Joint pain quandary

[Truelies]

Hey, This is my first post.I am very thankful for this group.I enjoy learning from people who know first hand.I was diagnosed with GCA/PMR in May 2018.I am on prednisone 2.5 mg daily at this time. I started with 60mg daily and have gone up and down with flares and taper .I had the excruciating headaches, jaw and ear pain.Neck, shoulder, back and hip pains.The fatigue and morning stiffness .I am familiar with these aches and pains.Now after a month of being on 2.5 I am having a new onset of different area and type of pain.Both inner elbows , knees and hands hurt.My knees are severe, making walking painful.Gp ordered X-rays and they showed nothing. Rhumy said PMR does not affect these areas, must be beginning of arthritis.He told me to take Tylenol. No spike in ESR or CRP. Has anyone else had new areas begin to hurt after almost 3 years?Thanks in advance

[Constance13]

Welcome "Truelies" (appropriate name these days).😂😂

I have arthritis in all those areas you mentioned so it really could be the extension of arthritis. There are many different types - inflammatory, age related - "travelling" (yes there really is an arthritis that seems to travel from one joint to another). Mines inflammatory and I take Cocodamol (Tylenol) - it's the only pain killer which helps me.

Others will be along with their stories/advice.

Constance. 💐

[Truelies in reply to Constance13]

Thanks for reply. Hate you have this. The thought of something else going on ......Best Buy me a big bottle of Tylenol

[JanetRosslyn]

Good morning and welcome Truelies.

I was diagnosed with PMR in Sept 2016 and with GCA/LVV in Sept 2019. A few weeks ago, when dropping from 5mg to 4.5mg Pred, I developed very stiff and painful hands - something I have never had before. Could barely use them. I also got occasional pain in my elbows and heels. What the..????

On the advice of my Rheumy Nurse I've now done two weeks at 10mg Pred and I'm due to phone her today to report any change. The increased Pred has helped a lot, but there is still residual pain/stiffness in the hands - it's worse in the mornings but lasts all day. What I have noticed is that it's been much better each Saturday, the day after I take my 17.5mg Methotrexate, and that it gradually creeps back as the week goes by.

I'm wondering if it's a flare of some sort, or if it's arthritis or something else? I had my regular blood test a couple of days ago - maybe that will give a clue.

Meanwhile, I'm trying really hard not to get depressed about it all, it is what it is and I'll just have to keep dealing with what life throws at me. I know it could throw a lot worse!

[Truelies in reply to JanetRosslyn]

Thanks for your input.I was also concerned it was a flare.But I went to Rheumy 3 days ago and he left my prednisone alone.He saw my swollen hurting hands that are now weak.He pressed on my painful knees and elbows. Anxiety is on high alert .Keep us updated

[PMRpro Ambassador]

Well the rheumy is wrong - it CAN affect those areas although mine was in the early stages, but they weren't the first signs of PMR, that was what felt like a restriction of my shoulders rather than shoulder pain.

First try the tylenol to see if it does work - if it doesn't, ask your GP to let you try a short course of pred to see if that helps. PMR affects the soft tissues AROUND the joints, often causing inflammation at the attachments between muscles, ligaments/tendons and bones. And it can be sore as you describe.

Extracapsular structures in the knee include the lateral ligaments and in the hand the metacarpophalangeal joints - both discussed here (as well as, it should be mentioned, myofascial lesions):

jrheum.org/content/jrheum/4...

"PMR should be recognized for what it truly is — not a syndrome of shoulder and pelvic girdle pain and stiffness, but a chronic, inflammatory disease of musculotendinous structures"

[Truelies in reply to PMRpro]

Thanks for the enlightening article.I find so little info on the topic.what I do find is repetitive.I’m sure as everyone stricken with this ,I was very healthy and active prior.I’m waiting to get better to get back to normal and it’s not happening. I will fist try Tylenol and go from there.

[DorsetLady PMRGCAuk volunteer]

Rhumy said PMR does not affect these areas, must be beginning of arthritis.

Oh yes they do!... but at such low doses they could be something else, but it doesn't sound like it.

X-rays should have shown arthritis, even minimal degeneration

Does the Tylenol help? If so, indicates its not PMR...if it doesn't, then maybe there's your answer. Just because CRP/ESR aren't risen, doesn't rule out PMR/GCA.

If Tylenol doesn't help then maybe try 5mg for a week and see if that does. If so, you van probably drop back down to 4mg or even 3.5mg - but certainly just above where issues started this time.

You and your Rheumy may be surprised how much even 0.5mg makes at such low doses.. and 3 years is not necessarily as near the end of both illnesses as both of you think.

[Constance13 in reply to DorsetLady]

DL Cocodamol has help me since I first started PMR. My arthritis is inflammatory so Pred helps that as well as the PMR.

[Truelies in reply to DorsetLady]

Thanks for your help.I am gonna give Tylenol a chance. If no clear improvement,will increase prednisone.I have been to my PCP and Rheumy and left feeling disappointed as I walked out with the same excruciating pain I walked in with.