Is this a Flare?

[Jantayl]

After 4 years I eventually got to 4mg pred 2 weeks ago. I now have severe pain on right side of neck, up past ear and into top of head. Could this be return of GCA? I feel very weak, light headed, and faint. I increased pred to 8mg past 2 days. Had doctor visit yesterday and only explanation ‘virus’ referral to neuralagist. Think I shall try to contact rheumatologist tomorrow. Should be taking AA now but cannot stand for half an hour. Value your guidance.

[Kendrew]

Hi Jantayl,

Others with more knowledge will be along to advise you on the neck pain, but I would just say that when you take AA, you don't have to "stand" for half an hour, you just have to remain upright (ie. not lie flat) for half an hour after taking the tablet.

So it's perfectly alright to sit upright in bed or sit in an armchair etc during this time.

This is because lying flat may prevent the tablet from successfully travelling down into the stomach properly and if it were to settle in the oesaphagus for too long it could cause severe irritation to the oesaphageal lining. That is why you're also advised to always take it with lots of water....it helps to 'flush' it down.

Hopefully that now reassures you that you don' have to actually 'stand' for half an hour after taking AA.

[Jantayl in reply to Kendrew]

Thanks - I know but am usually able to walk about - I even have difficulty sitting and just want to lie down. apparently I could try tomorrow. I just feel so rubbish just now and don’t know where this came from.

[Kendrew in reply to Jantayl]

I've had PMR for 3yrs now and have found amidst all the other causes for the frequent re-emerging aches and pains, that sometimes, just the simple fact that muscle wastage caused by long term steroid use has made me so much weaker than previously, has made me much more susceptible to 'pulling' or straining muscles and tendons. It's so much easier to damage a muscle now and the smallest amount of extra 'effort' can quickly result in aching or over-tired muscles. For example, lopping one of my garden shrubs for literally less than 5mins resulted in very sore muscles in my forearms for almost 3dys afterwards. Bending down awkwardly and twisting to reach something resulted in a stiff neck for several days afterwards.

Its possible that your weakness, light-headedness and faintness could all be symptomatic of you now being on a dose of pred that's in the range where your adrenals are trying to 'fire up' again. (See FAQ's, look under 'Adrenal function' where you'll find lots of information and advice if required) and maybe this might need looking into.

I obviously don't know exactly what's causing your current health issues so my comments are just some other possible things to consider.

Whenever there are worrying or new symptoms emerging though, the recommendation would always be to seek advice from one of your medical practitioners .... and in your case, probably your rheumatologist is the best point of contact first.

I'm sorry you're experiencing such a challenging time at the moment but hope you can get sorted quickly.

[DorsetLady PMRGCAuk volunteer]

Have replied to other post…. But will copy it here -

Hi

Sorry you are feeling so bad, but think the doctor might be right - rather than a flare of GCA, although one should never rule it out. Was he aware of your GCA history? Did he give any advice about taking ordinary pain killers?

You do not need to stand up after taking AA, you just have to not lie down…sitting in a chair is perfectly adequate. But not taking them for one day won’t do any harm anyway…..

Good idea to contact Rheumy tomorrow, by then you may know if the extra Pred made any difference or not.

[Jantayl in reply to DorsetLady]

Sorry I posted twice - did not think the first had gone as there were no replies!

[DorsetLady PMRGCAuk volunteer in reply to Jantayl]

No problem -system isn’t always that quick to send out notifications.

[PMRpro Ambassador]

You don't have to stand for half an hour - you have to sit upright and not bend over.

Is the neck pain in the sternocleidomastoid muscle?

en.wikipedia.org/wiki/Stern....

shows you where and

medicalnewstoday.com/articl...

tells you lots more.

As you see - that can mimic GCA. Don't quite see the connection between virus an neurologist!

And the symptoms would also fit with adrenal insufficiency - what dose were you on before going to 4mg? How big steps down are you taking and how often? What were you doing the last few days? No doubt you are now in a panic?

[Jantayl in reply to PMRpro]

the pain is not as far down to chest. It starts in the right neck below the ear. The sore part to touch is on the bone behind the ear - hope that helps. I have difficulty turning my head to the left. it is not so bad just now - maybe the steroids helped but was really painful during the night. I have been reducing pred very slowly - actually at 4.5mg a year ago. Been up and down because of recurring UTI’s. Was at 4.5mg last September and had synacthen test showing adrenal functioning - “final cortisol is >430”. Had Covid in January - at 5mg then. 4.5mg for 6 weeks then 4mg from 25 March. CRP was at 3.3 end January but was in hospital with stomach/ constipation on Friday when CRP blood test was 12. And yes I am upset, worried and in a panic as to what is going wrong. I’m still feeling weak and not any appetite.Having gone through the initial pain of PMR followed by the severe pain of GCA Feb 2018 I don’t want this again. that’s why I also wondered if there may be a link to MS although diagnosed 20 years ago has not been an issue. And I have continued to be as active as possible - still walking daily 5 or 6 miles. I really value any thoughts you may have on all this.

thanks

Irene

[PMRpro Ambassador in reply to Jantayl]

Sternocleidomastoid muscle - do look at the links I gave you and read them.

I never mentioned chest - the muscle I'm talking about finishes at the collarbone. You must have had a stiff neck in the past that affected it. Try heat or ice on it - different people find they react better to one of them. Have you changed a pillow? That is a common cause of neck pain.

And read the adrenal function links in the FAQs - that may well be causing the wobbly feelings. It is possible you are trying to do too much if that is the problem now you have reduced the pred so far - 5 or 6 miles walking a day is a lot.

[DawnMezza]

Sorry what is AA?Sorry to hear you are going through this. Unfortunately I haven’t gone thru this yet. I have just tapered from 60mg to 10mg and that is as far as I have got so far.

[DorsetLady PMRGCAuk volunteer in reply to DawnMezza]

Alendronic Acid - a bisphosphonate - prevents bone thinning.

You may be on something else maybe, but most people find the Calcium/VitaminD supplement sufficient.

[DawnMezza in reply to DorsetLady]

Oh I am or was on it but I now have the annual infusion the zelendeonic acid.Thanks for confirming what it was x

[Luciejc]

I have GCA since 2019 and would not rule out a flare or GCA related.You know your own body and your symptoms. I would continue on 8 MG prednisone and see my neurologist, if it were me. Be on the lookout for vision changes and go to ER . I know how I feel even though my symptoms may be different from someone else. I have a headache in temple area, jaw ache into ear, ache directly into my neck and sometimes shoulder. Will be thinking of you!

[Jantayl in reply to Luciejc]

Thank you for sharing your experience. The pain is on the right side and did not seem the same - ie was not so excruciating! No jaw ache. The pain has eased today and I am feeling much better - although still weak. I have just spoken to my GP and will see him tomorrow to have my CRP updated. I shall keep on the 8mg for a few days then drop down again. 4mg was maybe just too low. But hey ho who knows??!!

[Luciejc in reply to Jantayl]

My CPR is always normal no matter how I feel.