Pred reduction

Bones, joints and muscles
1

Hi, 

Can anyone please point me in the direction of the thread for reducing prednisolone. I found it once by chance but am blowed if I can find it again.

I was diagnosed with both PMR and fibromyalgia last year and was put on 10mg prednisolone which was increased to 15mg. I reduced down to 9mg and was then increased to 15mg. 2 weeks ago I was increased to 20mg (for 2 weeks to get the inflammation under control). This tied in nicely with rheumy appointment yesterday who said I can now reduce again.

The rheumy has pretty much left it to me and said if I get a flare up or become unstable then increase back to the dose I felt okay on.

My GP on the other hand makes me have blood tests every month and increases or decreases the prednisolone going off my blood test results though I only reduce by 1mg every month.

I now feel the fat face and weight gain are dragging me down so would really appreciate someone pointing me in the direction of that sensiblr reduction thread.

Many thanks

Dee

2

Dee, there are several variations of tapering steroids slowly, but the following is probably the one you have seen posted on this site by EileenH:

1 day new dose, 6 days old dose

1 day new dose, 5 days old dose

1 day new dose, 4 days old dose

1 day new dose, 3 days old dose

1 day new dose, 2 days old dose

1 day new dose, 1 day old dose

1 day old dose, 2 days new dose

1 day old dose, 3 days new dose

1 day old dose, 4 days new dose

1 day old dose, 5 days new dose

1 day old dose, 6 days new dose

It sounds as though you have been yo-yoingup and down the steroid doses quite frequently and once you embark on this routine it can often prove difficult to get reductions on an even keel.  Hopefully, the above slow tapering regime will prove more successful for you.

I think your GP is being thorough in repeating your blood tests regularly if you are someone who had raised markers at diagnosis.  My rheumy carried out regular ESR and CRP blood tests and, together with my symptoms at any given time, they proved a very helpful guide in my case.  Goog luck!

3

Send me a PM with your email address and I will send you both plans with full explanations.

4

Good morning MrsO, i read what you have told Dee, and i understand, but i dont know if i am thick, but after the last 6 days of the new dose do you keep on that for a while before decreasing again, as when i see my doctor i need to know what i am talking about or she understand , if you know what i mean. Many thanks Margaret

5

Margaret, if you feel well, yes you can now remain on the new dose every day;  if not sure, then you can mark time at the previous point or any other point along the programme.

6

Many thanks once again, i can now tell my doctor.

7

Follow this

https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316

This has all the links in the first post and my very slow reduction in the furthers posts.

8

many thanks for your responses.

Mrs O i do feel like I've been yo yoing but have been following my GPs advice so I'm going to give this a try.

My rheumy told me to alternate every other day so 20mg then 15mg then 20 etc for 1 week then 15mg for 2 weeks then reduce by 1mg every month but if I felt unwell then to go back to the last dose I felt well on.

It all seems so confusing but all I want is to feel a bit of stability and normality......if that's possible.

Just one more quick question, is it right to go from 20mg to 15mg or should that be slower?

Many thanks

Dee

9

Dee, if you were planning to go directly from 20mg to 15 every day, that would be far too large a reduction - to 17.5 initially would be wiser.  However, your rheumy's suggestion of reducing from 20mg to 15mg on alternate days means over the two days your daily dose would work out the same at 17.5mg, if you see what I mean.  So worth a go.  However, if that works, why not then try alternate days of 17.5mg and 15mg for a week or so rather than going straight from 17.5 to 15? Then after reaching 15mg each day and remaining there for a couple of weeks, a repeat blood tests would be a good idea before reducing further.

Yes, it is all very confusing - sadly that is the nature of PMR and steroids, but good luck this time around.

10

I think that is asking the body to adapt too much - no reduction should be more than 10% of the current dose which theoretically is near enough with that averaging at 17.5mg. However - in fairness to your body why not go 17.5mg anyway - you cut a plain white 5mg  tablet in half (enteric coated come in 2.5mg) or do 2mgs at time using 1mg white tablets. Some people are very sensitive to dose changes because their bodies can't cope with the stress and back come the PMR symptoms - they are not good bedfellows, stress and PMR.

