Bloods done

[Sydneychihuahua]

Just got my blood tests back and all normal the doctor txt me to say my inflammation markers were normal what ever that means? She has told me to taper down then stop. She said I had been on the meds to long,but I have read on this forum of some ladies being on these meds a lot longer than me. She said the pains that I will get when I come off are just my body adjusting still confused but wish me luck

[PRL1957]

Hi,

Hopefully the doctor is correct.

But, if you are currently on 5 mg/day (as per your biog), that could be decreasing the inflammation markers in your blood. So the results might not necessarily mean your pmr has gone.

Taper slowly. I have recently tapered off by dropping by 0.5 mg/day over 3 to 4 weeks and seem to be pmr-free (at least for the present). I think some people have even tapered slower than that. But pause your tapering if the pmr symptoms return.

Good luck.

[Sydneychihuahua in reply to PRL1957]

Thank you

[Italybound62 in reply to PRL1957]

That is great! How long were you on steroids? Curious how you were able to taper that fast.

[Sydneychihuahua in reply to Italybound62]

Been on steroids 4 years gone down to 5mg but suffering I'm fed up with it

[PRL1957 in reply to Italybound62]

Hi, Italybound62.

I was on prednisolone for 39 months. At one stage, I had to go up to 30 mg/day, due to suspected GCA. So my taper was actually from that dose to zero over about 18 months, with larger steps (dropping by 5 mg/day at 1 month intervals) at the start, smaller steps (dropping 1 mg/day) from 15 mg/day and finishing with decreasing by 0.5 mg/day at 3-4 week intervals when I got below 10 mg/day.

I must emphasise: do not try to taper too quickly. Take note of your symptoms and stay on your dose - or even go up a few mg/day if your symptoms return. My first attempt at tapering was too quick. I disregarded aches returning until the suspected GCA turned up.

Looking back, I suppose it was quite a fast taper, in the end. I guess I was just lucky.

[Italybound62 in reply to PRL1957]

Yes. Wonderful that it worked for you. Thanks for sharing.

I’m at 4.5mg after 3 years. Trying to taper again.

[DorsetLady PMRGCAuk volunteer]

Is this your UK GP?

If you were back on 5mg when bloods were taken [as you mentioned in previous post] then they are likely to be with a normal range. Even if not on Pred, the problem with relying just on bloods is that

a.they can lag well behind symptoms, and

b.some patients never have raised markers.

GP may be correct in saying that ‘normal’ aches and pains of life which may have been masked by Pred do resurface… but if your PMR is still active, then the pains associated with that will also reoccur. Not sure she can be 100% sure what is what at the moment..

[Sydneychihuahua in reply to DorsetLady]

Thanks for your reply

[Koalajane]

I have been on prednisolone for nearly 8 years. I am on 3.5mg and don’t intend tapering until after Christmas. I don’t get blood tests or even ask for advice from my GP I look after it myself. If you need pred you need pred and in my opinion symptoms rule over blood tests. Good luck but stop tapering if in pain

[DorsetLady PMRGCAuk volunteer in reply to Koalajane]

If you need pred you need pred and in my opinion symptoms rule over blood tests

Think we’d all agree with that- but if you are unfortunate enough to have a GP who is miserly with Pred and won’t prescribe on repeat without carrying out a Spanish Inquisition you’re a bit stymied..

[Missus835 in reply to DorsetLady]

I can relate. LOL Spanish Inquisition is a great analogy DL. 😆

[PMRpro Ambassador]

What is too long? I have no doubt she would consider I have been on pred "too long" after 16 years!! But my world-renowned in the field rheumy is fine about it. It keeps me mobile and pain-free, if I go lower I can't function. My inflammation markers, ESR and CRP, were never outside the normal range - didn't mean my symptoms weren't due to inflammation and pred sorted them in a few hours. But the underlying disease process is still active.

There is no way she can know the PMR is gone by looking at the markers if you are still on pred - it is meant to keep them low.

