Tapering prednisone with GPA after truxima infusions.

[GinnyMa]

I was diagnosed with GPA about three months ago, underwent a kidney biopsy and started treatment. Underwent four infusions of truxima and now tapering prednisone quickly. I feel like I am experience withdrawal symptoms…headaches, fatigue, dizziness. Is it normal to suffer withdrawal?

[Investigator1]

Hi GinnyMa I was tapered quite quickly, my level was halved every 2 weeks, I didn’t have headaches but I did suffer tiredness and fatigue and a few body aches because my adrenal gland was lazy. Been off them now for 10 months and I still think the gland isn’t quite right to be honest but not as bad as it was. Nick.

[PMRpro]

It depends on the dose, the rate of tapering (size of the steps) and the person and, above all, how long you had been on the pred.

But yes - feeling it is very common especially if you are changing the dose frequently because each time you change the dose, your body must adjust which can take several days so it feels as if it never stops.

[GinnyMa in reply to PMRpro]

Seven years ago I had GCA and knew that if I reduced too quickly my symptoms returned. Now with GPA the Truxima infusions took down my immune system and was being held up by prednisone. So now I have to quickly get off the prednisone. And then I guess my immune system can start over. But it is fast and I have withdrawal symptoms. ( reduce every two weeks…25, 20, 15, 12.5, 10, 7.5, 5 ) My doctor scheduled me for Evusheld, which I have had, and he told be to get the 4th booster. He seems to be following guidelines from

healthunlocked.com/redirect...

[PMRpro in reply to GinnyMa]

It isn't surprising you are noticing it - but it should improve fairly quickly once you stop tapering. The journey is hard though. What do you find worst? Just feeling rubbish?

[GinnyMa in reply to PMRpro]

Let me see…dizziness, fatigue, poor sleep still, headaches, foot cramps waking me up, increase in urine production……so yes…just plain rubbish does describe it.

My wise daughter tells me to just flow with it.

[PMRpro in reply to GinnyMa]

All very well for her!!!!!

Try magnesium supplements for the cramps - that may well help. Have you tried just plain old paracetamol? Lots of people on the PMRGCAuk forum find it does make the withdrawal stuff more tolerable.

[eh66]

I don't recall an withdrawal symptoms but I was pretty glad to be off prednisone. I found it raised my appetite so I was just eating crap continuously and it also affected my ability to sleep.

[Mooka]

If you withdraw quickly you will usually experience some withdrawal feelings. If it gets too much for you get in touch with your team or GP and ask to taper slower.

[GinnyMa in reply to Mooka]

I think my rheumatologist is following the guidelines of the Vasculitis Foundation

vasculitisfoundation.org/mc...

He has me on a quick taper….25, 20, 15, 10, each for two weeks!

[Mooka]

Sadly the docs that advise us have probably never tapered themselves! The last time I came of pred my consultant left me to my own devices, I reduced when I felt my body was used to the last reduction. For the first week I would take my old dose one day and the new dose the next day. However, I appreciate you may not have enough tablets for that.

[Vqueen]

Hi, sorry to hear you're having a hard time with pred. I too have GPA diagnosed a year and half ago. Had the high dose pred was on 60mg at 1st, had rituximab 2 doses then put on azathioprine while still on pred. Azathioprine not kept my immune system were it needs to be and struggle to get below 5mg on pred. Due to start rituximab again and still on pred. Everyone is different but I think fatigue and exhaustion are the most common symptoms when tapering down the dose. My consultant says it's a very hard balancing act. If your symptoms become unmanageable speak with your Dr I'm sure they'll try their best to help. Take care XX

[GinnyMa in reply to Vqueen]

Thank you for sharing your story. This disease is rare, my rheumatologist tells me. So it helps to hear from a fellow GPA

[Vqueen in reply to GinnyMa]

It is rare, so rare that it's very intimidating 😔 I'm lucky my consultant is really clued up about vasculitis so I do feel reassured that I'm good hands.It's nice to have this group to chat to as I think sometimes unless you're going through this its hard to understand what it's like. XX

[Angels54]

Are you reducing them slowly as it can be a shock yo your body ?

[GinnyMa in reply to Angels54]

Not slowly, but very quickly to bring immune system completely down. I have GPA. So I am having withdrawal symptoms until afternoon when half life of prednisone seems to help with symptoms.