Good blood work; still in pain

[jackswife]

My first post here, although I was diagnosed in Oct, 2017. Apparently my blood work is 'good' (sed rates, etc.) and so my doctor (second doc) tells me to keep reducing my prednisone dosage. However, I still complain of pain (hips, groan, shoulders) and stiffness, and I can't get off the floor if I want to do yoga (can't do yet, although I used to do it regularly) or play with my grandkids. My doctor tells me to continue to do my exercises (stretch and strengthening) and walks. I am 68 and have not led a sedentary life yet I get the impression that they think it's just normal aches and pains of aging! Anyone else have the experience of good blood work inspire of PMR pain?

thank you

[Linny3]

Hi

Yes I have the same problem. My blood work went back to normal after the first doses of pred. I asked my dr. why then do I hurt so badly. She said the pred. corrected my blood work but is not totally taking care of the inflammation. For as bad as I hurt I would think it would show up in blood work. That doesn't seem to be the way it works.

Good Luck

[jackswife in reply to Linny3]

Thank you, Linny3. Did she allow you to continue on prednisone and control your dosage?

[Linny3 in reply to jackswife]

yes I have been on various strengths of prednisone for 2 years and 3 months.

Can't seem to get below 10 mg.

[DorsetLady PMRGCAuk volunteer]

Hi,

It’s quite common to have ‘good’ blood test results, but still to have PMR aches and pains. That can be due to a few of things, the Pred is keeping the inflammation damped down sufficiently to keep the markers down, but not enough to stop the odd pain; you may be one of those people who never have particularly high markers but still have symptoms; or the markers are just lagging behind the symptoms.

That’s why we always say on here - the symptoms are the key - always!

You don’t say what dose it are on, so some could be the aches and pains of life, but if you’ve only had PMR for less than 2 years I would suggest that’s the reason!

Your second doc obviously is of the old school that thinks PMR only last 2 years - wrong! Recent studies show nearer 6 years.

[jackswife in reply to DorsetLady]

Thank you, DorsetLady. Any chance you can site those recent studies? I haven't found them and would love to bring them to my doc.

[DorsetLady PMRGCAuk volunteer in reply to jackswife]

Hi,

This may help -

rheumnow.com/video/dr-kathr...

[jackswife in reply to jackswife]

Thank you, DorsetLady. That's exactly what I was looking for.

[PMRpro Ambassador]

If you are on some pred then for some people the blood markers don't rise even if they have symptoms suggesting the PMR is flaring. Symptoms are ALWAYS trumps and you need enough pred to manage the symptoms - not just the laboratory numbers.

However - do you know what your readings have been? Have they been lower and are now rising but still "within normal range"?

[Emerlad_70]

My bloods have never been bad and my Gp didn’t want to diagnose pmr but I had all the other symptoms she did start me on prednisone and I have been much better I have been reducing every fortnight not too bad so far the first two days of reduced dose the pain comes back I persevere nd not too bad on 12.5 at the moment

[Oxford8]

My bloods have never shown raised levels of ESR and

[Oxford8]

Oops... my PMR was undiagnosed for a long time because of no blood markers. I was being fed high dose co-codamol and anti-inflamatories which did nothing for the pain. Then an enlightened doctor (my pred saviour) said 'bloods or no bloods! I think you have PMR. He started me on pred 15mg and within 48hours the pain was gone. I tried to taper too quickly, flared, and then learned from this site about the need for a much slower tapering journey. Now GP and Rheumatologist let me taper at my own pace, even half mg at a time. Stalled at 8.5mg at the moment.

Jack'swife, I hope your GP will support you in raising the pred dose to the point where the pain is managed and then tapering slowly. Slow and steady is the best way to travel this road. 🐢🐢🌷

[jackswife in reply to Oxford8]

Thank you, Oxford8. I am seeing my rheumy today. If she doesn't hear me bounty pain and allow me to continue on prednisone in spite of my bloodwork is good, I will return to my GP. She will hear me about my pain.

[Emerlad_70 in reply to Oxford8]

My GP was the same and also pain went when I started on preds. I started on 20mg and now on 10mg the first day of reduction I feel some pain but not too bad till I get used to lower dose

[Aleish]

I believe you probably should be put on methotrexate. I was on Actemra but it caused dividiculitis and I did not want to go up on prednisone but I needed something for the pain even though the sed rate seemed ok. See if you can go on methotrexate? I was started last week on a l day a week small dose. I’m still in pain because it takes weeks to work but I was trying on clothes at Ross today and actually spent almost two hours in store trying on a lot of stuff. I’m 75 and have terrible pain most of time but I did not collapse. I really am not sure if the methotrexate helped me or I am just getting more energy, at least for today. Of course now I am home and ready to crash. Hope this will help you. I’m two years into treatment for GCA/PMR.