Every 24 hours. Not 25.

[pollymarierose]

I think I made my first mistake with prednisone and would really appreciate any input. This is my 10th day on prednisone. 60 mg for pmr/gca. I accidentally went 25 hours without taking my pred and the pmr pain is intense this morning. I also have a really horrible headache ( not the gca kind). Is it possible that putting off my dose by one hour set me back that much? Or is this a flare?

[jinasc]

I am assuming you took the 60mg when you remembered...............

You must and I mean MUST remember to take your pred...................it stands between losing your sight, partially or totally and once it is gone its gone forever.

The 'horrible'headache' is the gca kind and also the pmr, each hair has a little muscle on it and the oxygen supply to each muscle in your body is impaired because of PMR - not the GCA.............however GCA headaches can be all over and not just one-sided.

Read this, as you are in for a long haul.............................and no quick reductions either........ golden rule 10% at a time.

...pmr-gca-northeast.org.uk - read our stories, the one with GCA and also Medical information on Diagnosis and Treatment of GCA British Society of Rheumatologists Guidelines, which can be downloaded a a reminder.

If after taking your next dose of 60mg and the headache persists, it is not enough pred and it is not holding the inflammation so off to GP or A&E. ... however any sign of blurring, intermittent, A&E imediately. Do not mess around with GCA at all.

To help relieve the headache, spread your fingers through your hair and gently tug all over, this helps the muscles to relax.

[pollymarierose in reply to jinasc]

Thank you so much! I am listening to your warnings. I won't even consider reduction until I see gp and then I'll be armed with tapering instructions. Right now? I know I'm not even close to reduction!

[powerwalk in reply to jinasc]

Sorry - whats the PMR headache? Have splitting headache all day. I am prone to headzches. Didnt know threre was a pmr headache?

[Hidden in reply to powerwalk]

Me neither...but I have had more headaches in the past 3 years than the rest of my life put together.

[jinasc in reply to Hidden]

Poopadop do you have both or PMR only?

The headaches come on (luckily not to everyone) because of the impairment of the oxygen supply to the muscles.

When you have both GCA & PMR and are on higher doses the GCA one sided headache (but remember not always one-sided) should go away.

I thought I had explained it...............but obviously I am not doing it very well.

BTW, the hair tug is from Shiastsu - my hairdresser showed me when I had headaches after the GCA was under control.................

[Hidden in reply to jinasc]

Just pmr. I do have issues with my neck but it has never been referred to my head before in the form of a headache, motion sickness yes. The consultant at the pain clinic showed me how to stretch my neck to release it. Headache is more in the middle but my neck has been iffy for a couple of weeks now. It may be time for more x-rays/mri if it doesn't calm down. Of course i have been overdoing it so once i have rested i will see. The headaches have been around since pmr. I told rheumy but not interested - that was why i wanted to poke him in the eye. Been to the opthalmologist and had photos for diabetes care and all ok so have tended not to worry. But i didn't know there was a pmr headache so very good to know.

[Thelmarina in reply to Hidden]

You made me chuckle with your ‘that’s why I wanted to poke him in the eye’ . Thanks 😂

[LovetomovehatePMR in reply to Hidden]

Pretty funny. I haven’t felt the urge to snap my doctor yet.

[Hidden in reply to LovetomovehatePMR]

You have time yet.....

[pollymarierose in reply to powerwalk]

It's actually a gca headache. I'm prone to headaches and migraines too. But before I was diagnosed, I told my OH that I was having the weirdest, scariest headaches and I'd never had anything like it before. I thinks it's different for everyone, but everyone recognizes it in others. Mine ran along the base of my skull and radiated up.

[powerwalk in reply to pollymarierose]

Thank you. Best wishes!

[pollymarierose in reply to powerwalk]

Best wishes to you too!

