Does anyone else have normal blood tests (sed rate/crp)and still have pain???

[Penny1955]

I have been on prednisone since October 2020.(20 mgs) I am now tapered down to

3 mgs a day. blood tests are normal but pain is horrible.

[piglette]

Around 20% of individuals have normal inflammation markers which do not seem to change. The rule of thumb is to go with the pain not the blood test results.

[SlothSandpit in reply to piglette]

That's really interesting. Where did you learn that from?

[piglette in reply to SlothSandpit]

See Dorset Lady’s reply below. By the way this thread is 4 months old.

[PMRpro Ambassador in reply to SlothSandpit]

All the medical literature which we have read and base much of our advice on.

[DorsetLady PMRGCAuk volunteer]

As piglette says up to 20% of patients don’t have raised markers…were yours originally? Plus even if you do, they can lag behind symptoms…..when were they last tested, and how long have you had pains?

Would also say taper is fast, so you may have reached your limit tapering wise for the time being. You are not reducing relentlessly to zero, you are trying to find the lowest dose that gives you same relief as initial dose.

This post gives info on a flare if that’s what it is - healthunlocked.com/pmrgcauk...

[PMRpro Ambassador]

Were yours normal at diagnosis? Not that that means a lot - some people just don't develop raised levels when they are still on pred or they may lag a long way behind and so the good rheumies go by symptoms not lab results. Where were you last OK?

[Penny1955 in reply to PMRpro]

My sed rate/ CRP both high at diagnosis.I think pain came back around 10 mgs Pred but not sure. Thanks

[PMRpro Ambassador in reply to Penny1955]

Once that return of pain was there you should really have slowed the taper down - I'd say you have well overshot the dose you need to control the symptoms. And if pred helps the pain it is NOT fibro, it isn;t inflammatory in origin and pred doesn't help - no reason for your GP not to let you try 10mg for a week or two and go back to 3mg without tapering if it doesn't. Everyone I know who has both fibro and PMR says they can tell the difference.

[Penny1955]

Sed rate and CRP were both high at diagnosis. Then normal after couple of months on 20 mgs prednisone. Pain started after the tapering but blood tests all normal so my Dr said pain must be my Fibromyalgia. It is NOT!!Thanks so much!

[PMRpro Ambassador in reply to Penny1955]

At what dose did the pain start to reappear? Can you remember?

[HeronNS in reply to Penny1955]

After two months at 20 mg of course your inflammation markers were low. What did your doctor think the pred was doing? Even if they are still low, symptoms must always rule.

[Bagaof4]

My SED has always been normal, but pain was horrible. Then GP tested CRP and at 10.4 was just slightly elevated. Rheumatoid factors were all negative. Pain was terrible first shoulders then hips. Tried me on Pred and I had relief within 6 hours. Referred me to rheumatologist who started me on 20 mg in August and am now at 7 mg. Last bloodwork at end of Nov showed low SED and CRP levels. I always wondered how my inflammatory markers are so low, yet I was in such terrible pain. Guess I’m not the only one.

[PMRpro Ambassador in reply to Bagaof4]

The markers SHOULD be low once you get on pred, it shows you are on enough - but up to 1 in 5 of us don't develop what is called the acute phase response which is what produces the raised numbers. BUT they can be raised without being out of "the normal range". My ESR ran at 16-18 which is still well inside normal range - but it was very raised for me, my normal is about 4. Normal range is the range of readings found in a very large population of apparently healthy people - not the range that is found in one single person. But no-one gets their blood checked until they are ill - so aren't aware of their real normal when not ill.

[Bennijax]

YES. It's a bit frustrating because my GP presumes I'm getting better. The markers at last blood test in early December were all of them normal. I've slowly been tapering from 12mg since early September, and I've finally reached 9mg this past week.

Fatigue, and pain in wrists, hands and feet varies day by day, but mostly always there to some degree, some days very intense. No shoulder or hip pain however. I was much less in pain at 10mg (and hardly any fatigue for many weeks) but I developed a puffy round face which looks so unlike me. I hope to get to 8mg by early March.

