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Kelly's Imuran Thread

Entchen

Chief Dandelion Picker
Hey all: I'd expected to need to be on Imuran in February or so, but start date has been moved to December. Symptoms point quite clearly to increased inflammation. Have been in a flare since Sept 30, 2009 and would really like to think that Imuran will do the trick (right quick!).

I've been carefully reading through the Imuran threads.

Personal stories, information and/or advice welcome -- and appreciated!

Now here's the longer story from today:

The original plan was to put me back on Prednisone (alongside the Imuran) for three months. I asked if Budesonide (Entocort) could be put on the table as an option, briefly explained the 10 kg weight gain, medication-induced high blood pressure (I'm on meds and it's still high!), and the dysphoria...and this change in the plan was accepted no problem. This is especially good given that we'd previously agreed that Prednisone was *not* effective for me. I was to start Budesonide today, but pharmacy wasn't quite sure what the Rx said (in terms of dosage) and needs to call GI to confirm tomorrow.

The other good thing is that I'm finally losing weight after 2 years of Crohn's-induced continual weight gain. I know weight loss isn't good when it's caused by inflammation, but the increased weight has been causing health problems (and I don't like how I look, to be blunt). I'm hopeful that the Budesonide will help manage the symptoms while not leading to any kind of added weight gain like I saw on Prednisone. I still have ~12 kg to lose till I'm at the top limit of a good healthy weight.

Re. the Imuran, my GI is going out of town on Thursday, so we've decided to start a couple of weeks from now instead of today. Dealing directly with my GI is better than trying to reach whoever's on call at the hospital. I'm going to go for blood work on the 21st and then start Imuran that day. Will go for next round of blood work on the 28th, and call GI on the 29th (his first day back) to double-check whether blood work indicates I should move to the next higher level of the medication. Two weeks (and two blood tests) later, the plan is for me to be on the long-term dosage.

I've also officially been placed on a low residue diet.

A few hours after my GI appointment, I went for a relaxation massage. That was one fantastic hour. My joint pain and stiffness is pretty awful, and although I still have the pain now, I feel less stiff and just plain feel better.

'K, that's all for now!
 
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Well that sounds like a good plan! In my experience, eating a solid breakfast with the imuran helped with nausea. I had Weetabix (which is the only high fibre food I can really tolerate). You may need to experiment. Or some people prefer to take theirs at night, so they slept through the nausea (not an option for me since I don't sleep through if I'm ill). It workedvery quickly for me, I hope it works as well for you!
 
It sounds like you and your GI have put together a good plan, lots of luck with it. And a lack of weight gain, too!

If it helps, I was extremely nauseous, even with taking it with meals, when I first started the imuran and lost a bunch of weight. :) I ended up using promanthazine for the nausea and just being really nice to myself the first couple of weeks, making sure I got plenty of rest, and stuck mainly to liquids to avoid as much pain as possible.

In the end, imuran has been my "miracle" drug for a few years now. I hope it works well for you, too!

-Kathryn
 
Well thats awesome and hopefully some relief for you. Im assuming christmas break for you soon or already as I read your a college prof so that will give you some good relaxation time too. I started imuran december of last year and it worked wonders for the first couple months. Keep in mind during the increasing phase of it you may not see drastic results so try not to be let down at that point.

Reason Im now on remicade and imuran were due to wicked stress levels of family troubles with exams and then a friend passing which led to an awful flare. If it wasnt for that Id likely still be just on imuran and it really did change my life at the time.

Make sure you take it right before bed and try to have a good size snack with it because as in my case I puked if I didnt as it can be very hard on the stomach. Best of luck and hope you see some results soon.
 
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I think either I'm not a normal case or I have a really strong stomach because I have never experienced any nausea while taking Imuran. I was really nervous about it when I first started (all those stories about unexpected projectile vomiting really had me worked up! Haha). I have always taken it with food, but I find even something small as a cup of applesauce or peaches is enough to not experience any nausea.

