Hi everyone l am still new to this and you have all been very helpful. I went down to 30mg 2 weeks ago from 35mg. I was so happy then this weekend l had had a bad reaction. For 2 days all l did was sleep and feel terrible. My eyes were very bad and blurred and l was very depressed. Not sure what it was .could it be withdrawal from the 35mg? I also had a pain in my right lower side which feels better today. My mood swings have been terrible and l get so aggressive. I dont make anymore commitments as l am never sure how l will feel the next day.
Should l go back to 35mg. I am seeing my GP next week and reumy in May. Easter is coming and not sure how l am going to cope with it. Can anyone help me.
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Ryliefew123dogcat
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I had flare ups of GCA symptoms twice when I was trying to reduce to 25 mg of pred per day. Each time I went to A&E at the hospital where my rheumy is based and showed them a letter with my hospital number and name of consultant on it. I was seen by members of the rheumatology team each time, and also by an ophthalmologist the second time, when I was prescribed methotrexate to help me taper the pred. So far (16 months on) it has worked for me.
I think you are entitled to treat this as an emergency as your sight could be at risk, so recommend that you go to A&E at your rheumy's hospital as soon as possible. My main symptom was a return of the old headache that I had before starting pred. If you have eye problems, that seems even more urgent.
Thanks for your quick reply. Feeling better today and have gone back 35mg.l hope this will help. I will discuss with GP next week. It really helps to be in this group.Thanks a million.
If it didn’t come on straight away, then I doubt it’s withdrawal symptoms - they usually appear on day 1 or 2 of the new lower dose. If it took a couple of weeks, then I would say 30mg is not enough, and has allowed the inflammation to build up again.
You could try 35mg again for a few days and see if that makes a difference. Whether it does or not discuss with GP and if it has helped suggest to him you reduce by 2.5mg next time around.
Thank you Dorset Lady for your advice. I hope I can enjoy Easter with my family and will talk with my doctor next week.Many Easter good wishes to you. Dorset has always been one of my favorite counties in UK.
Morning DL.😎 I still can't get my head around the "withdrawal" thing! Even though doc says I'll probably be on pred for life (not long then at nearly 80)😂 I still occasionally try to go down 1/2mg (I take my Lodotra at night), the next morning I have pains in my upper arms that wake me up. Didn't take it seriously at first, but it's happened several times. I've always gone up to my old dose just in case. Should I have persevered longer at the lower dose?
I found early days (when I didn't know any better) that when I reduced, I felt pretty lousy for the about 3 days on the new lower dose. On about the fourth day I felt okay again, by which time the body had got used to new dose. It took a little while to realize exactly what it was. I didn't get a return of GCA symptoms like some do, but just felt a bit off colour and irritable.
It's difficult for me to say you should leave it 4 or 5 days and see what happens, because in your case it might not be steroid withdrawal, but the fact that you've gone below the level you actually need. 1/2mg doesn't sound much, but actually it can, and does make the difference of being enough..and not!
Lets face it if you are at 1 its a 50% cut. Thats a big amount to drop when 10% is recommended. Perhaps try 0.25mg- i can guarantee youll drop that little quarter lol.
Tbh- i would probably satay at 1mg but if you intend to drop perhaps take a good dose of pain killer for that night and into the next day. Get enough in your system to deal with withdrawal.
Why not try it once every few days for a bit? I found that at any dose it took 3 or even 4 challenges to stop noticing the lower dose. Then I felt ok both days and then strange on the higher day!!
But I thought your doctor said stick for adrenal reasons too?
No - I haven't had an adrenaline test. For some reason my doctor won't prescribe one. I think he feels the inflammatory arthritis and PMR to be the reason for keeping to pred.
I imagine he knows it is a low enough dose to cause no harm and that it will keep you more comfortable than a lower dose, whether it is for PMR or OA or whatever. Plus otherwise he would probably introduce another drug for the inflammatory arthritis - which you don't know how you would react to.
If you were OK for 2 weeks I would be more suspicious you had caught a bug of some sort unless the symptoms were the same as you had had with gCA which would suggest 30mg isn't quite enough yet.
Next time try just 2.5mg at a time - 5mg is more than 10% now and pushing your luck. And don't mess about until after Easter and the stress of family is out of the way.
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