nickmits in reply to nickmits

BTW the dr has me on 20 now

SnazzyD profile image
SnazzyD in reply to nickmits

How long were you on the 15mg?

nickmits profile image
nickmits in reply to SnazzyD

HI I was on the 15mg for 2 months and then tapered to zero the following month.... now im starting at 20 i and its been 3 days and no real improvement yet-- Im wondering if I should be at 25?

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

15mg is a common starting point.....it’s what followed in your case is bizarre.

If 15mg doesn’t give at least 70%improvement then there is scope to increase it. Guidelines state anything between 12.5mg and 25mg - but preferably the lowest to find relief.

Whatever dose you start on, it needs to be given time to work...for some people it’s an overnight response, for others it’s longer. At least 3 weeks, but some of us oldies think 4-6 weeks is much more realistic.

Plus a tapering regime based on monthly reductions, and preferably no more than 10% of your current dose.

nickmits profile image
nickmits in reply to DorsetLady

Hi Dorset Lady ... I was hoping to hear from you ... thanks so much ... I really like your advice ... my height should be 172 cm ... I goofed up ... so 20 mg should be ok I hope ... but my gut says 25 ... but he’s got me at 20 now ..

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to nickmits

Well you’ll have to see how 20mg goes, if it doesn't do it, then 25mg may be required....but don’t be railroaded into anything.....I’m sure you won’t!

nickmits profile image
nickmits in reply to DorsetLady

Hi DL-- thanks again! How long do you think I should keep on 20... I think if its not mostly gone within the next 2 weeks-- maybe take it upon myself to take an extra 5mg and Ill be up to 25..?

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to nickmits

Maybe give it 3 weeks, and then try 22.5mg if not happy.

nickmits profile image
nickmits in reply to DorsetLady

HI DL---thanks again--that's a great suggestion...

Do you know what other conditions are misdiagnosed as PMR -- as my Rheumy was pretty well going away from PMR and I was the one that had to insist to get back on the pred. My pain and stiffness was hips , front on clavicles , whole chest and rib cage front and back, lumbar region. I had no swelling in the joints and it felt all muscular. I had every diagnostic possible and nothing showed up...What made my convinced it was PMR was that it pretty well Followed the clock,, the amount of pain stiffness and misery was the same 8 am or at 12 noon or 9 PM or 3 AM ...all at the same level of pain based on diff time of day if you know what I mean,..and the pain would repeat/ replicate itself exactly the same each day... Wide awake at 3 AM , can't lift arms above head etc. etc. so it was so obvious PMR to me// My RA reading was fine-- my ESR and SED was elevated 4 months ago when he said it was PMR and those markers were right in line after I was on the first round of 15mg pred...then when he tapered to zero the pain increased according to the taper schedule... and when I got to zero the Sed and Esr markers were back to where they were when I was originally diagnosed 4 months before ( very elevated). What I find really hard to figure out is I thought I was a classic PMR case and there was this possible other things he was trying to diagnose me with ... so it makes me feel today because how this unfolded, I cant say confidently that its PMR-- I dont know...maybe this pred is going to work for me-- but my pain is making my life very difficult. I came off a 35 year marriage in 2016 and a terrible divorce proceeding until end of 2019 and I still kept everything together and im positive type a person--but could have been that much stress brought this on..it might be a stupid realization...stress has lots to do with the breakdown of the immune system for sure...also my Dr with the new pred as of Friday-- he wants a CT Scan Angiogram.... he said something about Extra GCA to check out....never heard of that---I never have headaches but my scalp is tender since this started.

