urgent med query

[jazzgirl80]

how do i convince my consultant that i want to be started on a low dose of pred for suspected AIH. i dont like the idea of 30 mg

[SheffieldJane]

There is probably a more helpful site for your conditions we won’t know the arguments for and against with a liver disease. We do PMR and GCA.

[HeronNS]

I see you have posted a somewhat different question in the British Liver Trust community. We can only offer advice about how to handle prednisone (Prednisolone) for our own condition; as SheffieldJane pointed out we don't know how steroids effect your condition. I suppose many of the side effects are similar, although of course we all react differently to this medication. Some of the side effects, like weight gain, can be controlled through diet or other slight lifestyle changes. Effects on your mental wellbeing may or may not affect your ability to concentrate and to learn, depending on the dose you are taking and how your own body reacts. On the other hand, steroids can also make you feel so much better that will counteract some of the brain fog effects. Accepting corticosteroid treatment with a positive attitude will help. Many of us have been very reluctant to take pred, but feel so much better once it kicks in we call it a miracle!

And if it is any consolation, 30 mg is a high moderate dose, not a really high dose. It is often necessary to take higher doses at the beginning of treatment in order to get proper mitigation of the disease. There is no point taking less than the doctor believes is necessary. How long do they say you might expect to take 30 mg? Will you eventually be tapering down to a lower dose?

[PMRpro Ambassador]

There is no point at all on the basis that pred is used in AIH in the same way it is used in PMR:

"Doctors typically prescribe prednisone at a high dose for about the first month of treatment. Then, to reduce the risk of side effects, they gradually reduce the dose over the next several months until reaching the lowest possible dose that controls the disease. Adding azathioprine also helps you avoid prednisone side effects."

When you start with a low dose it may well be too low to achieve anything and then you have to increase anyway. Creeping up slowly means you are being exposed to any side effects without any benefits, it is all a risk/benefit calculation. By starting at a higher dose - and 30mg isn't that high, many people here started at 60 or even 80mg to achieve very quick reduction of inflammation and reduce the potential damage - and then reducing over subsequent months you correctly identify the lowest dose that works for you. It is a process called titration and is to find the personalised dose. What would probably happen is that by starting at a low dose you could have months of inadequately managed a/i disease and still have pred problem. By starting at a higher dose the inflammation will be managed quickly and then you reduce the dose to the level you need, possibly quicker than the other way round.

The reality of taking pred is that it isn't half as bad as many people say - and many of the so-called adverse effects can be managed or avoided when you know how. The reality of you NOT taking enough pred is that ongoing damage to the liver may result in irreversible damage which doesn't heal and could mean needing a liver transplant further down the line - and then you need heavy duty immunosuppressants for life to avoid rejection of the organ.

Doctors don't suggest starting pred for fun, they have a lot of experience and start at a dose that is enough for most patients so it then goes down for most patients later. They get the inflammation under control and then go down until they see the dose is no longer enough to do what is required. You have to trust your doctors to do it the best way for a long term result.

And if you have pred side effects - you can ask here for advice. Perhaps the most notorious and most feared of weight gain can often be reduced or avoided altogether by cutting carbs drastically, especially processed carbs and added sugar. Plenty of people here who can attest to that. Pred has a lot of listed side effects, over 80 in most lists. No-one gets them all, some people get next to none.