Azathioprine - Mycophenolate mofetil

[Angela]

Hi. Angela from Australia here. Was diagnosed with Wegeners Gpa (severe)4 years ago or so. Had cyclophosamide infusions for first 6 mths or so alongwith usual high dose prednisone. Since that initial time have been on Azathioprine 200 mg and varying lower doses alongwith off and on pred.

Doctors now realise the Azathioprine hasn't been working. Anca has been going up gradually. And have now prescribed mycophenolate mofetil 1000 mg daily which I start on Monday. They have also said I may go on Rituximab in future.

Looked up some info on the myco mof and its side effects - aren't very attractive at all. Has anybody had experience being on this and did it help? And did you experience side effects? - serious ones?

Not looking forward to going on this medication.
Already have low white cell count and shot liver enzymes , low globulin, stomach problems, gerd, thinning hair from wegeners treatment

Kind regards and thanks for any info on the mycophenolate mofetil :smile1:

angela

[Alysia]

Hi Angela,

I was never on the Mycophenolate.

Actually most of our meds have scary list of side effects.

But I suggest you to ask for rituximab, for 2 reasons:

1. Less side effects for most of us.

2. It works much better, it is stronger then Aza or Mycophenolate.

Good luck and please update us.

[Angela]

Thanks Alysia for replying. Very much appreciated.
And yes, it seems that our medication options all have many unwanted
nasty side effects. I wish I could go off all medication and have a break
but I guess that's not very advisable.
My doctor has suggested Rituximab next. But first wants to try
the mycophenolate.
Will start taking it on Monday as prescribed I guess. Hopefully its only
short term and I fare ok on it.
Thanks once again, Alysia for taking the time to reply.

Angela

[gilders]

Hi Angela,
I was started on Cyclophosphamide and prednisolone, but couldn't tolerate Cyclo. I was moved on to pred and Azathioprine and this worked well for many years.
But after my last relapse/flare Azathioprine was holding my flare back, but I couldn't achieve remission. I was then started on Rituximab.

But I do now have experience of Mycophenolate Mofetil as I am on this medication since I had my kidney transplant. My side effects to this drug was very loose stools. To combat this make sure that you take with food. The other recommendation would be to split your dose throughout the day (I take 500mg 3 times/day). It still took about 6 weeks for my body to get used to this drug. My stools are still soft, but for most days they don't cause any concern.

As a last resort, I was told that Mycophenolate Mofetil could be changed for Mycophenolate Sodium (Myfortic) as the gastrointestinal symptoms are much better. The only reason this was not offered earlier on and the transplant nurses wanted to see if I could get used to the drug (which I have) was purely down to cost (I am an NHS patient so the cheapest, yet still effective, option will be chosen).

[Angela]

Hi gilders,

Thanks so much for your reply and relaying your experience with this medication.
I start on it tomorrow morning - only 1000 mg per day though taken twice a day.
Will look out for the loose stools. Also the stomach problems that seem to plague me
from my treatment.

I did note some of the horrendous common side effects listed for this particular medicine
I guess it's good to be aware, but also a bit daunting.

Probably, I am in a similar situation over here with costs etc, hence staying on the azathioprine for 4 yrs

All the best to you for your journey through this maze,

Angela

[Donnak06]

Hi Angela

I have been taking Mycophenolate for 5 years now with virtually no side effects. I started on one tablet a day for two weeks, then it was upped to two tablets a day for two weeks and I have been on three tablets a day ever since. I did have stomach pains and felt very tired every time they upped the tablets for about one week. I now have no side effects from them. I am also taking 5mg of steriods a day.

Hope they work for you.

[Angela]

Thanks Donnak

i have started on two tablets per day. (1000 mg)
So far have had a bit of Gerd and chest pain this morning for about two hours.
Sometimes with Wegeners, you wonder if its the disease or the meds causing
problems. But at the moment, I think its the myco.

I am glad they have worked for you. I hope they do for me too, despite the side effects especially
seeing the Aza didn't work.

Thanks for replying and all the best to you.

Angela.

[bdawg212]

I was on myco (CellCept) for about six months for Wegeners a few years ago. Had no positive effect on my inflammation and made me straight up MEAN. I asked my rheumy to take me off of it because the mood swings were absolutely terrible.

Good luck!!

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[Angela]

Thanks for your reply bdawg
will look out for the mood swings.
Had an interim blood test this week but won't know the results until I see the doctors in couple weeks
so far have had some bits and pieces (lol) chesty cough /sore chest but that could have been from a chill,
touch of dizziness, general cough, aches and pains (is it Wg, the myco or Getting older) tiny red dots which I think are called petechae or something - not a lot but, bit of blood in nose and touch of crusting.
What I think I have learned from reading others experiences with treatment, is that sometimes we get ummmm resistant
to the particular medication after a while and it doesn't then keep things at bay. And then our doctors try out an alternative to see if that works/helps which I guess is what is happening with my treatment at the moment. They did suggest rituximab next maybe. What I wonder is what happens if we become resistant to all these........
- probably best to not think like that and be positive instead.
Seems though its a hard road cause I have also read that everybody with Wg can be different. Hard for the doctors to work out best treatment.

Anyway see what my doctors say in a couple of weeks. I wish Wg medication was not so toxic but.
Thanks everybody for your input on this. It helps to compare and see what others are experiencing with their treatment too. It is very much appreciated.

Thanks

Angela.

[bdawg212]

I have major nose crusting. There's actually a hole through my septum now. An ENT prescribed a sesame oil concoction made at the Mayo Clinic and shipped to me that really has helped the crusting, and the hole hasn't gotten bigger thank goodness. I just always try to tell myself, it could be worse. I could have lung and kidney involvement again.