[Joblow in reply to pollymarierose]

PMR here, no GCA that I know of. I have a history of frequent migraines, worry daily about GCA,quit caffeine two days ago because my stomach hurt, worried I had caffeine withdrawal headache, started coffee again today, am driving myself insane. Oh, and had bad chest cold, so held methotrexate while on antibiotics, thought I’d skip restarting it since I had had such a bad chest cold, then mild but constant headache left eye area yesterday, so today will take the methotrexate.

Is there a question, you ask? How do you tell what kind of headache you’ve got? And how do I simmer down and stop worrying?

[Rich7 in reply to jinasc]

Hi jinasc,

Can’t visualize “To help relieve the headache, spread your fingers through your air and gently tug all over, this helps the muscles to relax.”

How do you tug all over when all your fingers are extended?

Sounds like you have a decent “do it yourself” pain reliever, but could you be more specific for me...slow learner. (Grin)

[jinasc in reply to Rich7]

Well that is a first after 10 years of passing the tip on.............here goes I will try and explain better:

Spread your fingers through hair

patch by patch

close fingers

gently tug.

PS: Ever heard the expression 'I could pull my hair out' when something goes wrong ? 🤔

[Rich7 in reply to jinasc]

Thanks for replying. I misunderstood your original posting. A typo had me spreading my fingers in the air, not hair. Now it makes sense.

Don’t think I’ll do that. The precious few locks that I have on top need to be nurtured and handled with loving care.

[jinasc in reply to Rich7]

😄 I have had a good laugh, just goes to show the havoc a typo can cause. I could just imagine your hands hovering over your head.................

I have a feeling that because the oxygen supply to the muscles is impaired it can cause hair to change. I had straight hair for years, it went sort of wavy and has stayed that way..................

Have you asked for or tried Folic Acid?

[Hidden]

You need to set an alarm to remind you. I "only" have pmr but have an mobile alarm in the mornings to remind me. And several more for other meds I take. You will have what we call "pred head" or brain fog. This may mean you don't remember things. So, for your sights sake, please a set at least one alarm. Make sure you always have a spare couple of doses in your bag or pocket in case you leave the house having forgotten. please take care.

[pollymarierose in reply to Hidden]

Thank you. I have been noticing pred head so I definitely need to set alarms.

[Thelmarina in reply to pollymarierose]

Yes, always keep some with you as you never know when the unexpected happens - plane delay, bad weather so you have to spend an extra night with friends etc. etc. And always take your meds in your cabin luggage on a plane if you go on holiday. 👍

[DorsetLady PMRGCAuk volunteer]

It’s debatable that one hour makes that much difference, but it could, certainly early days I suppose. But you do need to get into a routine.

If this is the first day you have had problems it might be a coincidence with the timing, but it could also mean that 60mg is not quite enough for you.

See how you go tomorrow morning, and if it’s the same then you need to speak to GP or Rheumy Dept to get advice. Hopefully it’s just a blip, but don’t let it become any more.

Please let us know how you go on.

[pollymarierose in reply to DorsetLady]

Thank you. Even though I'm not thrilled to be on 60 mg, I've wondered if it was a high enough dose. I'm keeping a daily journal of symptoms etc. I want my gp to know I'm very informed when I see him next week.

[PMRpro Ambassador]

It shouldn't have made that much difference unless you are barely being managed at 60mg. And that is what it sounds like. If the pain doesn't improve quickly do contact your doctor. Don't wait until next week.

[pollymarierose in reply to PMRpro]

I'm starting to wonder that. If I'm not on a high enough dose yet. The idea is horrible. I can't imagine what a higher dose would be like.

[PMRpro Ambassador in reply to pollymarierose]

Probably not much difference except the pain would be better, Some experts start with a 3 day pulse therapy of 100mg/day as an infusion and then revert to 60 or 80mg oral pred. The long term results are said to be excellent.

[gifford7 in reply to PMRpro]

The usual pulse dose is 500-1,000 mg methylpred repeated for 3 days, by infusion.

I had 1,000mg x 3 and it finally brought my CRP down into the normal range,

which 80mg pred for 20 days had failed to do.