Pentasa to Azathioprine/6-MP

[vinnycast7]

Hi all

I've been on Pentasa for 5 years since having an emergency op to remove part of my small bowel after passing blood which caused me to collapse.

Fortunately, since then things have been ok but I've had 2 relapses where I've had cramps and diarrhoea and my Doctor said if you relapse against and have to use steroids to recover then it's time to change my medication.

Unfortunately that time has come the steroids as they always do worked a charm and I was completely normal and healthy.

Now that I'm off them I have good and bad days but it's clear I need to change off Pentasa.

My DR said the only choice i have is : Azathioprine/6-MP

However, this frightened me given that for life you need monthly blood tests and that for the first 2 months i need weekly ones to monitor how I react to the treatment.

I obviously want to take this drug but I was also told of a huge list of potential side affects which don't sound great as a 27 year old who still likes to go out and enjoy life.

Does this drug mean you can't really drink alcohol any more? Or that other problems internally have developed as a result of moving onto the drug. The blood tests sound horrible at the moment but I guess they will become "normal" over time.

My fear is that it's such a strong drug that whilst hopefully will work with the crohns but then it may cause big problems elsewhere. I'm on B12 injections every 4 months and I'm also anaemic so this is a big decision for me to take this drug.

Can anyone who has made this switch offer any help or guidance.

Much appreciated

 

[stratford]

Sounds very familiar.

Following my resection;

I stayed on the Pentasa - Steroids - Pentasa -Steroids etc treatment for many years but the only time i was fully ok was on 15-20mg of Pred'.

I then moved on to Immunosuppression drugs.
I used Azathioprine,then 6mp,then Methotrexate.
All of these drugs got Crohn's into remission for me but the side affects left me with no choice but to stop taking them.
My white blood cell count kept dropping to a dangerous level.
I suffered fatigue(severe),vomiting,intense headaches - i couldn't get out of bed somedays.

You will find on this excellent forum other members who take these drugs without any problems.I've met some people at local Crohn's meetings to who take them.

We all react different to treatment for Crohn's.I tried as hard as i could to tolerate the side affects because the Crohn's was being controlled but it wasn't to be.

I hope you find a treatment which can help you.

Good Luck

 

[vinnycast7]

Thanks for the advice - much appreciated.

Were you as "normal" as when you was on the steroids because on them I managed to gain some weight (am quite skinny) and felt strong. Just wonder how close to that normal feeling this drug will get you.

Also did it affect your social life? Ie did you feel you shouldn't drink alcohol because of the medication apparently having a big affect on your liver.

I don't want to feel "normal" at the expense of being able to go out and enjoy myself etc

Also did the blood tests get in the way with work etc Really not like the thought of weekly blood tests

 

[stratford]

It was like when i was on Steroids.I put some weight on(v.rare for me),had a good colour for once(pink) & no Crohns symptoms.

Re alcohol; i haven't had a beer for over 10 years.Following my resection (hemi-colectomy) i found alcohol & spicy food to be a no go area.It just went straight through me so i didn't think it was worth doing again.

I had an arragement with my nurse at my GP practice to fit in the blood tests.She was very helpful - maybe you could ask about something similar

 

[Terriernut]

Vinnycast, I'm on 6MP now. As well as Pentasa. I found it has helped quite a bit! Less side effects then I expected as well. However, I split my dose, and that has helped with fatigue. You will need to have your TPMT tested first to see if you can take 6MP or Azathioprine. And blood test weekly or bi weekly to see how you are doing on it.
http://www.crohnsforum.com/forumdisplay.php?f=64

Theres the link to the subforum.

I do have a drink with not too many issues. I shouldnt because my liver has never been good (family genetics) but oh well!! So you CAN drink on the drugs. Its Methrotrexate I believe you shouldnt touch alcohol on.

 

[DustyKat]

Hi Vinny,

Both of my children are in remission and are on Imuran as a maintenance medication following surgery. They have experienced no side effects from the drug. As Misty has suggested, ensure you have the TPMT blood test before commencing as it will at least give you some idea as to whether you are likely to avoid the more serious side effects. The TPMT test will show if you have the enzyme present in your liver to help metabolise the drug, if you do it will in most cases mitigate any liver issues.

