CRP/ESR: It is now 4 months since I was diagnosed... - PMRGCAuk

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CRP/ESR

palewolf
palewolf

It is now 4 months since I was diagnosed. Started off on 20mg for 3 weeks, then 15mg for 3 weeks and then a gradual taper to 10 mg which is where I am at now. My GP now wants me to drop to 7 1/2 for 2 months and then another blood test. I voiced my concerns about the big drop and suggested maybe I could do it gradually but he was quite adamant that I should go straight to 7 1/2 as my markers are all fine (crp4 esr8). My levels at onset were crp89 esr28, then crp13 esr18, then crp7 esr7, then crp8 esr12 and now as above. He has given me another blood test form for September, but he has only asked for esr and NOT crp which I find odd. Is this normal? I would have thought the crp was more important than esr, and all my other bloods were for both. Also has anyone out there successfully dropped from 10mg to 7 1/2 mg without tapering? Any advice would be really appreciated as I am a bit confused.

56 Replies
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Hidden
Hidden

I can't believe there are drs still insisting on such fast tapers and that don't grasp that the ear/CRP is on "normal" range because you are on the right dose of pred.

I can't find the guidelines at the moment but hopefully someone will have them to hand. But I am sure you know we recommend no more than 10%. Hold fast for the moment. Hopefully suggestions for dealing with stupidity.....sorry well trained drs will be given freely!🌻

palewolf
palewolf in reply to Hidden

Thanks Poopadoop. When i went from 15 to 10 I did it in small stages (didn't tell my doctor), he just told me to go to 10 for 2 months. By the time I had my next blood test and spoke to him 2 months later, I had got to10 and he was non the wiser. I've always been a bit of a rebel though!

Hidden
Hidden in reply to palewolf

Well make sure you have the pred and keep rebelling. You obviously did it the right way to bring numbers down and feel ok. It would be a shame to let the Dr ruin it. 👍🤪😂😂😂

palewolf
palewolf in reply to Hidden

I have got plenty of supplies in 5's, 2 1/2's and 1's - that's one thing my GP never queries and always gives me as much Pred as I want, so I don't suppose he's all bad!

Hidden
Hidden in reply to palewolf

I think that's the go ahead to dsns taper (see pinned posts). Some drs are mean with the prescriptions. My prescription hasn't really changed since diagnosis.

Thelmarina
Thelmarina in reply to palewolf

That was going to be my query. As long as you have Pred supplies you can use the slow taper which works best and reduces the chance of flares, and when you next see him/her you can explain that this is what works - or indeed if some symptoms return why you have remained at 10 or 9 or whatever it is. My rheumatologist told me to stay at 10mgs for at least six weeks. In fact I shall wait for a good couple of months. Slow but sure is the name of the game, and sadly we have to educate some representatives of the medical profession.

emma9475
emma9475 in reply to Hidden

Does anyone know if flares up are common? Very painful few days and crp has risen dramatically when dropped from 10 mg to 9 mg. Thanks.

Hidden
Hidden in reply to emma9475

Very common I am afraid if you drop to lower dose and it's not enough. You need to do back to 10 if you were symptom free then. Make sure you discuss this with your Dr. You need flexibility to return to a working dose.

emma9475
emma9475 in reply to Hidden

Thanks. On 10 again now but the painful feet are a persistent issue. Feels like walking on broken glass. Any suggestions or remedies for the feet? Thanks

Hidden
Hidden in reply to emma9475

You probably need more pred as it can be a big symptom of PMR. Certainly for me it is. But try 2 full days worth of OTC painkillers and if it's hot where you are keep your feet cool. If that doesn't help we sometimes advocate a blast of 5mg extra of pred for 2 or

3 days then back to, in your case 10mg. It just help clean up remaining inflammation.

emma9475
emma9475 in reply to Hidden

Thanks but the feet are an issue even on 40mg. Might be neuropathy or something because the prednisone isn't helping them. Just wondering if anyone had that sensitive issue with the feet.

Hidden
Hidden in reply to emma9475

If it's that painful on 40mg then agree it's probably neuropathy or something. I recently started taking duloxetine for neuropathy and it has made a difference. However the first few weeks were a bit harsh side effects wise. Just didn't feel well. But at least I can cope with shoes better and it's smooth pebbles rather than broken glass I walk on!

Ask Dr to refer you for tests.

emma9475
emma9475 in reply to Hidden

Thanks for that

Thelmarina
Thelmarina in reply to emma9475

Just to repeat what I said above. My rheumatologist said keep at 10mgs for at least six weeks. It seems to be a sensitive number!

PMRCanada
PMRCanada in reply to Thelmarina

It can be a “sensitive” number as I have had trouble going below 9.5,,twice now. As soon as I get to 9mg some niggles start in my body, even my scalp a bit near the base of my skull (I am diagnosed with PMR). I’ll stay on 9.5 for another couple months .

Gary1310
Gary1310 in reply to emma9475

You are the first message I read concerning feet. My feet started swelling and became numb about ten years before diagnosis. I wondered if it was

an early symptom. I am now on 8 mg and they are feeling better.

