Maintenance medication - whats the best way to go?

[valleysangel92]

Hey all


As some of you might be aware, I've been having what seems to have been a bit of a flare up recently. I ended up back on steroids and I dont want to end up in a continuous cycle of flare/pred/flare/pred. I've got an appointment with my GI on the 13th of January and I think it might be time to discuss maintenance meds.


Ive been doing a little research into my options and I think I'll either be looking at a 5ASA (most likely pentasa) or possibly Azathioprine (imuran) or 6mp.


Has anyone found the 5 ASAs effective? I've seen a lot of evidence that many people just dont find them enough and end up coming off them within a few months, are there any more positive experiences?

How effective have you all found aza or 6MP and how did you get on with side effects? Also, how much of an issue was having a decreased immune system, it is my dream to become a nurse, specializing in the care of young children, if i'm going to pick up every bug going this won't be a safe or practical option while taking these medications.

How long have people stayed on these medications? I've seen stories of people being on 5ASAs maybe a year but nothing really long term, what about the immunomodulators?

At the moment, i'm not sure I feel "sick enough" for the immunomodulators, but I know that last time, things were a lot worse inside than outside, and I would rather avoid going back there again. I am more than willing to give the 5ASAs a go, but I don't want to put myself at risk by taking under-effective medication.


Thankyou for any input .

 

[Jennifer]

Hi valleysangel92, sorry for the late reply.

I've taken 6MP for over 15 years and have flared twice while on it. The only side effect I've noticed is some slight hair loss but nothing extreme that would make me want to stop taking it. As for being immune compromised, that's something I never noticed. I actually got sick less often than those around me but if you're worried you could wash your hands often and use hand sanitizer, avoid touching your face (mouth, nose and eyes), increase your fluids along with vitamins to help boost your immune system and just generally do your best. If it doesn't work out then you could try something else.

I used to take Asacol for about the same amount of time if not longer but was taken off because my current GI didn't think it was doing anything/wasn't needed because I had been in remission for 12-13 years already but perhaps it was doing something because I slowly started to get worse after it was stopped. Now I'm on Pentasa instead because my GI feels that it releases in the right spot which may be more beneficial then where Asacol released (I'm affected in my ileum and colon/cecum yet haven't done much research myself on where these medications actually release).

Mesalamine medications are topical therefor work better for UC than Crohn's because Crohn's causes inflammation deeper in the intestinal lining. I do believe that they do help some but shouldn't be used alone.

For me it's always been the combination of meds that helped to achieve remission, well for the flares before my resection anyway but I believe that the combination of meds were also helping to keep me in remission after my resection. Everyone is different though as you know, so you may have to do some trial and error to see which medications work best for you.

Keep us posted about what you and your GI decide to try.

 

[valleysangel92]

Thankyou Jennifer .

I think that pentasa is the only one of the 5ASAs that targets the whole of the intestines and it's the most widely used around here (from what I've gathered from speaking to other patients in the hospital) .

It's quite reasuring to see that people don't seem to have such a big issue with being immune compromised, and I would definitely be careful with hygiene.

As yet, my GI has not brought up the issue of maintenance medication with me, and so I have no idea what he is willing to allow me to try at the moment, some times doctors here give you all the control and sometimes you get almost no control, so we'll see which way it goes. I did use pentasa for a brief period (about 2 weeks) and then my GIs registra took me straight back off them (it was a GP that first prescribed them) so I don't think my GI would be too keen on me just using a 5ASA judging on that.

 

[Jennifer]

I'm curious to see how your appointment goes. Write down any questions or concerns you have to make sure that you don't forget anything. If your GI isn't willing to try anything other than steroid, taper, steroid, taper etc then ask them why. Depending on that answer, you may need to look into finding someone else to treat you. If your GI is willing to try 6MP or Imuran, be sure to ask them how often they want you to have blood work done (check liver function etc). Hope the appointment goes well.

 

[valleysangel92]

Thankyou I usually make myself a little list of questions and points I'd like to make, and I will be sure to add those to my list, he has once mentioned using other medications in passing so I think there is a willingness to use things other than steroids I'm just not sure what or how 'sick' I'd need to be to get them.

I know that when last checked my iron level was 6 (normal is 11-15) so there's certainly something going wrong.

Thankyou for your input I will definitely keep you updated .

 

[Cross-stitch gal]

I'm sorry that I've just seen this. I've been on 5asa's ever since I was diagnosed in '96 except for 2-3 months when I tried azathioprine. I've never had any trouble with being immune suppressed while on these drugs. My GI in the past constantly had me on prednisone whenever I was in a flare. But, my current GI wants me to stay as far away from steriods as possible. I hope your upcoming appt goes well. Please keep us updated.

 

[Axelfl3333]

I,ve been on pentasa for a couple of years and for a while didn't,t think it did much,but I,ve gradually got better,pains gone, still prone to the odd bad day or two.i reduced my dosage last summer to 3 a day instead of 8 and touchwood have been fine.my clinic nurse advised that if if have a bad day to up my dosage for a week and for me it seems to work.good luck

 

[valleysangel92]

Thankyou both my GI doesn't want me on steroids too much as from age 18 I've had low bone density and I'm not able to take calcium supplements (too much calcium in my blood) . So I'm definitely keen to avoid that if I can.

I will take lots of notes and let you all know what happens and what (if any) decisions are made.

 

[valleysangel92]

So I had the appointment this morning.. And was not what I expected at all .


Firstly, my GI announces that there is some doubt over my diagnosis of crohns, as apparently the inflammation found when I had my resection was not 'crohns typical' but by that point I had already been on steroids for about 6 months.. So surely that would have had some impact on how it looked?

Secondly, he says he thinks there is 'no chance ' of a recurrence and therefore I dont need to be on any maintenance medications. Well even if it isn't crohns (though my instinct says it is) , surely they need to figure out what it was incase it does come back?

Thirdly, he announces I have low vitamin D. he then prescribed me a supplement for this.. Which is high in calcium.. Which I'm not allowed to take because I have high levels of calcium in my blood already.. If your calcium levels go above 3.0 (mine are around 2.77 -2.9 generally) it can cause all sorts of serious problems, and in extreme cases can put you in a coma.

He didn't seem to remember that he was the one that asked for this appointment because I'd been getting sick.. or that he had asked my GP to give me a course of steroids in December (which helped, also making me think there must of been some level of inflammation) . I'm still getting D and a lot of stomach pain .

At this stage, I should point out, this is very out of character for my GI and has left me a little shell shocked. Also, he isn't actually an IBD specialist, he works more with liver patients, I actually have to GIs, this one and another. Gi number 2 is an IBD specialist but I only see him once a year if I'm lucky and he never remembers who I am, he comes across as having the memory of a gold fish and has insane waiting lists. When I did see GI 2 last, he seemed more than sure enough that it was crohns we were dealing with.

As far as I know, there is only one other IBD specialist at my hospital, who I have heard good things about, but who seems to deal with more severe cases and who seems to have even more insane waiting lists.
Any one got any ideas about any of this? Very confused and frustrated right now.