And a bit of explanation: when you have inflammation in your body, the liver is triggered to produce certain proteins in response, These proteins mean that the ESR (the rate at which red blood cells settle to the bottom of a vertical tube) and the c-reactive protein or CRP in the blood go up so testing them is an indication of what is causing symptoms (there are other causes). But they aren't 100% accurate - especially after you have been on pred and if the disease flares up, the markers may take a long time to rise again. SYmptoms ALWAYS trump lab results.

[Sydneychihuahua in reply to PMRpro]

Thank you for that I think I get more information from this forum than the doctor

[PMRpro Ambassador in reply to Sydneychihuahua]

I think most people do!! Always ask - someone will have the answer,

[howtotaperdown in reply to PMRpro]

HI Pmpro is your world-renowned field rheumy in UK? do you mind sharing who it is? thanks

[PMRpro Ambassador in reply to howtotaperdown]

Afraid not, Prof Christian Dejaco works in South Tyrol (Italy) and Austria. And he's why I want to stay here as long as I can!!!!

[Kaaswinkel72]

the problem seems to be “ the doctor is always right” and, beside, they are the ones dishing out the lollies/ prednisolone!

[Angelsmummy in reply to Kaaswinkel72]

They think they are!A lot of difference eh?Glad I have a dr that is so laid back he is at risk of falling asleep!I tell him 7 week taper he agrees….He lets me keep a stash of pred “ just in case” 🤫🌼😜

[Orange_2022]

I've never shown any signs of inflammation in my blood tests so my GP stopped the tests in the end. I've tapered very slowly and am on 3mg after 2+ years. The settling down after reducing is different from a flare due to an insufficient dose and I've learnt to feel the difference. Main thing is to reduce very slowly - see Dorset Lady's excellent taper plans. Wishing you the very best!

[Broseley]

Hi, I think it depends on whether your symptoms are due to inflammation or not. My rheumy discharged me after my bloods came back normal, 6 weeks before my appointment. By that time I had symptoms in my knee and hip. He said this was OA even though i had no swelling. I insisted on X Rays. I have only just got the result 6 months later after nagging his secretary. Meanwhile I upped my pred by 5mg and all the symptoms cleared. The XRay said mild OA in my knee with effusion under the patella (that's inflammation) and no OA whatsoever in my hip. So I believe rheumy was wrong. And the fact that the pred cleared my symptoms, which surely wouldn't work if it was OA?

So it's worth arguing your case if it happens again, and get an XRay.

[PMRpro Ambassador in reply to Broseley]

A knee effusion is very common in OA - fluid on the knee. It is due to inflammation and pred will usually sort it - whether oral or an injection into the joint.

my.clevelandclinic.org/heal...

[Broseley in reply to PMRpro]

Thanks. I had no swelling, heat or redness, but shooting pains down from my knee to my foot which GP suspects is caused by my back. I had been using flexiseq and volterol to no or little effect. The full XRay results said "Stable mild OA within the tibiofemoral compartments. Satisfactory alignment. The patellofemoral compartment is well preserved. There is a suprapatellar joint effusion present" The XRay was taken when the knee was at its most painful, before I'd taken any extra pred. (I was on 1/2mg)

I would appreciate your interpretation. Especially as my very painful hip was shown to be OA free. I am trying to convince my travel insurer that it was inflammation due to a PMR flare, especially as I also had pain and stiffness in my shoulders as well. Thanks pro.

[PMRpro Ambassador in reply to Broseley]

Sorry, I don't read x-rays!!!! If there is no OA to be seen or it is very mild -I think that is clear that the pain is due to something else. x-rays are valuable for what they DON'T show too. And PMR/bursitis is the next likelihood I'd think.

[Broseley in reply to PMRpro]

"Sorry, I don't read x-rays" - trouble is neither do travel insurance people! I was once turned down for insurance because my records said I had had a papilloma removed. They said I hadn't declared my cancer!

[PMRpro Ambassador in reply to Broseley]

Speechless ...

