Return of PMR?

[Pmrat60]

I was able to get down to 0 Prednisone after 28 months. It was my third attempt. Every was good until about a week ago (4 weeks since last Prednisone) when I started having morning shoulder pain and stiffness. It was gotten progressively worse, and now involves hips and knees. I was also on .4ml MTX (inj). Lab work taken earlier this week with both C-Reactive Protein and Sed. Rate normal, however IL-6 went from 3.7 in July to 7.56. Follow up with Rheumatologist this week. Do I just tough this out? I hate the thought of return to Pred. My muscle tone and strength is quite diminished.

Thanks in advance for the insight and advise from this wonderful group.

[DorsetLady PMRGCAuk volunteer]

The trouble with ‘toughing it out’ if it’s definitely PMR, then it’s only likely to get worse….but as you are seeing Rheumy this week then he is likely to say ‘back to Pred’.

Depends how fixated he is on ESR/CRP levels. or whether he is led by symptoms.

You may find that a relatively low dose (below 5mg) is enough to solve the issue, and won’t cause any problems side effect wise.

28 months is not long for PMR in most cases.

[Pmrat60 in reply to DorsetLady]

My CRP/SED rate was only elevated when I was first diagnosed. They check that every 2 months and almost anyways very low.

[DorsetLady PMRGCAuk volunteer in reply to Pmrat60]

Okay, but that doesn’t mean it isn’t PMR…symptoms rule!

[PMRpro Ambassador]

You really aren't heading relentlessly to zero - you are looking for the lowest dose that works to mop up the daily dose of new inflammation as the body sheds cytokines in the early morning that create IL-6. It is not uncommon to discover that the lowest effective dose is in fact very low - for many people 1mg is enough but if they stop altogether, within weeks the symptoms start to return as the inflammation builds up. If the IL-6 is rising I'd say that was fairly conclusive this is the PMR still active.

Toughing it out almost never works - like a dripping tap fills up a bucket and eventually overflows, the inflammation will build up too and get to the level that causes symptoms, as it already is, left without pred it will keep on building up and you will, sooner or later, be back where you were before starting pred. If you give in quickly you will possibly manage on just a low single figure dose, well under 5mg if you are really lucky. Leave it and you may have to start all over again from the beginning and take a much higher dose - and into the bargain you may well find it harder to get under control.

[Pmrat60 in reply to PMRpro]

Thanks again for your post PMR Pro. My brain knows you are so right, my heart on the other hand want to be off all meds. Likely my Rheumatologist will have me back on Pred this week. 🙁

[PMRpro Ambassador in reply to Pmrat60]

We ALL want to be off meds - unfortunately, PMR comes when it wants, lasts as long as it wants and goes when it is ready. In the meantime - there is a choice: pred and live normally and pain-free or no pred and some degree of pain/disability

[Pmrat60]

Thanks. I ordered the IL-6 lab on my own ($130.00) as Ins. Will not Pay, so MD won’t order. internet is a great resource. I tried to get them to put me on the TCZ when I was first diagnosed, but Again Insurance won’t pay, so MD’s won’t prescribe. I’m going to ask again this week.

[Pmrat60]

Thank You again!

[cycli]

Hi Pmrat60. Good advice here I think. Follow head not heart.