vivdunstanAdministrator

Plasma exchange can be used in refractory/difficult cases of vasculitis. We're keeping it in reserve for my case of cerebral vasculitis, though the consultant is trying all sorts of other things first.

So it might well have been beneficial for you.

How are you doing now?

John_MillsAdministrator

There are 2 slightly different procedures, plasmapheresis and plasma exchange, but in either case, the aim is to remove the offending ANCA from the bloodstream. It is really a procedure to "buy time" by arresting the rapidly progressing vasculitis, such as when there is a sudden deterioration in kidney function. It does not stop the disease in itself but allows time for the drugs to suppress the production of more ANCA. It can be kidney-saving or even life saving, but it does have serious risks, so is not used except in emergency.

Sadly, in some cases, such as where there is also lung haemorrage, it can make an emergency situation worse as the process involves the use of anticoagulants to prevent clots developing in the apparatus.

If the kidneys are "rescued" in time they can make a complete or partial recovery, which is why it is essential the kidney function should be very carefully monitored, particularly in the early stages of treatment.

It is very odd that the disease should have flared after only 2 months, when you were, presumably, still very much in the active induction stage of treatment, with high doses of pred and cyclo. Or had you been put on a maintenance drug by then? If so which one?

shanat19 in reply to John_Mills

The point you make about the disease flaring whilst being treated aggressively has also been made by doctors. At the time I was still having three-weekly intravenous infusions of cyclophosphamide [although this was changed to a daily oral administration on readmission to hospital] and 60 mg. per day prednisolone.

And perhaps I give a false impression of how I was after the plasma exchange. Forgive me, but it was 10 years ago, and the more I think about it the more it comes back to me. I recall that after I came out of hospital [Sept. '02], the cyclophosphamide was increased to the point that I was bed-bound, had lost my hair and couldn't keep anything down. It reached the point where I couldn't even keep the medication down, at which point the dosage was reduced and within a few days felt a lot better. By Nov. '02 I was ANCA negative.

Today, the only medication I am on are for blood pressure, cholesterol, alendronic acid [fosomax] which for some reason they seem reluctant to stop, and pregabalin which has been shown to reduce neuralgic pain. Indeed, the biggest problems I face on a day-to-day basis are the result of the aftermath of the stroke which, although I believe saved my life at the time since it got me quickly into hospital, has left me somewhat less than the person I was.

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joeod in reply to John_Mills

Hi When first diagnosed I had renal failure which responded to usual drug treatment and I was discharged on meds after 2 weeks.About 2 weeks later I was re admitted with major bleeding from lungs as well as ongoing kidney problem.I then had emergency Plasma Phereses (9 sessions).Effectively the disease had got ahead of the drugs and the plasma phereses did ,as John and Susan suggest , buy time to allow the drug treatment gain control.I believe the treatment saved me.

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Skipper

I was diagnosed wiith WG in January 2007 and rushed to hospital with kidney failure where I was given a week of plasma exchange. I am convinced this saved my life.along with all the usual meds. Luckily I did not need dialysis but I was pretty close. I am now down to 3mg pred and 75mg azathioprineand feeling well in myself. I think my kidneys are now about 45%. Hope this helps. Keep well

mandijt

My WG suddenly invaded my lungs causing pulmonary hemmorraghe and i was given clycphosphomide and plasmpherisis and methylpred and put on life support for 10 days. This saved my life! Prior to this i had 1 nodule in my lung which had never bothered me, caused me any concern and my consultants wernt even worried about it! This disease is sneaky and

needs to be treat aggresively and you cant let your guard down! I always thought i was one of the lucky ones and that compared to some of the awful stories i had read about - i was having an easy ride. Well my out look has certainly changed, along with new consultants and a new cocktail of drugs.

I wish you all well.