Reducing Prednisolone

[obrien23]

Been on steroids for almost 12 months now. Started on 20mg per day. Have reduced down and now on 4mg perday. I can't get past 4mg have tried 3mg for about 10 days (twice) I was full of pain with eratic moods, so back on 4mg. I dislike taking them have put 2 stone in weight on. Wondering if I'll ever be steroid free. I do hope so.

[piglette]

Of course you will be steroid free, if you have managed to reduce so quickly and so effectively. PMR takes its own sweet time. Just take it slowly from now on as you are having a very small dosage. Try again when you feel really well, using the slow method.

[obrien23 in reply to piglette]

Hi piglette good advice from you, thank you

[PMRpro Ambassador]

To have got to 4mg in under 12 months is pretty good in the great scheme of things! After over 7 year - i wish!!!!

It is perfectly possible to lose weight while still on pred - cutting carbs drastically works well and I knew several people who have lost weight using Slimming World despite still being on pred. It may be a bit harder but it can be done.

[obrien23 in reply to PMRpro]

Hi PMRpro yes i suppose I have done well getting down to 4mg. I feel ive rushed it and must stop it. Sorry to hear youve been poorly for 7 years my word that's awful for you. I am going to Slimming World next week with a friend. I will put my mind to that instead of trying to rush reducing meds

[PMRpro Ambassador in reply to obrien23]

I've actually had PMR for nearly 13 years - it wasn't diagnosed so the first 5+ years were without even the joy of pred! But I am one of the very few people who is friends with her pred! It gave me my life back - for which I am eternally grateful. If symptoms reappear - I take slightly more to manage the inflammation properly. No compromises!

[obrien23 in reply to PMRpro]

Sounds a little similar to me too. I had and have learned to live with the pain. It was terrible night sweats that actually took me to my GP. I was even changing bedding in the early hours. This had gone on for about 18 months So blood test etc diagnosed PMR. Have you had night sweats, or have you heard of severe night sweats through PMR?. When i reduced too quickly they came back with a vengance, pain too.

[PMRpro Ambassador in reply to obrien23]

Sweats, day or night, are part of many autoimmune disorders, including PMR and GCA.

I do find it worrying how many people ignore drenching night sweats for so long - they can be a symptoms of very serious illnesses including cancer. Mine were more serious glows at night and sweat trickling down my spine during the day!

I also notice them returning in the early morning if I am flaring. They coincide with the time the daily batch of inflammatory substances is shed in the body - being on enough pred presumably combats that effect more quickly.

[obrien23 in reply to PMRpro]

You are so right. I had a terrible sweating episode last night. I have had a full body scan, they were looking for Lymphodemia. Fortunately all was clear. The sweats are very deliberating, there doesn't seem to be any information on them, or at least I havent seen any so wasn't aware they were part and parcel of the condition. I am reducing and yes they are back. Appointment at Drs next week

[DorsetLady PMRGCAuk volunteer]

Hi,

As others have said, you've done well to get as low as you are.

Why not stay at 4mg for another few weeks, and then when you feel good, try dropping to 3.5mg and using a slow plan, if you don't already.

Sometimes you have to gauge when is a good time to taper, we all have good times and bad, so don't get forced into reducing because, it's the first Monday in the month, or it's four weeks from the last one. Listen to your body, and go slowly.

You'll get there, but there's no great rush, 4mg is a low dose anyway.

[HeronNS]

I think you've done brilliantly with your taper, but it is so important to feel well. I took about the same time to get to 4, using the Dead Slow Nearly Stop method, although starting at 15. My doctor said she was very happy with me to be at 4. Six months later I'm working on getting down to 2 mg. We're in this for the long haul.

[margiebell4]

I am also on 4mg , having started on 15mg 18 months ago. I have taken the advice from the very experienced people of this group, and have not had any problems so far 🤞🏻 I didn't try to lose weight until I got down to 5mg, I am pleased to say that I have lost the weight I gained, and more I don't know if I am alone in feeling quite scared of coming off pred altogether, although I will of course try to do that. I suspect it may be masking others aches and pains!

[DorsetLady PMRGCAuk volunteer in reply to margiebell4]

Yes it does! plus depending how long you've been on it, your body has aged, and small niggly aches and pains you might have picked if not on the Pred, have escalated.

Having said that, just being off the Pred does makes you feel better mentally!

[Jackoh]

Like everyone else think you have done so well to get down to 4 mg. Don't rush things now! X

[obrien23 in reply to Jackoh]

Thank you Jackho. All isn't quite right though the awful sweats have returned day and night. So Drs next week. I have had a full body scan to determine the sweating ie cancer but all was clear thankfully. I wasn't aware sweats were part and parcel of PMR, i don't seem to be able to find any literature on it. Hope you are okay with your PMR

[Jackoh]

I must admit haven't had a load of sweating, only some in the evening, although have read on here about others who have - I seem to remember that Celtic had a lot of sweating and wore a head band. She'll say if I've got that wrong. I just think everyone is so different with this illness - there is no clear route and clearly defined symptoms common to all. It is a bit like a game of snakes and ladders sometimes but the end is always in sight!!

Jackie x

[9lives in reply to Jackoh]

I like your description "snakes n ladders ". For PMR. It's pretty good analogy, Just when you think you are nearly there you hit a snake. I will keep this in mind because this will help me deal with the ups n downs of it all. Thank you so much for that.

Hope you doing ok

Carole

[Jackoh in reply to 9lives]

Because I pick things up on this site like a sponge then I've probably read the analogy of snakes and ladders on here somewhere before!!!! I'd like to claim originality but probably not the case!!! 😜Xx

[Celtic PMRGCAuk volunteer]

Jackie, your memory serves you well in spite of steroids!!

[luckybelle]

Hi, this is my first post on this forum. I don't know what I would have done without my daily dose of HealthUnlocked. I have had PMR since August 2015, I was 57 when diagnosed. I commenced on 25mg and am now on 4mg also. I was at 4 and 1/2 and could not get down to 4 without pain, so did a few of weeks on 4 and 1/4. Then slipped down to 4 without any problem. Will stay here for about a month I think before another reduction. If you have a good tablet cutter it is easy to make a one mg tablet into 4 pieces, in my experience. Hope this helps.

I too put on weight, about 4 kilos, but am now down to my pre PMR diagnosis weight.

Thank you everyone for all your supportive advice. My rheumatologist put me on methotrexate because I wasn't coping coming down from 10 mg to 9. It was before I had found this site. I suffered from mouth ulcers and generally feeling apprehensive about being on this drug, I made a decision to discontinue MTX back in August 2016, when I had to have an infected wisdom tooth which needed to be removed under general anaesthetic. I had to wait about 6 weeks before the surgery. I felt that it made no difference to my tapering regime. And I can have a couple of reds a few times a week without feeling guilty and it causing liver problems

[obrien23 in reply to luckybelle]

Hello luckybelle you sound as if you are doing well. So pleased for you. I am taking 4mg not rushing anything at the moment, since getting lots if advice on here that was my mistake wanting to me pred free as quickly as possible PMR had other ideas. I have a chest infection at the moment, diagnosed yesterday, i had dreadful drenching sweats last week this infection could have had a lot to do with that. Isn't it a great site here so much information. I no longer feel alone. Take care so pleased you are doing well.