Tapering

[Noni71]

Just a quick question about tapering Prednisolone. I have had GCA since Aug 22. Have tapered down to 5mg but had the beginnings of a flare. My rheumatologist told me to go up to 7.5mg. The flare abated. I then got an infection/virus and on the advice of the rheumatology nurses increased to 10mg for a week. I am now back to 7.5mg and soon would like to begin tapering again. Would the DSNS method be my best option? The rheumatologist said he thinks I may be on 5mg for the rest of my life! I am also on 7.5mg of Methotrexate and a monthly Tocilizumab shot (only until June). Thanks.

[DorsetLady PMRGCAuk volunteer]

A slower taper is always the best option,,especially when you are likely to be dealing with adrenals stuttering. But as you are recovering from virus I wouldn’t be in too much of a hurry to get started on tapering, maybe give yourself another month.

[Noni71 in reply to DorsetLady]

Thank you for that. I did wonder if I was rushing the start of the taper.

[DorsetLady PMRGCAuk volunteer in reply to Noni71]

Less than 2 years with GCA - and with MTX and TCZ in the mix seemingly a stubborn strain, there there is no point in rushing things.

Just as a matter of interest, why does Rheumy think you may be on 5mg for life?

[Noni71 in reply to DorsetLady]

It was remiss of me not to ask him that question directly at our last face to face appointment. I guess I was a bit shocked at his statement. Maybe it’s because every time I taper down to 5mg I have a flare?

[DorsetLady PMRGCAuk volunteer in reply to Noni71]

Yes but that’s because you are still quite early into GCA - and need more than 5mg. Doesn’t mean it will always be that way…

[Noni71 in reply to DorsetLady]

Hope you’re right! It feels such a long time when you’ve had it for a year and a half but I guess it’s nothing compared to many!

[DorsetLady PMRGCAuk volunteer in reply to Noni71]

Nope 😳… 18 months undiagnosed, and then 4 years on Pred… mind you no TCZ when I had it…

just saying 😂🤣

[Plains in reply to Noni71]

Mine told me the same thing. He said once I get to 5 mg to stay there. I take Actemera infusions as well. I had many flair with GCA.

[SnazzyD]

I think you have nothing to lose given that they think 5mg is your stopping place. I would also be interested as to why at this relatively early stage that they think 5mg is it? Also a slower reduction, it might give your body a chance to settle after all these ups and downs, infections etc.

[SheffieldJane]

I hope your Rheumatologist is wrong about being on a small dose of Pred for life. Do see an Endocrinologist before you accept this.

[PMRpro Ambassador]

We think so - and the lower you get, the slower you should go for 2 reasons: you are ever closer to that "lowest effective dose" and from about here your adrenal function needs to wake up. And it doesn't do that over night.

And no tapering until you are really over the viral infection. Wait for spring ...

[Noni71 in reply to PMRpro]

Thank you!

[Viveka]

As your flare resolved going back to 7.5 it is positive that you didn't have to go up too high. So (at that time) your happy place was somewhere between 5 and 7.5. You could try a 0.5 monthly taper if you want to be cautious and certainly once you get to 6mg it's a good idea to do that.

Think the comment about staying on 5mg is very strange given you have GCA and only 18 months in... From what I've read on the forum it tends to be people with long term and stubborn PMR or adrenal function problems. Some rheumys get bees in their bonnets. Let us know what he says.

[Angelabody]

20 months in with GCA. Reducing prednisone using the tapering advice from here which was going well. Just before Christmas I had increased tightness of the jaw and scalp tenderness but no temporal headache and my prednisone was increased from 5 mgs to 20 for a week back to 7mgs for a month and now I’m on 6 mgs for a month. Today for no apparent reason I’ve got an unpleasant jaw and neck stiffness with slight headache so really depressing I may need to increase again. I know how you feel but we can only go really slow and hope for the best. I’ve never been told that I may always be on prednisone. Just wish I knew the triggers for me.

[DorsetLady PMRGCAuk volunteer in reply to Angelabody]

This link contains usual advice for dealing with a flare -

healthunlocked.com/pmrgcauk...

Would suggest that you drop back down to 7mg… and then reduce by 0.5mg a time…and use a slow taper.

Stress and trying to do too much are usual triggers for a flare - do those either of those ring a bell… and do you keep a diary - that might prove helpful to know what your triggers are - and maybe avoid them in future . Not always easy I know.

[Angelabody in reply to DorsetLady]

thank you I will go back to 7mg and then reduce by 0.5 a time. I keep a diary of my dosage but not symtoms which is a good idea so I will try that. Thank you for your time and advice.

[DorsetLady PMRGCAuk volunteer in reply to Angelabody]

Very welcome…

[PMRpro Ambassador in reply to Angelabody]

After only 20 months you are doing really well - and having had problems a couple of times at the same sort of level - don't force it. Take a taper holiday for a couple of months at least and then try 1/2mg over a really long taper.

[Angelabody in reply to PMRpro]

its good to know one is not alone when you get these set backs so I will try a slower taper and keep a diary as suggested by Dorset lady. Thank you again