My only adverse reaction has been extra sensitivity to heat, which causes me to break out in a rash if I don't keep my body temp. regulated. since it's winter time, I don't have that problem anymore, thank goodness.

Anyway...point being...you may not experience some of the "typical" reactions to the medication. :) I hope it works for you! It's really helped me out on top of my Humira shots.
 
I took Imuran about 8 years ago, it did not do very well for me and has been taken off the table as far as meds go for me. I hope it works wonders for you and gets you out of this terrible flare up!
 
I've been on it since October 29th and I'm not sure if it's doing anything for me at all. I'm still tapering off of Prednisone and as i'm going down on that I'm getting more pain in my side again. I've read that it can take as much as 6 months to a year to work though so I'm trying to not be too hasty. I don't get any side effects from it except the occasional hot flash and sometimes my heart feels like it's beating pretty fast and then skips a beat but I'm pretty sure that's the Prednisone that I'm on. The only part that kinda sucks is the weekly blood tests. But I'm at the end now, only every month so that's good.

Good luck to you and let us know how it goes! :D
 

Entchen

Chief Dandelion Picker
Appreciate the info and the well wishes.

Am going to try taking it with a (large) snack before bed and see if I can sleep through the nausea. Do you think a bowl of cereal will be enough?

Else, the idea of losing weight from not being able to eat...well, there's a silver lining, at least! Of course, Marissa, I'd like to be like you and not have nausea: fingers crossed.

Canuck, I'm so sorry for your loss and for needing to move up to Remicade. And yes, I'll be on semester break soon. My GI suggested that I might not want to start over Christmas, but I'd rather be sick during the hols than during the start of a new semester.

Kylee, I agree about the annoyance of the weekly/monthly blood tests, but there is a factor that makes this much (much) easier for me than for some others: the place to get blood work done is 4 blocks away. My neighbourhood is residential, but it's super close to an area with facilities offering all kinds of medical tests, including blood draws.

Picked up the Entocort today and am going to take the first dose after supper.
 
Yeah sorry when I said a good snack that all I meant really instead of like a couple crackers or something else light. Although like kylee said you may not have to worry about it at all.
 
Kelly,
you might want to do the entocort in the morning. It's still a steroid and some systemic effects have been known to happen. Good Luck!
 
I agree with Nica. I had a bit of insomnia whilst on Entocort. Not to the point of cleaning my whole house until 3 am, but lots of tossing and turning if I took it too late. I'd say at least 12 hours before bedtime.
 
So you guys are saying that is was the Imuran i just started taking that caused me to have D and vomiting at the same time for 4 hours the other night? It was hell! I had eaten dinner about 1-2 hours before i took it and thought that would suffice. Maybe not? Am thinking of quitting these immunosuppressors, cant stand them anymore. Please tell me the side affects will dissapear very soon?
 

Entchen

Chief Dandelion Picker
Okay, Entocort mornings and Imuran nights. Dim the lights, grab some hull-free popcorn...we're in for a show, folks!

I was totally off sleep on Prednisone, but I hadn't realized the same could happen on Entocort (wishful thinking more than anything). I just hope it doesn't bring on any...ehm...anger issues. Was almost another person on Prednisone and it wasn't pretty.

Nowitz, sorry you're suffering -- I've heard that it *does* improve. My pharmacist has encouraged me not to call for help unless the side effects of Imuran keep me from being able to function at all, however, so it does seem the effects can be pretty unpleasant in some people.
 
Sorry to hear that nowitzki try and stick with it eh things were bad for me the first week of imuran and suddenly got better. If not talk to your doc and see what they think.

Kelly angers not a big deal profs are suppose to be mean and grumpy anyway arent they? Haha Im kidding but I was on budesonide which I believe is basically entocort? Anyway I experienced none of the anger, jitters, aches, or other various side effects normally seen with pred.
 