I'm a self employed mortgage broker for 32 years, have 2 great kids that are in there 30s--and I'm at my desk 8 hours a day and have always exercised - but working in a stressful job and sitting in front of a computer every day takes it toll too--but I have watch my ergonomics closely over the last 10 yeas... I also have cared for my parents pretty well all their lives-- my mom is 95 now and and my dad lived to 96. That take alot of my energy too ...Your thoughts when you have a minute...thank you very very much!Nick ( sorry for my ramble)

10 years ago.
PMRpro profile image
PMRproAmbassador in reply to nickmits

Sticking my nose in - it is all pretty reminiscent of PMR. But the man's trial with pred may have done you a disservice - it's one thing to use 1 or 2 weeks of pred as a trial and restart as soon as the symptoms return on stopping, But the 2 month approach can be enough to make things harder next time round. In the meantime it may have progressed - I imagine that is what he means and is looking for LVV, large vessel vasculitis.

academic.oup.com/rheumatolo...

The text may be heavy reading but Fig 1 summarises it all.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to PMRpro

PMRpro has addressed what else it could be, and Rheumy probably thinks is extra cranial GCA aka LVV as apposed to Cranial GCA (sometimes referred toTemporal Arteritis) which seems to the most common form. Stress for sure is a very common pre cursor of both illnesses, and although you kept it all together for a long time, add in a stressful occupation and elderly parents - and eventually the body can only take so much.

Don’t worry about rambling (not that it was) - sometimes it’s necessary to get all you need to across.

nickmits profile image
nickmits in reply to DorsetLady

Thanks -- Ok that makes sense.. If thats the case- that might explain chest and clavicle pain-- so give me your sense -- this is pretty serious than-- it could take many years to burn out and and maybe 25 mg for LVV doesnt do it-- typically does that mean the Pred has to be higher than 25? Thanks for your help! Nick

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to nickmits

It is serious, but can be managed once diagnosed and treated properly. Usual starting dose for Extra cranial & Cranial GCA is between 40 - 60mg....the higher dose if sight issues are apparent. In my case 80mg because I’d already lost sight in one eye.

I think you can assume at least 4 years - mine was about 5.5years - but that included 18 months without a diagnosis - but have to say once things were under control I found life not too bad.

Slow tapering, no hassle from doctors to reduce too slowly resulted in no flares. But I wasn’t working, although a carer for late hubby initially.

Been in remission and off Pred for 4.5years, and feel really good.

Uisce58 profile image
Uisce58 in reply to DorsetLady

Hi DL - you say you are off Pred for 41/2 years - what does it feel like to be off this medication? What is "normal" like? Thanks.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Uisce58

Don’t think I’ve ever been normal!

Since GCA, I have had 3 joints replaced due to OA - but this year - despite some pain from shoulder for which I only take paracetamol occasionally - I’ve realised that I’m not in pain anymore, am getting a full night’s sleep and feel so much better without heavy duty painkillers.

Better than I’ve been for at least 12 years.

Uisce58 profile image
Uisce58 in reply to DorsetLady

Thank you for your honesty - I look forward to being off Pred at the end of the year if everything goes well. However I am also very fearful of being off the drug in case of relapse/flare and potential of loosing my sight.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Uisce58

Well being honest don’t be too fixated on being off Pred by end of year. I’ve said many times it took me almost as long to get from 10mg to zero as it did to get from 80 to 10.

Don’t be rushed - I was fortunate in that I didn’t have any flares - whether that was down to good luck or slow tapering I’m not sure - a bit of both I suspect.

And you may have a relapse, you don’t know - but you do know what to do if you are in that situation.

Obviously you are very watchful the first year or so for every twitch or twinge - and although I always say I’m in remission I don’t constantly think about it- life goes on.

nickmits profile image
nickmits in reply to DorsetLady

Wow you sure had a rough go--I hope all the best and Ill let you know how the Angiogram goes... PS - from your experience what are the worst food groups for this? Im taking supplements for inflammation and nothing-- my dies has always been decent and now eveb more I watch what I eat- low sugar and no bread , few grains and potatoes and little dairy and cutting down beer and wine-- 9 did not drink lots of quality but was enjoying some beer and wine each day before, so how key are these or other ingredients? Nick