Hidden
Hidden in reply to Gary1310

Hi Gary1310, there have been discussions about painful feet in the past. It wasn't acknowledged as a symptom of PMR and still isn't by some drs but there's been enough stories about them on here to convince me. That said, peripheral arterial issues and neuropathy should always be explored if the pain returns on lower doses.

Gary1310
Gary1310 in reply to Hidden

...Thank You. All these years I thought maybe I was heading toward Diabetes.

Hidden
Hidden in reply to Gary1310

Hopefully not...but make sure your Dr checks your hba1c every few months while you are in pred. Everyone should have it checked.

PMRpro
PMRproAmbassador in reply to emma9475

I had that problem but it took maybe 3 or 4 months at 15mg before I suddenly realised they didn't hurt any more - I htink it is tendonitis and it takes a while to calm down. Though I'm surprised it didn;t improve at 40mg - unless you weren't on it long enough.

Hidden
Hidden in reply to palewolf

A kindred spirit - i'm dropping very gradually too - currently 0.1mg a day from 15mg to 11mg and on 12.3mg & all is well !

palewolf
palewolf in reply to Hidden

Glad to hear you're doing well. It can be a very worrying time. Good luck.

Hildalew
Hildalew in reply to Hidden

How are you measuring .1mg?

Hidden
Hidden in reply to Hildalew

Hi hildadew, TonCh has left us at the moment. He has access to lots of precise equipment from work and it's not a slow taper really despite the minute cuts as his schedule involves being off pred in 100 days total.

palewolf
palewolf in reply to Hildalew

Do you mean 1mg? Don't think you could measure 0.1mg. I get 1mg pills from doctor.

Hidden
Hidden in reply to palewolf

No palewolf, hildadew was correct. Someone had access to equipment to weigh 0.15mg after grinding pills up. very unusual and untested approach that most of us couldn't and probably shouldn't do.

palewolf
palewolf in reply to Hidden

Oh my, don't think I would trust that method.

Hidden
Hidden in reply to palewolf

Or be bothered. 😂😂😂

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to palewolf

Aren’t we all😳

iveco
iveco in reply to Hidden

No your are right , stupidity ....

I think you are right to question your GP.

Here is a link to the guidelines for management of PMR:

academic.oup.com/rheumatolo...

I was diagnosed with PMR in January 2018 about 5 months after I had come off prednisolone for GCA. My GP advised the following tapering regimen for prednisolone:

2 weeks at 15mg per day

6 weeks each at 12, 11, 10, 9, 8

I was then seen at the rheumatology clinic and was advised to decrease the dose by 1mg every 5 weeks down to 3, and after that taper to zero with decrements of 0.5mg every 5 weeks. Currently I am taking 1mg and have decided to continue for longer than 5 weeks.

palewolf
palewolf in reply to Labradorite

Thanks for replying. It's strange that doctors have such different opinions on the management of PMR. So far I have tapered slowly from 20 to 10 mg and have had virtually no pain at all since starting on Pred. I don't want to upset the apple cart now so I shall take it slowly.

PMRpro
PMRproAmbassador in reply to palewolf

They have never had it - if you find a doctor who has been on pred at some point they are totally different about it.

Highlandtiger
Highlandtiger in reply to PMRpro

Definitely. My GP has been on it at some point in the past and he's very relaxed about me tapering slowly at my own speed compared to others in the practice who I had to see last year when he wasn’t around.

It does seem strange your doctor wants a 25% drop to 7.5mg. They are usually happy when you get to 10mg and let you slow down. Did he really mean to do it in one go overnight or do you think he meant for you to do it over a period up to September? Mind you that is still quite fast. My GP often forgets the important blood test on my list as he is thinking of something else at the time probably. ESR and CRP is more belt and braces. You could ask for CRP to be added if you wanted. I was always told it is how you feel that is important and the blood markers were just a back-up to that.

palewolf
palewolf in reply to piglette

Yes, he deffinitely meant for me to drop to 7 1/2 ( he said it was not such a big drop!) I queried it but he was adamant. He also said that at the end of 2 months I should drop to 5mg. I always thought that the CRP marker was more important than the ESR ( my ESR has never been overly high, but my CRP level was very high -89 at the beginning, so to me it makes more sense to test that rather than ESR.

piglette
piglette in reply to palewolf

They reckon CRP is more sensitive, so both are best, but ESR gives an idea. I just hope your doctor never has PMR and is told to drop his dose that much.

palewolf
palewolf in reply to piglette

Indeed!

PMRpro
PMRproAmbassador in reply to palewolf

DEpends on the person - for some it is CRP, for others ESR is much more useful.

DorsetLady
DorsetLadyPMRGCAuk volunteer

Hi,

Relevant paragraph from BSR/BHPR guidelines for PMR treatment regarding tapering - your GP needs to be aware of underlined section -

Para 5.

We recommend initiation of low-dose steroid therapy with gradually tailored tapering in straight- forward PMR (B).

In the absence of GCA, urgent steroid therapy is not indicated before the clinical evaluation is complete.

