Azathioprine, the necessary evil

[Pierre42]

The eternal balancing act between dying of an incurable disease and treatments which have side-effects has taken a turn for the worse recently. :angry:

Apparently that "slightly lower than ideal white blood cell count" I've been having this year was an manifestation of The (necessary) Evil That Is Azathioprine.

It started with a bicycle ride (surprisingly enough) the other day which ended with severe and sharp pain in my right knee.

A swift visit to my GP secured a referral for an MRI.

Suspected meniscus tear, common enough for serious cyclists (not that I am, serious that is). But hey, we'll have a look-see and find something, won't we....(careful what you wish for)

Then the radiologist calls my GP and says "perhaps the patient has Bone Marrow Cancer" (dunh dunh dunh DAAAAAH).:scared: {oh looky! apparently also high blood pressure :wink1:}

To which my GP replied ... "Or it could just be 'a typical side effect of Azathioprine'. I forgot to mention that incurable life threatening condition he's been under treatment for these past several years."

Of course "typical" in this case does not in any way negate connotations of "potentially life threatening". :blink::ohmy::crying::mad1: (where's the icon for "insert several loud expletives here"?)

[drz]

Sorry to hear about the news. Hope further evals don't reveal any dire news.

Unfortunately our treatment for Wegs does increase our risk of getting several forms of cancer but we hope the years in between will be good years if this unfortunate event does happen. An increased risk doesn't mean it will happen and most times it won't. But bad things like Wegs, infections that can be fatal, and things like cancer can and do happen and then we have to deal with them as best we can. Hoping you don't get any real bad news and that things turn out OK and the knee heals quickly.

[woz]

Hi Pierre, That life saving drug Azathiaprine does some strange things, or maybe its the wegs, WHO KNOWS . I have random aches and nerve pain, in different parts of my body, had trouble with my eyes for 3 months or so, now they are good. I had trouble with my feet for 8 months, sharp pain in my big toes, pain in my left foot that made it difficult to walk, now my feet are great, but I now have pain in both my elbows, whats next on the list, I will have to wait and see!!!!!!!! All the best.

Life is like a box of chocolates....... you never know what you are going to get......

Regards Warren.

[annekat]

Hi Pierre, That life saving drug Azathiaprine does some strange things, or maybe its the wegs, WHO KNOWS . I have random aches and nerve pain, in different parts of my body, had trouble with my eyes for 3 months or so, now they are good. I had trouble with my feet for 8 months, sharp pain in my big toes, pain in my left foot that made it difficult to walk, now my feet are great, but I now have pain in both my elbows, whats next on the list, I will have to wait and see!!!!!!!! All the best.

Life is like a box of chocolates....... you never know what you are going to get......

Regards Warren. I get all those things and I'm on mexthotrexate, along with pred. My feet are the most annoying, in some ways. They will be fine sometimes, but then will suddenly have sharp pains and cramps. Still some neuropathy in them, too, mostly noticeable at night when I'm trying to fall asleep, and the cramps will be worst then, too. I think it's the Wegs, but like you say, WHO KNOWS?

[renidrag]

Hey Pierre, hope things work out for you. I also have neuropathy in my feet and continue to have sharp pains any time during the day, walking is not fun for me however I still try to walk one mile, three times a week. I have started taking 250mg of Magnesium daily and a lot of the cramping has disappeared. OK to take with Warfarin.
Dale

[annekat]

Hey Pierre, hope things work out for you. I also have neuropathy in my feet and continue to have sharp pains any time during the day, walking is not fun for me however I still try to walk one mile, three times a week. I have started taking 250mg of Magnesium daily and a lot of the cramping has disappeared. OK to take with Warfarin.
Dale I take a calcium/magnesium supplement and thought I'd heard of the Mg being helpful... so glad to hear that confirmed. My cramping is sporadic and maybe would be worse without it.

[Debbie C]

Pierre,sorrry you had to go through that,being told that you may have bone marrow cancer. Maybe someone should tell the radiologist that stress isn't good for this life-threating disease!!!!

So are you on med for high blood pressure now ? Can they give you something else besides aza? Hope you feel better soon :) and stop those late nite bike rides for awhile !!!

[LisaT]

I'm on azathioprine too and didn't even realize that it increases the risk of cancer. Sometimes I think docs don't mention these things for fear of scaring us, as if we're not already terrified! I would like complete information on which to make informed decisions, not a paternalistic filtering of details on a need-to-know basis. Sorry, that was a bit of a hijack. Just surprised to learn this. Clearly, I still have a lot more to learn.

i hope and pray for you that you're experiencing non-cancerous, non-degenerative aches and pains of a Weggie's wonky immune system. Please let us know.

