Pain in the Neck

[Jane-s]

I have a painful throat, not a sore throat, it’s more the sort of pain I had before my diagnosis of GCA was made and Steroids started,

I asked my GP if I could stop the Alendronic Acid for a week in case the pain in my throat was due to trauma. He said OK and agreed that throat sweets might be a good idea.

I don’t find it easy to decrease from 12 mgms of Prednisolone; after a few days on 11.0 mgms the earache comes back.

Is pain in the throat a common symptom.? I’d be so grateful for any ideas or comments please.

Thanks for all your help and advice over the last year.

[jinasc]

'I don’t find it easy to decrease from 12 mgms of Prednisolone; after a few days on 11.0 mgms the earache comes back'.

Did you tell your GP about the earache?

This link will take you to a research paper which was only reported last year...........

link.springer.com/article/1... - is is possible your GP is not aware of it.

It sounds to me like your GCA is under control at 12mg and you need to stay there and wait. Hopefully you are using one of the tapering plans (Pinned Posts on Right Hand side).

One question, did you have a dexa scan before taking the AA or did you already have osteo?

[PMRpro Ambassador]

I'd say getting to 12mg after 17 months is not bad going. I have "only" PMR and it took me 4 years to reliably get below 10mg at all - and now, after 10+ years on pred, I struggle to get below 12mg. I'm even still pretty good on 10mg for a few weeks but then things go downhill.

Like jinasc I'd suspect your GCA is still grumbling and the ear pain is the sign. But it would also make sense to get your ear checked out.

[Hidden]

Hi, talking of throats and steroids. My throat often feels weird and voice definitely is, it goes all croaky. Sometimes when I'm talking the left side of my throat seems to catch I then have to cough. Some very weird side affects we all seem to be experiencing from the prednisone.

[Constance13 in reply to Hidden]

I have the same symptoms. I put it down to age - it never occurred to me that it might be from the steroids.🤔

[Hidden in reply to Constance13]

Only happens after I've taken the wretched steroids. Now I have numb toes on left foot and pain when I bend that foot too. Vasculitis, not sure but hope not.

[Fieldofdreams]

Hi Jane, I have GCA diagnosed Aug 18 and with some ups and downs have got down to 8 mg now. I have had acute tendinopahy in both Achilles (4 months before diag and then 12 mths pain), vasculitis, big toe nail and 60% hair loss - but thanks to PMRpro and others on here still fighting to tell the tale - and wear a very nice wig!

I have found when I try to get below 8 mg temple ache returns and the withdrawals symptoms are horrid. I have been here now for 2 months but in lockdown with parents one with dementia I decided to stay and try to decrease to 7.5 gradually when I go home.

If I can get to 5mg by Aug I would be happy but I spent a long time up and down with flare ups until I learnt how to taper properly. Slow slow slow and steady. But stress does induce my symptoms. Not sure if i am being of any help but please ask me anything that might be helpful. Wishing you calm and love. FOD

[Jane-s in reply to Fieldofdreams]

Thank you FOD, Any positive thoughts are good, particularly the advice to avoid stress. Even in Lock down I take on too much.

The Earache is a nuisance this evening. The dog barking for attention doesn’t help!

[Fieldofdreams in reply to Jane-s]

I get earache too, really deep almost on the joint which increases with stress.. as does my tinitus. I am making sure I am turning wifi off and dont sleep with my phone on. I have found that being in modern buildings with tons of wifi is an issue. I carried on working through out but if I had had the choice to take time off sick I would have done (but self employed and working in the arts). Take 3 months off if you can or a month. Get used to the Pred and the fatigue and other lovely side effects that sometimes happen - BUT - may not too. If I could turn the clock back I would have taken time off.

[Jane-s]

Thanks for all your responses. No ,not had a Dexascan as GP said I was on all the bone saving and replacing treatment anyway,

I think the painful neck and throat is due to the GCA. Also Earache. So I have to stay on 12.0 mgms of Prednisolone for another month GP says , and see how I go. I’m fortunate to have a GP who listens.

Not fortunate to have a ‘knackered spine ‘and not too good hips , not helped by Steroids.

Well, soldier on ! Am hoping walking poles may help.

Also hope I’m writing in the right place!

[Canary77]

You seem to have this Sussed with all your advice. My doctor has always been keen on lowering my steroids which I do very gradually, but always ready to go up by one or two. Also when you begin to lower again try every other day.

[PMRpro Ambassador in reply to Canary77]

We have a few versions of tapered reductions which are even slower than alternate days and which many people have used successfully over the years.

DSNS - Dead Slow and Nearly Stop is one version and DorsetLady also has one.

[Viola1]

Just over a week ago I had exactly the same thing, a very painful neck. After a couple days it wasn’t painful but felt like I had a lump in my throat. Also I had night sweats and scalp tenderness. I bumped up from 9.5 to 15 for one day and then 20 since then. My new rheumatologist (who is indeed a better fit) said I should stay at 20 for four weeks and then start decreasing. (My original rheumatologist was upset with me that at two years I am still on prednisone).