PMRpro profile image
PMRproAmbassador in reply to nickmits

Everyone is different and it is a case of identfying which foods make you feel worse. Carbs are not ideal when on pred, avoiding them helps weight management, but sugar is also pro-inflammatory. Many people find they notice when they have eaten more simple carbs and added sugar than usual. Supplements in general, apart from vit D, are mostly a waste of money and too much can be as dangerous as too little of some. Far better to spend your money on good quality real food - a rainbow diet will usually assure you all the vits and nutrients you need with a few exceptions.

nickmits profile image
nickmits in reply to PMRpro

Thanks PMR pro-- so I will continue to watch it and be careful with simple carbs--I'll continue on my Vit D.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to nickmits

You seem to be well on the way - cutting out refined carbs as much as possible, sticking to veggies, some fruit, oily fish is good as are nuts and pulses. I cut out alcohol when on high doses of steroids, but reintroduced it a bit as got lower. Never was very good on red wine, and certainly not now - but a sparkling white or rose is very acceptable when in company.

Some can take alcohol, some can’t on medication.

Just eat and drink sensibly.

nickmits profile image
nickmits in reply to DorsetLady

Well thats good advice-- but I'm pretty stick on red meat and salmon and chicken and pork and turkey--so dont see me cutting out meat. I have never been more than 5 lbs over my healthy weight..thanks again!!

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to nickmits

No didn't suggest you cut out meat - you need protein but cut down on refined carbs.

nickmits profile image
nickmits in reply to DorsetLady

Ok thank

SnazzyD profile image
SnazzyD in reply to nickmits

If you do go on 25mg or high dose Pred, you may find that suddenly your metabolism becomes another beast. I was amazed at how different it felt. Starting on 60mg I cut out nearly all carb getting only that in the fruit and veg mostly. I ate a shed load of meat and fish of all sorts, nuts, infeasible amounts of veg, some fruit (mainly berries and an apple daily), a few squares of dark choc (not near to Pred as it affected my heart) daily and two small glasses of wine a week. I stopped all alcohol until in the 20’smg. My blood sugar remained stable and I had no weight gain. Salt can also cause fluid retention but it depends on the person.

nickmits profile image
nickmits in reply to SnazzyD

That’s very helpful thanks .. do you still experience pain ... I have not a had terrible pain free day for 6 months now .

SnazzyD profile image
SnazzyD in reply to nickmits

I didn’t have PMR but GCA the pain of which went very quickly after starting Pred. Your history sounds like you’ve had neither here nor there dosing compared to those here with PMR who have been managed well. The worst cases are those are treated half arsed (insufficiently dosed) who don’t get proper relief but the doc takes that as evidence of another disease. Yo-yoing dose is not be recommended and I do wish those docs who muck about with dosing would step away from their academic exercise and see the misery the patient is going through. I would be demanding a well reasoned rationale behind their thinking.

PMRpro profile image
PMRproAmbassador in reply to nickmits

Doesn't mean you won't gain weight with pred though! That's what some people find so distressing - never had a weight problem until pred. And low carbs leaves you all your protein sources you like ...

HeronNS profile image
HeronNS in reply to nickmits

If you google polymyalgia rheumatica differential diagnosis you will find a couple of sites which list what should be considered. PMR is a diagnosis of exclusion. I think quite a lot of them are ruled out through the blood tests which should be run when you first present with your symptoms.

nickmits profile image
nickmits in reply to HeronNS

Thanks ! Yes I will do that-- had many blood tests and all the classic markers are out of wack!

PMRpro profile image
PMRproAmbassador

Since you achieved a 50% improvement on 15 first time round, I'd say try with 20mg and see if that is better. Stay there for a month, then a month at 17.5mg and then 15mg. If the 20mg doesn't feel enough (second time round is often harder) then they should allow you to try 25mg. The guidelines say the lowest effective dose in the rang 12.5 to 25mg

The clavicle pain is very common in PMR - why did he think it isn't I wonder? I wonder if the chest pain may have been costochondritis?

