Neck and bicep pain

[Coco63]

Hello lovely, knowledgeable people, I just wondered if anyone had encountered aches and pains coming back in the neck ? I was diagnosed at the beginning of May and put on 15mg (which worked wonders) then in June 12.5 mg and this month down to 10mg but for the past couple of weeks I’ve had a continuous nagging ache in my neck muscles and particularly under my chin as if my head is too heavy for it! I also have a lot of aches in my biceps when doing very little (like writing or chopping vegetables)I’m supposed to taper down to 9 at the end of the week but think that would be a mistake. I was wondering whether I should persevere with the 10 for another 3 weeks as my GP suggested or whether to try going back to 12.5 for a week and see if that fixes it? Any thoughts greatly appreciated!

[DorsetLady PMRGCAuk volunteer]

Think if you stay at 10mg it is likely to get worse rather than better - after 2 weeks would say more likely to be a flare rather than steroid withdrawal. Although it a recognised taper, it’s not achievable fir everyone.

So yes, probably a good idea to return to 12,5mg, but you need to inform GP….unless he has said you can amend medication.

Certainly don’t consider a further reduction until sorted out.

[Coco63 in reply to DorsetLady]

Thanks so much DorsetLady, that’s great advice - I’ll call him tomorrow as it seems pointless suffering unnecessarily! 🙂

[piglette]

Personally I would go back to 12.5mg where you were last comfortable. The neck pain is horrid. You have actually done a pretty good reduction since you were first diagnosed. Explain to your doctor that you seem to be going too fast. Some people can do it and some, like me, can’t. I could only reduce 0.5mg under 10mg.

[PMRpro Ambassador]

I'd say it could well be a sign that you are on very slightly too low a dose - I have a few things that are failsafe indicators I'm skating on thin ice: sore thumbs and wrists, bicep pain and sternocleidomast muscles being sore.

healthline.com/health/stern...

geelongmyowell.com.au/stern...

Really don't know why it is so difficult to find a simple clear image of which muscle I'm on about! The second seems not too bad

2.5mg at a time is quite a lot.

[SheffieldJane]

It might be worth having a neck X Ray. I have cervical Spondylosis and the pain I get from it sometimes, is as you describe. Mine showed significant wear and tear in my upper spine. Having said that, galloping you off steroids is never going to work. You need to have your symptoms under control before you drop down and it’s time for smaller drops eg 1 mgs. Make sure you have some I mg tablets and a pill cutter for later on. I agree with the advice you’ve had so far, based on my own experience. Never drop by more than 10% sometimes less is better.

[Nightingales in reply to SheffieldJane]

Hi, I have the same cervical condition as you. Have you found any treatment that helps the pain. I am suffering and pred and pain killers aren’t helping.

[SheffieldJane in reply to Nightingales]

It is more avoiding things that trigger it eg spending too long on a screen, sleeping at a propped up angle. It can be quiet and then there is an inexplicable phase of pain. My husband gently massages the base of my skull sometimes and says that he can feel knots of tension - this seems to help. I agree that painkillers don’t help much - a glass of wine can act as a muscle relaxant. I love a head massage at the hairdressers. I spent years working at a computer screen with very poor posture. I think this is what did it. When I changed occupations the pain was horrendous. It seems settled now or I’ve learned to live with it. It’s low on my long list of miseries now.I looked at your previous posts and was sad to read of your daughter’s cancer diagnosis and did wonder if you were holding the pain in your neck. I think we tend to do this. Sending you hugs. 🌸

[Nightingales in reply to SheffieldJane]

Thank you for your suggestions and kind words SheffieldJane. You are probably right. My daughter is always on my mind. She just underwent 8 hours of microsurgery to repair radiotherapy damaged skin that wouldn’t heal. She has really gone through the wars but she is such a fighter, my hero. I have had a recommendation for an ex nurse who does head and neck massage so I think I will try that. My husband is hopeless lol. Thanks again.

[SheffieldJane in reply to Nightingales]

I really hope it helps - emphasis on gentle! Xx

[jenerino]

Hello,Ive had pmr for five and a half years and am on 3mg of Pred but I am never without neck pain and some pain in tops of arms. its just something I live with.

[Coco63]

Thanks very much for your replies, it’s all very helpful and really appreciate the support - this group is such a lifeline! I’m beginning to think GPs and rheumatologists should be directing their newly diagnosed PMR/GCA patients here as a matter of course, particularly at a time when many people may not feel so inclined to trouble their GP with seemingly trivial queries! Big thanks to you all 🙏🏻❤️🙏🏻