The first time I tried Immuran for a year I stayed in remission for 3 more years so I got 4 years remission out of it. The second time I tried it I got headaches everyday so I stopped taking it because I was still on remicade and that is still working for me.
 

Entchen

Chief Dandelion Picker
Hey, Canucklehead (sorry, I couldn't resist), being grumpy doesn't help with finding work (since my university closed, I'm now dependent on people's goodwill to get contracts). :) But you're right that I'm allowed to be much grumpier than people in other jobs, hee hee.

Lydia, I appreciate your input. Four years of wellbeing would be wonderful!

Just in case the side effects are nasty at first and I'm not inspired to cook or eat much, I've stuffed my pantry closet with Ensure. Doesn't hurt that it's on sale for $8 this week!

Day III on Entocort and zero side effects. Hurray! I prefer it to Prednisone already. ;)
 

Entchen

Chief Dandelion Picker
Psych. Used to be fairly focused (social and cognitive), but I'm learning to branch out. :)
 
Ahh ok cool Im going to have to do a few intro psych classes for my degree. Doing kinesiology (human kinetics) but elective credits coming from psych, chem, bio, physics, and math.
 

Entchen

Chief Dandelion Picker
Kinesiology seems like such a cool area of study. Hope you have a blast in intro psych, too!
 
Haha thank you. I really have always been interested in it but because of other requirements never have had the chance to take it. Im kind of upset with grades so far. Took a chem class this semester and did not do well even though at one time it was one of my best subjects in high school.
 

Dexky

To save time...Ask Dusty!
Location
Kentucky
Hey Kelly, I haven't moved around the forum much lately and just saw this. I hope you continue well with the Entocort and all goes well when you start Imuran. Has your sleep habits normalized at all? Judging from your last post at midnight, I'm still doubtful!!

PS...did you ever get that package?? We're doing the best we can you know:). Yay, only one more week to go!!!
 
Well I'm improving now and down from 29 tablets a day to about 4, I was so poorly taking the tablets, they were far worse than the disease I was in bed almost all of the time for 9 weeks and lost about 3st that's about 25kg.

I complained to my doctor and she seemed rather cross saying it was not the tablets but my anemia, I stopped taking tablets but had no blood and felt much better after three days.

Anyway back on topic, I have Imuran and I have nausia most of the time, I can suddenly start heaving just by thinking of my tablets, it's most odd, although nothing comes out, it's not very pleasant.

Imuran must be a hell of a powerful drug I have 50mg tabs, but often miss a day or take 1/2 a tablet, sometimes I take 1/2 morning and 1/2 at night. I find I really have to chop and change my dosage, sometimes when I'm feel tough I take the two full tabs I am supposed to take a day.

Any way the main reason I posted was to ask if anybody else has got this same side effect as me, My hair seems to have stopped growing and it's very thin. I had my hair cut about 3 weeks ago and usually after two weeks It is looking like it could take another cut, however it doesn't seem to have grown, in fact like I say I'm sure it's stopped growing.

I think I'm not only going to look like a Belson horror now but I will soon be a bald one.

My symptoms have improved though I only take Pentasa, Imuran and a few vitamins, not sure but I think my weight is creeping up, it's up and down and difficult to say at the moment.

So is anyone else losing their hair with Imuran?

Ps, I forgot to ask, do you think it's Imuran that is giving me aches and pains all over, usually worse in my collar bone or chest area, my arms and leg muscles ache a little too, what do you think?

Hope I haven't highjacked this thread too much
 
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I have a lot of pain in my legs ever since I started Prednisone in Septmember. And it's only gotten worse since I started Imuran in October. I had a Bone Density scan because the pain was so bad and it turns out that my bones are a little thinner from the meds. Maybe you should get one of these done? You could also try calcium chews(what I take) and it seems to help. I also lose my hair. Although, I was losing a lot more BEFORE I started meds. I think it was because I was malnourished. Good Luck! ;)
 

Entchen

Chief Dandelion Picker
Hi guys: Hijackers from Hungary are welcome. ;) Hope you find the answers you need!

