Tapering and headaches

[HeronNS]

Could chronic morning headaches, upon rising, be a sign of too little cortisol? Thought it was weather, allergies or sinus, but now not so sure. Tapering prednisone 1.5 mg to 1 but only taken 1 mg once so far, several days ago.

[DorsetLady PMRGCAuk volunteer]

Hi HeronNS,

Could be, do hope not for your sake. Do they go off of their own accord? Have you been taking any OTC painkillers to help? Anything else that might suggest dose too low?

Might be wise to stick at 1.5mg for a week or so and see what happens, before deciding next action.

[HeronNS in reply to DorsetLady]

Hi Dorset Lady, thanks for your reply. Thought I'd be all right as I've been below 5 mg for over a year now, and hadn't shown any other signs of adrenal insufficiency, just lazy adrenals, as far as I know. I've had days of feeling perfectly fine and energetic, and then I may crash either later that day, or the next day. This has been going on for a while and I'm definitely getting better, but it's slow going. I was hoping to be able to taper off the pred before my current prescription runs out as my doctor told me to take what I had left, and then stop and see what happened. In order to do that I was going to have to use the 4 day turnaround for the dead slow taper (been using six days, and only tapering by .5 mg for some time now). But today I was due to have the second 1 mg dose and decided to take 1.5 anyway. I haven't taken any pain meds today, to see what would happen, and I just have a sort of heaviness in my head now, which could be due to weather (apparently we are being brushed by remnants of a tropical storm). Yesterday I got up very early, having gone to bed with the beginnings of a headache and ended up taking, over several hours, 6 extra strength aspirin (not all at once!), and two codeine with acetaminophen (very unusual to need that), and the headache didn't really let up until after I took my pred about half an hour after the last dose of painkiller. This is really when I began to wonder if it was the low dose of pred. I shouldn't wake up with a headache nearly every morning, and it's been worse since that first 1 mg day. Sigh.

[DorsetLady PMRGCAuk volunteer in reply to HeronNS]

Hi again,

As piglette say, think headaches are not adrenal related, nor influenced by outside forces- weather etc if OTC painkillers don't help. So that only leaves you with GCA/PMR related headaches unfortunately.

Your journey from 5mg down to 1.5mg virtually mirrors mine, and then it took another 5 months to get to zero - so not as easy as some medics think!

Think your only option is to stick at 1.5mg (you say you're okay so far today on that) and see if that solves the problem, and providing you have enough tablets. There's no point in trying to get to zero if you're having niggles of any sort whatever your doctor may wish - after he did say see what happens! As we often say even 0.5mg does make a difference! and maybe you've just proved it!

Good luck, and please let us know how things go.

[HeronNS in reply to DorsetLady]

I'm sure you are right. I had planned to stay at 1.5 a week or two longer before the doctor's cavalier suggestion - she didn't even send me for bloodwork this time. I spent some time working out how to taper off without having to stop cold turkey in the middle of a taper as seemed to be her suggestion. For all she knew I might only have had a few tablets left and already be feeling the effects of no pred! I thought maybe I could push through tapers a bit faster. Apparently not. She will give me a new prescription if I need it, and it looks like I will.

Off to buy allergy meds now!

[DorsetLady PMRGCAuk volunteer in reply to HeronNS]

Good.

Took me 2 attempts to get from 0.5mg to zero even using the DSNS plan - only time I did, up to then used a slight speedier one.

Two weeks in the first time around I just didn't feel good, so I chickened out - or took a rain check as you say - gave it a couple of weeks and then tried again. Worked that time.

Sometimes it just has to be the "right" time to do things.

[PMRandRA in reply to HeronNS]

I'm not medically trained.

NSAIDS including Aspirin, Nurophen, should not by used by PMR/GCA patients.

Paracetamol 1000mg x maximum 4 times a day is pretty much the only 'safe' OTC painkiller to take.

Codeine causes headaches but is excellent for muscular pain relief. OTC codeine is inadequate for what we have because it doesn't generate sufficient morphine to do the job. Your doc can prescribe 3O mg codeine which can be taken in conjunction with 1000mg paracetamol 4 x daily for best results. Always read the insert!

xxxx🌺

[HeronNS in reply to PMRandRA]

Thanks PMRandRA. I've been very careful with my use of aspirin (acetaminophen only marginally helpful if at all for my headaches) take small dose of codeine very sparingly (it's non-prescription but held behind the counter) and have never taken pred within an hour of any of these meds. I am aware that one can build up a resistance to codeine so I've always been extremely careful with it. For a while they were only selling bottles with 100 tablets in them and I refused to buy it because I knew they'd expire years before I'd used them up. Ironically this in a place where there's a major opioid crisis, way to help people - not! Thinking about it, I guess I use codeine as an aspirin-sparer for killer headaches, which I get seldom. Had a very bad experience years ago with naproxen, when it was still a prescription med, so have avoided every other painkiller like the plague.

