Still have headache on 5 mg prednisone

[nallufl24]

Here comes the complainer again. I wrote over the weekend that I was on 4 mg pred and Actemra infusions. When I went on 4 mg I had a constant headache for 2 weeks. I was fine on 5. I called doctor and was told to go back up to 5 and stay til my appt in 2 weeks. I started 5 two days ago and was fine the first day, but the next two days my headache came back. I’m thinking of going up to 6 tomorrow. I hate to do that but I don’t think I should still have a headache. What do you think?

[SheffieldJane]

I am getting a lot of severe headaches, on 7 mgs of coated Pred and fortnightly Tocilizumab injections. Not sure what the stabbing pains relate too nor the Occipital head pain though I do have cervical Spondylosis and headaches appear in the side effects of my drugs.

[Grammy80]

For both of you gals...I can't say this is the case for you...but my neuro ophthalmologist found my headaches were due to an inflammation of the occipital nerve. To test he just gently touched two points at the base of my skull and it hurt. He scanned the nerve, gave me gabapentin (I've had no side effects) and after a few days the headache never came back. Just saying....food for thought. Good will to both of you.💕💕

[DorsetLady PMRGCAuk volunteer]

A couple of days is not really long enough to know - and are you sure it’s GCA - at such low levels of Pred it could be many things.

However if you’ve had it constantly for over 2weeks it’s should be investigated -and sooner than another 2weeks time…

[Hidden]

Sorry to read you're still suffering the headaches. I mentioned before that I've suffered occipital bone pain and tenderness for yrs and yrs on and off. Way before PMR was diagnosed. I massage them for a while and it goes till the next time. Headaches can be caused by lots of things and stress could be a factor. I get cluster headaches every day for almost a week coming on at the same time of day, usually around 2pm, then they go away for approx a month then return. I think GCA headaches are completely different to the norm.

[PMRpro Ambassador]

A couple of days of just going back to the previous dose doesn't seem enough to me if it is a mild flare due to going too low. The usual suggestiong for that situation is to add 5mg to the dose where the flare appeared and then go straight back to the dose that worked before.

[Sharitone]

I don't know enough to give you advice, but headaches suck, and if it were me and there were a chance that increasing pred for a few days might help and wouldn't do any harm.....

[Zacsmimi]

You will get more information here than you know what to do with. But looking back over 3 years of active PMR and nearly that long on steroids... I will offer you this. It takes awhile to figure out what works for you. It takes a while to know which problem is causing which symptom. It takes a long time to figure out your triggers and your best dosage approach. Decide in advance to be patient. Decide that this will be a long term, constantly changing situation and learn to live in the moment, only one day at a time. Don't dwell on what you feel, or on other people's opinions of how you should feel. Be kind to yourself and learn to listen to your body. For many of us - this was the hardest part of all because we had active, meaningful lives and jobs and all of sudden someone changed the set. Learn to go with the flow and appreciate every little thing you can from day to day. For most of us - it won't last forever (nothing does, really...) and most of us go into remission at some point. But you wills suffer SO much more than you have to if you struggle against the new normals. Go with the flow. Accept your new pace. Do the best you can. Godspeed.

[PMRpro Ambassador in reply to Zacsmimi]

What a cracking post!

[nallufl24 in reply to Zacsmimi]

Best advice. I do have a tendency to dwell too much and I desperately want to be normal which is not going to happen for a long time. Thanks! 🥰