cyclosporine maintanence for PRCA?

[Laurie S.]

We got good news today...my husband's Hgb is up to 8.1, retics at 1%, and no transfusion this week. His dosage is 100 mg twice a day at least until his Hgb is closer to normal range, and then he'll start a slow taper. My question is if anyone with PRCA stays on cyclosporine indefinitely, or is there always a taper?
Thanks,

[triumphe64]

I always needed a little prednisone to make the cyclosporine work. It is a balancing act - an art, not a science. I ended up only needing 2.5 mg every other day of the prednisone.

I have only been able to get off of both of those after about four years once they included Danazol in the mix. Now, I only use the Danazol. I could see improvement very slowly after about nine months. Once my Hg got to 11 they started to reduce the dose of cyclo. Nothing with these conditions seems to work quickly.

[Laurie S.]

He responded so quickly (4 weeks) the first time on cyclo, we're still getting used to this slower response being more of the norm. But I was surprised that his doc is planning to taper completely at some point, I don't know why I assume he'll need ongoing med support, and I'd love to see research data either way... does it exist?

[triumphe64]

Originally Posted by Laurie S.

He responded so quickly (4 weeks) the first time on cyclo, we're still getting used to this slower response being more of the norm. But I was surprised that his doc is planning to taper completely at some point, I don't know why I assume he'll need ongoing med support, and I'd love to see research data either way... does it exist?

I doubt it for PRCA. There is hardly anything.

There has been discussion on these boards relating to AA as to whether a taper should be slow or fast after ATG. I don't know if anything was decided, but I would vote for slow.

That is why I go to Dr. M. He has the most patients with PRCA. But I guess your guy has more with PRCA/CLL. Rare diseases are hard to study.

[clearwaterman007]

Originally Posted by triumphe64

I always needed a little prednisone to make the cyclosporine work. It is a balancing act - an art, not a science. I ended up only needing 2.5 mg every other day of the prednisone.

I have only been able to get off of both of those after about four years once they included Danazol in the mix. Now, I only use the Danazol. I could see improvement very slowly after about nine months. Once my Hg got to 11 they started to reduce the dose of cyclo. Nothing with these conditions seems to work quickly.

I just joined today after finding your links on the web. My husband was admitted to our local VA hospital July 2013 with hemoglobin of 5.0. They did countless tests and tranfusions. They finally discovered PRCA and a large thymoma (tumor of the thymus gland). It was removed, but the PRCA continued. They had no previous experience with this issue. He has been seen by the oncology dept since then. He started out on Prednizone. It didn't work at all and he needed biweekly transfusions. They phased him off that and started 400mg cyclosporine. Within about a month it started to work, but has been very toxic. It has now been lowered to 200mg/day. He has had endless mouth ulcers, hypertension, and an overall fatigue since then. He had 2 major crashes- one last fall and one last week. We started doing some serious investigating and after combing his med records, found that the crashes have followed on the heels of his flu vaccines. We also discovered that the initial decline in his hemoglobin started in 2009 after he got a flu shot that gave him the MUMPS! it is our therory that this is what caused the PRCA and thymoma. As you know, there is little research out there, and we found nothing on the web that links flu shots to mumps in adults or children. There is, however, plenty of references that mumps can lead to PRCA. We are wondering if there is anyone else out there with a similar situation.

[Chirley]

Interesting. My brother got Lupus after he had Mumps. He was initially diagnosed with ITP. He was given a Sulfa drug with the Mumps because he had a chest infection as well.

[triumphe64]

Yes, mumps and thymoma can cause PRCA. Pathologists don't look for the rare PRCA. That is why it takes so long to find it.

Are you allowed to go outside the VA system or out of state? Are the VA doctors allowed to call outside experts? I assume you are in Florida.

[clearwaterman007]

Yes our doc can call other docs outside the system. We live in NC now.

[triumphe64]

Originally Posted by clearwaterman007

Yes our doc can call other docs outside the system. We live in NC now.

This is the guy I go to twice a year. He is a researcher and has the most PRCA patients.

http://my.clevelandclinic.org/staff_...?doctorid=4362

He will be very happy to talk to your doctors. Call the "Desk"

Let me know how this works out. There is a woman on Facebook here in Dallas who goes to the VA. We only exchanged messages. But it sounded like she needed some help.

[clearwaterman007]

Thanks for the resource. We will pass it on to our doc.

[triumphe64]

Check out www.aamds.org

They are the group that supports PRCA.