wg,kidney involvement and steroids

[quinnster]

anyone been able to get off long term steroid use,when they have kidney involvement

been on the 7.5 mg dose for over a year now,but no sign of being weaned off it

[Jann]

It always difficult to comment on some else's condition. I have kidney involvement and have been reduced over the last two years since I started treatment from the very high doses to 5 mg daily. Although there are issues with Long term steroids I think my consultant is reluctant to reduce the doses and is registrars who I see sometimes would not change anything without his approval.

[Ayla Volunteer]

My consultant is similarly cautious. He has reduced my daily dose of pred over two years from 60mg to 7mg daily. I've been on this low dose for 8 months now but no sign of a further reduction as yet. I have MPA with kidney involvement.

I have noticed that some people receiving rituximab treatments are weaned off the steroids completely, over the course of a few months. Which immune suppressant are you taking, quinster?

[quinnster]

azathioprine 150 mg daily,and thanks for the answer,both you and jann

[JacquiM Volunteer]

Hi quinnster,

I was diagnosed WG/GPA with kidney involvement in March 2011 so understand your frustration with the steroids.

Similar to Ayla, I started on 60mg and am now down (since last month) to 4mg a day but it's taken two years to get to this point. So far there haven't been any problems for me - touch wood.

It does take a long while to get to a lower dose and I don't know if it depends on how stable your kidneys are? I'm still taking 150mg of Aza along with blood pressure and statin tablets.

Hang on in there, I'm sure your consultant will let you know when he/she feels it's time to reduce from the dreaded Prednisolone.

[quinnster]

thanks Jacqui,im very similar to you also on 3 blood pressure tablets

thanks and good luck

[JacquiM Volunteer in reply to quinnster]

Thanks for the good luck quinnster.

I think it comes down to a bit of patience needed from those of tus with this disease. We can't rush this even though we all want to get off the Pred and eventually be drug free.

If the medicationn I take is keeping me alive and is helping me to keep me going, I'm prepared to accept what I have to take, although I would much rather be drug free as we all would.

Once I'd got over the shock of having this nasty disease, and CKD as a result of it, I came to accept it. Following a worrying period of depression late last year I am now feeling a lot calmer and accepting about the disease and my long term health condition I now have thanks to WG/GPA.

Now I try putting all my energy (when I have it!!) into raising awareness of Vasculitis to anyone and everyone I meet anytime I can. More and better awareness may save a life and that is important I believe.

I always thing that there are lot of people worse off than I am and I'm truly thankful for that.

Good luck to you also and keep going, that is important. We are all survivors still here to tell our story - thankfully

[Albasain in reply to JacquiM]

Hi Jacqui,

I'm very much in your court of thinking! We are all in it together in having a rare disease. As such we are in the the van in tackling the "enemy within."

We must work closely together with all those that can help in tackling this disease. Intelligence is the key in defeating any enemy.

The more we know, the better we can overcome. Mentally and physically.

Equally, mutual support is paramount which is why such sites as this are useful.

Keep up the good work.

Dave

[Deedrah in reply to JacquiM]

I noticed that the last few comments about the meds you take were for blood pressure. Is this for low or high blood pressure? My mom is still in the hospital because she faints when she sits up. She is also still on oxygen. It has been 3 weeks with too many unknowns. She was diagnosed with wegeners about 3 months ago. Initially she was admitted to the hospital because of pneumonia. Any help would be appreciated. This is all so new to me. I feel very helpless.

[cedric]

I totely agree it as helped me a lot I felt alone until I came on this site thank you to every one I read all comments every day

[Holly12]

I hope this gives people hope. I was diagnosed in 2007. At my latest review I have been able to come off all medication. So from high doses of steroids, dialysis, plasma exchange, blood transfusion etc to nothing. Halleluia.

[quinnster]

holly ,that is amazing,im so happy for you,that is inspiring

[Wageners]

Yes i have, since being on rutiximab i dont take steroids just an antibiotic 3 times a week, along with pain meds, allergy meds ect, but steroid free.