PMR and adrenals waking up.....

[remission]

I've had PMR for 20 months now and for the first year the inflammation was all through my body, but now it is only in my neck, feels kind of like whiplash and mostly in the mornings, but the fatigue has gone and I have no other symptoms. I do a fair bit of physical work during the day and sleep 8 to 9 hrs at night. Tried increasing the pred. but I don't feel any different at 5 or at 2 mg, so leaving it at 2. My question is , is this how it feels as your adrenals start to kick in. My GP is very young, super nice, but not familiar with how PMR reacts.

[Tonch]

Hi remission, Sorry I can’t advise you but I can add my voice to yours. My experience is almost exactly the same as you. 20months since diagnosis, was on 2mg for quite a while and are now on only 0.5mg. No fatigue or stiffness, but I do have a painful neck/shoulder in mornings and also painful knees when I bend them. Sleep well too. Tried zero for a while but aches and pains increased along with headaches and sore scalp for a while. Let me know how you get on.

[remission in reply to Tonch]

thanks, sounds silly, but feels better just knowing someone else out there is also experiencing what i am going thru. I will keep you posted, thinking of reducing again,as increasing hasn't made a difference and I would sooner be on the lowest dose possible

[DorsetLady PMRGCAuk volunteer]

Normal production of cortisol is approx equivalent to 7.5mg Pred (varies between 5-10mg).

So any dose of Pred below your ‘normal’ production means your body has to make that up shortfall - but as you don’t have fatigue or any other adrenal insufficiency symptoms sounds as if yours are coping okay.

Not sure what the ‘neck’ issues are - if an increase in Pred doesn’t affect it, then probably not PMR.

Have you changed pillows or mattress recently - if not, perhaps you need to!

As your job is physical, are you sure you haven’t done anything to affect neck?

[remission in reply to DorsetLady]

good thoughts, hadn't even considered pillow causing the neck issues, which makes sense given it's quite sore in the morning and gets better over the day - thankyou very much, appreciate the answer

[SnazzyD]

As per usual there’s no easy answer. Adrenals kicking in means you feel better generally, it’s the not kicking in that one notices, but lack of it. I certainly got vague, fluey aches and pains when things weren’t firing up. The effect of Pred on the muscles generally after a time made my head and neck very prone to whiplash type pain if I did anything where my head’s weight was being held up, or bad posture, or long drives. Pred didn’t help but paracetamol did as did avoiding aggravating movements and posture. I also had to change my pillow to suit the ‘new me’. However, I will say that in the lead up to my GCA going pop was months of pain in the base of skull/top of neck that was particularly noticeable in the mornings and latterly at night. Sometimes it was accompanied by a mild headache but both things went by the time I got to work or even had breakfast. It was also resistant to massage. So, keep a good eye on it and speaking of eyes, if there is any odd feature that occurs in your sight, even if fleeting seek medical opinion. If there is a chance over Christmas to completely stop what you are doing now, take it. If your neck recovers , you know it is probably your activity that your neck doesn’t like. Also, watch your posture because I don’t we get away with misdemeanours like we did before all this business.

As for your doc, Pred has been around for decades so isn’t exactly a new finagled thing that needs up to the minute knowledge to understand. Docs prescribe tonnes of it in their career. Saying that, their knowledge seems to often amount to a few documented horrors that are deemed inevitable but not much in the field of actual patient experience and solutions. Also, no specialist has sincerely asked me how I am, really am. If I’ve tried the shutters go down. There are certainly good ones but many don’t want to learn from patients, so it isn’t taught to students.

[SheffieldJane in reply to SnazzyD]

Your experience of GCA sounds reassuringly familiar to mine. Thank you for articulating it so well.

[Dunkel in reply to SnazzyD]

Exactly what I think about the Doctor treating me, my nice, young rheumi gives his advice andto call him back in two months!

I wonder, if there is any proof in this treatment

with pred that’s indicating some withdrawal

effects, maybe by our adrenal gland, just when

we taper down, and cannot get further down?

I just experienced the second time some

reactions, that make me think of this,

anybody has some answer please?? Thanks

[PMRpro Ambassador in reply to Dunkel]

You are not reducing relentlessly to zero - you are looking for the lowest dose that manages the inflammation well enough to prevent symptoms. I have said all along that if you get a similar dose twice and flare, then that is your body telling you have arrived. In the earlier stages, it can happen just as well at 10+mg as at 5mg - and at 10+mg it is very unlikely to be the adrenal function.

[Dunkel in reply to PMRpro]

Thanks very much, yes you are right, and from this point on, I can stay like this, noproblem, or I can try, very very slowly, quietly ,(like the cat tries to catch the mouse)

to go a little further down, to reach a new point, 0 would be Bingo!

And Mtx would help in those final stages!

( not to go back up again) great for all those, who made it successfully, thanks again

[PMRpro Ambassador in reply to Dunkel]

"And Mtx would help in those final stages"

COULD not would - there are no guarantees, it doesn't work for quite a few.

[PMRpro Ambassador in reply to SnazzyD]

Could refer you to at least 2 who DO ask!!!

[PMRpro Ambassador]

Pillow or some other cause of tight shoulder and neck muscles would be my first thought.

[herdysheep in reply to PMRpro]

I would add to much screen work with inappropriate posture, too.

[Kath567]

I have been dealing with neck problems and ocular migraines for months and am on 5mg. I bought a half circle memory foam pills for my neck to support it. I had bad headaches at night on the back of my head that would wake me up. They have settled down. I am so tired by mid day and work full time. Computer work definitely doesn’t help. Waiting for my rheum appointment in a couple of weeks but figured the neck is more mechanical than anything else. It’s awful though always wondering if PMR is coming back.

[remission in reply to Kath567]

So, you said wondering if pmr is coming back, so are you clear of PMR and Pred at this time?My concern is the pain in my neck is a lead up to GCA, so today I am going to increase to 5 mg frm my usual 2mg just to see if I notice any difference. I don't know how you feel about marijuana products, I was so against them until I got PMR, and since then have read so much up on them, I don't use the THC, because didn't find it beneficial, however, I do rely

on the CBD (non hallucinogenic ) allows me to relax and sleep for 7 or 9 hrs at night, which lets me work thru the day on some heavy physical things.

[Kath567 in reply to remission]

I am still on 5 mg of prednisone. If I thought it was GCA, I would see a doctor ASAP. PMR can affect the neck but I don’t think that is what is happening to me this time and I will check with my rheum.

[HeronNS]

The neck is complicated. I know I've had PMR neck problems, but also have a lot of arthritis in my neck. I believe it actually started in childhood when I used to get really stiff neck from time to time. One time an adult in my life couldn't stand seeing me with my neck awry and pushed my head straight. I still remember the excruciating pain. I was probably seven or eight at the time. I don't think my neck has ever been really healthy since then. I've been doing physio-prescribed exercises for maybe 25 years now. I get referred pain in my shoulders from compressed nerves in the cervical spine. The final trigger for me seeking diagnosis in desperation was when I could no longer turn my neck well enough to see out the rear-view window of the car and thought I would have to give up driving. That was in 2015. Oddly enough nowadays I get quite a bit of relief from tylenol of all things so I am sure it isn't PMR now.