Dexky, thanks for the well wishes re. the package -- it did indeed arrive! It's not only couriers. Canada Post has a habit of noting online that it rang the doorbell and left a note card, when neither is true (I called to ask for help after this happened *several* times and was told it's very common).

I'm no longer on Pentasa. Have 2 months worth left sitting in my pantry! I'm on Entocort for 3 months and adding in the Imuran on the 21st.

Cheers,
Kelly
 
I had an adjustment period for a few days but it was all good after that. The Imuran has been great for me this past year. I suffer from immune related joint pain that moves around from shoulder to foot and stops off at random places inbetween. The Imuran has been crucial to controlling it. And so has an increased awareness of dehydration. Between the two I feel i have this thing licked for the time being.

I hope you have the same sucess.
 

Entchen

Chief Dandelion Picker
I appreciate your info and well wishes, Kenny. Took my third dose a couple of hours ago: thus far the only side effect has been temporary nausea. I do have increased stomach pain (plus it hurts to the touch quite a bit more than usual), but symptoms had been worsening before starting the Imuran, so I don't know that it's a side effect. My GI had prepared me for much worse, even suggesting that I wait till after the holidays to start, so I'm glad things have gone so smoothly.
 
hehe I remember sitting at the computer on these forums waiting for my brain to explode or something my first night or two. I did get some blurry vision for a while but It was rather anti-climactic when nothing else happened.

Smiles help me more than anything else I would say. Here is one for you Kelly. Good luck with the new meds :)
 

Entchen

Chief Dandelion Picker
Hi all: Just spoke with my GI, and blood tests came back looking good, so I have the go-ahead to move up to 100 mg today and 150 next week. Side effects are still minimal.

I felt So Good on Monday, in fact, that I decided to try a strength training class. The result: the muscles above my knees are still so stiff and sore today that I'm going to have to miss spin class. I've gone for a massage, had a hot bath, put my feet up, tried to walk it off...still stiff. Clearly, some of us need to hit the weights more often (and, after smacking them around, actually pick 'em up and use the things, too).

And since I have a few more days of being free and easy (read: frantically trying to get ready for the new semester) before going back to work, I've decided to take advantage of my insurance plan and give acupuncture a test run later this afternoon. There is some evidence in the scholarly literature suggesting that it might help with chronic pain, although I haven't seen a paper supporting acupuncture helping gut issues.

Cheers,
Kelly
 
In Australia my doc has prescribed 1 mg per kilo of weight which he says is the dosage. So he put me on 75mg cuz i weigh 72Kg. I have notice all you people from US and Canada are on like 150mg. Is that you weight or are you guys prescribed a different dosage. Just curious.
 

Entchen

Chief Dandelion Picker
Hiya: What a neat observation! I think my GI said that he prescribes about 2-3 mg per kg, and rounds to the nearest 50 mg. I foolishly did not write it down, so that number might be a little off. :)
 
I am in Brisbane Nowitzkiwebb, my GI told me max dose is 2 1/2 times your body weight. My usual weight (before starting pred) was approx 50kg so I am at the max dose at 125mg.
 
I was also told 2mg per kg, and round up to the next 50mg (because that's the tablet strength). I did weigh 50kg, hence the 100mg dosage. I now weigh more like 60kg, but my GI says as long as I am feeling good, no need to increase the dose.
 
So glad I found this post! I just started imuran yesterday...a lot of my story sounds like your story, Kelly. Have I said that to you on other posts??? Anyway....I refused any more prednisone after 5 full months on it - with little improvement - but I gained almost 25 pounds and was a mean mean mommy to be around. I was searching on here to find out if Imuran causes headaches cause I've had a killer one since about 2 hours after I started this med. And, I've been really nauscous but figured it was from the vicodin???
Am so glad to here reassuring news about Imuran. I will stick with this and hope and pray for it to work with the Humira I'm also taking.
 

