anyone afraid of actually coming off pred?

[Rosina1871]

pmr for 5 years , GCA for 3. I’m down to 2mg pred reducing 0.25 every six weeks. Doing well but as I approach the time of actually taking my final dose, I feel very nervous. I feel comforted knowing the pred is keeping the inflammation under control. Is it just me, or do others feel the same way?

[DorsetLady PMRGCAuk volunteer]

I think its normal to feel a little apprehensive, rather than necessarily afraid.

Hopefully the inflammation won't build up again, and if your PMR or GCA has gone into remission there there is no reason why it should.

But should that happen, then you know the answer...

Plenty have done it before you, and many more will do after you... 😊

[Rosina1871 in reply to DorsetLady]

Thank you

[DorsetLady PMRGCAuk volunteer in reply to Rosina1871]

Just to show it can be done -

healthunlocked.com/pmrgcauk...

[Rosina1871 in reply to DorsetLady]

Thank you for this. An inspiring lady

[SnazzyD]

Yes! I spent a year messing about with crumbs of 1mg.

[Rosina1871 in reply to SnazzyD]

Pleased I’m not alone 😊

[Jan_Noack in reply to Rosina1871]

I’ve been two years on less than 1 mg, probably longer .I can go a few days on none or a quarter occasionally, then I get stressed over something and I’m up to half to one mg again

[dancersize2 in reply to SnazzyD]

So did I while I dropped the MTX to 10mg weekly. All went well for 12 months with a couple of flares when I had covid vaccines and a respiratory illness treated with a week of pred then stop again. Had to go back up to 20mg pred when diagnosis changed from PMR to RA but otherwise still doing well.

[piglette]

If you just stop for one day and then go back on again and then do that again if things go well and slowly have a shorter period each time between zero days. One day you will find you can do two days even! And then …….. zero pred……

[Rosina1871 in reply to piglette]

Good suggestion. Thanks

[piglette in reply to Rosina1871]

👍👍👍

[Charlie1boy]

Took me three goes finally to get off pred, but now I’ve been on zero for over a year.

I was very apprehensive and unsure the first two times, but, for some reason, was more confident the final time. Third time lucky!

[Rosina1871 in reply to Charlie1boy]

Thanks Charlie boy

[123-go]

I am tapering slowly from 0.5mg to 0. I am telling myself I haven’t become steroid dependent although I do admit to going even slower over the Christmas period ‘just in case 😉’. I aim to be steroid free by the time I have my rheumy review in March. I WILL do it!

[Rosina1871 in reply to 123-go]

I like your reply. Haven’t seen my rheumatologist since last April when he said, see you in four months. I’m thinking of asking if I can be referred back to my surgery

[7DaysinMay in reply to 123-go]

I’m fascinated. Did you have to cut up 1mg tablets to get down to 0.1mg or are there ready made tablets at 0.1mg?

[DorsetLady PMRGCAuk volunteer in reply to 7DaysinMay]

1mg is smallest dose prescribed. Looking at NICE/BNF drug tariff there do seem to 0.5mg manufactured, but never come across anyone prescribed them on this forum.

[Malaga47 in reply to DorsetLady]

This is interesting DorsetLady. I ordered my repeat prescription last week for Prednisolone 5mg and 1mg tabs. I explained I was on 8mg and intended reducing to 7.5 and would half one of 5mgs to get to this. To my surprise a fairly new GP prescribed me 0.5mg tabs. Don’t think the senior partner will be happy if she checks the price. £10 + for 28 (0.5mg) tabs, against 70p for both 1mg and 5mg tabs. I will probably be refused next time.

[DorsetLady PMRGCAuk volunteer in reply to Malaga47]

That’s probably why most people don’t get it then -or their doctors don’t realise they are going down by 0.5mg each time,

Interesting though … do let us know if you continue to get it.. ammunition for others…

[Malaga47 in reply to DorsetLady]

I will keep you updated as to what happens next time I order. Thank you for providing so much helpful information which I’m sure is most welcome to all us PMR people.

