New to Meds....Whats My Options?

[starsparkle]

Hello!

Looking to get some advice from some of you knowledgable folks!

I was diagnosed with Crohns 3 years (with a big flare the year before that & symptoms for approx 3 to 4 years prior aswell). Since diagnosis, I seem to have coped fairly well without any meds or any serious problems.

That is until the last 6 months or so when I started to get symptoms of a flare on & off and high inflammatory markers in test results.

I have been feeling a million times better in the last maybe 8 weeks or so, still the odd bout of bloating/gas....but certainly no significant pain.

However, at my last appointment with my GI (about 5 weeks ago now), he advised that even though I was feeling well, the inflammation in my stool sample indicated that perhaps there was more going on under the surface - and suggested that I should maybe be starting to think about meds to keep me in remission - specifically Azathioprine. However, he felt that since I hadn't any imaging done in 3 years (which previously showed strictures in my ileum) that he would send me for an MRI before deciding anything. He gave me away some info on the meds to look over.

I went for my MRI small bowel study and have now had a call from his secretary requesting that I go in next week to discuss getting started on Azathioprine and I am absolutely freaking out about all the possible side effects, effects on liver etc.

I wondered, is there a particular reason I would be started on Aza without trying Mesalamine/Asacol first (which seems to be to have less serious side effects)? Whats the difference between the drugs in terms of what they actually work to do? Is one more effective than the other for certain things? Should I be asking me GI if this is a possible alternative for me?

Thanks in advance!

Laura xx

 

[Artisan105]

Hey Laura,

Azathioprine is another term used for Imuran. It is an immune-suppressant drug. It is normally given through needle injection or IV. If you have Crohn's or IBD, they give you this if the GI doctors feel like there is a need for a potent medication to control the inflammation.

Pentasa/Asacol are meds that help with daily inflammation. Basically to control/maintain/back up the Aza. I think the doctor will give you this depending on where your inflammation is. I am taking Asacol daily and taking Remicade(another immune-suppressant drug) every 2 months.

Everyone is different so the doctors try different medication.

Hang in there. Make sure to ask the doctors every question you have. It is ok to ask.

 

[Jim (POPS)]

I have been taking ASA for about 3 months now in pill form. If your GI fells you should take the ASA I would take them. You could end uplike I did and need a resection. (I've had 3 of them in less than a year.) In regards to the side effects, Life is al about what we chose to do, we could get killed in a car everytime we get in one but we haven't yet. The chance s of a bad side effect is very low and the GI will be doing blood work every month to see if you are handling the meds ok. After 3 months on ASA I think that I might be going into remission, in your case you want to stay in remission.

Pentasa and the other drugs you talked about do not control crohns as well at all.

I hope you find peace in what you do.

Jim (pops)

 

[starsparkle]

Thanks guys!

Yeah I was sure what the other meds were even used for so thanks for the advice. I will see what they say at my appointment on Weds - as you say, I dont want to end up needing a resection any time soon because I didnt follow their advice - just because I feel ok doesnt mean damage isnt being caused on the inside I guess

xx

 

[alex_chris]

There are basically 5 groups of drugs right now that are used to treat Crohn's

Cortisone drugs (e.g. Prednisone / Entocort etc.) - they are used to treat the immediate effect of a flare up, that is get the inflammation under control short-term. Long term usage of cortisone drugs (regularly when there are flares) can have serious consequences which means long-term Crohn's management is important. In 14 years of having Crohn's I have used cortisone drugs 5 times and never longer than a month.

Pentasa/mesalazine: it's the oldest form of treating Crohn and definitely the least effective. It works for some patients, but the majority of patients cannot sustain remission with it. Some patients even have an increased chance of flare-ups with it (according to a newer study I read). Personally, today, I would only use it as a supplement to any other treatment, if at all.

Immunosuppressives (azathioprine, 6-mercaptopurine): long-term treatment of Crohn's that has been the standard treatment from the 90s to early 2000s for all Crohn's patients and has continued to be the treatment of choice for all non-severe cases until recently. Side effects can include things like liver damage etc. - that is why you do a blood test every 8 weeks (which is good anyway, as you can see inflammation indicators and generally get an overview over your status)

Biologics (remicade, humira): TNF-a blocker, which definitely have a higher chance of more severe side effects than immunosuppresives. Until a few years ago, they were only used for severe cases. They definitely work better than immunosuppressives to get you into long-term remission. Recently, at lest int he US, more doctors have had moderate Crohn's cases getting on biologics. Personally, I'd say avoid biologics as long as you can get around them.

LDN (low dosis naltrexone): discussed extensively on here. This is not an admitted treatment for Crohn's yet, but might become one in the future. It has fewer side effects than biologics and immunosuppresives and there is an indication it works well - but we don't really know yet, let's see.

I only used pentasa for 4 years from 1999 to 2003 and it didn't help with remission at all - the consequence was a stricture and surgery. Aza (orally, I haven never came across anyone actually using Aza injections as suggested above... but apparently that does exist) alone put me in remission long-term, but with flare-ups occuring occassionally. it took me many years to get my long-term management of Crohn figured out (including sport, vitamin treatment and Aza as well as dealing with stress), but have been in real remission for a year now. I am just mentioning this, so you don't think Aza alone will make all symptoms go away.

The description of your symptoms (flair ups, bloating/gas, a bit of pain) is similar what I have had for the last 14 years - I am definitely no severe case, but I know that I rather have no symptoms at all than real flares every few months or so. That's why I take Aza. As said above, the side effects can be managed by regular blood tests (always ask your doctor's office for a print out and that way you can also check other factors such as your haemoglobin levels, protein levels, ferritin etc. - all things that are good to know on a regular basis so you can keep healthy).

 

[Artisan105]

Thanks guys!

