PMR type pain with normal blood labs

[Italybound62]

Hi. I just found this site and hoping to get some insight. The posts and advise I've read so far are outstanding and I wish I had found this site earlier. I have had PMR since December 2020. I've tapered down to 2 mg 2-3 times now. When I get below 4mg, the pain in my arms returns. I have assumed this is PMR but maybe it's not?? My C-RP levels have been normal for the past year. I just again got down to 2mg but went back up to 4mg due to arm/shoulder pain. I went for over 7 days with the pain before deciding to go up to 4mg.

my question: why do I feel pain while having normal inflammation blood labs? How is that possible? If we feel pain, doesn't that mean there is inflammation? I just got my lab results again today and they are in normal range. Should I just continue to reduce the prednisone and push through the pain? I'm also considering seeing an Endocronologist to get help with tapering, but I don't have fatigue (so maybe my adrenals are okay). Is this even warranted?

[PMRpro Ambassador]

Up to 20% of PMR patients have inflammation markers that remain within the normal range even before diagnosis but that doesn't mean they weren't raised for YOU. Your ESR and CRP SHOULD fall rapidly once you are on pred even if they were raised pre-diagnosis - and if they don't the chances are you aren't really on enough pred. The fact the CRP has been OK for the last year means you have been on enough pred to manage all the inflammation so there is no trigger to the liver to produce CRP in response to enough inflammation for long enough to flick the switch. The markers often lag behind symptoms - a raised CRP on its own should never trigger a reflex increase in the pred dose, it should be repeated to see if there is a trend as it can be raised for all sorts of reasons as it is a VERY non-specific marker. On the other hand - increased symptoms that are clearly PMR-like should be greeted with a raised pred dose. Symptoms ALWAYS trump lab results.

You are never reducing relentlessly to zero - you are titrating the dose to identify your personal lowest effective dose related to YOUR disease activity. And for you, at present, that is 4mg. That is why you repeatedly flare at about the same dose. Keep trying to push it in the same way and it is likely to get increasingly difficult to get things under control again. YOu will get lower and eventually off pred. Just not yet.

[DorsetLady PMRGCAuk volunteer]

Why do I feel pain while having normal inflammation blood labs?

Not sure if they were raised pre diagnosis, but up to 20% of patients never have raised markers. Even if your were raised initially, because you are on Pred that keeps them artificially low, and even when they are raised it can take a few weeks after the return of symptoms for them to react.

Plus a single test may not be that accurate - very often there could be a glitch which gives either a higher or lower dose than you might expect. Which is why we say if one seems odd, then wait a week and get another to compare.

If you stutter at the same dose, then that may be telling you that you have gone below what your PMR actually requires... for now at least.

How long have you been on 4mg this time, and has it resolved pains?

If so, I'd be inclined to stay there for a few months.. give PMR time to get back under full control...and also helps adrenals if they are still getting going.

Then reduce by only 0.5mg a time and use one of the following tapering plans here -

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

[Italybound62 in reply to DorsetLady]

Thank you for the incredible advice! I went back up to 4mg 5 days ago. I feel 90% improvement. I was going to try reducing to 3mg in a few days but it sounds like you are suggesting I stay at 4mg for a few months. I was using a long slow taper method where it takes 6 weeks to drop .5mg. It's also very difficult to cut methylprednisolone into .5mg size because smallest pill form in the U.S. is 4mg. so I was going to switch to regular Prednisone (keeping in mind the different strength) once I got back to 2mg again.

[DorsetLady PMRGCAuk volunteer in reply to Italybound62]

90% improvement is good…. But definitely worth staying longer that you originally thought - a month for sure, maybe a bit longer.

I did wonder about the 0.5mg decrease…. So if it’s too difficult you can still try 1mg a time, but increase the taper by repeating each stage. There’s always a way to get round obstacles.

[Italybound62 in reply to DorsetLady]

Thank you. What do you mean by ‘by repeating each stage’ ?

[DorsetLady PMRGCAuk volunteer in reply to Italybound62]

For example if you’re following my weekly taper - then repeat each week, or if the DSNS, then each stage as described here-

1 day new dose, 6 days old dose

1 day new dose, 5 days old dose

1 day new dose, 4 days old dose

1 day new dose, 3 days old dose

[Italybound62 in reply to DorsetLady]

I need to look up your ‘weekly taper’. I normally use the DSNS.

[DorsetLady PMRGCAuk volunteer in reply to Italybound62]

Not a problem to extend either one….

[Booch in reply to DorsetLady]

I don’t understand this What about rest of days?

[DorsetLady PMRGCAuk volunteer in reply to Booch]

See this - only copied first few lines as an example -

healthunlocked.com/pmrgcauk...

mine -

healthunlocked.com/pmrgcauk...

[PMRpro Ambassador in reply to Booch]

Rest of what days? DL's taper is based on weekly patterns, The first week you take the current or old dose every day except one, The second week you take the new dose on 2 days, the old dose the other days. And so on until you are taking the new dose every day of the week. Then you are ready to start again.

[AtopicGuy in reply to Italybound62]

Your doctor should switch you to prednisolone, now that you're on such a small dose, and prescribe 1mg. Note: 4mg of MP is the same potency as 5mg of P.

[PMRpro Ambassador in reply to AtopicGuy]

Since Italybound is in the USA, the likelihood is that prednisolone is not available. Prednisone might be but methypred is used far more.