[Malaga47 in reply to DorsetLady]

Oops think I’ve replied to the wrong place. Sorry. See below.

[DorsetLady PMRGCAuk volunteer in reply to Malaga47]

Not a problem - notification takes to reply anyway… not in wrong place -just the oddities of HU

[123-go in reply to 7DaysinMay]

I’m reducing by 0.5mg each time using a pill cutter to cut 1mg tabs. I am not attempting a 0.25mg taper.I am following a version of a slow taper- look here:

healthunlocked.com/pmrgcauk...

I say ‘version’ because I increased by a small amount over Christmas and over the past week as I felt I needed it to stay on top of things but only stayed at the increased dose for a day or two. You have to listen to your own body, read the advice and make your decision as an individual. Good luck.

[Meggsy in reply to 7DaysinMay]

I think you may have misread it. The 0 is zero, end of sentence. The I is a capital letter beginning the next sentence. 😊

[123-go]

Oh, dear! You could ring your consultant’s secretary to ask if you are on the list for a review or, with the merest hint of sarcasm, do they simply want you to let them know when you have reached zero. To be honest you have done very well. Do take piglette’s advice and aim for that final leap of faith. Imagine us holding hands and jumping together 😁.

[Rosina1871 in reply to 123-go]

Thank you - you jump, I jump 🤣🤣

[123-go in reply to Rosina1871]

👍👍

[PMRpro Ambassador]

I know others have felt the same! It's like a talisman isn't it?

[Rosina1871]

Yes it is indeed

[Tahiri]

I was on a quarter mg Prednisolone when I flared. I went up to 5mg but after 6 days my head is still tender to touch. I’m afraid to decrease out with the time limit. What should I do? Increase again ? I hope I’m writing this in the correct place .How much should I increase by for my GCA. I’m so disappointed.

[Rosina1871 in reply to Tahiri]

I think you need to start a new post with your question 😊

[Tahiri in reply to Rosina1871]

Thank you. I’m always making the same mistake. Apologies.

[DorsetLady PMRGCAuk volunteer in reply to Tahiri]

You can stay on the increased dose for up to 14 days without it impacting on your drop back down… so give it a bit longer and see if things improve. If not then you need medical advice.

But as you imply IF it is GCA - then 5mg is not enough, which is why medical advice is required.

[Tahiri in reply to DorsetLady]

Thank you. I realise that I interrupted someone else’s question in error. It’s been so long since I flared last that I forgot the procedure for dealing with it. Perhaps 5mg was /is simply not enough. I still am within time limit to up the dosage for a few days before decreasing to above where flare occurred. If that doesn’t help I’ll see my GP. The symptoms are identical to previous flares . Thanks again.

[DorsetLady PMRGCAuk volunteer in reply to Tahiri]

It not an issue asking in others post - it’s just that not as many people will see it as they will a new post…

[Pr0jection]

Yes, I am. I have a fairly decent quality of life on 7.5mg where I've been for just over 3 years. I can do all the things I did before diagnosis in August 2020. In fact I feel better than I did for the 2 years before diagnosis when I knew something was wrong but couldn't pin point the problem. I have tried to taper but ended up feeling rubbish. For me prednisolone is a Godsend. Whether or not I continue to feel this good is anyone's guess. My mother had PMR and latterly, GCA and ended up yo yo'ing with her steroid medication because her GP couldn't get it right for her. I have a brain aneurism, optic neuritis where I lost my central vision in my left eye, and PMR. At my last eye test I was told that my vision had improved in my left eye, possibly due to steroid treatment and I don't have any sign of cataracts. Maybe 7.5mg is helping to keep things at bay? These are all my own thoughts of course.......

