Hello again everyone headache question

[Allsgrandso]

Hi to all you lovely folk, I haven’t been posting in a while as I’ve been doing ok. Have been on 3mg for 8 weeks now (tapering from 15mg since July 17, age 50 for pmr). Past week I’ve had to go back up to 4mg as the back of my thighs and hips are incredibly stiff. Very uncomfortable first thing but definitely only maybe 10% of how bad I originally felt when diagnosed. I’m aware of a mixed bag of headaches lately (as in few weeks) feels like my head is in a clamp behind my ears. Can have headaches across my forehead all day. One day for about 30 seconds I had a really terrible pain ( different to anything previous) just above one eye. That’s about 3 weeks ago but haven’t had it since. Feeling very fatigued and a bit sorry for myself if I’m honest. I know I have to be patient and I can’t control this but still... anyway I know you guys understand. Absolutely no pain in jaws when eating and scalp ok. Also, I know it’s a separate question has anyone ever had magnetic healing? My sister wants me to try it out... thanks so much for still being here x

[Soraya_PMR]

My all around and forehead headaches worried me, but turned out to be tension headaches. I declined the amitryptylline the doc offered, and opted for chiropractic. Better after first session, needed 4 sessions I think, and the headache had been there for over a month, worse as day progressed.

[Allsgrandso in reply to Soraya_PMR]

How are you doing now Soraya?

[Soraya_PMR in reply to Allsgrandso]

Not too badly, thanks. No more headaches, but do have to make a conscious effort to keep my shoulders relaxed (they’re sure they should be earrings!🙄)

Apart from that my hormones have gone weird as I attempt 5mg, but I’m taking hope that this means they are TRYING to normalise.

[Allsgrandso in reply to Soraya_PMR]

lol can totally relate about the shoulders! Good luck with 5mg x

[Hollyseden in reply to Allsgrandso]

Yup I have those creeping shoulders too! Im sure they dont help headaches

[PMRpro Ambassador in reply to Soraya_PMR]

Me too - I can feel them creeping up as I walk along!!!

[Soraya_PMR in reply to PMRpro]

At my worst I even considered one of those figure of eight, shoulders-back, brace things. But wasn’t sure if I’d do more harm than good, so resisted.

[Allsgrandso in reply to Soraya_PMR]

Think they are bad news as your muscles get lazy and you end up worse off in the long run!

[Soraya_PMR in reply to Allsgrandso]

Yes I figured something like that.

[Shandkydd in reply to Soraya_PMR]

I found walking with my hands clasped behind my back helps, seems to equal out the shoulder discomfort, I look like a stalky teacher lol, don’t care if it works for me.

[teesher]

Hi Allsgrandso, from what I've gathered on this site, any pain near the eyes has to be checked pronto in case of GCA. Could be nothing but better to be safe. The experts will be along soon. All the best.

[Allsgrandso in reply to teesher]

Yes I agree, if the bad headache happened again I would have went to see about it immediately. Thanks Teesher

[DorsetLady PMRGCAuk volunteer]

Hi,

Have you tried taking ordinary painkillers and see if they help?

As Soraya says headaches are often something other than the dreaded GCA or PMR. Do you have any pain in shoulders or neck? Might be worth an X-ray to rule our onset of arthritis. Do you work a long time on computer?

Think you need to discuss with DR to rule out other things - but of course it could just be you’ve gone too low on your Pred dose.

Sometimes it’s difficult to tell, but wise to get it checked!

Can’t help with magnetic therapy- but sometimes anything’s worth a try - that’s the only way to find out.

[Allsgrandso in reply to DorsetLady]

Very wise Dorset Lady, yes painkillers help with forehead ache but not for ‘head in a clamp’ feeling behind my ears. I do spend lot of time on computer as still at college but finished in May so that will ease off a bit. Thanks for advice 🙏

[SheffieldJane]

Well why not? Her love and desire to help you will be healing in any case.

You have been doing well, time to rest a bit now I think. Certainly mention those headaches to the doctor. I guess it’s probably withdrawal though. You could prove it by taking an extra mg for a day.

[GerriMc]

That’s almost exactly the symptoms I have. I’m waiting for an appointment for a scan. Rheumy says not to panic. I go some days with no pain at all.

Hope we’re both 👍🏼

[Allsgrandso in reply to GerriMc]

Exactly! I’ve no headache today 😂 good luck with your scan app x

[PMRpro Ambassador]

Remember you aren't reducing relentlessly to zero - you are looking for the lowest dose that manages the symptoms as well as your starting dose did and it does sound as if you are there - is the 4mg enough? You don't have to have all the symptoms to have GCA - in fact, very few people do and well under half of patients experience each of the individual symptoms at the start. The longer it is ignored the more symptoms may appear.

So just be aware, don't push to reduce - this is a low dose with really not too much risk associated with it. One top rheumy likes to keep people at 5mg for months to let adrenal function catch up and it seems to work well to allow the last stages of the taper to go more smoothly and with less fatigue.

[stellafmdm in reply to PMRpro]

A pity the rheumy doesn't agree! His idea seems to be to get off pred at all costs!!!

[PMRpro Ambassador in reply to stellafmdm]

But was happy enough to diagnose PMR in the first place. Which can only be managed with steroids and lasts an indefinite amount of time!

[Allsgrandso in reply to stellafmdm]

Yep 👍

[Allsgrandso in reply to PMRpro]

4mg is ok, I can at least live a little on 4mg. If I’m honest I think 5mg would be much better but according to rheumatologist I should be starting on 2mg this week as bloods are fine. I asked him if sometimes bloods can be normal but still inflammation is present. He just nodded and said continue to taper and we will see you in May 😩 Thankyou pmr Pro x

[PMRpro Ambassador in reply to Allsgrandso]

Is he dropping you from 4 to 2 just like that! He has to remember return of adrenal function too at this stage. Suppose there is no hope of your GP taking over for the final stages?

[Allsgrandso in reply to PMRpro]

Nope ,I've been on 3mg for past 8 weeks of which past two I've gradually been getting worse. My gp is lovely and I will need to go to her for a new prescription anyway so might be worth asking her alright.

[PMRpro Ambassador in reply to Allsgrandso]

3mg is obviously just a tad too little - 3.5mg is probably ideal.

[Aleish]

Magnets were used here way before I got GCA/PMR but those mattess pads did nothing for me.