Are you really 86cm tall ;)

nickmits profile image
nickmits in reply to PMRpro

PMR Pro ... sounds like you are a pro... wow so helpful ... don’t think it’s Costco cause i get the pain throughout the chest as well .. ha I screwed up I’m 172 cm tap .

PMRpro profile image
PMRproAmbassador in reply to nickmits

I've lived, breathed and studied PMR for the last 15+ years - does that make me a pro?

It occurred to me after I'd shut the computer down - could it be tight/spasmed back muscles? Myofascial pain syndrome often accompanies PMR and causes inflammation in the piriformis and lats muscles - if they are very tight they are painful and can irritate nearby nerves which causes referred pain in the area they supply. If it is the piriformis that is as sciatica but the lats can cause pain around the rib level, even as far as the front.

nickmits profile image
nickmits in reply to PMRpro

Hi-- thanks again-- I dont think its that-- because it same pain exists around the whole chest wall and the pain wraps around proportionately to my backside as well --

nickmits profile image
nickmits in reply to PMRpro

Oh BTW ... dr has me at 20 now !

PMRpro profile image
PMRproAmbassador in reply to nickmits

Is it helping?

nickmits profile image
nickmits in reply to PMRpro

Hi-- at 20 for the last 2 days and had my third this morning-- and no real relief...should I wait 2 weeks before going up to 25?

I needed 25mg after 4 weeks on 15. It did the trick. Presently on 5mg.

nickmits profile image
nickmits in reply to Meggsy

HI Meggsy... thanks for that- do you mind to explain your overall scenario and where your pains were etc--so I can compare- thanks!

Meggsy profile image
Meggsy in reply to nickmits

I still had upper arm and shoulder pain, restricted arm movement and no arm strength for pushing any weight. I tried to talk GP into 20mg but he insisted on 25. That was 3 years ago. I have reduced very slowly with only a couple of glitches. I had 2 or 3 attempts to go from 10 to 9, so changed to 0.5 tapers, reached 3mg and was doing a slow taper to 2.5 when I had a flare. I increased to 10mg (overkill), for 8 days then back to 5 intending to progress back down to, hopefully, 3mg but broke out in a very painful bout of shingles so am still on 5mg and about to go to 4.5 with fingers crossed. GP is happy for me to set my own pace which I have done using the advice and information obtained from the very knowledgeable and experienced people on this forum. Just remembered, even at 25mg I didn’t get instant relief. I think it took one to two weeks and even then I was still aware of slight pain in my upper left arm, which was my very first symptom 5 months before diagnosis. It was very mild but didn’t disappear till I reached single figure prednisolone.

I hope you soon find relief. Marea 🌻

Hi nickmits. I have relations in Toronto and elsewhere in Ontario, hopefully one day may get a chance to see them again. Love Canada. Anyway, June last year ended up in the walk in centre, not that I walked, as niggling joint pain suddenly became extreme excruciating pain affecting, what seemed to me, every joint I had. I couldn't move. I was started on 15mg, bumped up to 30mg by a different doc (same practice) who kept me there for a week then down to 25mg. I found this site and would been lost without it. Slowly tapered down to now on 8mg with one glitch on the way. Pain went pretty much as soon as I started the Pred and I've been relatively pain free since. Pretty much left on my own by docs regarding speed of tapering etc.

nickmits profile image
nickmits in reply to Bcol

Hey BCOL-- thanks for the nice note and cool you have been here-- I love where I live. Well look like we have lots in common in this. Can you tell when you said immediate relief- can you expand on that and your pain areas and do you have any pain and stiffness now... what is your age. Can you keep up activities--? Did you go through some long period of stress - I have a 5 year divorce proceeding I think created the issue. Nick Mits😀

Hi - it became a long post so I have PM it to you.

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