Changing from Mycophenolate to Azathioprine?

[rif]

Would like your opinion on what my sons doctors are suggesting. He wants to discuss changing the present maintenance drug of Myco (cellcept) to Aza on his next appointment this thursday as apparently the Journal of the American Medical Association published article stating a European study has found that to quote

"Although mycophenenolate mofetil is frequently regarded as a potent alternative to azathioprine, we found no evidence to support its use as the initial remission maintenance therapy for patients with ANCA positive vasculitis"

Date of the above article was December 1st 2010 Vol 304, No. 21 so surely this trial information is out of date and consisted of doctors in 42 centres in 11 European countries with overall total of only 156 patients between them, 80 of which took aza and 76 myco.

My son was prescribed myco on his eventual release from long stay in hospital on initial diagnosis in early 2009 and has taken the soluble dosage of 5ml twice daily with no major problems. He had two infusions of Ritux shortly before leaving hospital with a single infusion six months later then no more until two years later when he had further one in Aug 2011 followed by second two weeks later in Sep 2011 when slight rise in blood tests detected although he had no outward symptoms.

Myco appears to be working for him so why change things? His Prednisolone dosage is down to 5mg once daily, this is also soluble as he cannot take solid tablets, so far not found evidence of soluble version of Aza. Also takes Adcal-D3 1500mg chewable twice daily. This drug regime has allowed him to return to work full time since end of 2009, he is only in his mid thirties and I personally am worried that if Aza causes problems he could be back to that terrible time in 2009 when his life hung in the balance for over four weeks!

Any thoughts would be really appreciated.

Rif

[drz]

How would he take the Azathioprine if he switched if he can't take tablets?

Is he in remission now? Remission is our goal. We want remission as quickly as possible with least amount of side effects and strain. Generally med changes are made when either one drug is NOT working or not working very well, or else to try maintain a person on some drug that is less toxic, e.g. going from CTX to azathioprine or MTX.

[rif]

Hi Drz

No idea how he would be able to take Aza, I know my son will certainly be bringing up that question on thursday.
He is treated under the Renal dept at hospital as they have authority to adminster the Ritux when necessary and took over his care whilst an inpatient. There are usually about four specialists in clinic and the one he saw last November may not necessarily be the same one on thursday but they all discuss treatment plans so whoever it is should be aware is this. HOPEFULLY........ Have also read that weekly blood tests are necessary in the beginning followed by fortnightly if all progressing, this is more time out of work for him as they are carried out at the hospital along with his regular eight week clinic appointments. Thank goodness his employers are understanding and hopefully will continue to be so.

Remission word has not officially been mentioned but he is stable and has been since last Ritux in Sep 2011 and no changed medication doses so Myco must be working. Unfortunately I think it could be a cost issue as our wonderful NHS here in Britian is struggling to cope with the increase in population by whatever reason who expect and get free NHS treatment. Can always hope that his blood tests taken just over a week ago show that he is unable to metabolise the AZA, however that is not always a sign that AZA can be absorbed properly.

Rif

[HopeinTN]

I too have wonderful employers that allow me to adjust my hours based on how I'm feeling. I hope he continues to have success and continue to work. It's not always easy to get to work but once I'm here it feels so rewarding. I'm convinced working makes me feel better overall.

Good luck!

[ArlaMo]

Just a couple of thoughts from my own experience and recent visits with Dr. Koening at the U of U. I had rtx infusions in April of 2011 and did well with them and achieved what my docs called "medical remission." In November of 2011, they tried putting me on azathioprine as a maintenance drug; however, my GI system did not tolerate it at all. So in January 2012, I was put on Cellcept.

I started flaring in September of 2012 while on the Cellcept - again, just my experience - I've read that a lot of people do fine with it. When I got in to see Dr. Koening in November, we talked quite a bit about Cellcept vs aza vs methotrexate. He indicated that all the recent studies coming out and the info had been presented at the Vasculitis conference were showing Cellcept to be inferior not only in the induction phase but also as a maintenance drug. So I do think that there is new study data, etc. out there.