[AtopicGuy in reply to PMRpro]

Prednisolone is approved by the Federal Drug Administration in the USA. It is available as a cheap, generic drug that has been around since 1955. Hence, it is on the World Health Organisation's List of Essential Medicines for every healthcare system on Earth. Nothing prevents doctors in the USA (or any country) prescribing it.

[Italybound62 in reply to AtopicGuy]

I’ll look into that. Thank you !

[AtopicGuy in reply to Italybound62]

Here's the latest WHO List of Essential Medicines. It includes prednisolone, but gives prednisone as a suitable alternative in the small print. They have the same potency as each other. Good luck!

who.int/publications/i/item...

[Italybound62 in reply to AtopicGuy]

Thank you!

[PMRpro Ambassador in reply to AtopicGuy]

I'm sure it is. It doesn't mean it is easily available or funding is approved by an insurance company for reimbursement. And the same applies for any country. A drug may be approved - but in the case of prednisolone in South Africa for example, only 5mg tablets can be found in pharmacies. We deal in practicalities here - not theory.

[AtopicGuy in reply to PMRpro]

Absolutely nothing I have posted is "theory"; everything is from good sources and I'm always happy to provide references. My point was that cutting up 4mg MP pills is dumb when 1mg P pills would do the same job more easily, so long as 5mg replaced 4mg. Which P doesn't matter: anyone reading the Forum can't avoid noticing that the words "prednisolone", "prednisone" and "pred" are used interchangeably. First time I noticed this I Googled to check whether they really did the same job at the same dose. Sure enough, they do, and both were approved in the USA in 1955. In patients whose organs are compromised, prednisone is kinder on the stomach, and prednisolone kinder on the liver.

Walgreens in the USA, for example, stock both Ps. In their Value-Priced range, prednisolone is in liquid form and prednisone as pills (see link below). Other pharmacies are available, of course.

walgreens.com/images/adapti...

[PMRpro Ambassador in reply to AtopicGuy]

When you have been on this forum as long as some of us, you will understand that while something may be available according to references you find on the internet, i.e. "in theory", in day to day practice they are not, You may think something is ridiculous - so do we quite often, but the reality is, that is the way it is, And if you can change it - good luck to you;

We use pred interchangeably because prednisone and prednisolone are interchangeable. In practice, methyl pred or Medrol isn't used a lot but DL and I usually identify which is being used by terminology or dose. Medrol doses are multiples of 4mg and if a patient refers to a "dose pack" it is almost always Medrol. But just because Walgreens lists both it doesn't mean that a patient gets the choice, it depends what the doctor wrote, or even that every Walgreens has it on the shelf. And a minority of patients go to Walgreens.

[Italybound62 in reply to PMRpro]

We have Prednisone in the US. Not sure about prednisolone. I am on methylprednisolone. I am going to try Prednisone 1mg tabs. But originally Prednisone did not work for me hence why I am on methylprednisolone.

[DorsetLady PMRGCAuk volunteer in reply to AtopicGuy]

Please check where a member lives when you answer rather than assume they live in same country as you.

Although the PMRGCA charity is UK based, members on this forum are located world-wide... which is why we ask members to include their country of residence on their bio, different drugs, different protocols.

[AtopicGuy in reply to DorsetLady]

I didn't. It is clearly ridiculous for any doctor to prescribe 4mg tablets to patients who are trying to taper in 1mg steps. Indeed, it seems bizarre that methylprednisolone is not easily available in smaller doses than 4mg! I Googled it and that seems to be the case!

Since prednisolone is a cheap, generic drug, which is on the WHO List of Essential Medicines for every healthcare system in the world, my suggestion was applicable to everyone, wherever they live. The WHO gives prednisone as a suitable alternative.

I share your concern than some on this forum are keen to offer detailed advice before a Member has posted their approximate age, symptoms or medical history.

[DorsetLady PMRGCAuk volunteer in reply to AtopicGuy]

It might be ridiculous to our way of thinking… but unfortunately we can do nothing about other countries protocols and practices.

[AtopicGuy in reply to DorsetLady]

Nothing stops us commenting that methylprednisolone is a poor choice of steroid for those tapering, if it genuinely cannot be sourced in 1mg or smaller pills.

[Italybound62 in reply to AtopicGuy]

Yes you are correct. I plan to eventually try 1mg Prednisone tabs using that conversion.

[AtopicGuy in reply to Italybound62]

Good. Remember: 5 mg of P is the same potency as 4mg of MP. Here's the source:

cks.nice.org.uk/topics/cort...

[PMRpro Ambassador in reply to AtopicGuy]

Very helpful - but cks is only available in the UK so no point linking it for someone in Europe or the US.

[AtopicGuy in reply to PMRpro]

Anyone on the web with a browser can see that link; can't you? It connects to a world-class source: the National Institute for Health & Care Excellence in the UK.

Here's the same information on Medscape:

emedicine.medscape.com/arti...

[PMRnewbie2017]

Agree with all of the above. Sadly medicine is rarely easy ir straightforward. I feel great tapering to 3mg. Just had a Rheumy consultation and my ESR and CRP up as are my platelets. Clearly there is inflammation somewhere but PMR/GCA are quiet. Hoping nothing more sinister is going on. .

[Elvied]

I’m having that problem too . My rheumy thinks the pain is from the withdrawal of prednisone. I’m on 25 mgs of methotrexate which has made a big difference to my pain . I’m tapering by half a milligram a week . So far so good . cRP now normal