Hello all. I am not sure if there are any members of this group from NZ, However that does not matter as PMR seems universal in its symptoms and treatment. I am interested in comments about getting off Prednisone.I was on 30mg initially ( November 2020) and got down to 7.5mgs 2 months ago when I started on Methotrexate...that seemed to work so I got Prednisone down to 5 mgs by reducing .5 per week...however last week, now that I have gone to 4.5 I am suddenly sore and tired so have upped to 5 then 6..... hopefully now symptoms will ease. However to be honest I am tempted to just continue to reduce by .5 per fortnight and put up with the discomfort and pain and get rid of Prednisone out of my life! Has anyone done this?...i.e. make "pain your friend" and wait for nature to take its course!
Medical fraternity here in NZ seem to put great store on CRP results in blood tests..comments??
Are any members actually medically qualified or is this site also a hiding place for conspiracy theory anti vax aspirants?
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Matua
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I have found trying to live through the pain can be a bad idea. PMR is very devious and usually wins the fight. I always have very high CRP results, but I ignore them if I feel OK and carry on reducing.
The advice you'll get here is generally excellent and very often (I'd say usually) better than you'll get from any doctor no matter where in the world you live. I'm on east coast of Canada, so much closer to the British time zone than to yours, but it's only evening here. Most members are in the UK so they are (or should be) asleep now!
First off, Piglette is right. You can't get rid of either PMR or pred by willpower! However the best way to handle the disease is by allowing pred to do its job and then following a very slow taper plan. If you have PMR symptoms now, wait a while and make sure your increased dose is really going to do the trick. Don't be afraid to increase more if you find you have to. Others will be along with more complete advice about that. And your idea about decreasing in half mg steps is very good, but you would most likely do better with monthly decreases, even using a slow taper plan, now that your dose is below 10 mg. "It isn't slow if it works".
Yes we have members from NZ. Working through the pain would be ok if it didn’t get worse. Mind you, unchecked inflammation causes damage. We get the occasional doctor, nurses, scientists, nutritionists, but nobody takes the place of your own doctors. Most of our advice is based on personal experience and the latest medical research that we usually attach by a link. The overall advice on vaccines tends to be pro them but we are a diverse group that embraces other opinions. The trouble with blood test results is their accuracy tends to be affected by steroids and steroid sparers so it isn’t a true reflection, unfortunately. Symptoms rule with these diseases and slow careful tapers tend to work better in the long run. Welcome Matua!
I am from NZ Matua & agree with your comments that a rheumatologist I was seeing for my worsening symptoms for what I now know was PMR, put alot of emphasis on CRP results rather than symptoms. My CRP at that time was not high. It was a year before I was diagnosed by which time I had GCA & very high CRP. The rheumatologist commented that my case was very unusual, but I know from this forum, that it was not.
Comments on this forum helped me decide that getting fully vaxed was a sensible option. Often answers to questions are answered with references to medical trials that I have shown my GP & as a result of these have gone off some drugs.
Finding this forum & often getting prompt answers from people such as PMRpro, Dorset Lady, Sheffield Jane & Heron to mention a few have really helped me.
Tena Koe Matua . Kei te pehea koe ? Nau mai, haere mai. I live in NZ and there are others on this site. I managed to get off Prednisone after 6 years using the Dead Slow & Stop method that you can find on this excellent site. This site was the only support site available here in NZ when I was diagnosed. Very trustworthy and definitely no conspiracy theorists on here. The Admin team are very professional and knowledgeable . Mihi mahana , Whaea Margaret.