However, your son seems to have some unique issues - different unique issues (my GI tract) are what led to me being on Cellcept. This disease is so tricky and requires such balance in choosing meds that help us the most without hurting us.

Good luck to your son - I hope he continues to feel well, whatever meds he ends up on.

[drz]

Hi Drz

No idea how he would be able to take Aza, I know my son will certainly be bringing up that question on thursday.
He is treated under the Renal dept at hospital as they have authority to adminster the Ritux when necessary and took over his care whilst an inpatient. There are usually about four specialists in clinic and the one he saw last November may not necessarily be the same one on thursday but they all discuss treatment plans so whoever it is should be aware is this. HOPEFULLY........ Have also read that weekly blood tests are necessary in the beginning followed by fortnightly if all progressing, this is more time out of work for him as they are carried out at the hospital along with his regular eight week clinic appointments. Thank goodness his employers are understanding and hopefully will continue to be so.

Remission word has not officially been mentioned but he is stable and has been since last Ritux in Sep 2011 and no changed medication doses so Myco must be working. Unfortunately I think it could be a cost issue as our wonderful NHS here in Britian is struggling to cope with the increase in population by whatever reason who expect and get free NHS treatment. Can always hope that his blood tests taken just over a week ago show that he is unable to metabolise the AZA, however that is not always a sign that AZA can be absorbed properly.

Rif

I think here both Azathioprine mtx, and cellcept are considered very low cost drugs compared to RTX and I would doubt there is much significant difference in cost among them. I think the drug prescribed needs to weigh effectiveness and risks of side effects and that varies by individual.

[rif]

Hi ArlaMo

Thanks for your input and hope you are doing well, are you still on Cellcept? What were the first signs that you could not tolerate Aza and did they do the tests to see if you could metabolise Aza fully? My son was tested just over a week ago and he will know results at tomorrows appointment but I read on hear that this test is not foolproof. I can see plenty of questions will want answers at appointment.

Rif

[rif]

Hi drz

Hopefully the doctors will be able to answer question of effectiveness and side effects tomorrow, thanks for you input.

Rif

[ArlaMo]

I did have the test before starting aza and that came back fine, but my GI system would not tolerate the med. Within 30-45 minutes of taking it, I had severe vomiting and diarrhea that lasted about 24 hours. We tried two other times with a lower dose and the same thing happened.

I am no longer on Cellcept - I had four rituxan infusions in December and Dr. Koening had me stop taking Cellcept just before my first infusion.

[rif]

Just back from sons regular appointment at hospital where he saw a different Consultant to the one who wants to change his Myco medication to Aza. They had a long friendly discussion and my son was told that they had found no real difference between the drugs to control WG so why change when everything is stable:smile1: This Consultant is also responsible for authorising Ritux infusions so was aware of drug changes linked to possible flares and what it involved. As my sons bloods are unchanged and he is generally feeling well with minimal side effects the decision was taken to leave everything alone and his next appointment is in April. Considering my sons history at original diagnosis in March 2009 and the long time spent in ICU then recovery he is doing extremely well and they are very happy.:thumbsup:

I shall now be able to sleep at night, I know my son is also much more relaxed and happy after todays appointment. Thank you all for your input is has been much appreciated.

Rif

[drz]

Just back from sons regular appointment at hospital where he saw a different Consultant to the one who wants to change his Myco medication to Aza. They had a long friendly discussion and my son was told that they had found no real difference between the drugs to control WG so why change when everything is stable:smile1: This Consultant is also responsible for authorising Ritux infusions so was aware of drug changes linked to possible flares and what it involved. As my sons bloods are unchanged and he is generally feeling well with minimal side effects the decision was taken to leave everything alone and his next appointment is in April. Considering my sons history at original diagnosis in March 2009 and the long time spent in ICU then recovery he is doing extremely well and they are very happy.:thumbsup:

I shall now be able to sleep at night, I know my son is also much more relaxed and happy after todays appointment. Thank you all for your input is has been much appreciated.

Rif

Makes sense to me. Sounds like a good plan! His history and doctors statements sounds very similar to mine.

[rif]

Hi drz, yes definately a good plan and nice to find a doctor who is prepared to listen to the patient

Rif