Keep getting really bad heads is it due to lowering steroids??

[Geordie-chick]

I've been taking mycophenolate mofetil now for 3 month this is about the fourth lot of meds I've tried due to side effects. Over the last 3 weeks I've lowered my steroids from 7mg to 3mg and I've started to have the worst headaches ever. Should I increase the steroids back up ??

[Purpletop]

I wouldn't increase them, I experienced severe headaches when coming off the steroids but they calmed down once my body got used to the decrease. But check with your doctor, we are all different, you might react differently.

[Geordie-chick]

Thanx really appreciate your advice but I'm not back to the consultant until the end of February. I hate going to the docs I always feel like I'm over reacting I have came off the steroids before and never felt like this. I just don't seem to have much luck when it comes to medication.

[Briggsy]

I seem to get all the side effects from tablets, I am also on my 3rd or 4th lot and headaches were unbarable! I started taking feverfew ( extract of daisy) which seemed to stop the headaches progressing to any more than I dull ache snd my dic said they wouldn't interfere with my meds! However iv now cut out caffeine and haven't had a headache since! Sometimes it's good to think outside the lupus box :0)

[SueD2]

That's a very quick withdrawal regimen. Usually it's dropping 1mg every 4 weeks to prevent withdrawal. I'm in the middle of reducing prednisone again and still get headaches but a lot milder. I'd definitely go back and discuss it with your doctor.

[Geordie-chick]

Thanx I will make an appointment

[Hidden]

I agree with Sue. I'm tapering at the moment, from 5mg - and have been told 4mg for 2 weeks, then 3mg for 2 weeks, then 2mg for 2 weeks, then 1 for two weeks - that's two months to go down 5mgs. 3 weeks to go down 4mg just seems way too fast.

Not surprised you have headaches, but they will go. Just take care of yourself.

[tiredmum in reply to Hidden]

Its amazing how rheumy's are so different, mine tells me to have 20mg for 3 weeks then reduce by 5 mg every 3 days!!!!!!!!! I keep telling him it makes me so ill, but won't change it, so i have started reducing 2.5mg every week, coping a bit better this way

[Hidden in reply to tiredmum]

I'm guessing that it has something to do with the length of time you have been taking them (or else that some rheumatologists are sadists?)

I had to go from 7.5mg to 5mg in one go (before starting the tapering) and that made me feel awful: angry, tearful, monstrous, achey, tired.... yeuugh! I only stuck it because I am so desperate to get off them after more than 5 years, but it lasted 2 weeks.

[tiredmum in reply to Hidden]

Thing is I haven't managed to get off them yet, can't get lower than 10mg and been on them for over 8 months now.

[Geordie-chick]

I've came off them before lowering it weekly and I was fine so was told to do the same again but it's killing me this time. I try not to let it get to me but its the whole family especially my partner that suffer because I get so low and take it out on him because none of them really understand. Everyone thinks take a pill and your fixed ha ha ha