Reducing steroids
Posted , 11 users are following.
i managed to get to 3mg but then a flare up s
o back on 10mg. PAINS HAVE GONE !! When do i start reducing?
0 likes, 20 replies
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Notes on Reducing steroids
EileenH anne28129
Posted
If you are stable and pain free you can start reducing again. But the message your flare gave you is that 5mg is almost certainly right, with a bit of luck 4mg may be enough. But that is where you should stop next time. You aren't reducing relentlessly to zero, you are looking for the lowest dose that works as well as the starting dose did. If you have only been on 10mg for a week or so you don't need to reduce slowly, you could drop back to 5mg quickly. If you have been at 10mg for a bit longer you can still drop back quicker than our usual slow reductions - just be watchful.
anne28129 EileenH
Posted
Eileen, Ive been on 10mg for a week and feel so much better. Can i drop to 5mg now?
nick67069 anne28129
Posted
Yes, that what Eileen was saying. Usually there is no problem to go back to previous dose before flare started if you were on higher dose for a week or so. It might be prudent to go back to your previous dose and/or maybe add to it 0.5 or 1 mg just to be on a safe side.
EileenH anne28129
Posted
As Nick has already said - that is fine. But watch out for any return of symptoms. That would suggest you are flaring and the 5mg isn't quite enough.
jillian92038 anne28129
Posted
Please follow the guidance given on here by others. Slow, slow , slow. I keep falling into the trap of trying to reduce too quickly as I am so desperate to get off Pred but all that happens is that I extend the reduction period. Just try to be patient. I am hopeless, but am trying this time to listen to the excellent advice given on this forum.
Good luck
ninjananny anne28129
Posted
I was diagnosed with GCA last year started on 40mg Pred. symptoms were relieved immediately, gradually reduced down to 3mg I have been on 3mg for a month now, and now I am getting pains in my joints, fatigue, and bouts of feeling totally exhausted, is this classed as a flare? As I am new to this forum can anyone help.
anne28129 ninjananny
Posted
Sounds just like me. I got to 3mg but then had a flare up so back on 10mg. Blood test showed my ESP had gone up . Maybe i tried to reduce too quickly!
Anhaga ninjananny
Posted
If you make a new post then you will get replies specifically for you. Here only people who have followed Anne's post may see your reply.
EileenH anne28129
Posted
Not the speed of the reduction - you have gone to too low a dose to manage the inflammation. Nothing, nothing at all, will get you to a dose that is too low - however slowly you go, that will be your end point.
EileenH ninjananny
Posted
To reduce from 40 to 3mg in a year is very very fast. In fact, 40mg is the bottom end of the starting dose for GCA so overall you have been very lucky.
However, that is high enough a dose to make your adrenal glands go into hibernation so once you get to 5mg you need to reduce very slowly to allow the adrenal function to return more smoothly. The symptoms you describe could be due to the underlying cause of the GCA still being active enough to cause PMR level symptoms - they can also be part of GCA - which reappear at under 5mg pred in your case. Or they could be due to the 3mg pred not being enough to replace the lack of cortisol production by the adrenal glands.
Since you are now at 3mg you are at a low enough dose for your doctor to carry out a synacthen stimulation test to assess your adrenal function. I would ask for that. If your adrenal function is OK, then patience and slow reduction should allow it to return to normal over time but it is a slow process, thought to take up to a year after stopping pred altogether,
ninjananny EileenH
Posted
Thank you for your reply you have made more sense than my GP.
I have been following the instructions of the Rheumatology clinic, to the letter, I have monthly blood tests and CRP test was down to 19 the ESR had gone back up, this happens each month and each time I am told have you had a cough or cold I say "NO" then you must have an infection was the reply, my GP has said I do not need to see her anymore with regard to GCA . I have an appointment at the clinic next month and will mention the synacthen test
EileenH ninjananny
Posted
Does your GP understand that pred has not CURED the GCA? It is merely managing the inflammation created by the underlying autoimmune disorder? And that you will need pred as long as the autoimmune part is active?
ninjananny anne28129
Posted
I will try 5mg for a week and see what happens, and I thought I was doing so well😕
nick67069 ninjananny
Posted
it is usually better to "hit" it with larger increase , like your of dose +5mg for 4-5 days. If that clears your symptoms, then go back to last known good dose ( whatever dose you had before 3mg)
ninjananny nick67069
Posted
Thank you for your reply, I wish I had kept a diary, I feel sure everything was fine at 5mg so I have gone back to that, the clinic and GP seemed anxious for me to keep to the reducing programme as recommended by the consultant.
I now realize that I should have joined this forum earlier.