I could use some help (Medication and mental side effects)

[HaastsNZ]

I made a post about 6 months ago with the unnofficial diagnosis of crohns/UC as of last week I found out that it is definitely IBD, one group said Crohns and one UC but either way they're sure it's one. (Sometimes they can't tell with cases)

Anyway the inflammation has been quite severe and the specialist was very clear this time with how serious the disease is and inflammation. (I get a new specialist every time) I'm on my second course of Prednisone tapering from 40mg and staying of 20mg for a month or two, along with 5g of Pentasa. I've had a range of side effects such as hair loss, weight gain (Usually very fit), Lack of sleep, and worst of all mood swings with some bad depression.

When I started the high does of prednisone again I suffered days of not being able to feel anything, inability to feel full or care for people, as if I was disconnected. It was horrible thankfully this has passed but my mood swings are still very present. I'm sure a lot of you have far worse off experiences than mine but I just want to know how everyone can deal with it.

P.S I study full time in engineering and work 20+ hours a week is there much I can do?
Also he wants to start me on Azathioprine does anyone else have much experience?

Thanks so much
Regards

 

[ronroush7]

I am sorry you have IBD. I have been on Aza for a while it seems.

 

[my little penguin]

The mood swings should get better once you start to wean prednisone .
You can let your Gi know about the mental issues.
The weight gain typically is just water and disappears about a week or two once your off pred.
Pentasa is mild and Aza takes about 3-4 months to become effective

 

[fuzzy butterfly]

Hi i was on aza for about six months before i became intolerant of it. Made me vomit right after taking it.
Dont let that put you off tho as it can be a great help in controlling ibd's for a lot of people. Hope it works well for you. I was doing well on it myself re pains etc till my liver funtion levels sky rocketed n had to stop it. If you can tolerate it it really should help you feel better. Best wishes

 

[ronroush7]

I agree with fuzzybutterfly

 

[nini_mini]

I second my little penguin

 

[Layla]

I use amitriptyline to take the edge of the pred. It's only a very low dose, 10mg rather than 100mg or more when used for depression (I think) but it stops me wanting to kill people every 5 minutes and it really helps with getting some sleep. I know it's not great to have to use another med to take care of the side effects of the first one but it helps me function when on high doses of pred.

I tried aza twice and it gives me bad anaemia which is unusual so it could well work for you.
Pentasa is really only used if you have disease in your colon (UC or Crohn's in the colon) if it's in your small intestine it's deemed to be of very little use. You might want to find out where your disease is located but I'm assuming it is the colon if they're thinking UC. Even then if it's Crohn's Pentasa will be unlikely to be beneficial so you should really try to push for a more precise diagnosis. As you can see from my signature, I spent 20 years thinking I had UC and not on meds, until the strictures in my small bowel (surprise!)became so bad they had to be resected. I now have a diagnosis of CD and am on maintenance meds which hopefully will prevent any more strictures.

 

[Crohns and AS]

I am on a decreasing dose of pred now and yes it makes me more irritable and gain weight, especially in the stomach neck and face. I find it harder to fall asleep but once I do fall asleep, I sleep normally.

I wish the azathioprine would have worked for me. I hear great things about it but I got flu like symptom's after taking it and throwing up. It just depends on the person and how you react to the medication.

I am on a different medication but it can cause hair loss and I have to take a folic acid pill with it. Not sure if it is solely to help with hair loss but maybe something to ask your Doctor about if hair loss is an issue.

 

[tots]

I am sorry your having such a hard time. School and working makes for a rough schedule!
I had to start with a lower dose prednisone and do a really really slow taper, otherwise I just
flared again.

I hope it all calms down very soon!


Lauren

 

[duh panda]

Because you are a student - do you have access to campus therapists or counselors? This was my one main thought while reading through.

While the side-effects from the prednisone will go away as the dose lowers and you come off of it... I highly support seeking out professional help to discuss and learn tools of managing living with a chronic illness - even if it's just learning how to stick it out until the tide turns.

It can make a huge difference in being able to accept the crazy and not just feel jerked around by meds, side-effects and the disease itself. Side-effects don't have to be suffered, many can be treated such as Layla shared. After a decade with Crohn's and spending majority of it on varying dosing of Prednisone I have grown to advocate more and more for managing side-effects, not just symptoms, to optimize life and well-being. Many professionals should be able to at least direct you toward appropriate resources and are an excellent place to start in your local community.

 

[HaastsNZ]

Thanks for the info guys. As of today my Spec wants to start me on Aza, although seeing and hearing about those side effects makes me very cautious it sounds like a horrible drug. My inflammation is all throughout the colon, they don't think it's in the small intestine.

I do have access to the university councillers and thought of making use of them. I will get in contact for at least a once off, thanks

Currently my specialist changes from appt to appt because it's the public system but I am seeing a private specialist in a few weeks I think I will hold off the Aza till then. It seems like something I would want to wait for as a last resort.

Thanks again for the advice, today is definitly one of my better days compared to when I wrote this. I hope it stays this way for a while!

 

[Crohns and AS]

Hope all goes well for you. I was worried about the side effects listed also unfortunately when I had to switch off azathioprine to the new medication, the new med had as many if not more side effects listed.

 

[ronroush7]

Hope all goes well for you. I was worried about the side effects listed also unfortunately when I had to switch off azathioprine to the new medication, the new med had as many if not more side effects listed.

I second that.