As to the blood tests, yes, initially you require them weekly but then you move to fortnightly, then monthly and many GI's will then move out to 2 or 3 monthly. It will depend on your GI and your individual case though.

My children are leading full active lives and they do drink socially with no ill effects from the drug, just over indulgence at times. :lol:

Your anaemia is likely due to your resection and Imuran should not impact on that. It is good to see you are on B12. Are you also having Iron stores, Folate and Vitamin D levels monitored?

Good luck!

Dusty. xxx

 

[Terriernut]

Isnt Dusty AMAZING!!! (to save time, just ask Dusty!) Seriously she is spot on!!! If it wasnt for her, I wouldnt have gotten those blood tests for one thing.

 

[darkriftx]

Azathioprine is the only thing that worked for me...

For me, azathioprine has been a miracle drug. The first three to six months are hard as your immune system adjusts to the medication. The blood tests get old but eventually you no longer need them. The side effects of azathioprine are much better for me than what I have experienced with prednisone. I have one tip if you must take this medication:

If you are getting nauseated/vomiting and are overly exhausted, take half of your dose in the afternoon and the other half in the evening. I've found that taking this medicine in the morning seems to increase the occurrence of nausea and taking it all at night seems to increase the exhaustion.

 

[vinnycast7]

Thanks for all the feedback guys - i was very skeptical about joining a new forum as i've never really asked for outside help other than from my specialist. But to get so many replies is overwhelming so thanks for making it easy to chat about Crohns and for being so friendly in this forum.

Back to the issues....

I'm due to meet my specialist in a few weeks - perhaps I should call her up before and arrange for this TPMT but i'm guessing she won't put me on the medication unless i'm tested first.

I'm not having anything monitored at the moment, just see my specialist every 6 months and have a chat. Every now and then she asks for a blood test but that's it really.

However, after my second stint on steroids It's time to more up from Pentasa. Knowing I can still drink and have a "normal" life is encouraging. Also hearing the blood tests are not so frequent is nice to hear as that may be a real problem with getting time off for work plus the whole inconvenience of it all etc

thanks for all the info guys appreciate it

 

[chubbytony]

hi i had crohn's now for 6 yr's with a illestomy i take 2 mesalazine sachet's a day 1 in the morning 1 at night time after my tea azathioprine 125mg and loperamide x2 as and when i need loperamide as to make the output go more thicker i only have to get a full blood count now every 3 months also at same time they give me a b12 *** at the same time i have a little drink now and again with no problems in the past 6 yrs i have only really had 3 bad attacks in that time and that was due to a very bad output making me dehydrated hope this helps you a bit ....

 

[vinnycast7]

Quick update- still waiting to be put on this medication as I'm currently moving hospitals as i wasn't happen with the service I was getting.

The down side is I really need to start these meds but cant until the "transfer" is complete and I get a new appointment arranged.

A big problem at the moment is my Crohns affects my joints and in particular my ankle so often i'm limping around which isn't great at the same time my skin is getting worse- very red, blotchy, teenager like. I'm hoping WHEN i move onto these I can finally have some normality back in my life.

 

[Andjela]

Vinnycast7,

Why jump from Pentasa to 6 MP? There are other 5 ASAs to try. Although most are mesalamine, I wonder if trying a different preparation may do it for you. I tried them all and am now facing 6 MP, but still pondering if I can get by with managing the symptoms of a flare up rather then side effects of the med. But my flare may be less troublesome then yours. I have been living with Chron's for 12 years and going on and off 5 ASAs has, I believe, postponed the heavy drugs.
I am conservative with meds, and worry that docs jump into heavy stuff to soon. That is my bias, but I it may be worth a discussion with your doc.
Good luck.

 

[vinnycast7]

Finally after my consultation and TPMT test (which said I was in the middle/low range to tolerate this drug, so only a small dosage to start with) I should be having my first tablet tonight.

