The one good thing about going up to 25mg of methyl prednisolone for myositis was the disappearance of the nausea and headaches that had been an everyday presence for the preceding year ( belatedly attributed to adrenal insufficiency).
Since my blood markers have improved, I've been on a steroid taper, at 2mg per fortnight, aiming to get down to 6mg by the end of November (my rheumy' s plan, not necessarily mine).
It's gone OK so far, but last week I went from 12 to 10mg a day. Now the beast shows its teeth again. I'm waking with a splitting headache and nausea again; symptoms that don't relent until late in the evening. The ginger, the metoclopramide, the ice pack, the sick bowl are all out again.
This isn't supposed to happen is it? 10mg should be enough cover, shouldn't it? x
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whisperit
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Yes it’s good to reduce. I’m a scientist not a doctor! Always found it best with trials over time to reduce or increase by a fixed percentage not a fixed number. It can be difficult dividing up tablets. 2mg at 25mg is only 8%. 2mg at 12mg is 17% reduction. So possibly a 1mg reduction every 2 weeks!
12 mg is not a huge dose so I don’t think you should plan to reduce too quickly. My rheumy said that I should be looking at 0.5mg every few weeks or as my body can tolerate. I’m glad your ‘numbers’ are looking better now, it’s been a long journey xx
Yes, thanks, My rheumy seems consistently to underestimate the difficulty of managing steroid doses, and also to downplay how tough it can be taking some of the meds we have to. It's a long journey alright - basically, never-ending x
Depends - in theory yes but the bioavailability has a lot to do with it. Some people absorb 90% of their oral pred dose, other as little as 50%. If you are a 50% person then you are only getting the equivalent of 5mg-ish and that is low enough to conjure up the spectre of adrenal insufficiency. 6mg OTOH may be just enough...
That's interesting. I guess there's nothing we can do to establish where we lie on that spectrum other than look at our response to different doses? But I have developed very pronounced Cushingoid features since being on the higher doses which maybe argues against low absorption? Anyway, all possible reassurances/excuses are welcome at this point! Thanks x
Huge commiserations Whisperit as its so disheartening getting horrid symptoms back!. You've certainly proved which dose suits you best so it's good info for your consultant!. Are you seeing him soon?. Trouble is as I know it's always a dose that we're better on that we can't stay on for side effect risk!. It's an awful juggle we have to try to do. Very disheartening this is too. I've come out in sympathy as I've got headache, backache and nausea again after a break!. Do hope you feel better soon. Xx
Aw, sorry to hear you're having a bad time, misty. I'm seeing my rheumy in 3 weeks and did warn him last time that I thought the 6mg target might be too ambitious. We're all expert jugglers, aren't we? I bet the Loopy Circus would be a rare treat x
Glad it's not too long to see Rheumy Whisperit!. Mine wants me down to 5 mg ideally but it's a dose I've never managed to get to. 6 mg is my lowest so I know how you feel. I'm not surprised you doubted being able to get to 6 mg , not with myosotis!. They like us to try though!. I wish steroids didn't have the risks or there was a way to be told what side effects we'll get!. Now that would be clever!. My Rheumy has said I may get very few but they don't know so caution always has to be taken!. This is why it was quite an achievement for the new Rheumy I saw to say I could stay on 7.5mg for six months despite Dexa scan not being very good. I've got to go back on infusion for that.Thank goodness there are these treatments!. Good luck for when you go Whisperit and I'll join the loopy circus. Which ride will we go on?. Xx
Yes, you've had a real battle. After all, it's not as if we want to be on these drugs, is it? Not just juggling, but a bit of a high wire act, too...when's your next treatment/review? x
🙁 sorry to hear this, so hoped you were on the up. Steroid reduction is such a pain. I found 12.5 to 10 very tough and had to go back up 5 times last year (I was refusing to take the 1mg because the GPs wouldn’t give me the enteric coated ones so having to do 2.5 drops!). Maybe go to 11? I’m doing reduction of 1mg a month now (persuaded GPs it was in their interests to do enteric coated!) which is enormously frustrating when we’re so impatient to get rid of them but have learnt the hard way that anything other than painfully slow means it takes longer in the long run as then have to go back up to much more as reflare. Do you think yours is a reflare or pure steroid withdrawal? It’s so hard to know though especially with your adrenal insufficiency too. My rheumy said that steroid withdrawal symptoms should improve after a week but if it continues any longer it’s more likely a reflare. We’re all so different though and it’s a constant experiment on our own bodies to see what works isn’t it? Then when we’ve cracked it, it all changes again 🙄
Good luck with it, do really feel for you as the nausea is horrid - have you got any ondanestron? (I think I’ve spelt that wrong). I find it quite effective.