[Pierre42]

erm, just to be clear - I am not suggesting that azathioprine causes cancer ....

- one of the less likely but well known side-effects of Azathioprine is an impact/degrading of your bone marrow (with subsequent lower White Blood Cell Count)
- radiologist reading your MRI who doesn't know you are on Azathioprine might see this impact to your bone marrow and think it is Bone Marrow Cancer (cue spooky music)

+ Bonus! (another reason to lower my Azathioprine dose)
- Bugger! (at some point lower dose will equal too low and I will get to "enjoy" another flare: crossed fingers that's a looooooooooooooooooooong way off)

[Debbie C]

Fingers crossed :smile1:

That is a scary thought about radiologist reading your scans,they don't know all the info going on with you. That's why I try to get the dr. to look at the disc and hear it from them.I go for a lung ct next week,keeping my fingers crossed on that too

[greenjeep]

I don't know if you have heard a verdict yet for cancer vs torn meniscus (praying for meniscus) but I am an MRI tech and we hear MANY stories and scenarios leading up to injuries.
Those with cancer, ms, on and on (I've never scanned anyone with wegs) always suspect the disease while those without a serious illness just know they hurt their knee.
I don't know what I'm trying to say exactly, except even though we have wegs, we still have excellent chances for the wear and tear that everyone has. Knee injuries are very common. They keep us in business. Go with the horse and not the zebra until otherwise warranted.
If you can do this, let me know how you did it, because I blame everything on wegs and it tears me up inside.


Sent from my iPhone while driving on the freeway, eating salt, and drinking a 78oz soda.

[greenjeep]

Also, drs are not very good at reading radiology stuff for the most part. The tech should ask you what you did to hurt you self or what your symptoms are. You should tell the tech that you have wegs and rake chemo. Then say your knee hurt after riding a bike and your dr would like to know if it is wegs related or a simple injury. If they are a halfway decent tech, they will relate what you say to the radiologist.


Sent from my iPhone while driving on the freeway, eating salt, and drinking a 78oz soda.

[Debbie C]

Thx greenjeep for the info. I have to go get my ct scan of my lungs Thurs. I am so scared cuz my chest hurts so bad when I breathe,I think its from over doing yoga and at the gym. But I will make sure I tell them. I don' even want to get my bloodwork done next week since my #'s were high last time.:sad:

Sorry I hyjacked your thread Pierre and greenjeep don't text and drive and drink and eat or you will end up in the hosp.

[greenjeep]

Godspeed Debra. Hope all turns out for the best. Also, I can't help it - I'm a rebel.


Sent from my iPhone while driving on the freeway, eating salt, and drinking a 78oz soda.

[annekat]

Thx greenjeep for the info. I have to go get my ct scan of my lungs Thurs. I am so scared cuz my chest hurts so bad when I breathe,I think its from over doing yoga and at the gym. But I will make sure I tell them. I don' even want to get my bloodwork done next week since my #'s were high last time.:sad:

Sorry I hyjacked your thread Pierre and greenjeep don't text and drive and drink and eat or you will end up in the hosp. i'm glad you are getting the CT scan. That's what was happening with me right before I was dx'ed, and got a CT scan. But it wasn't just breathing issues, it was all kinds of coughing, night sweats, fatigue, fevers, coughing up blood, headaches, red eyes, the whole nine yards. I hope the results are OK. Will be thinking of you and praying it goes well. :hug1:

[LisaT]

Thanks for clarifying! I hope you got reassuring results. I would love to decrease or get off the aza either way... Not sure what my throat and Jose would do without it though. Seems most people need to stay on something, I'm just not sure because still don't know whether my ribs were actually WG in the first place. Something to bring up at my next rheum. Appt. And another hijack! Sorry.

[Pierre42]

Coughing up blood is never a good sign.

When it happened to me (all those years ago) that explained why I'd basically felt like I had been slowly drowning for the last several weeks (I was, drowning in my own blood).

When I was woken from the ensuing medically induced coma (two weeks later) I learned a new word - "Plasmapheresis".

[Wegetarian]

erm, just to be clear - I am not suggesting that azathioprine causes cancer ....

Really? i thought it certainly increased ones risks for getting cancer. If I understood correctly it may also cause some spinal poisoning if you don't have the genes working that break down the drug. That's usually screened for with the TMTP (or soemthing) gene test.

I'm currently on Aza, in my country they don't screen for the genes with the test, but I managed to get myself tested though and was fine. I guess they just follow the blood tests very carefully in the beginning to spot for anomalies.