Nga mihi nui for your mihi Matua. I'm pleased to hear you're well apart from the PMR. I'm in Kirikiriroa now but lived and worked in the depths of the King Country for many years. I'm not sure if you're a teacher due to the Matua name as I know it has other meanings. The term jumped out for me as I have worked in Kura for many years myself. You will find great benefit on this site along your PMR journey. Kia kaha
Hi Matua, I’m in Australia and was diagnosed about the same time as you. Started on 25mg, tapering 2.5mg fortnightly initially then 3 weekly till I got to 10mg when it became 1mg every three weeks. I was feeling ok but blood tests (done every four weeks back then) highlighted raised markers when I’d got to 4.5/5mg so rheumatologist advised I go back up to 6mg and taper 0.5mg every 4 weeks. After the second incidence of this she advised methotrexate alongside the tapering pred. That seems to have worked, I’m now on 1mg and, all being well, will be on 0.5 at my next review. Bloods every 8 weeks now and must be ok as she’s not phoned me! I feel ok, any aches and pains I have are due to other things that I know about.
I didn’t get a lot of information back at the beginning and had never heard of PMR. I only discovered this site relatively recently and have found it a good source of info and experience.
Quite a few members from NZ, plenty of mainly retired medical folk, and definitely not a site for anti-vaxxers - the opposite in fact.
A few other points -
despite what many doctors think 2 years is quick to be clear of PMR, for some yes, but certainly not all, so you maybe have gone below the level of Pred you actually need for your illness,
CRP is useful a a diagnostic tool for PMR, and sometimes for monitoring, but it’s just a test that shows inflammation- not what’s causing that inflammation - and is very specific to the individual - so trends more than actual numbers are more useful,
At your low level, your adrenals may be struggling to function, which may account for the tiredness, so just beware that 0.5mg per fortnight might be too quick for them.. 0.5mg a month might be better.
You might want to be rid of Pred, but if your PMR is still active (and very likely) you still need it…
A couple of posts might help - one general info, one on adrenals -
Thank you...I understand that Prednisone is a very useful drug but the side effects really annoy me..a case of the cure being worse that the disease. I found it hard to decide how to rate my PMR..i.e. am I mild ?? I have no reference to make a judgement on this😀
“…a case of the cure being worse that the disease”..
For you maybe, perhaps because you’re male (does seem to be an easier journey than for females in many cases) or as you say you may only have a milder version…whatever, lucky you.
For many, Pred can be a real saviour, especially if you have PMR’s bigger more sinister sister, GCA…look no further than moi..
Kia Orana Matua. I am in Tamaki Makarau. I have both GCA and PMR. While my CRPS have always elevated when I have a flare my rheumatologist always places more importance on my symptoms. I started with GCA five years ago and this site has been invaluable and the only one without types like antivaxers. Mind you it is well monitored by wise monitors who always link research to questions
You are not reducing the pred dose relentlessly to zero. You are looking for the lowest effective dose - the lowest dose that gives the same symptoms relief as the starting dose did, the dose that is enough to combat the daily new batch of inflammation created every morning about 4am by the release of the inflammatory substances in the body. If you go below that dose the ongoing autoimmune disorder underlying the inflammation will just continue dumping inflammation and you will end up back where you were at the start - sooner or later. The further below that dose you are, the more inflammation is left over and dripping into the bucket so it fills up more quickly.
The forum is patient led but there are former healthcare professionals and medical scientists among them. As for conspiracy theorists - we are very intolerant here and the Admin ban any discussion of that sort of thing. Anyone who doesn't stick to the rules is welcome to leave.
CRP is only one way of indicating presence of inflammation. In fact, the one thing that experts agreed on about ESR/sed rate is that it is often more useful in PMR! About 10% of patients don't have raised markers at all - my CRP was only ever raised once, and it wasn't PMR, it was a severe atrial fibrillation episode! My ESR wasn't out of "normal range" either except once for something else - but bumped along at 16-18 during a massive flare when I could barely move which excited no-one! Whatever a rheumy likes - symptoms are often a far more reliable way of assessing disease activity since both CRP and ESR which rise in response to all sorts of things - a cold, chest infection, accident, surgery, even just emotional stress.
The people on this site got me through my 6 year ordeal with PMR by providing information and guidance I had NEVER received from my GP or Rheumy in the states -- and now they are helping me with GCA. HIGHLY recommended.
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