Rituxan didn't work for me, neither did CellCept or methotrexate, and after my pregnancy, neither did azathioprine. The only thing they could use for months to control my high sed and CRP was Prednisone. So I can actually tell you what happens when they run out of immunosuppressants...they try DMARDs. Right now I'm on Plaquenil and somehow, SOMEHOW, it seems to be working. Fingers crossed it continues as I come off the prednisone.

I will send good vibes that CellCept works for you!!! <3

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[Angela]

Hi everyone.

Update - Seem to be getting a lot of heartburn constantly from the mycophenolate. Eating and even drinking water brings it on. Read on info that came with medication, not to maybe take antacids I think I will get my dr to verify this so to see if I can get relief from the heartburn/reflux/gord.
Also Have very chesty cough. No cold or flu symptoms but, so thinking its related to the meds also. Unless Wg is smouldering.

Not a total fan of this stuff so far. i See my dr in about a week. I guess more time may be needed to see if it's helping or not.

Anyway fun and games.

Thanks again,
Angela.

[bdawg212]

I get terrible GERD from the meds. My rheumy prescribed Prevacid. Works great. Hope you get better soon!!

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[seied]

Hi Angela,

Have you/can you take Nexium?
Nexium is recommended when taking high doses of prednisone.
I take it in the morning of the day I take methrotrexate.

Ed.

[Angela]

Have Somac which I guess is similar.
Seeing Dr tomorrow. See what happens. Guessing He will leave me stay on the Myco for a while :(

Angela.

[Alysia]

I have major nose crusting. There's actually a hole through my septum now. An ENT prescribed a sesame oil concoction made at the Mayo Clinic and shipped to me that really has helped the crusting, and the hole hasn't gotten bigger thank goodness. I just always try to tell myself, it could be worse. I could have lung and kidney involvement again.

Rituxan didn't work for me, neither did CellCept or methotrexate, and after my pregnancy, neither did azathioprine. The only thing they could use for months to control my high sed and CRP was Prednisone. So I can actually tell you what happens when they run out of immunosuppressants...they try DMARDs. Right now I'm on Plaquenil and somehow, SOMEHOW, it seems to be working. Fingers crossed it continues as I come off the prednisone.

I will send good vibes that CellCept works for you!!! <3

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I tag freakyschizogirl who also started Plaquenil.
Btw, there is another wg med that you didn't try yet - it is called Arava. Ask your dr.

[bdawg212]

I actually was on Leflunomide for less than a month. Had a bad reaction to it and had to come off. :( Sorry, forgot to mention that. I was so wary to start it because of the staying in your system for two years thing, but it was the last one to try apparently.

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[Angela]

Thanks everybody for your advice and input. :) Very much appreciated. :) :) It is good to compare treatments available and outcomes/side effects.

Saw my Dr. (Renal) They are leaving me on the Myco to give it more time to see if it helps. I said I felt worse since on it but they want to continue for now. Said about my chesty cough. Questioned whether I have the flu or cold. No I said no flu or cold symptoms at all. They said a lot of flu virus around (winter in Aus). But I know its not that. But oh well. Will continue taking the Myco and see them again in another 4 weeks. I asked about Rituximab but I don't think that will be offered any time soon.

Will see how I go on the Myco.

Have a great day and keep on smiling . :).

Angela

[Angela]

Further update :smile1:

Went along to see my drs again at Renal Clinic. On the Myco now for a couple of months and My Anca is still rising.
Also white cell count is a bit too low. They are leaving things as is for now until next visit but mentioned
stimulating bone marrow injection to try to boost wbc count.
Apparently considering increasing dosage of the Myco but of course then that could decrease more my wbc count. A vicious circle.
I have to keep in mind that there are worse things out there affecting other people which helps me get over feeling a little
down about this journey.

So I will take time to smell the roses, my roses, and enjoy the little things in life that are great and we shouldn't take for granted.

Take care all,

Angela.

[Alysia]

Further update :smile1:

Went along to see my drs again at Renal Clinic. On the Myco now for a couple of months and My Anca is still rising.
Also white cell count is a bit too low. They are leaving things as is for now until next visit but mentioned
stimulating bone marrow injection to try to boost wbc count.
Apparently considering increasing dosage of the Myco but of course then that could decrease more my wbc count. A vicious circle.
I have to keep in mind that there are worse things out there affecting other people which helps me get over feeling a little
down about this journey.

So I will take time to smell the roses, my roses, and enjoy the little things in life that are great and we shouldn't take for granted.

Take care all,

Angela.

If it seems that cellcept is not stopping the wg activity, I would ask to switch to rtx.

[Mattieus]

This is interesting news, as I am have been on Rtx since the hospital (2 years ago in November). By that I mean I have had my doses every 6 months, starting at 2 units, now up to 4. I was on methotrexate as maintenance which didn't work that well, then we went to arava (leflunomide) which I have been on for over a year. Yesterday I saw my rhuemy and he said our next option given my continued sinus issues, persistent hip pain, and marginal improvements since my infusions in July/August, was to go with Imuran (azathioprine). We did a blood test to confirm that I am able to metabolize it, and we will see what that says. At this point I don't know what to think. I know Imuran can make you feel like crap, especially after your initial load dose. On top of that the continued blood tests just frustrate me. I can only imagine what it must be like for you having gone through all of this. I had a very severe case of Wegners, and its frustrating that it is so hard to control after such a short period of time.

I hope that your myco treatments have helped. Cheers!