Question for those who take Azathioprine.....When you first took it, did you take it evenings after dinner or mornings after breakfast? I ask because every consultant I've spoken too has "stressed" you may get a fever at first you may not feel great etc... So I was curious for those who took the tablet say at night whether they were ok the next day when at work etc? Or was there no difference?

Also regarding alcohol, like others In 2 weeks I have my first blood test and then 3 more over the next 6 weeks to see how my Liver is coping etc My consultant said that alcohol was ok just don't "go mad" whilst the drug is new but didn't say stop drinking. However, a call from the pharmacist today who gave me the results of my TPMT test said it's best to go tea total for the next 8 weeks which being honest is almost an impossible task! How did you guys approach alcohol when first on this drug? Any advice?

As ever, all thoughts are welcome!

Vinny

 

[Bld]

I have been on it for just over three weeks. The first two weeks I was absolutely fine taking 50mg the first week and 100mg the second week in the morning with no side effects at all. The first day of the third week I had to increase to 150mg, which I did taking the tablets at the same time in the morning and within three hours I was violently sick. I then tried splitting the dose 50mg in the morning and 100mg at night but I have almost constant nausea and have been sick a few times since. I am sat waiting for my consultant to call to find out what the next step will be.

 

[chubbytony]

i have been taking 2x 50mg 1x 25mg for 6 yrs now to be honest weather its just me or not but i take them either after my breakfast or if i am half asleep when i go to work lol i will take them after my tea with no effects at all.but like i say have been taking them for 6 yrs now so i hope this helps....just seen the bit about drinking when i started taking the tablets the doctor said it should be ok in moderation, but i guess every ones different i like magners but dont drink that much anyway poss 3-5 bottles a week hav'nt had any problems so far...

 

[vinnycast7]

Thanks for the reply guys- whether I was just in a "screw moment" but I decided to take my first lot tonight just after dinner.

I'm on 75mg for 2 weeks then if I feel ok, take 150mg which sounds a lot but I don't really know what sort of dosage means what? Ie is 150 a lot?

i'm also taking pentassa maximum dosage twice a day so it's a bit of a pill fest here!

Right now my biggest worry is the nausea and sickness. I think that's why I've taken the tablets after dinner where I can be at home where i feel "safer" if I feel rough rather than at work which can get awkward.

Has it changed your life Chubby? Did you drink alchohol when you first went onto the drug?

 

[chubbytony]

Has it changed your life Chubby? Did you drink alchohol when you first went onto the drug?
to be honest i probably drink the same now as before i was bad but i dont drink that much anyway,the only way it really changed me was the fact that before the drugs and tablets i remember like everyone else on here i think all the pain i was in at the time before hand.like with some food and drink i find some things make it feel worse sometimes cider just goes straight through me other days its fine hope you can make sense of what i said

 

[Ally]

I take 6MP with zofran every day after lunch. I'm in class all afternoon and don't have any problems that don't stem from boredom! I'm on 100mg which is a bit high for my weight so when I had a bit of a problem with nausea they stuck me with the zofran. I also go through weeks of liquid diet and that's usually when I feel not so great on it. Hope it helps get you into remission!

 

[Bld]

I'm on 4000mg Pentasa alongside the 150mg Aza and also 10mg Pred at the moment so I'm with you on the pillfest!

 

[vinnycast7]

I don't drink during the week but at weekends at least 1 night I tend to go out with friends and have a good time. I'm 26 and single so often my heavy nights are very heavy in clubs etc and at the moment I feel rough for a day or so as anyone else would but I worry if something worse will happen on these meds.

I guess time will tell but I hope I can still enjoy that 1/2 nights a week where I can just let my hair down.

 

[vinnycast7]

1 Week gone and apart from having to take soo many damn pills each day and that my Urine appears to have a shade of "lime" about it. All is well!

Still on half dosage 75mg- tomorrow is an interesting day as i'm out for a friends birthday meaning alcohol for the first time. Will be a test if my kidneys and liver can handle both Azathiorprine and booze!

Will let you all know how that goes.

all the best

Vinny

 

[ThatsWhatSheSaid]

Vinny, how is it going for you presently? I am in the situation you were in when you started this thread. And I am really scared about going on something so strong. Anything you have to share would be so much appreciated.

