Predcontinuous use

[Howells]

I have been diagnosed for just over three years, have been on Prednisolone for over three years starting on 30mg day and I am now down to 4mg day, I have tried to reduce down lower four times and it has not worked, I was on methotrexate for 9months hoping this would help me to get off the Prednisolone but this made no difference except for making me feel worst so my doctor has recently taking me off these and has told me that I will have to stay on pred for rest of my life as there is no more they can do. Does anyone know of any other treatment available would love to be able to get off pred.

[Celtic PMRGCAuk volunteer]

Howells, being down to 4mg after three years is really not a bad place to be! Ignore the comment "you will have to stay on pred for the rest of your life". Some medics think we should recover within 18 months to two years but that is only in a 'textbook' situation and few of us achieve that happy status. Some patients can take four years upwards for their PMR and/or GCA to go into remission - it will do so when it is ready and not when our medics expect/want it to. I was on steroids for 5.5 years after being undiagnosed for a year.

The reason that you are finding it impossible to reduce from 4mg might simply be that you are reducing either by too large a decrement or too soon from one dose to the other. If you are comfortable at the 4mg dose, have you tried reducing by just half a mg and tapering to the new 3.5 dose over many weeks? For instance, throwing in the 3.5 dose just on one day of the first week, then returning to 4.5 for 6 days, followed by another day at 3.5 followed by 5 days at 4mg, etc. This takes about 7 weeks to reach every day at the new dose, and helps the body not to notice the steroid withdrawal.

Don't ever feel concerned about staying on 4mg for as long as you need - there are unlikely to be any side effects at this low dose. I was kept on 5mg for 6-7 months following a severe flare and, with hindsight, it was the very best advice, allowing my adrenal glands to get up to speed with producing their pre-Pred supply of natural steroid (cortisol), having been suppressed by the long term high Pred dose.

[PMRpro Ambassador]

Unless your doctor has had a synacthen adrenal function test done and it has shown you have no adrenal function he is talking rubbish. In the medical literature it suggests that about 25% of patients get off pred in less than 2 years and are at a higher risk of relapse than others. Half get off pred in up to 4 to 6 years. The remaining 25% remain on a low dose (under 5mg) either for a longer period or very occasionally for life and it is thought this may possibly be due to poor adrenal function in older patients - not proven though.

I have had PMR for over 10 years, have been on pred for nearly 6 years now and am also at 4mg and if I have to stay there for life that's fine by me but I do understand that there are plenty of people who would like to stop taking it. This is a low dose - and trying to reduce and failing can sometimes make it harder the next time. The body has become dependent on the pred and sometimes protests violently when it is removed - it isn't always the PMR returning but it is difficult to tell which is which. As long as the underlying autoimmune cause of the PMR symptoms is active you will need some pred to manage the symptoms. It takes longer for it to burn out and go into remission in some people than others - and some people are just more sensitive to removing the pred than others.

Celtic has already touched on the speed of reduction - if you use the search box to look for "Dead slow and nearly stop pred reduction" you will find a post with a fuller description of the scheme Celtic mentions together with an explanation of the how/why/wherefores. It has been used by a lot of patients on the forums to get lower than ever before and to spread reductions over a few weeks works far better than trying to go from old to new lower dose overnight.

Don't give up yet - you will get there. Just not yet maybe.

[cassey1879 in reply to PMRpro]

Thank you, very good and uplifting information

[jinasc]

email [e-mail] - subject heading reductions plans and we will send two plans for you to look at. Also put in where you found the information pleas.e

Also ask for a synathecen test to see if your adrenal glands have started to work.

[Howells]

I found the site on Google, can you tell me what the adrenal glands are and how they are connected to pmr please.

[Celtic PMRGCAuk volunteer]

Howells, the adrenal glands sit just about the kidneys and are connected with producing a natural steroid called cortisol. Long term treatment with Prednisolone suppresses this natural production rendering it not needed as the Pred is supplying more than enough artificial steroid (cortisol). When we reach around the 7.5mg dose of Pred (a dose equivalent to the amount of natural steroid made pre- Pred) our adrenals will need to get up to speed again in producing their normal supply of natural steroid. We can have a shortfall in our bodies whilst this process is taking place which is why we always recommend people to continue very very slowly with the Pred reductions from there onwards.