Entchen

Chief Dandelion Picker
Heya, Aliciars

You haven't said that previously, but I had noticed some of same. :)

My understanding is that headache and nausea can certainly be from Imuran. (one pharmacist I spoke with said that something like 80%+ of meds will cause headaches in a percentage of people). I really hope that you find relief soon, maybe once your body becomes better accustomed to its meds. You are certainly on enough of them, whew!

And I was also mean, so so so mean, on Prednisone. I'm a bit anxious on Budesonide, but nothing severe.
 
So glad I found this post! I just started imuran yesterday...a lot of my story sounds like your story, Kelly. Have I said that to you on other posts??? Anyway....I refused any more prednisone after 5 full months on it - with little improvement - but I gained almost 25 pounds and was a mean mean mommy to be around. I was searching on here to find out if Imuran causes headaches cause I've had a killer one since about 2 hours after I started this med. And, I've been really nauscous but figured it was from the vicodin???
Am so glad to here reassuring news about Imuran. I will stick with this and hope and pray for it to work with the Humira I'm also taking.
You should try taking it at night and see if that helps. I always had this faint background headache while on it. Since the remicade was working so well I stopped taking it.
 

DustyKat

Super Moderator
Hey Kelly, :bigwave:

Just found your thread, I hope all is going well with you and the Imuran!

All the best, :hug:
Dusty


In Australia my doc has prescribed 1 mg per kilo of weight which he says is the dosage. So he put me on 75mg cuz i weigh 72Kg. I have notice all you people from US and Canada are on like 150mg. Is that you weight or are you guys prescribed a different dosage. Just curious.
Hiya, I'm in Oz too and my kids GI always prescribes Imuran at 2mg per kilo. My son is still awaiting his TMPT assay test results and if he has the enzyme he will move up to 100mg, he weighs 50 kilos. Interesting to see the different take on things.

Dusty. :)
 
I was originally prescribed at 1.5-2 mg per kilo but I've been bumped up a couple times and now I'm on 250mg. My liver seems to be handling it decently, so I guess we'll keep truckin' till my doc puts me on the Allopurinol. When I start taking that I'll have to be reduced to a fourth of the normal dosage. The Allopurinol is supposed to trick my liver into converting the Imuran correctly I guess. **shrugs shoulders**
 

Entchen

Chief Dandelion Picker
Thanks heaps, Dusty! I've been on 100 mg since Tuesday and still no side effects; up to 150 (final dose) on Tuesday.

KS, are you finding added side effects on the higher dose of Imuran?
Edited to add: I see in another thread that you have not had side effects. Great! (Not so great that you system is now failing to respond to it as well, of course.) My GI emphasized that there are generally more side effects the higher the dose.
 
Sort of an opposite question, but since this thread is all about imuran...thought I'd ask it here. Does anyone know how long it takes for azathioprine to be gone from you system after discontinuing its use? How long does it have the ability to suppress your immune system?
 

Entchen

Chief Dandelion Picker
Hi all: I have a question. I have never called my GI to report a symptom. We've only worked via appointments (he's scheduled all appts except one, but that time he told me exactly what to look for and when to call to book the appt). I've been reading today that some of you do phone your GI with questions, and it seems to work very well. Here's the thing: I have evidence of GI bleeding (burgundy stools twice and some blood mixed with mucous once). There has been virtually no GI bleeding since starting on Entocort and Imuran 15 days ago and there was practically none for quite a long time before the meds change, either. Do I *need* to call my GI, or can this be a watch and wait situation? I am not sure what signals an emergency situation versus a "call the doctor" situation versus "make a note of it and mention at your next appointment." We have a provincial health information line, but I learned the hard way that they default to sending you to the emergency room pretty much whatever the symptom (cover themselves legally), so I am pretty sure I already know what the they'll say. Thank you!