 

[vinnycast7]

Hi there- thanks for getting in touch!

I have been on Aza for 17 days now at 75mg- I was meant to go up to 125 but because I'm anaemic (low iron in the body) I'm staying on this level for the time being in case my body can't handle it!

I have had 1 blood test (currently awaiting the results) to see if my body has had any problems....

As for my own experience so far...

symptoms of note:

my Urine is VERY concentrated so much so that initially I could see a lime tint to it!

I have had a few sports/red marks come up on my body over the last few days as unfortunately my stomach has been little upset when opening my bowels. This isn't a shock as before when on Pentasa only when I did have an upset stomach after a few days spots, bad skin and even joint pains would occur. At the moment it's not causing pain as such just that when i go to the loo it's unpleasant and obviously these external marks and the spots are not nice but overall I feel fine.

I guess so far there are no problems with the drug (not really seen any changes to be honest) but don't be afraid I don't think it's as bad as it can look.

I've had soo many blood tests now a few more every other week or monthly won't hurt.

For myself it's the affect on my personal life- as i've said before Im 26 and love going out, having a drink etc. I have drank once whilst on these meds and didn't get too drunk purely because I'm scared that the liver won't handle it.

I have a consultation in a few weeks so hopefully I can get this cleared up. I don't want a drug that will hamper my life and going out having a good time is very much part of that!

On a sour note- next week I'm having endoscopy done at "both ends" which seems horrific! Never had a camera down my throat before, actually can't imagine it sounds brutal. Unfortunately the Doc's want to see how the Aza is doing down there and this is the only way to see!

Wish me luck!

Vinny

 

[ThatsWhatSheSaid]

The both ends thing isn't any worse than just one end. Not exactly a vacation but you know. Good luck!! Will you please give another update when you have one? I haven't pulled the trigger on setting up an appointment with my GI because I'm so busy hemming and hawing and being scared of the stronger drugs, and I know that is where things are headed when I make the call. I realize waiting doesn't do any good either. Anyway, please keep me posted!

Michelle

 

[ThatsWhatSheSaid]

Vinny, how did your both ends go? How is everything going for you? I'm not doing so great and having issues with my doctor...but I am wondering if I am finally onto something about me being so sick for so long the last couple of years. I get allergy injections (which for well over a year I have wondered if they played a role in making me sick because they rouse my immune system to fight) and I got feedback on the forum from someone else that their doctor will not permit allergy injections for crohns patients. I have asked both of my doctors (GI and ENT) about this multiple times, each directed me to ask the other. So I basically have two doctors that I think have been negligently keeping me sick for over two years. I have to look into it more but it confirms the suspicions I have been having for a long time now that no one would answer.

 

[vinnycast7]

Hi Michelle

Good to hear from you again.

Wow that sounds pretty bad! I hope they haven't mistreated you but at least you have something to go on now and hopefully things can only get better. Keep me posted with how you get on.

As for myself....

Well it's now 5 weeks since i've been on Aza.

I've had 2 blood tests of which the second (the 4 week one) i'm awaiting the results that measure my aza levels but generally at 75 mg my body seems to tolerate the drug.

The not so fun cameras at both ends went well, I was so knocked out from the sedative that the mouth one I didn't remember but the downstairs one I only felt pain a couple of times.

Unfortunately, I'm anemic and my blood count was as low as 6.2!!! As a result i've had an iron infusion to boost my energy and a week after treatment I do feel better. In a few weeks they will test my count against hopefully its back up to a good 11 level like most peoples.

Plans going foward:
Next week have my week 6 blood test

then first week of July i'm off on holiday with some mates which i'm a little worried about.

It's a "boys" holiday we are all single so it's basically, sunbathing and drinking and girls! Strangely the latter is the least of my problems. On Aza i'm told do NOT use sun cream lower than 20 because your skin is vulnerable to burns. Then the drinking issue comes up again- i've had a few nights out drinking but nothing that holiday will be like plus there's the dehydration etc...just hoping my liver can handle it and i dont do anything stupid!!!!

Vinny