[Maryis80]

I feel the same.After6+years on Pred got down to half a pill each day. Rheumatologist said to stop which I did but over the last few weeks have developed discomfort in shoulders and lower back. He said I should not start Pred again without a blood test which I am having tomorrow and will then speak to rheumatology nurse at hospital. I hope they will say to start low dose again

[DorsetLady PMRGCAuk volunteer in reply to Maryis80]

I do wish some Rheumy would realise that 0.5mg can be doing a lot of good….but don’t be too surprised if your bloods don’t show much of a rise. They very often lag behind symptoms… so if they aren’t significantly higher than expected ask if they can be repeated in another couple of weeks to check.

[HeronNS in reply to Maryis80]

Yes, you must let symptoms rule. I had heard of people who find they do seem to have some discomfort after discontinuing pred altogether but within a few weeks they are better. Hopefully you'll be fine. This is what I did the time I achieved zero (2020), tried to wait it out, and within, I think it was six weeks, had to go back on pred and later in the year admitted I was in major flare territory and probably had been for some time, just blaming pain on osteoarthritis. This pain vanished miraculously with pred increase, which I succumbed to after realizing my neck and shoulder pain was just like it had been before PMR diagnosis. (Am doing much better this time around, fingers crossed.)

[Tapestry1057]

I felt exactly the same but after 4 years of PMR and the help, support and sound advice from everybody on this site I took my last pred in November and so far so good. Keep positive and keep smiling. Wishing you all the best.

[Sandradsn]

I was wary coming off pred,after 5.5 years.I've been off it for 2 yrs.I had a few niggly aches to start with ,I spoke to new gp ,he gave me blood tests,hip xray,dexa scan and referral to rheumi! I was assured all was ok.I've had covid twice,all the booster jabs,injured my back after misjudging a step,alot of upsetting family issues etc and wondered if these may of triggered a relapse but I'm very well and some days feel really good for a 70yr old.

[Sweetpeasoprano]

Funnily enough I asked about this in a reply recently to someone else and had really encouraging responses. I’m apprehensive about stopping too. I take 0.25mg every other day and plan to wean myself off by adding bigger gaps. There’s a limit to how many bits a 1mg tablet can be chopped into!

[Potter100]

As I am tapering off slowly I just had a bit of a flare, so it worries me that I may be on pred for ever! I hate my fat 'moon 'face which I am told will disappear after stopping steroids, but will this ever happen? I know better to have fat face than pain, but vanity interferes!

[PMRpro Ambassador in reply to Potter100]

Have you tried cutting carbs drastically? I lost 35lbs of PMR and pred-related weight gain, including the fat deposits around my midriff and on my face.

[Potter100 in reply to PMRpro]

I have to admit to still eating all the lovely treats I received for Xmas. No-one knows what to buy me any more & chocolate is a fall back. I have gained 5lbs, but I did have the moon face before that. I don't use pred as an excuse for being fat, that's down to my lack of will power. I will watch what I eat to follow your advice.

[PMRpro Ambassador in reply to Potter100]

So am I - but not so much chocolate, more baked stuff. But if I eat them, I don't eat other things and for once have (almost) done dry January! Just had guests so it slipped for a few days

[Rosina1871 in reply to Potter100]

My moonface disappeared when I was below 10mg

[HeronNS]

Yes, I'm nervous too. Right now one day .5 mg pred, five days zero. On the fifth day (only done twice so far) I feel shaky in the morning but better later in the day. When that stops I'll try six days. Once seven days go well, that will be graduation day. Have been here before, but didn't go so slowly the first time. And my blood results weren't very good then so I was being an idiot by persisting.

[Songbird6]

Hi,Yes, I was and decided after reducing down to stop taking it the day after Boxing Day last year,so far so good!

A few very stressful things going on at the moment which have nearly sent me to the cupboard for my Pred but I have resisted but there are occasions when I think the PMR is lurking so I am cautious and when I have my bloods done in two weeks time, it'll be interesting to see what the inflammation levels are doing.