Brian's Mom: Sorry, I don't know. The only information I could find was that the elimination half life is 5 hours.
 
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I did not have a good time on Imuran. I am on Remicade and when they added the Imuran my immune system was so suppressed and I was under stress that I broke out with the shingles. My doctor called the manufacturer and they said that it had happened to others but I was still one of the 1st 10 people to report it.

it was a very rare reaction and I am the only person who I have ever heard of to have anything like this happen. I am sure you will do fine as long as your doctor keeps a good eye on you.
 
yes as soon as it happend the doctor pulled me off. It only took a week but the effects of shingles last a life time.
 
Kelly - I would say if it's concerning you there's no harm in phoning your doctor/GI nurse.

If you are in pain or notice a significant increase in symptoms or bleeding definitely call your doctor ASAP.

I notice that my bathroom habits tend to change a bit depending on what I eat. If I eat corn chips 2 days in a row I tend to get mucus and backed up a bit for a couple days. Do you keep track of the things you eat? Have you been eating things different than normal that may have caused the change in bathroom habits?

Does your doc have a nurse that can answer your calls/questions? I felt bad in the beginning of taking Imuran because I was having sensitivity to heat and would break out in rashes occasionally and had to call my doc's office several times. I apologized to my nurse for calling so often and she said that's what she's there for. So, don't feel bad if you want to call your doc about changes you notice. They are there to help you. Best to report changes and be told everything is fine than not report things and get worse, right?
 

Entchen

Chief Dandelion Picker
Okay, thank you for the input! Things are about the same right now. You are right that I HAVE eaten a few servings of the same food across the past few days, that I hadn't eaten previously. Thought it was a "safe" food, but maybe not -- so, I'll watch and wait for now to see if things improve. If symptoms remain tomorrow or maybe the next day, I'll be sure to call.
Thank you again!
 
No prob, Kelly! It takes a while to start knowing what foods you can and can't eat. Especially when your body starts to normalize and you don't notice the effects right away. I am fine with certain foods (corn products or spinach for example), but if I eat them more than one day in a row there's definitely a change. I'm still figuring things out myself! ;) Hopefully it's just a food thing and nothing too concerning.
 
Kelly - my doc told me that if I have blood for more than 3 days in a row to call. However, I'm a big bleeder, so maybe for me that's not a big concern.

How's the Imuran working for you? I seem to be going in the right direction re: bowel issues - but I'm sick AGAIN!!!! Feels like I'm sick all the time anymore. So over having the cold or flu.
 

Entchen

Chief Dandelion Picker
Sorry for the delay in responding, Aliciars. Thanks for the advice -- it's gone away, hurray! No bowel benefits from Imuran yet but still pretty good overall on the lack of side effects. I've had a fever for the past 3 days, though. Have instructions to see my new GP again tomorrow or Saturday if the fever continues. I suspect it's a cold (it feels like a cold - minus the sinus symptoms thanks to the steroids), and I often have a fever for 6-7 days with a cold, so I am not concerned.

And, yup, I have a new family doctor as of today. When I started with my former doc one year ago, the plan was to stay with her for the long term, taking the good with the bad and working it out. However, the challenges have become too great compared to the benefits (and there were lots of benefits). New family doctor works full-time and doesn't require 4-8 week waits for appointments and, ahem, prescribes needed meds. This is coming from a girl who avoided even vitamins until Crohn's (except Tylenol or Tylenol PMS when necessary), because of a commitment to natural living as much as possible. I'm still into avoiding meds that aren't totally needed -- but there's a time and a place!