The suggested regimen is:

. Daily prednisolone 15 mg for 3 weeks

. Then 12.5mg for 3 weeks

. Then 10mg for 4–6 weeks

. Then reduction by 1 mg every 4–8 weeks or alternate

day reductions (e.g. 10/7.5mg alternate days, etc.)

However, there is no consistent evidence for an ideal steroid regimen suitable for all patients. Therefore, the approach to treatment must be flexible and tailored to the individual as there is heterogeneity in disease course. Some benefit from a more gradual steroid taper. Dose adjustment may be required for disease severity, comorbidity, side effects and patient wishes.

Hidden
Hidden in reply to DorsetLady

They most definitely forget the patients wishes!

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to Hidden

Ahh yes, it was ever thus! Apart from a few enlightened ones.

palewolf
palewolf in reply to DorsetLady

My GP did keep me on 10mg for 6 weeks and I thought he would then ask me to drop 1mg per month till I got to 5 which is what I wanted to do, so I was a bit surprised he wanted me to go straight to 7 1/2. He probably thought that as my markers were fine and I had no pain I would be ok. Anyway I will not be dropping to 7 1/2 but shall take it slowly following the advice of all you good people. By the time I speak to him again at the end of September I shall be at

7 1/2 anyway.

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to palewolf

Good- as others have said from 10mg the sensible way is 1mg tapers. As you know the recommendation, certainly at lower levels, is no more than 10% of your existing dose. So from 10mg that’s no more than 1mg a time - and from 5mg - a drop of 0.5mg per month is better!

Good luck.

palewolf
palewolf in reply to DorsetLady

Thank you.

Telian
Telian in reply to palewolf

....and once you’ve tapered successful - at your own pace - educate your GP, otherwise he’ll be advising others the same as he thinks his way works!

PMRpro
PMRproAmbassador

They are fine at 10mg - they may not be at 7.5mg. ALL the guidelines say to reduce at 1mg at a time below 10mg.

I dropped from 10 mg to 7.5 mg a couple of weeks ago and I am fine. Started on 40 mg in October. For a few days when dropped face swelled (?moonfaced) but soon wore off

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to Daffodilia

Good - but just ease up a bit now. No more 2.5mg drops!

I was diagnosed with PMR in October 2018 and started treatment with 25 mg prednisolone for 5 weeks, then 20 mg for 5 weeks followed by 15 mg for 4 weeks. I was down to 8.75 mg at the beginning of June when I reduced to 7.5. I would mention that I never became pain free in the hip area although the steroids removed the pain in my shoulders/neck/upper arms and my left ankle almost immediately. The first couple of days on 7.5 mg were fine but then I got the most awful pains in my hip girdle. It was like having broken glass inside me. I could hardly move. These pains were different from any I had experienced before. I started on 20 mg, which did not seem to help much in the first week. Then the pains reduced somewhat to what I would call tolerable. My rheumatologist decided to send me to an orthopaedic surgeon since I do have some osteoarthritis in my hips though neither she nor I could understand why this would suddenly cause me such pain on reducing to 7.5 mg. On examining me, and taking my xrays into account, the orthopaedic surgeon did not feel that it was the cause either. I am now on 13.75 mg and I have less pain now than I have had since starting my course of treatment in October last year. I hope this will continue. When I get to 10 mg, I shall be very careful in reducing by the smallest amount possible so as to avoid a repeat of what happened to me at the beginning of June. All the advice given in this forum about not reducing too fast is very sound indeed. I would add that my CRP level on diagnosis was 148 - after only a week on medication, it was 8, i.e. in the normal range and it has stayed there, even when the pains I describe above were most severe.

Knowing what I know now I would insist on a slower taper. I have just been bounced around a bit recently and still feel so very tired. The ER Doctor was in Cyprus and to say the treatment was crap would be an understatement. I am now on a very slow taper

By the way as of yesterday and my rheumy visit I will always ask for a print out out of results :)

I've been tapering from 20mg in December 2018. Fortunately I have a GP who discusses the process, but leaves the decisions to me. Five days ago I went from 5.5 to 5. So far there is no pain, but very heavy legs, (I feel I kind of walk in an odd manner) and I have to stop often just to rest a little and breath deeply. I will continue on 5 for at least another 4 weeks to see what my body says. Hopefully, I won't have a relapse. :)

I had a smooth descent from 25mg to 10mg but it took three attempts to get past 10. Have dropped by 1/2 mg each time since then and just started 7.5mg this am with fingers crossed. Take care 🌻

My wife's first rheumy was a stupid guy with the same mentality as your GP. He got her to taper down to practically nothing within 7 months of starting prednisone, and predictably, she was back to ground zero and he washed his hands of dealing with her. My wife went back to her GP and eventually a rheumy that told her not to taper more than half a mg at a time. The mere fact that the ESR and CRP numbers are good at any given time does not mean the patient is cured of PMR.

Joe

HI folks, I am also on 10 and told to reduce to 7.5. I agree it is too big a drop. I am still on 10 and will see the doc this week. I was given a printout from the same surgery at the beginning of my diagnoses which states you should go down from 10 to 9. Are these people all reading the same information? Will stick to my guns as long as I have enough tablets.

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