11

Hi Everone,

Well following on from my post below I was doing great with the pred reduction but then started getting really strange symptoms and all in my head.......eyes, jaw, temple and the mother of all headaches that I just couldn't shift.

I'm guessing that those of you with the fantastic wealth of knowledge will know where this is leading...............I got diagnosed with probable GCA last week. Consultant said it was only 'probable' because the only way to confirm it is by biopsy and as I've been on long term prednisolone the test would not be of any benefit as the treatment would be the same.....60mg prednisolone daily.

ESR and CRP are up as well as white blood cell count.

To say I'm gutted is an understatement so any self help advice, knowledge or ways of coping better that anyone is willing to share will be gratefully received.

Many thanks

12

Oh tough luck dee - one of the people whose GCA starts looking like PMR. However - at least you have a consultant who isn't arguing about how to treat you which is a positive. 

The white count is up because of the pred but the ESR and CRP should fall again as the pred works its magic. 

I'll leave the GCA experts to tell you about coping mechanisms - I probably have GCA but not bad enough to threaten my vision. I had scalp and jaw pain but not for long and it went with 15mg. The only thing I'd say is keeping your carbohydrate intake to a minimum does seem to help with the pred-associated weight gain and keeps blood sugars more normal.

13

Eileen thanks for responding. I thought both fibromyaggia and PMR were bad enough and then the GCA sneaked out and hit me, literally!

GP sent me to the rapid eye care centre at the hospital and after Lord knows how many tests they said my eyesight was okay which was a huge bonus.

GP tests my bloods every month and rheumy sees me every 3 months so I guess I'm in good hands but it's just so very frustrating and at times I feel incredibly sorry for myself but onwards and upwards as they say.

I find the posts on this site very supportive and helpful but must admit to getting confused at times.

I've been on 60mg pred for 1 week now and am finding it really hard to go to sleep despite feeling absolutely exhusted so is this a side effect of thehigher dose pred? I get so tempted to Google my questions but then the answers often scare the pants off me so I ask my daughter and she filters the replies for me lol.

14

Afraid so, yes. Just try to rest - it is hard but resting is the best thing you can do at present to give your body a chance to heal. I assume you aren't working? If you are you shouldn't be for a while! 

Try to arrange things so you can lie down when you feel tired - it isn't as good as sleep but pred is a famous thief of sleep. It may make you feel very energetic - again do try to resist the temptation to try to do things.

Click on this link

https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316

and then have a look at the first link, the northeast support group site, where you will find a lot of good info that you can trust and (I hope) isn't scary. There are stories from patients and all sorts of stuff. There is an info pack for people who become members and a booklet you can buy separately at cost. I think they have a helpline to ask those questions of people who've been there. Some of them are on the forums too. The Scottish site is excellent too.

You probably need this more now it is GCA than when it was PMR that is a pain in the butt but less serious in terms of risk and dose level. But you will get through it - whatever it feels like at present.

15

Go to the link that Eileen has given you and look at the websites.

Don't be afraid, I had GCA and, yes it was a long haul, but it did go into remission.

Yes when you are on a high dose, you do experience ups and downs and you must just listen to your body and do what it tells you.  If it says rest, do so.  It is a steep learning curve, but their is much more good information out there and on this site, then when I first started our on the journey no-one ever wants to undertake.

I can quote one person who has the booklet:-

“Living with PMR & GCA”. Despite the fact that it’s short – or perhaps because of it – it’s the single best thing I’ve read. Real stuff.

Patients who know what it’s about for other patients.

I raved about it on the Health Unlocked* site yesterday and am delighted to see that there are already buyers lining up".

*Healthunlocked is another website which some of us on here use as well, but it is not as good as this site.  Members of the Medical Profession use this site and it is well administered.  Keep asking the questions.