The turning point came yesterday. I learned that I'll need a gum graft in February. The periodontist recommended that I see my family doctor for a prescription for Valium to take just before the surgery. She also said that I might need to see my family doctor for Percocet after the procedure -- some people need it and some people do not. I burst into tears, right in the middle of the appointment, because I knew from experience (severe, debilitating pain in August while my GI was away) that the GP wouldn't prescribe anything for pain, let alone Percocet. Not to mention, her one day/week walk-in clinic would make her virtually unavailable, anyway. Knowing that I might not receive help for severe pain for a second time in 7 months was just too much (whether this level of pain happens or not, I want to be secure in knowing there's a plan). The dentist said, "sounds like you're looking for a new family doctor," and I disagreed. But I kept thinking about her comment and putting together the pieces of my concerns, and decided to make a change. Thankfully, a GP located just an 8 minute walk away is currently accepting new patients.

ps: I've also since learned that the emergency room in Canada is NOT only for life-threatening issues, as I've been told by multiple docs. If you are probably keeping the neighbourhood awake because of your cries of pain for more than a week and your GI is out of town and your GP doesn't do pain help... you're allowed to go to Emerg. You might wait forever, and the staff might believe that you shouldn't be there (according to my friend who works Emerg, among others), but you'll get help nonetheless. Noted.
 
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Dexky

To save time...Ask Dusty!
Location
Kentucky
Sorry you are fighting so many other problems while waiting for the Imuran to kick in Kelly. When does the new semester start? I hope you get some relief before then!!
 
Kelly,
Hopefully the imuran will kick in soon...it takes 4-6 weeks usually. By then you'll have a new GP as well so hopefully all will be on the up! Fingers crossed for you !! :))
 

Entchen

Chief Dandelion Picker
Thanks, you two!

Glad to have taken action -- sometimes to avoid looking like a flake I will delay making changes, but in this case I'm glad to have made the switch as soon as it was pointed out to me that a different kind of care is available. Am going to miss my former family doc on an emotional level, but on a practical level... well, I now have a Valium prescription for dental surgery day (thanks, new family doc!) and I'm in possession of full contact info in case of emergency.

Mark, school started on Tuesday, so I've been teaching with a fever, but that's okay! I crashed this evening but plan to get some errands and work done tomorrow.
 

Entchen

Chief Dandelion Picker
Hi, all
Just a quick update. I moved up to the full (150 mg) dose of Imuran on Tuesday. I've been feeling better and better in the past couple of weeks...not in terms of fewer washroom trips, but just generally feeling more "well" than "sick." Since Wednesday, though, I've been having shortness of breath and significantly more fatigue. Since I now have an *accessible* family doctor, and shortness of breath is on the list of "call your doctor" symptoms when taking Imuran, I called and left a phone message. At first it was just a feeling like I needed to take a deep breath over and over again, but today a four minute jaunt to the hair dresser left me panting and I'm "sighing" out loud (which for me is a sure sign of true shortness of breath). The last time this happened, it turned out that I was pretty anemic. Not worried, but glad to have a doc who I can share this with instead of simply being told "if you think it's an emergency, to to the hospital" (what about all the stuff in between?). :)
 
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I experienced what you call shortness of breath, at the beginning of taking Humira, Kelly. My doctor said it was most likely due to stress. He said I had a lot of new changes I had to deal with. It eventually went away on its own. Hopefully it's something similar with you. But, that's exactly how I had described what I was feeling. I wasn't really unable to breathe, but felt it necessary to take extra deep breaths because it felt like I needed more oxygen. I think I was still bordering on anemia at that point too. So, yeah. Stress or anemia. Better than other emergency situations. Thanks for keeping us posted :)
 

Entchen

Chief Dandelion Picker
Hey Mark! Thank you for checking in - I appreciate it! My FB posts rarely mention anything health-related. Still having shortness of breath, yes. It's persistent instead of waxing and waning, which is why I suspect anemia (this happened last time), but I haven't heard from my Dr. so I'm going to put up with it until it either clears up or shows on bloodwork. :)
 

Entchen

Chief Dandelion Picker
Hi all:

Quick update. Feeling great! GI's office called to see if I wanted an appointment this week and I said no way! She was delighted to hear that things are going well, although with some daily variability, and we agreed that an appointment after I have been on Imuran 3 months would be fine, rather than now, which is only about 6 weeks in.

