Dropping pred

[Freeman12]

I have been diagnosed with large vessel vasculitis and recently dropped from35 to30mg pred. My symptoms have all come back. Does anyone think this is just due to dropping to a lower dose and should I have persevered to see if it righted itself?

[PMRpro]

How quickly did they come back?

If they appeared immediately you changed the dose then that would suggest your body is objecting to the change and manifesting steroid withdrawal symptoms - which have a nasty habit of looking just like the illness for which you are taking the pred. On the other hand, if it took a few days that suggests that the inflammation is ramping up again because the dose you are now on simply isn;t enough to manage the daily dose of new inflammation created by the ingoing autoimmune process.

For how long did you try the 30mg dose and what happened?

[Freeman12 in reply to PMRpro]

Yes almost immediately.Idropped on the 15th, it is now the 18th. Idone well on 35 but this feels just like the symptoms i had at first. Mild chest pain, severe fatigue, and feel my heart beating powerfully throughout my body and generally feeling dreadful.

My rheumatologist started me on 40 for 2weeks, 35for 2 weeks and 30 is meant to be for 3weeks.

[PMRpro in reply to Freeman12]

That is a very fast reduction. 40mg is the lowest starting dose for GCA - and most experienced rheumies would leave their patient at that for a month, 3 weeks at least. I would say you aren't ready to drop the dose that far yet - and you are right to go back up. But you do need to discuss it with your doctor.

[Devoid]

Hi I am just starting reducing pred, was diagnosed with LVV in July and reduced before for cat pet scan, then had to go back up to 40 for several weeks. 40 down to 35 didn’t seem too bad but down to 30 from Monday and feeling dreadful, weak and flu like but no signs of infection. Trying to ride it out, also on methotrexate 20 per week.not sure if it helps knowing someone else feels as rubbish, but I think it’s helped me a bit!! Trying so hard to keep positive but this week as flawed me

[Loll1pop3]

Having had a similar experience, but when on a lower dose, perhaps consider reducing your dose in smaller steps e.g. instead of reducing by 5 mg every 3 to 4 weeks, reduce by 2 or 2.5 mg! Good luck!

[Christophene]

Dropping steroid doses frequently causes a return in original symptoms, ie. relapse. You may need to return to the last dose at which you were reasonably comfortable. But you should check with your doctor.

[Freeman12]

Just to let you know I persevered with dropped dose and the symptoms have receded. Thank you for your replies.

[danerd1960]

If the symptoms are back as have happened to me, then you will need to let your doc know. I am currently going to start cytoxan as Rituxan did nothing for me. Every time I have tried to taper prednisone I get more ulcers .