Going off prednisolone

[PenelopeVita-Finzi]

After nearly five years on prednisolone for GCA I have been on 1mg for about 3 months plus Methotrexate. I saw the young registrar yesterday who said that, if my blood tests were fine, I could come off pred completely and abruptly. As a great believer in the dead slow method, I feel that I should do this more gradually. Does anyone have advice on this?

[Hidden]

Hi, for me its a simple answer. Do what's worked so far. The last thing you want now is to destabilise and flare. 🌻

[DorsetLady PMRGCAuk volunteer]

Hi,

You may well be able to, but as it’s such a low dose no rush. Personally I would taper to 0.5mg and then zero still using a slow taper.

Good luck.

[Yellowbluebell]

It's only going to take a few weeks more if you went to .5mg. What's the point in rushing over such a short amount of time? Well done though and good luckx

[PenelopeVita-Finzi]

You confirm my feeling! Many thanks for your replies.

[SheffieldJane]

I would go with my instincts and cut that little tablet in half.

How helpful did you find Methotrexate?

[PenelopeVita-Finzi in reply to SheffieldJane]

It is difficult to tell whether or not Methotrexate helped cut down on the pred or not. I didn’t have any side-effects so I stuck with it. I still took a long time to reduce the pred.

Yes, I think you are right, cut the tablet. Thank you

[PMRpro Ambassador]

Img has been enough to keep people symptoms-free before when zero turned out not to!

The tiny amount more to do it the way that has worked so far seems negligible.

[PenelopeVita-Finzi in reply to PMRpro]

That’s interesting. I will err on the side of caution. Thank you.

[jinasc]

I have a BIG question, are you coming of Metho at the same time?

Remember Metho is used as a steroid sparing agent............and I think, I would be putting on my thinking hat....................ie should I ask to get rid of the metho first and discuss.

Me GCA only ...............5 years, down to 2mg and then a dispute between my two friendly Rheumys, one wanted me off, t'other said no-way.

So, appt made with Endo for Synacthen test........came back OK Adrenals working.

Then a machine for the Tabul study came into the hospital (another hospital could not use it - so my local snaffled it). However only one person trained and this is a Registrar, so after much bribery, because the study was only to see if it could be used, eventually, instead of a Temporal artery Biospy.

Those 3, being curious, decided I would have the use of the new machine ................result 'no halo, no sign of GCA.I came straight of 2mg pred to zero and now into 8th of remission. I was one lucky bunny.

So...........go slowly...............use the DSNS to get from 1mg to 0.5mg and then wait.

[PenelopeVita-Finzi in reply to jinasc]

No, I am not coming off Methotrexate until I have been off pred for 4 months. I have always been told that that would be the case.

All the excellent advice on this forum has been to go slowly. I have always ignored the advice of my rheumy about reducing as I have found the DSNS method reliable.

Thank tou for taking the time to reply so fully.

[Blearyeyed]

Tell you Registrar that you have followed this method of reduction and it has been successful for you so to make sure that you continue that success to 0 you would prefer , and therefore will be doing , the same as previous tapers.

You need to do what works for you and what you feel comfortable with , if he/ she doesn't understand the logic just explain that it may not seem logical to him but that you know you will be conscious of not following the previous method and the slight amount of consciousness that you will have that you have changed could cause just the sort of increased stress that would make it more likely that the pain would return and force you back on the steroid again.

You both want you off Pred so they should be willing by now to work with you in a way that works for you both.

[PenelopeVita-Finzi]

I think I shall just quietly go for the dead slow method. I don’t see the Rheumy very often. Thank you.

[-LJ-]

When faced with the same....and no flares in 2 years, I reduced to .5 for about 3 weeks. Then....all good so far...that was October, 2018. Still carry 1 mg on vacations just in case!