Update on 2mg taper/neck pain etc.

[Tarym]

Finally made a GP appointment almost 3 weeks ago as I was still getting neck pains, resulting in a blood test, the first since diagnosis in September 2020 (haven’t see much of my GP). CRP was 4.1 (compared to 72.8 in 2020). Was also told Polymyalgia doesn’t affect the neck, continue with 2mgs. Three days ago, worried about the discomfort (despite taking paracetamol) which has gone from one side of my neck, along the base of my skull to the other side and also some occasional sharp pains on the top of my head, I saw another doctor (coincidence not intentional). He requested blood tests - lots of them - awaiting results. Also told me to increase Pred up to 7mgs. Today, pain free! With the benefit of hindsight, should have done this myself. Will now follow your tapering plan and stay there for 5 to 7 days, then try going back to 2.5 where I was last stable and pain free. Look forward to reading any comments.

[piglette]

A lot of doctors are really not that knowledgable about PMR and steroids. The trouble is you don’t know until they mess you up!

[Tarym in reply to piglette]

True, that’s why this forum is so valuable!

[piglette in reply to Tarym]

So true.

[SnazzyD]

Have a look at these because tension in these neck muscles can mimic some of the GCA symptoms. It’s worth keeping this in a good state to avoid inadvertent Pred taking.

healthline.com/health/stern...

youtu.be/eD3Ds3GIt9M(Not working as expected?)

[Tarym in reply to SnazzyD]

I think that’s what’s been happening.

[SnazzyD in reply to Tarym]

If mine gets very tense, Paracetamol does not work very well but massage, Bowen therapy, stretches and better posture do.

[Tarym in reply to SnazzyD]

That’s interesting, a friend has recommended Bowen Therapy to me so that’s something I’m going to try, apparently we have a good therapist locally.

[PMRpro Ambassador in reply to Tarym]

Bowen helped me a lot - a couple of very down to earth NE ladies. But the version they offer here is a bit esoteric and wishy, candles and strange music ...

[Missus835 in reply to SnazzyD]

TMJ/TMD can also mimic GCA-type pain. After my GCA scare in January, I made dentist appointment and was diagnosed with acute TMJ/TMD. I now have to wear a biteplane 24/7 except when eating. I have all my own teeth and now have to wear a biteplane at Age 73. Oh well. It does seem to be helping as pain referred from tops of eyebrow into a spot along hairline in forehead, also jaws. Dentist explained that muscles from jaw are attached along the hairline and other places of course. If you think about the high impact the jaw has on your whole skull, this makes sense.

[PMRpro Ambassador]

Doesn't affect the neck? Really? Gosh. That's news to me. I wonder what else it doesn't affect ... They're keen on denying knees and feet too of course.

Though you do need to have a good look at Snazzy's link because you can do a lot to improve it.

[Tarym in reply to PMRpro]

I was very tempted to make a comment but decided not to rock the boat or upset him! Definitely going to follow up Snazzy’s advice. Thanks.

[jessiem]

I have nothing to add except it can affect your neck! At diagnosis my shoulders and neck were the most painful - excruciatingly so.

[Tarym in reply to jessiem]

Thanks for the reply, this is so helpful for me trying to understand what’s going on.

[SnazzyD in reply to Tarym]

It’s not a case of either or and could be both. At least you can keep on top of of one of the causes easily!

[agingfeminist]

It began in my neck and it is the first place that warns of a more widespread flare...I have tried ignoring my neck pain to have it spread to shoulders and upper legs.

[Tarym in reply to agingfeminist]

More information that is helping me decide what my next move must be, thank you for getting in touch. I’m so pleased to hear the experiences of forum contributors.