[PMRpro Ambassador in reply to Bennijax]

Be careful - you are already getting warning signs that you are on the borderline. Push it and you could end up in a full flare that will need a retrun to higher doses of pred to get under control. And once you start that - subsequent reductions are often more difficult.

[Bennijax in reply to PMRpro]

Thank you, I just have a goal but I won't push it.

I won't go further down until I think I can. MyRheumy is not happy with me, and he wants me to start Methotrexate but he can't organise it for me in my borough. I would need to travel a distance. I got down from 12 to 10 fairly quickly, and without problem, but getting to 9.5 and then to 9 has been really challenging. I'm staying put at 9 this month to see what happens.

[Sharitone in reply to Bennijax]

Hi Bennijax. I don't get why your rheumy can't organise MTX. My GP prescribes it and I just get it from the chemist in the normal way.

[Bennijax in reply to Sharitone]

He said I first have to go for assessment at a hospital that isn't in my London borough, and where I would go for subsequent check ups. He said he couldn't prescribe for me. Did you have an assessment first?

[PMRpro Ambassador in reply to Bennijax]

Were you referred to the rheumy by your GP? Or do you see him privately? Methotrexate is done on a shared care basis - there is an official procedure.

[Bennijax in reply to PMRpro]

GP

[Bennijax in reply to PMRpro]

I think I prefer to stay with the devil I know, the preds, and not complicate things with Methotrexate; the rheumy is pushing me in that direction.

[PMRpro Ambassador in reply to Bennijax]

I agree - I think he is being a bit hasty. But they almost all are.

[Sharitone in reply to Bennijax]

Only a normal rheumy appointment, at a local hospital, not even the regional one. He gave me 12 weeks' supply on the spot, then the GP has prescribed it since. Tbh, I suspect there was little expectation of it being successful, and was only a box to tick before proceeding to TCZ. I can't say MTX seems to have been much help, but then, I don't know what it would have been like without!

[Bennijax in reply to Sharitone]

Did it help you to reduce the Preds?

[Sharitone in reply to Bennijax]

Er, no. Not that I've noticed, anyway. I've been taking it 6 months. I have reduced pred in that time, from 35mg in June to 13 mg now, but with hitches, and that's probably what you would have expected without MTX. But it works for others, and it hasn't had some of the more obvious side effects that pred has.

[HeronNS in reply to Bennijax]

Are you tapering by half mgs now? the lower the slower!

[Bennijax in reply to HeronNS]

yes with the half mg steps

[Noosat]

I have tapered to 3.5 pver 3 years last time SED count OK but still have pains and stiffness, perhaps the pains caused by arthritis so I remain on 3.5 hoping next month to get to 3mg

[HeronNS in reply to Noosat]

Do the pains go away if you take a different painkiller, something which you would expect to work for arthritis? If that works effectively you have your answer. If it doesn't, or only partially, then it would seem your pred is a wee bit too low at present.

[Noosat in reply to HeronNS]

Yes, I take Tylenol, hink it is paracetamal and lie down for a wile, seems to help

[HeronNS in reply to Noosat]

Yes, Tylenol is paracetamol in the UK and acetaminophen in North America. Not considered effective against PMR pain, although I wonder if it helps with pred withdrawal????

[Noosat in reply to HeronNS]

Right.if pain eases at all I know it is not PMR pain , but probably osteoarthritis or some other complaint

[HeronNS in reply to Noosat]

I think that is basically true of Tylenol. Meds like aspirin and its relatives may, I think, have a minor effect on PMR. I don't think Tylenol is anti-inflammatory. Certainly aspirin is, and the other common painkillers like naproxen and ibuprofen are also anti-inflammatory so you'd expect them to help PMR a bit. Unfortunately the NSAIDS interfere with cartilage regeneration so they aren't a great idea to take for osteoarthritis. But acetaminophen is not a NSAID.

[Penny1955 in reply to HeronNS]

Thanks! Trying 2 Tylenol this morning to see if pain goes away. Do, if the pain goes away it's not PMR?? 😊

[PMRpro Ambassador in reply to Penny1955]

Not necessarily - but it makes it less likely