Yeah I was sure what the other meds were even used for so thanks for the advice. I will see what they say at my appointment on Weds - as you say, I dont want to end up needing a resection any time soon because I didnt follow their advice - just because I feel ok doesnt mean damage isnt being caused on the inside I guess

xx

Make sure to keep a journal on your medicines, especially your body's reaction towards them. Let your doctor know right away so you can create a customized treatment that works best for you. Everyone's bodies are different so some might work for you and not others. For me I can't take Imuran, it made me stop breathing! -_- Just hang in there. Praying for you now. :]

 

[Artisan105]

There are basically 5 groups of drugs right now that are used to treat Crohn's

Cortisone drugs (e.g. Prednisone / Entocort etc.) - they are used to treat the immediate effect of a flare up, that is get the inflammation under control short-term. Long term usage of cortisone drugs (regularly when there are flares) can have serious consequences which means long-term Crohn's management is important. In 14 years of having Crohn's I have used cortisone drugs 5 times and never longer than a month.

Pentasa/mesalazine: it's the oldest form of treating Crohn and definitely the least effective. It works for some patients, but the majority of patients cannot sustain remission with it. Some patients even have an increased chance of flare-ups with it (according to a newer study I read). Personally, today, I would only use it as a supplement to any other treatment, if at all.

Immunosuppressives (azathioprine, 6-mercaptopurine): long-term treatment of Crohn's that has been the standard treatment from the 90s to early 2000s for all Crohn's patients and has continued to be the treatment of choice for all non-severe cases until recently. Side effects can include things like liver damage etc. - that is why you do a blood test every 8 weeks (which is good anyway, as you can see inflammation indicators and generally get an overview over your status)

Biologics (remicade, humira): TNF-a blocker, which definitely have a higher chance of more severe side effects than immunosuppresives. Until a few years ago, they were only used for severe cases. They definitely work better than immunosuppressives to get you into long-term remission. Recently, at lest int he US, more doctors have had moderate Crohn's cases getting on biologics. Personally, I'd say avoid biologics as long as you can get around them.

LDN (low dosis naltrexone): discussed extensively on here. This is not an admitted treatment for Crohn's yet, but might become one in the future. It has fewer side effects than biologics and immunosuppresives and there is an indication it works well - but we don't really know yet, let's see.

I only used pentasa for 4 years from 1999 to 2003 and it didn't help with remission at all - the consequence was a stricture and surgery. Aza (orally, I haven never came across anyone actually using Aza injections as suggested above... but apparently that does exist) alone put me in remission long-term, but with flare-ups occuring occassionally. it took me many years to get my long-term management of Crohn figured out (including sport, vitamin treatment and Aza as well as dealing with stress), but have been in real remission for a year now. I am just mentioning this, so you don't think Aza alone will make all symptoms go away.

The description of your symptoms (flair ups, bloating/gas, a bit of pain) is similar what I have had for the last 14 years - I am definitely no severe case, but I know that I rather have no symptoms at all than real flares every few months or so. That's why I take Aza. As said above, the side effects can be managed by regular blood tests (always ask your doctor's office for a print out and that way you can also check other factors such as your haemoglobin levels, protein levels, ferritin etc. - all things that are good to know on a regular basis so you can keep healthy).

How do you take your Aza Chris? Injection to the thigh? or medicine pills? What is your dosage and frequency you take them. Just curious. :] Have a great day bro.

 

[alex_chris]

How do you take your Aza Chris? Injection to the thigh? or medicine pills? What is your dosage and frequency you take them. Just curious. :] Have a great day bro.

Pills, 50mg (2 in the morning, one in the evening). I am 77kg (170lbs) so that
's about 2mg per kg which is at the lower range of the 2-2.5mg per kg range.

To be honest, are there really people who go for injections? Until recently I didn't even know aza could be taken via injection. The various GIs I had never even mentioned it (not that I want to have injections...).

 

[Artisan105]

To be honest, are there really people who go for injections? Until recently I didn't even know aza could be taken via injection. The various GIs I had never even mentioned it (not that I want to have injections...).

Well it was a long time ago when it first came out. My doctor told me it was an injection and no pill form. But I guess now there is a pill form. Yea I doubt people will choose the injection form lol... it really sucked back then. :]

 

[Clash]

I found this in reference to Imuran injections(<--click here):

Imuran Injection should be used ONLY when the oral route is impractical, and should be discontinued as soon as oral therapy is tolerated. It must be administered only by the intravenous route.

DustyKat maybe able to give more information regarding this, having tagged her she may be along soon.

 

[CrohnsChicago]

Hey Laura,

Azathioprine is another term used for Imuran. It is an immune-suppressant drug. It is normally given through needle injection or IV. If you have Crohn's or IBS, they give you this if the GI doctors feel like there is a need for a potent medication to control the inflammation.

Azathioprine is the GENERIC of Imuran. For Crohn's patients it is typically given in pill form although it is sometimes given through injection. It is not given based on location. it is given based on severity of disease and your inability to achieve remission/come out of a flare.

Attached is basic information related to Azathioprine:
http://www.crohnsforum.com/wiki/Azathioprine

 

[DustyKat]

I found this in reference to Imuran injections(<--click here):




DustyKat maybe able to give more information regarding this, having tagged her she may be along soon.

As Clash has quoted, injections are only used when you can't take oral medication. Injections are administered intravenously and usually daily so very impractical unless you are in a hospital setting or only required to have them for a very short duration of time in the home setting.

There may be many reasons why a person can't take medication via the oral route but if the issue persisted for any length of time there would be alternative measures in place to receive medication either in tablet form e.g. NG tube/gastrostomy tube or IV e.g. PICC line, so you wouldn't actually have to have it physically injected everyday.

Dusty.