Lactose intolerant and need to come off soluble steroids without discomfort

[JCZW]

Because of lactose intolerance,I was prescribed 5mg soluble prednisolone tablets. This is the smallest amount available in soluble version.

I now have to come off them, and don’t want to suffer from having to switch to smaller volumes of normal steroids which generally contain lactose.

Does anyone know of other steroids without lactose?

JCZW

[PMRpro]

Depot medrol injections taper the dose over the duration of the release. It is also possible to get liquid pred which shouldn't have lactose in it but don't know the details in the UK. That means it is easy to adjust the dose by using a syringe to measure it,

How long have you been on 5mg? How soon must you taper to zero? Is it possible to cut the tablets before dissolving them? And of course you can just take a proportion of the dissolved tablet - wasteful perhaps but needs must.

This approach was partly developed to allow people to reduce their dose slowly in 2.5mg steps (we advise 1mg at a time max, but preferably not more than 10% of the current dose):

healthunlocked.com/pmrgcauk...

You are challenging your body with the new lower dose just one day at a time with several days of the old dose in between. For most people after the 3rd/4th presentation of the new dose it feels better and you can do each step as many times as you need to smooth the drop. It might work with a 5mg but it hasn't been tried.

[JCZW in reply to PMRpro]

I have been on 5mg of prednisolone since August. Have tried to taper off twice by following 2 plans given to me from the doctor both times I had really bad reactions to them and have been told to stay on 5mg for the moment. Trouble is I'm getting really bad side effects.JCZW

[PMRpro in reply to JCZW]

What are the side effects? Most can be managed or at least mitigated when you know how.And what about the other questions I asked?

[JCZW in reply to PMRpro]

I was advised to take 5mg one day then 2.5mg the next then 5mg etc. This caused me to pass out needing to call 111. Then the doctor advised 5mg for 3 day then 2.5mg then 5mg for 3days etc. The same thing happened. I am on 5mg daily and most days I'm lightheaded and have started shaking at times. The doctor is contacting me in 2 weeks time to discuss a new plan. Each day is a challenge for me at the moment.

[PMRpro in reply to JCZW]

I asked the questions I did not because I'm nosy but because all of us on my home forum have to take pred and reduce to zero over a long time. We have loads of experience at coping with pred adverse effects as a result and with tapering. But it helps to know what the problems are.

What the GP suggested is similar to what I suggest in DSNS but the starting gap is far too small - one day of 2.5mg would need 10 or probably even more days of the old dose at this stage. More than 10% change in the dose in a month is likely to lead to problems.

Actually, the symptoms you have at 5mg are already suggesting adrenal insufficiency is a factor - and you might need to switch to hydrocortisone (3x daily) to be able to wake adrenal function up. The aid of a really good endocrinologist might be helpful - the average GP is out of their depth. So are rheumies if it comes to that ...

[JCZW in reply to PMRpro]

Thank you that is very helpful

[Ar29980]

Hi JCZW

If you are using soluble prednisolone 5mg tablets then weaning your dose shouldn't be a problem. If you normally dissolve your tablet in 5mls of water then you just need to reduce the volume of the solution you take. For example,

5mg=5ml

4mg=4ml

3mg=3ml

2mg=2ml

1mg=1ml

You can't keep the solution for a future dose and you will still use 1 of the 5mg tablets per dose but this way the difference in dose doesn't have to be as big as 2.5mg.

Even if you wean by 0.5mg this makes it easy eg.

4.5mg=4.5ml.

Its not the preparation you need to change, its how you take it and taper the dose more gradually after discussion with your doctor.

Hope that helps

[JCZW in reply to Ar29980]

Thank you so much that really helps. I have an on line consultation with the lupus doctor on the 28th so will definitely talk to her about this. Once again thank you.