Blood tests

[blueisgreen]

I have been working down on my prednisone to 5 mg, but all of my shoulder and hip pain has come back. But despite 3 blood tests nothing shows the inflammation marker s associated with PMR. Has this happened to anyone else? Is there some other disease that it could be?

[PMRpro Ambassador]

It is not uncommon for two things to happen. One is that the increase in the blood markers lags a long way behind the appearance of symptoms. The other is that the markers don't rise at all while the patient is still in any pred.

Confusing - and it fools a lot of doctors!

[blueisgreen in reply to PMRpro]

Thanks! I’ll talk with my doctor about that.

[PMRpro Ambassador in reply to blueisgreen]

Forgot to say: symptoms rule! OK?

[Yellowbluebell]

As a newbie on the site I know that the experts (longtimers of the disease) will be along shortly to help if they can , but I do know that there are plenty of people who have full blown pmr but their markers have never been raised. The emphasis should be based on your symptoms. The others on the forum will be able to help with what else they think it could be based on their experiences. Good luck

[blueisgreen in reply to Yellowbluebell]

Thank. I’m new too, so your comments gives me hope.

[Yellowbluebell in reply to blueisgreen]

The site is a fantastic way of learning about prm/gca from people who are living with the disease. Especially as doctors don't seem to know that much about it!! We are often found to be having a laugh (better than crying) and the friendship/ support is great. Welcome to the club'

[nicpatan2 in reply to Yellowbluebell]

I have had two recent relapses of PMR but all blood tests show as completely normal. Steroids ease the pain and stiffness almost immediately and my symptoms are classic so yes, I think you can have PMR with no blood markers

[Yellowbluebell in reply to nicpatan2]

Hi, you are responding to a year old post on the forum which may be confusing to people. You can always start a new post with any questions you may have so that people can help give advice if thats what you want. Debby (Yellowbluebell) moderator

[PMRpro Ambassador in reply to nicpatan2]

The actual numbers can also lag a long way behind the inflammation being enough to cause symptoms - especially if the flare symptoms reduce quickly with the pred. The liver takes time to make the extra proteins that are the reason the blood tests rise.

[Hidden]

Blood work is only one indicator. It is helpful to know there is no increase in inflammation through blood work. My bloodwork has been fine for months and I'm decreasing prednisone and I do have stiffness in upper arms and pelvic area in the morning which decreases as they day goes on. The discomfort is not so bad I want to up the prednisone. As an aside: I have a friend who has had PMR for 25 years (she was a young starter) and went through the various meds and reductions so that now she is only on Methotrexate but she takes one Tylenol Arthritis (650mg) morning and night and finds that keeps things comfortable.

[Joan-E-D]

I tried going down from 5 mg to 4 mg via DSNS method as per GP instructions but when I got to 4 mg over 3 days the aching legs came back. As I was going to have a blood test and see the GP again, I stupidly continued and reached 4 mg for 6 days. My legs got worse and my shoulders and arms joined in their pain. My blood test results were ESR 25 (previously 23) and CRP 5, (previously 9) so no indication of a flare from them. I told the GP about the pains and she recommended I took 5mg and 4 mg alternate days. This hasn't helped at all so I went up to 9 mg (5mg more, as PMRpro has recommended to me before) hopefully to mop up the inflammation. That felt better so I then tapered down again to 6 mg. At 6 mg my legs and arms ache again even though they were reasonably O.K. at 5 mg before. Now I'm confused as I thought my lower limit was 5 mg before but now it seems to be above 6 mg. I realise yo-yoing isn't a good idea, so I'm not sure what to do now.

[PMRpro Ambassador in reply to Joan-E-D]

It will take time - be patient. You say they were "reasonably OK" - that isn't the same as "OK" and you were probably just building up very slowly. But I also found that I couldn't get back to such a low dose after both my last 2 flares.

[blueisgreen in reply to PMRpro]

I'm discouraged because I was at 4 when flared up. Went all the way up to 20 in 5 mg steps but felt worse. Then had to go back down to 5 for a PET scan. Miserable. Now up to 15 and it's not working. Looking at pairing with CBD or hemp to control symptoms.

