Hi everyone. Currently trying to taper off prednisilone completely after being given rituximab. Doing 1/2 mg a month as I suffer badly with side effects. Just gone from 5mg to 5 and 4 alternate days for a month and then will do 4 for a month etc. Is there any other ways to reduce with less side effects, makes me feel awful 😩
Jo
Don't think there is any easy way. I suffer too as being on them for 35 years things just don't get any easier. Any increase or decrease knocks me side ways. Even when I decrease one mg every other day I still have horrid feelings. My heart & BP goes into overdrive. I do hate them but shouldn't complain as they have saved my life over the years. Hope u manage to slowly decrease soon without too many effects.
Take care Hayley x
Thank you tremarel.
I am the same, increase or decrease makes me feel rough.
Terrible headaches, sweats and aches!
I have heard of different ways to taper down but can't remember them.
Jo
Do u suffer sweating that wakes u up of Prednisone I'm on 5 mg feel awful in a morning sweating wakes me up get about 4 hrs a night sleep and are your feet and ankles sore
You have my total sympathy with this. I have just been trying to do the same having been on prednisolone for 6 years. Like you I have been tappering by 1/2mg a month.
I too have been feeling awful. I got to 2mg, then kept getting extreme dizziness and kept feeling I was going to collapse. Unfortunately, I have had to go back to 3mg again. I feel like my body cannot cope without them now. I wasn't aware that there was any other way but very slowly. If you hear of another way please let us know. Good luck and hope you are successful reducing the prednisolone x
Hi loopy Lou.
Isn't it so tough? Going to give the lupus nurse a call tomorrow and ask her. They also told me that there is a blood test they can do to see if you have enough cortisoid which I'm going to ask about too. The dizziness and headaches are just dreadful, cannot get rid of the headache.
They say that if struggling too much to go up one and try again to come down.
Good luck to you too for trying to come down. Will post if I hear of the other way.
Thank you
Jo x
Hi Jo
Agree, it is so tough! Thank you for what you have mentioned. I felt so disheartened having to go back up to 3mgs. I am going to also ask about the blood test you have mentioned. It is so surprising to have such dreadful side effects when lowering so slowly. I really hope you feel better soon x
It's so disheartening 😟 But don't give up, next attempt might be better. Know it's important to be stress free when coming down too which is easier said than done a lot of the time. It might be worth having it just to check.
It's so horrible isn't it? Don't think there is any slower way of doing it 😟
Thank you, and you. Xx
Hi Joanne,
The blood test is a short synacthen test to check for adrenal insufficiency. The body produces around 7mg of cortisol naturally. When you have been on pred for a while then it takes the adrenals time to adjust and start producing cortisone again.
I know a lot of patients with PMR have had great success with the " dead slow and stop " method of steroid reduction. You take 5mg, the next day take 4mg and then 5mg for the rest of the week. The 2nd week you take 4 mg for 2 days then 5mg for the remaining 5 days. The 3rd week it's 4 mg for 3 days then 5mg for 4 days. It takes 7 weeks to reduce by 1 mg.
I used this method for the last 4 mg and have managed to wean off pred after 2 yrs taking it.
If you are unable to tolerate this really slow reduction then maybe the Rituximab isn't sufficiently controlling the underlying disease yet. Good luck!
Do you give yourself time to settle on 4 mg for a week or month before reducing again with the same regime or go straight into 4 mg and 3 mg?
Thank you
Jo
Hi Keyes.
Thank you for your reply, that's great, will give that a go starting from tomorrow.
Do feel like the rituximab is working, just struggle each time I reduce down on pred for a few weeks and then settle just before having to come down again. Think the way you did it sounds the best.
Glad you have managed to get off them!
Jo
Hi Jo,
The problem with reducing pred is that it's difficult to differentiate between pred withdrawal and a flare of the underlying disease.
Pred withdrawal symptoms usually settle within a week of reducing the dose, a flare will only get worse as the weeks go on.
It was really hard work getting of the pred but worth it for me as I have never had a proper diagnosis and it became obvious that even low doses of pred were masking my symptoms.
You can go straight into another taper once you finish the 7 weeks or hang fire for a few weeks. I think it's important to view it as a long term goal rather than a race!!
Am so glad to hear that the Rituximab is making a difference, it's a wonderful drug if it works.
Thank you so much for the info.
Think it's going to take a good while to do but the slower the better for me I think.
Are you taking anything else now to help with your symptoms? Hope you are doing ok since off of the steroids.
Thank you. I suppose you don't know for sure if it's working properly until you are off of the steroids which is a worry. Always waiting for it to return 😟
Jo
Wishing you all the vvvv best with this Joanne. Your attitude inspires me. So far I've only been taking 10mg tapers (always done over 4 weeks, going down 2.5mg each week). I dread going through the business of learning how to manage higher doses. But this discussion you've got going here is helping me understand this business better (Keyes: 👏👏👏👏) which means I feel a bit braver. For what it's worth, most of the people I know who have to manage this sort of pred tapering do it vvvvvvv slowly over long periods, with occasional increases along the way. One friend said this is all about learning to respond on a v individual basis to your own version of lupus (she is also on ritux, with IViG infusions too)🍀🌻
Thank you so much barnclown.
It is scary coming down on the steroids, they are like a comfort blanket, just don't know what's going to happen each time I reduce! I have a cataract starting in my left eye so I do know it's time to get off them and am determined to do it but just very slowly. Worked out that to come down on 5 mg I will be off them in June next year 🙈
Good luck to you too coming down. Keep us posted on how you get on.
Jo x
👏👏👏👍👌🍀😘
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