[Kaaswinkel72 in reply to Broseley]

” and the fact that the pred cleared my symptoms, which surely wouldn’t work if it was oa”.

With all my respect that statement is incorrect, but people find it hard to believe!

. Pred. Is the great equaliser: in many instances we only discover we have severe oa. When our dose of pred. Is low, then all our wear and tear and other monsters become symptomatic, ( necks, knees, hips} which means they were already there ( oa or soft tissue stuff like trochanteric bursitis); but the pred covered up the pain/ the symptoms.

My own example by the onset of the pmr , 67 yrs old, i had an xray which indicated “ moderate oa.” In the neck. When i started the pred. The symptoms of the oa: the pain, disappeared, “ thanks” to the pred. During tapering The neck symptoms regularly resurfaced, and disappeared with me taking a higher dose pred.

Now 7 yrs later my “ old neck” is heaps worse on the xray, but i only feel it as pain when my dose of pred. Is low. I hope i make myself clear.

In my study/ work as physio I have seen this time and time again.

[Darkchocolate1 in reply to Kaaswinkel72]

When I get new pains in my neck, shoulders and back I take a Tylenol. If it helps the pain I assume my pain is not PMR flaring but rather osteoarthritis. This helps me avoid going up on my prednisone dose. Is this a logical way to tell the difference?

[tangocharlie]

It looks as though you have a GP who doesn't know how to treat PMR whcih is pretty common unfortunately. Many are misinformed that once inflammation is under control you are in remission and then can just taper off steroids. The reality is very different and the PMR is volatile, relapses and flares are common especially when reducing steroids. Try following one of the very slow tapering plans such as DL suggests and see how you go, but if symptoms return make sure you let your Dr know. Also get some leaflets from the charity - you can print them from the website pmrgca.org.uk and say you are getting information and guidance from them as to how to manage this condition and taper steroids until one day, hopefully, it resolves. And read everything relevant in the FAQs and pass the knowledge on. And come back here if you have any problems and don't know what to do

[Sydneychihuahua]

After listening to you all I have been very lucky with getting repeat prescriptions. I have never had any problems thank god. I have taken on board all your comments so thank you everyone. I finish work on Saturday been here 5 weeks so back to Spain until January hope everyone's pain doesn't spoil your Christmas x

[CJDLSR]

One of the Drs I saw said similar - "if you can put up with the pain for a few weeks it's worth trying this" (she wasn't convinced I had PMR) She took me off pred altogether and rather quicker than folk on this forum would advise (like 15 - 0 in 2 weeks!!!) she said as I'd only been on the pred for 5 weeks "I'd be fine".

Believe me, I wasn't, and it's taken me since the middle of August until now to feel confident enough that the aches are now managed well enough (virtually non-existent now) for me to start a VERY gradual reduction, going 1.5gm from 20 - 18.5 at the moment on DLs 5 week tapering plan. If all goes well, I'll do 18.5 to 17, then will probably go 1mg at a time.

Having recently read advice here has reminded that Christmas can be a stressful and hectic time, Thankfully we will be on our own - rather busy in the run up to Christmas (although I have pulled out of quite a few things I would normally have done) but then we can be as quiet as I need to be. But I will review the idea of pressing on with the next taper until we're the other side of Christmas!!

Thanks again to all the amazing people on this forum, wthout whom I think I would be a nervous wreck (not normally my style!!) trying to understand all the conflicting advice (and sometimes very inaccurate advice) that I hear or read elsewhere.

So glad I found this forum!

[oscar294]

Hello,

Your inflammation markers are most probably normal because the prednisolone is working to reduce the inflammation to that level.

I would recommend having follow-up blood tests to confirm the your inflammation levels remain normal.

The inflammation blood test markers are ESR & CRP you can look the description of them on the net.

[DorsetLady PMRGCAuk volunteer in reply to oscar294]

Also under FAQs on this forum…

healthunlocked.com/pmrgcauk...