pred reduction

[juli-pa]

I was advised by my renal consultant to start reducing pred. I was on 5mg a day & is told to take 5mg every other day. First couple of weeks I felt fine but this week experiencing pain in my hands. Not in my fingers just at the front of the hand. Is this normal? Just a little worried as when my pain started before diagnosis that’s where the pain started in my hands before spreading all over my body.

[Nadine99]

That's quite a drop. Maybe you should try a slower method. Try 5 one day, then 4 the next. 5 & 4 on alternate days then down to 4. Or you can try have 4 just one day out of 7 then 4 for 2 days out of 7 etc. Slowly slowly catchy monkey. Good luck

[juli-pa in reply to Nadine99]

I did think that was a big drop but when your consultant advises this you think you are doing the right thing.

[Nadine99 in reply to juli-pa]

We've been conditioned over the years to trust & believe everything they say and maybe, rightly so but after a few years of my husband having GPA, you learn to listen to your own body (or in my case, I listen to his) and you know that you need to modify the advice. Do ring and check with the specialist nurses and check whether they think a slower reduction would help.

[juli-pa in reply to Nadine99]

I just messaged him& he has emailed me to go back daily said there is no rush. I have been in remission for two years I wanted to get off these .

[PMRpro in reply to juli-pa]

If you have been on pred that long, it isn't just the illness that you have to keep your eye on but also adrenal function which at 5mg per day is still suppressed. You should be tapering at not more than 1mg per month and possibly less to allow adrenal function to wake up and adjust slowly. Even when you stop the pred altogether it will be a year before it is reliable.

[juli-pa]

I will go back on the 5mg a day & re access this on my next meeting with my consultant. I have researched & found a tapering graph from the imperial centre of endocrinology which is at St Mary’s in London son I will ask if I can try this route. I hate being on steroids but I do realise that my body needs them at the moment.

[Investigator1]

Hi juli-pa. I am under a Renal Consultant and I was advised to take the same path and I felt at the time it was a drop but I had only been on steroids for 18 months. However I have had episodes of low sodium (terrible) and high stress because of low cortisol levels which indicates adrenal malfunction so be careful. Taking all things into consideration I was struggling with Pred, and I counteract my adrenal issues with electrolytes and stress management so it’s the lesser of 2 evils. Nick

[juli-pa in reply to Investigator1]

thank you Nick I am going to talk to him on my next video appointment & ask if I can try a slower reduction. I found a graph of tapering from 5mg through endocrinology at St Mary’s hospital so will ask if I can try that.

[Investigator1 in reply to juli-pa]

Hi juli-pa it certainly won’t do any harm, it’s a belt and braces job I think, it’s funny (pardon that phrase) how you find out these things in different guises. I asked for a Cortisol test because as PMRpro says your adrenal function can be a big issue. I am having an issue at the moment in dealing with stress, our household had some quite awful texts from a family member over Christmas totally unprovoked and I became really poorly. At first I thought it was just my treatment I.e. Rituximab but after a second occasion the same happened. My GP says this can happen and can cause a relapse if not managed effectively so the situations presented by coming off steroids to quickly can appear in many different guises. So it’s best to confront these issues as early as possible. Nick.

[zoe69 Administrator Volunteer Vasculitis UK]

If you have been on prednisolone for long time you need to taper slowly to be successful. There are many ways to taper and I have tried them all, I think. I have attached a picture with my journey, if it helps.

Good luck!

My prednisolone journey

[juli-pa in reply to zoe69]

thank you I think 5 every other day is to much but you go with what you are told. At least I spoke up & hopefully now take a different route.

[Mooka]

The problem with the doctors that tell you to taper at the higher rate is they haven’t had to go through it themselves! Thankfully my consultant let me do it at my own rate which was the dead slow rate. Your doctor could also give you a Synacthen test to test your adrenal function. Good luck it’s never easy. The dreaded pred does cover over all those little aches and pains.

[RichardGPA65yrs]

juli-pa

I used the same tapering table to wean off pred. (no more than 10% reduction per week) taking it very gradually. I got terrible muscle aches as I came off. Need the 1mg tablets.

You can always go back up to previous weeks doses if you have symptoms or get ill (like you did) then reduce down again when you feel better. You are in charge of this. Good luck.

[juli-pa in reply to RichardGPA65yrs]

thank you x

[Roughley17]

Hi, I've also been trying to reduce Prednisolone. I'm now down to 2.5 mgs a day. I struggled at first, getting aches and pains in my legs which, like you, was one of the first of my symptoms. It has eased a little, though I often still get leg pain in the night. I intend to persevere and hope that it will pass. Hopefully it will settle down, at which point my Consultant said to go down to 2.5 every other day. Reading around the topic, it's clear that coming off Prednisolone can be tricky but on the upside, reducing to 5mgs a day is still positive, as I was initially on 60 mgs and I'm sure you were the same.

Good luck!

[juli-pa in reply to Roughley17]

thank you for the advice x

[Paprika60]

I was on prednisolone for seven years, moving up and down. Finally I just had enough of having all the issues regardless of Pred. I just made up my mind (like you have I think) and told my doctor. When he told me that I could stay on lower dosage for the rest of my life, I left him and found another doctor in another NHS trust. With the new and wonderfully understanding doctor I lowered it ever so slowly and in the end it took me almost two years to go down from 2.5mg to. just 1 mg. Doctors don't live with your body, you do. So you have to learn to listen and trust your body. If you start having bad symptoms, you can go back to 5 mg for four, five days and then get back to a lowering mode gradually. I was advised to do this by my doctor. I did this on many occasions. For instance, I was on 2.5mg for months but at some point started having swelling on my feet and etc. So I went back on 5mg. for four days which brought down the inflammation then I went back to 2.5mg. Hope that helps.

You might want to look into other ways to handle joint paint if it is isolated issue rather than the entire body. Supplements, magnetics and etc. But please be patient with Pred and stay determined. You will kick it even if it takes a few years! Good luck!!

[juli-pa]

oh thank you so much for the advice. I saw want to do this !

[Hidden]

5 mg is actually not that much considering there are people who are on 60 mg and 80 mg a day. Kidney transplant patients have to take 5 mg every day for the rest of their life. When my GPA was active, I was taking 25 mg a day. I stopped Azathioprine and Prednisone in Sept of 2019. My Neph manages my GPA and I recently asked him about lingering joint pain from the GPA and told him I have a lot of arthritis and I get these random stabbing pains in different places on my body. He prescribed 10 mg Prednisone a day and said if that helps to cut in half and see if 5 mg works which it does. I now take 5 mg daily and it sure helps with the pains that I described to him. He tells me that your adrenals make 2-3 mg of cortisol daily but every article I've read says they make 10 mg a day. Adding 5 mg to that gives it an extra kick. Yes it takes a while for your adrenals to wake up after stopping but if your adrenals are not making enough at all, then having that extra 5 a day just might be the ticket.

[juli-pa in reply to Hidden]

yes I started on 60mg two years ago & I went straight into remission with the rutuximab. I was doing ok for the first couple of weeks but then started getting some pain in my hands which worried me as this was one of my original symptoms before diagnosis. I just think if I can try & reduce & finally become steroid free then that would be great but I do also understand that this may not happen. Unless I try I will never know. Thank you for the reply.