Creaking & clicking

[Windy183]

I’d be very grateful for any insight on this. Initially on 15mg Prednisolone from Sept, I am now down to 10mg under a rheumatologist’s plan. Some pain around the lower back has resurfaced and in my neck but the clicking & creaking of my neck is quite disturbing. Would any of you have any suggestions as to whether this is something I have to work through?

[SnazzyD]

I had lots of crunchy neck problems after a while on Pred for GCA. It was largely down to weakened muscles, tension and poor posture. Lower back problems also had their part to play and in the end it was also found that my hips and abdominal muscles were really quite pathetic, leading to issues with my Achilles’ tendons, pelvic floor and neck. 4 years previously I had been super fit. I have to do gentle exercises daily now in order not to lose it again, but Covid has also had its part to play; I can’t blame it all on Pred. I’ve seen a gentle osteopath (none of the clunk click type stuff), a pelvic physio and a podiatrist over the last couple of years and they all said the same.

[Windy183 in reply to SnazzyD]

That’s really helpful and at least I’m not alone. I have a ‘tame’ osteopath locally so I’ll get along to her. Thanks once again

[piglette]

Neck crepitus is usually painless and typically does not represent anything serious. My neck makes really loud clicking noises, people look up in astonishment!

[Hidden]

I've been suffering from a cracking neck for a couple of months. It's horrible and sometimes causes me headaches. I put it down to the ageing process (OA) I don't blame Pred on everything.

[Windy183 in reply to Hidden]

it’s a very odd sensation isn’t it, makes me mildly dizzy when it cracks. You’re probably right it may well be age/OA it’s just odd that it’s replaced the PMR ache/pain.

[Hidden in reply to Windy183]

Yep, same with me, I get lightheaded. This ageing malarky is no joke is it ? I was hoping to be off Pred this month as it's exactly 3 yrs since diagnosis, but GCA turned up too. Taking the tapering process very, very slowly, so goodness knows when I'll reach 1mg....prob never zero though.

Take Care

[micpenn222]

If you read my post you'll see I am experiencing the same neck issues as you, and I am at roughly the same dose as you also. There is no pain involved but now I wonder if it's a hang over from the inflamed shoulder and neck tendons I experience when I had active flares. I have read that tendons take quite awhile to get back to normal once they have been inflamed for any length of time.

[Windy183 in reply to micpenn222]

That’s a great point and sort of what it feels like. Whilst there’s clicking it doesn’t feel like bone on bone so you could well be spot on. I’m going to ask my osteopath for some gentle but effective exercises

[Hankb]

I also have a creaking neck it started after I dropped to 7mg pred. I treated it as a flare and raised my dose to 12mg as recommended by the forum, I'm now back on 7mg,It's reassuring to know that other members of the group have had similar experiences. Thank goodness for this forum..

[Windy183 in reply to Hankb]

thank you in return for the reassurance, that’s exactly how it works. I’m supposed to reduce to 7.5mg on Wed but I think I might stay on 10mg for a bit longer

[DorsetLady PMRGCAuk volunteer in reply to Windy183]

I would be staying put for now . Christmas and winter not good for reducing. Look at recent post on subject -

healthunlocked.com/pmrgcauk...

A drop from 10mg to 7.5mg is too big for most -the guidelines recommendation is below that level 1mg a time.

Excerpt -

“Then reduction by 1 mg every 4–8 weeks

**However, there is no consistent evidence for an ideal steroid regimen suitable for all patients.

Therefore, the approach to treatment must be flexible and tailored to the individual as there is heterogeneity in disease course. Some benefit from a more gradual steroid taper.

Dose adjustment may be required for disease severity, comorbidity, side effects and patient wishes.”

[Windy183 in reply to DorsetLady]

well that makes so much sense. Certainly the cold weather recently has made its mark on my aches and pains. I’m not going to potentially spoil my Xmas so will stay on 10mg and then try going to 9mg in the New Year. Thank you 🙏🏻

[micpenn222 in reply to DorsetLady]

As per the doctor that comments on the PMR North American web site he recommends .5 mg reductions at maybe at a bit quicker pace like: .5 mgs every 2 to 4 weeks and that would still mean 1 mg every 4 to 8 weeks, to what he calls " testing the waters." What are your thoughts on that?

[DorsetLady PMRGCAuk volunteer in reply to micpenn222]

As the guidelines say - depends on patient’s wishes and disease activity…so it’s a personal choice as much as anything .

The main problem I foresee with reducing every 2-4 weeks is sometimes it can take at least 2weeks (longer in some cases) to know current dose is sufficient, and therefore safe to reduce. 4 weeks should be okay though.

As we know from this forum if you reduce too quickly, say fortnightly, it may be 2, 3 or 4 reductions before a real problem arises - and by then you cannot be sure which dose was fine, which a tad too low or which a lot too low.. so to get control again you have to go back to the highest you really know was okay.

In fact many do already reduce 0.5mg per 4 weeks - I did once I got below 7mg (GCA).

[PMRpro Ambassador in reply to Windy183]

Below 10mg, reduction steps are recommended to be 1mg at a time. Endocrinologists recommend tapering should be not more than 10% of the current dose - at any level.

[micpenn222 in reply to Hankb]

Did it go away when you went back up, and did you have any accompanying pain when it started? Mine neck issue is only a minor nuisance and I really don't want to treat it as a flare. On top of that I've had neck issues all my life and now I am wondering if that was the auto immune disease simmering in the back ground only to flare up full blown when I hit 60.

[Hankb in reply to micpenn222]

Hi micpenn. No it didn't go away when I increased my pred dose. I had no other pain when it started just a neck ache. After upping my dose of pred to 12mg for 8 days my neck ache didn't reduce so I came back down to my previous dose of 7mg. My neck still aches as before but as it's only a minor discomfort I'm beginning to think it's a result of old age, I'm now 80. I've always had poor posture, round shoulders I believe it's called, so maybe this is a contributing factor. I also play guitar and the weight of the strap on my shoulder could also add to the discomfort.

[Nagswoman]

My neck has creaked, popped, cracked, been painful and seized on and off since a whiplash in 1980. It has been pretty expensive. I wouldn't know if any pain is the old injury or PMR now.

[Miserere]

I am cracking around the neck, have injured a knee which is also cracking and clunking and that, in turn, makes the lower back ache and click. Some of this is change in movement due to the knee injury, some is tension due to frustration 🙃. Some is tension due to the ways of the mad world we seem to be living in at the moment. I have been able to stay at 6mg Pred so I don't think it has much to do with Pred dose in my case. As soon as I can I shall return to somatic movements - very slow and mindfully done to encourage relaxation in the muscles. Take care.

[Windy183 in reply to Miserere]

thank you and you too.