[altywhite in reply to PMRandRA]

For those of us who can't take Codeine sometimes Ibuprofen is the only way. I have a chronic back problem and take either Diclofenac or Ibuprofen alongside Paracetamol. I know it's not ideal but they are the meds which work for me and I use them very sparingly. I also take Omeprazole for stomach protection. Headache wise...if it's not GCA related..then it's 1000mg Paracetamol and 200mg Ibuprofen for me.

[PMRandRA in reply to altywhite]

Ibuprofin and other NSAIDS are usually contraindicated for use if the patient is taking corticosteroids.

It is up to you of course whether you take the chance of taking OTC NSAIDS and you are welcome to tell me to mind my own business, but if this post helps to save the life of one person who reads it then I am happy.

Hopefully your doctor is aware that you take nurofen.

xxxx 🌺

[altywhite in reply to PMRandRA]

I absolutely agree that if it helps one person then that is a good thing and I wouldn't dream of telling you to mind your own business. I'm a retired critical care nurse so I suppose I have more awareness of drug interactions and yes, of course my GP is aware that sometimes Ibuprofen is the only way for me. He trusts me and knows I won't abuse it. It doesn't work on GCA headaches for me anyway. x

[PMRandRA in reply to altywhite]

Gosh, if I had only known what you were (are) I would never have preached the way I did! Please accept my sincere apologies whilst I try to remove my foot from my mouth.

[piglette]

Hi Heron, as you have been able to reduce to such a low level without adrenal problems, I would have thought the headaches are probably unlikely to be an adrenal problem. There are dozens of reasons that you can have a morning headache, so it may be an idea to check with your doctor.

[PMRpro Ambassador]

healthline.com/health/acute...

Not listed as a usual symptom.

[HeronNS in reply to PMRpro]

Thanks. I hadn't found anything helpful, hence the post.

[Janll]

I've had problems with headaches too. Not sure if they are pred or PMR related but they come and go. As I reduce dose .... I go really slow. Even .5 mg can make a difference as was mentioned. Those adrenals are like cry babies. They complain at the slightest thing. I do my best to fool them into thinking they are getting all they want. It's a game! I have even cut a tablet into 1/4 s, just so I can still feel I'm in charge, and I space the change in the week, maybe one day the smaller dose in seven. I haven't had one of those headaches in a good week or two. Happy experimenting, success is just around the corner.

[HeronNS in reply to Janll]

Thanks for that, Janil. I had a stomach bug a few months ago and realized as I suffered with a persistent headache, despite taking plenty of fluids and a few painkillers, that I probably hadn't absorbed any pred for about forty-eight hours. About an hour after taking pred the headache started to lift. That was when I decided a lot of my problems tapering were probably due to pred withdrawal as I hadn't had any PMR pain at all during that time. So probably the headaches are just plain old pred withdrawal and not really related to adrenal function. Maybe I'll try cutting those microscopic 1mg tablets into four after all!

[PMRandRA]

I added a bit more onto my post on painkillers because I hadn't completed it. 😁

[HeronNS in reply to PMRandRA]

And I added more to my reply before seeing this addition!

[PMRandRA in reply to HeronNS]

snap! 🤣

[HeronNS in reply to PMRandRA]

Actually I have a good relationship with aspirin, I understand it and know how to use it safely. I am more nervous of acetaminophen, which really is not effective for migraine, and I know the higher doses and chronic use can cause liver damage which seems risky to me, so I rarely take it, or only when I have to, as in the codeine tablets I get. It's also present in a cold remedy I like. I take the remedy for the tiny dose of decongestant, an ephedrine relative or whatever it is, but they also bung in acetaminophen, quite a high dose in the "extra strength", which I think is quite dangerous as many people probably don't know how much they are getting and take acetaminophen tablets at the same time.

[Estellemac]

I have a headache when I reduce and thought sinus or the heat. But they go after a week. I also take Naproxen "NSAID" on prescription as well as Pred. I have to take Lanzaprosol to protect my stomach. I have Osteoarthritis and can't manage without Naproxen. Pred does PMR and Naproxen for the Hip. On Morphine now till my Hip surgery. Think I am building a resistance up to everything.

[HeronNS in reply to Estellemac]

Estellemac, I do feel so sorry for people with OA pain. I've had OA for many years, in parts of my body (feet and neck) probably most of my life, although diagnosed at age forty. I never took painkillers because I read early on that aspirin can actually impede healing. It's something to do with interfering with cartilage regeneration. Although I don't think anyone has found "proof" that it works I've taken glucosamine for most of that time, in fact only stopped for a while when I developed PMR because at the time I thought it was OA and the glucosamine wasn't working. However, considering how little progression there's been of OA in my body over the past thirty years I am inclined to believe that the glucosamine helped. I take a high dose, 1000 mg twice a day.

[HeronNS]

Thanks to reassurance that morning headaches not likely to be related to adrenals I started taking an allergy med, and, yay, three mornings so far with no headache!