After more than 3 years, I still cannot find any pattern to my symptoms other than those that seem to kick in when I am changing meds or steroid doses. It's a source of constant frustration and bewilderment for me and for my clinicians, as even the med-related changes don't seem to make much sense. That's why I ended up with this random "Fibromyalgia" diagnosis - rheumy simply could not come up with any coherent explanation. As you say, we think we've cracked it one day, only for the next to completely refute our theory. I use metoclopromide for nausea, which is quite good, but have a box of ondansetron ready for emergencies! Hope you are feeling better and managed to get some kind of a holiday - maybe a tour of Omani pharmacies was top of your "To Do" list anyway? x
Are you feeling any better? Yes it’s such a frustrating disease with it’s unpredictability and yours seems more unpredictable than most.
Ha ha well we’ve added the medical side into the cultural exploration of Oman. The fact I could see a dr and then a pharmacist and discuss quite openly blood in urine etc and them offer cheap drugs but not be willing to touch me or exchange money! Fortunately I’d taken my 12 year old son. He was delighted to explain it was because he was the man 🙄😂 x
Hello, not sure if this will help with your nausea, but I take .25mg of alprazolam and it stops the nausia and the vomiting. I sometimes have to add ondanestron but not often. I live in the United States and the ondanestron is not covered buy insurance (and is very expensive) unless you are also taking chemotherapy medications. So out of necessity I found that the alazopram works just as well . I have SLE, sjogrens, IC, vasculitis, I have learned so much from this group, I hope that this informationtion might be of some help.
I only learnt this recently. I was being sick on MTX and my GPs gave me ondansetron and said take when feel sick but rheumy said take day before I inject. I was tempted to ignore him because it seemed strange when I might not even feel sick but gave it a go because he’s always right - and he was right! Worked much better. I also have a son who gets regular episodes of severe constant vomiting and if we get one into him at the prodrome stage it’s much more effective then when he’s started the vomiting. Useful to know! Not sure how that would work for whisperit though if the nausea is almost permanent 🙁 x
Yup - OH was given it for chemotherapy nausea but refused to take it until he was being sick at first on the grounds he was on enough drugs and didn't want any more. The ward gave him what for when they found out (I told them, he wouldn't listen to me). He kept saying chemo had improved - no it hadn't, still hasn't. It's the ways of dealing with the effects that have improved...
I am so with you - I suffer what I call my pain and nausea crisis when I over do it. My rheumatologist brought me down from 25mg to 7.5 using an erratic non linear method. The system she gave me is this: That is you take, for example, 12 for 3 days then 10 for 1 day then back to 12 for another 3. Then the next week, you do the 10 day on day 6, rather than day 4. Then week 3, you do 10 on day 4 again and then 10 on day 7. Then maybe you go back to just 1 day on 10 in week 4. Due to the erratic nature, the body does not react to the withdrawal the same way. It takes longer but it seems to fool the body into not noticing the shift. I had terrible time coming down from 15 mg in particular and this was the only way I managed it. Sending you my very best thoughts for your horrible pain and nausea, Lily
Thank you Lily for such a kind response. Persistant nausea spoils everything, doesn't it? The random taper regime sounds great! Did you find it worked then - or rather, how long did it take for the reduction you needed? x
Yes it absolutely did work, my rheumatoid drew me a diagram describing the method in my previous post and I followed it pretty much. I did 3 lots of 2.5 reductions from 15 to 7.5. The first drop was the worst and took about 3/4 months. I plateaued in between each drop for a few months and the overall task of halving the dose took me about 18 months. However, it got easier but there were times when I just listened to my body and slowed things up a bit. It is not easy. I will be using the same method to get me down to 5 then 2.5. You could try and see and you might find that you can speed things up a bit as you progress. Wishing you the very best of luck and my best regards, Lily
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