CRP and SED rate down to normal range but still have symptoms of PMR

Does this mean that it is expected that you will still have PMR symptoms while you are tapering down when your labs show normal range?

Yes, I am much improved from where I started. I had heard of residual bone pain, but my symptoms are also muscular, feeling of inflammation in muscles, heaviness of limbs, fatigue - all of which were less on my higher dose of 5 mg. It seems like one or two others on this site have also experienced global PRM symptoms even when markers for inflammation in blood return to normal range. I guess I am not alone in this - which helps greatly to know. I don't know anyone else personally with this condition, and it is so wonderful to hear from others who understand and have dealt with this. 

Exactly what I was wondering...My doctor seemed to be looking for another explanation, but I am only 10 months into this and from what I am reading from the community on this site, it is normal for it to take this long and to have continued symptoms even once CRP and SED come down.

Your joints I'm afraid are probably never going to be the same again after this disease and pain from the joints is often referred into the surrounding muscles and tendons.

Thanks ben1994. At least I know what the range of possible outcomes is - which always makes coping with it easier. 

My understanding is that PMR does NOT damage joints.  

Gail, it seems quite common, from what I've read on the forums, for people to continue to experience symptoms even once the markers have come down to normal levels.  It's also been said that some people never have raised markers even though they have all the classic symptoms of PMR and respond to pred.  Or their markers may have been raised initially but never rise again, even if the disease seems to become more active and cause symptoms again.  Just another example of how idiosyncratic this disease is, and how difficult it must be for doctors to agree on the diagnosis.

Anhaga, this is tremendously helpful to know. It is also encouraging to me to know that this is not uncommon.

I have to admit I was discouraged when my Dr. announced that my levels were "normal" and I was "over" the PMR - while my symptoms were still raging and I had to go up 1 mg! (All my PMR symptoms had returned when going from 5 down to 4 and I did not feel like I was "over" it!) I no longer feel like I am getting a "failing grade" in my progress toward recovery if others seem to experience same. 

Thanks.

 

It doesn't erode them - the way RA would. But it will scar the joint capsule.

I'd be interested to see your references about joint scarring in PMR. The Australian Rheumatology Association says "The good news is that polymyalgia rheumatica does not cause permanent damage to the joints." and I have never come across any expert who has mentioned it. There ARE autoimmune causes of damage to the joint capsule - but I haven't come across it being blamed on PMR.

Chronic inflammation always leads to scarring.

But it isn't the joints that are inflamed. PMR and GCA are forms of vasculitis, inflammation of the blood vessels.

GCS is a vasculitis.

I don't think PMR is classified as a vasculitis

The joint capsule is the site of inflammation in PMR - hence the symptoms.

 

GCA not GCS

Then explain why my untreated PMR manifested as pain in muscles, in fact I thought it was osteoarthritis becoming much worse, and wondered throughout my untreated year why my muscles hurt and NOT my joints!

I was actually told that PMR is a form of vasculitis...I read somewhere that some doctors think GCA and PMR are actually different manifestations of the same disease. Would have to search for that medical journal article again to find reference though.

I actually carry a "rescue dose" of prednisone with me in case of sudden GCA symptoms. I had a relative with GCA so I am especially vigilant. 

One piece of good news is that at least we have prednisone to help with PMR. My doctor said most of the other auto-immune diseases have few to no treatments. While PMR is not pleasant, I still consider myself lucky. 

Osteoarthritis gives pain in the overlying muscles as well and it is categorically a joint disease. The pain is referred.

Theres an association between GCA and PMR. It would be fascinating if they turn out to be different sides of the same coin.

But Autoimmune diseases often have associations with each other - Theres an association between T1DM, Hashiomoto's, Coeliac and Vitiligo. 

Gail, you and I are in a very similar situation.  I've had PMR for 13 months.  I wasn't able to get to see a rheumatologist until 4 months in, so I don't know what my initial markers were when I had severe pain.  While on a prednisone tapering schedule, my markers were never high.  The prednisone has done wonders for me and tomorrow I start a month at 2mg.  However, while I feel great during the day, in the morning I continue to have the muscle symptoms you're having, but no joint pain.  It takes 15-30 minutes for my muscles to not feel heavy, but time and coffee 😊 get me going fairly quickly.  My schedule has me going of prednisone the beginning of January and so far things are going well.  I'll post an update in January after I'm off prednisone.  Based on many posts I've seen, I know that I've been very lucky with my short recovery.

Be very careful.  i was down to 1.5 and feeling pretty well, but attempts to lower to 1 mg triggered a (relatively minor) flare, so am actually back up to 4, and I don't expect to be back to 1.5 until probably next spring. Although you might want to be off pred by a certain date, it could be wise to slow down somewhat, especially if you continue to feel residual symptoms.  Remember, "It isn't slow if it works". 

Thanks, Anhaga—I know where you’re coming from.  Even though you had to go back up to 4mg, glad that overall things seem to be going well for you.