[PMRpro Ambassador in reply to blueisgreen]

You can try them - but they have no guarantees either.

If 20mg pred didn't improve things by 70% within a short time there have to be serious questions asked about whether this is really the PMR we discuss here. PMR is just the name given to the constellation of symptoms caused by an underlying disorder - and there are several. What did the PET scan show? Anything?

[blueisgreen in reply to PMRpro]

Still waiting on results from PET scan.

[blueisgreen in reply to blueisgreen]

PET only showed increased metabolic (something) in hips and shoulders which is where my pain is. Doc says this is consistent with PMR, even though blood tests don't indicate inflammation. (!)

[PMRpro Ambassador in reply to blueisgreen]

"Increased metabolic activity..." - like tumour cells, inflamed cells have a higher metabolic rate and so take up more of the glucose used in the PET test. This means the "label" is more concentrated where there is inflammation and shows up on the imaging. So you have signs of PMR in the right places - even if the blood tests don't suggest it.

[Joan-E-D in reply to PMRpro]

Thanks for your reply. What dose of pred. do you think I should take now? Should I go up again now or should I persevere with 6 mg which is still higher than instructed by my GP. What happens if one yoyos to find the correct dose? I thought I'd read somewhere that is it not a good idea.

[PMRpro Ambassador in reply to Joan-E-D]

Not something any of us can say - but you need however much you need to manage the symptoms. Doesn't matter what it is - the underlying cause of PMR can increase in activity too and then you need more pred anyway. Your GP isn't in charge: PMR is. That is something she has to learn - if you need more to manage the symptoms, you need more. And if she forces you to reduce further she runs the risk of you flaring properly and having to go back to a significantly higher dose - exactly what neither she nor you want.

[Gardenman]

I’m 66, was diagnosed a year ago (when suddenly I felt like 86); inflammation markers high, difficulty getting out of bed, dressing, showering. The symptoms disappeared within 48 hours of starting Pred at 15mg. My inflammation markers have been normal for several months, but I still have the nighttime stiffness in shoulders, arms, hands and legs, or after sitting or driving. The symptoms are liveable with except for difficulty sleeping. I’ve steadily reduced from 15mg to 1Mg a day, with no change in blood results and no discernible effect on symptoms. My rheumatologist was honest in admitting last week to being baffled and recommended stopping the steroids completely if I can live with it. I wonder if I have been misdiagnosed with PMR - the rheumatologist opined that 15mg of Pred will disguise most symptoms.

[PMRpro Ambassador in reply to Gardenman]

I think the rheumy is being a bit naive - 15mg will typically help in PMR although it is the bottom of the range for starting dose but rarely does much for other options. I'd also ignore him on the 1mg - there are many people who find that is enough to hold the symptoms at an acceptable level - as yours appear to be because there aren't gone are they? I'd not stop straight off - I'd try 1/2mg first, reducing slowly from 1 to 1/2 over a couple of months, And take a couple of months to get to zero. These are miniscule doses and doing no harm but there are people present on the forum at the moment who will tell you that dropping pred altogether resulted in a return of symptoms, albeit after a couple of months.

Men do have very different experiences of both PMR and pred and I believe there are at least 4 different versions of PMR including a short-lived form, possibly similar to reactive arthritis. Something under 1 in 5 get off pred in under 2 years. Many people don;t see their blood markers rise while they are taking pred - no-one knows why, it is just so.

[Janstr in reply to PMRpro]

Hello PMRpro. I am interested in the different versions on PMR. Do you have more information? Thanks for your help

[PMRpro Ambassador in reply to Janstr]

Not really - it is just the patterns I have seen over 10 years on the forums, all 3 of them, and with hundreds of patients and their journeys.

[Janstr in reply to PMRpro]

I had wondered about this myself, as inititally some people seem to get the full whammy PMR symptoms happening almost overnight, while others ( like me) build up over a few months. Also some people have raised inflammation markers & others don't.

[Gardenman in reply to PMRpro]

Thank you for such a helpful insight.