head and neck pain, advice please

[Judywalks]

After 10 yrs of PMRGCA i have now stopped Pred and Methotrexate. Stopped Pred about 1 yr ago and Methotrexate about 3 mths ago on advice of Rheumatologist. I tapered Pred slowly down to 1 mg every other day and finally before stopping was on 71/2 MGM’s Methotrexate.

Until now I have felt fine but recently I feel achey again. I had a shoulder replacement about 18 mths ago and am now experiencing pain radiating from shoulder to upper back and neck and into back and top of head with also frontal headache. Very debilitating.

Any advice re this would be really helpful

[SnazzyD]

Hello, I presume you are getting the pain on the operation side. Have you had any physio recently?

[Judywalks in reply to SnazzyD]

No physio. The pain is on operation side. I did have a fall a few weeks ago but didn’t experience pain after that . The pain I have now is recent

[DorsetLady PMRGCAuk volunteer in reply to Judywalks]

Fall may have wrenched something… so plenty of TLC …

[SnazzyD in reply to Judywalks]

Sometimes seemingly innocuous injuries can set up a slow burn problem. You might need someone used to dealing with musculoskeletal issues to work out what bit is upset. If something in the back, chest or neck is out of whack it can certainly cause headaches. I know from my own experience! The scar tissue in my chest and into the armpit can cause a slow creep, painless contraction and the knock on effect is bad neck and headache. My osteopath always goes to my chest and shoulder and hey presto, it’s sorted. Then follows a kindly ticking off for letting it get to that point.

We can’t say exactly what it is and whether it is PMR or not as your shoulder history complicates the story. A knowledgeable person needs some eyes and hands on really.

[PMRpro Ambassador]

That sounds possibly a back/neck/shoulder muscle problem which can lead to headache and the other pains. As Snazzy asks - have you have physio recently? Or done anything to upset your back/shoulder?

[DorsetLady PMRGCAuk volunteer]

4 years after my replacement shoulder (although I do have a rotator cuff issue) if I’m too gung-ho at Pilates my shoulder/neck complains for a couple of days.

No headaches though…

Have your tried painkillers or cold /warm therapy?

[Judywalks in reply to DorsetLady]

Yes I take Paracetemol during the day and Codeine 15 MGM’s at night. I am trying warm therapy with a shawl like apparatus which I put in the microwave. It was a Christmas present.

[DorsetLady PMRGCAuk volunteer in reply to Judywalks]

Does that help enough? If not then perhaps you need further investigation…

sometimes it’s difficult know what is “normal” aches etc -and what isn’t. I’d say if in doubt, get it checked.

[Judywalks in reply to DorsetLady]

Thank you for replying. Yes warmth and pain meds help. I think it’s the headaches that concern me the most so I will go to GP if it doesn’t improve.

[Liljeblad]

This sounds like my pains. I get hjelp from my physiotherapist working on my sternocleidomastoideus muscles, jaw and upper neck. Takes time, but does wonders to me.

[Prof99]

Hi Judywalks, I am very interested in your PMR journey as it sounds like you may be a year ahead of me! I am currently on 0.25mg Pred each evening and 20mg MTX. My body is taking quite a long time to adjust from 0.5mg to 0.25mg (3 weeks now but still in a lot of discomfort, particularly on waking) - so I am thinking of going back to 0.5mg for a few more weeks. (Rhumy said I should be able to just come off completely - but he isn't living with this daily pain). Rhumy also said, once I have been off Pred for 6 months, we will look at trying to get off MTX. Can I ask what was your highest dose of MTX and if you came off in increments? Thank you very much.

[Judywalks in reply to Prof99]

Thank you for your reply. Sorry to hear that you are in pain. Itoo had a difficult relationship with the Rheumy. She doesn’t seem to understand the pain that we have with PMR/GCA and insisted I come off meds. I was on 20 mgs Methotrexate and did come off in increments down to 71/2 mgs before I came off completely. I was also having recurrent UTI’S and am now on a daily dose of antibiotics one of which is apparently not compatible with MTX another reason why I had to come off. I have to admit I felt I was “between a rock and a hard place”

[Prof99 in reply to Judywalks]

Thanks for replying Judy. Did you come off MTX 2.5mg at a time? (ie from 20mg - then 17.5, then 15, etc?

[Judywalks in reply to Prof99]

Yes that was how I reduced.

[Purpleprimate]

Hi Judywalks, I was only on Methotrexate for a short time. It just didn't agree with me, my hair started to fall out (more than usual), I felt tired & was just not helping my symptoms. It suits some people but not others.