Shortness of breath and fatigue have all but disappeared (as long as I get just a little extra sleep each night, or have an afternoon nap). My GI said it would get better once we got the inflammation under control, and he was right! Am hoping to get permission to stop taking all those iron pills every day! I haven't had this much energy in at least 2.5 years!!!!!

I'm also finished my 3 months on blood pressure meds (Blame Prednisone) and all looks good, even though I'm still on a steroid (Budesonide).

My hair is thinning and I'm finding more and more gray hairs (fluke? Nobody in my family goes gray this young?), but if that's the trade-off for feeling better then I won't complain.
 

DustyKat

Super Moderator
Thanks for the update Kelly.

It's fab to hear that you are feeling great! I am so happy for you, YAY!

Sorry, I don't know about the whole hair thing though. :eek:

I hope this feeling lasts forever Kelly, :):):)
Dusty
 

Entchen

Chief Dandelion Picker
Aw, thanks! Have I learned more about patience this year, and I was beginning to doubt just how "well" I'd be able to feel once we did find a med that works. The answer: very, very well! My GI won't love that my stomach still works overtime, but I could care less at this point; I figure continued healing will come with time. :)
 

Entchen

Chief Dandelion Picker
Hi all: Another short update -- still feeling quite well! My poor bathroom is full of hair and my vacuum gets clogged with hair (no exaggeration), but I actually think my hair style looks pretty good with thinner hair, because it's easier to get what's left to stay in place all day long (odd, but true?).

But I do have a question about a symptom: a pain located directly on my right side, just above the hip. For a few months now it has felt like there is a pulled muscle in that region, nothing terrible, but sometimes it hurts a bit to walk and it can definitely interfere with exercise. And for at least the past week, when I touch the area it feels like there is a large bruise (no visible bruising). I have experienced similar bruise-like pain in a spot on my abdomen, but this is my *side,* not my stomach, which seems odd to me (at which point the experienced Crohnsters give a chorus of groans and mutter...she'll learn!). Anyone with experience? Thanks!
 

DustyKat

Super Moderator
Hey Kelly,

Good to hear you are still doing okay! YAY!

That is where Matt's pain was. Although he had an abscess on the Psoas muscle they did say that inflammation of the terminal ileum alone can cause the muscle to also become irritated and inflamed as it directly overlays the TI region. Maybe it could be this??

Dusty. :hug:
 
Yah, I have no personal experience with this kind of pain, except when I had an abscess :(.

If it persists, of course, time to consult the doc. Hopefully it's momentary and will pass.
 

Entchen

Chief Dandelion Picker
Okay, I appreciate this info. I'll let my GI know about the pain at our next appt. in a couple of weeks time, then. It's difficult to know what to include on the complaints list and it's good to have help!
 
But I do have a question about a symptom: a pain located directly on my right side, just above the hip. For a few months now it has felt like there is a pulled muscle in that region, nothing terrible, but sometimes it hurts a bit to walk and it can definitely interfere with exercise. And for at least the past week, when I touch the area it feels like there is a large bruise (no visible bruising). I have experienced similar bruise-like pain in a spot on my abdomen, but this is my *side,* not my stomach, which seems odd to me (at which point the experienced Crohnsters give a chorus of groans and mutter...she'll learn!). Anyone with experience? Thanks!
This is actually how I got diagnosed! I get it right up under my right rib cage and into my back. I still get it during a flare....
 

Entchen

Chief Dandelion Picker
Hi all: Saw my GI this morning, and he seemed pleased to hear about the excellent improvement in stomach pain and fatigue...but agrees with people on here that I have either an abcess or a fistula (you people are good!). Will be having an MRI to determine which it is. Abcess will mean a procedure to "tie it off" and fistula might mean moving to a stronger medication. Not thrilled about either option, but I am praying it's "only" an abcess. I don't want to deal with fistulas. At least the "whatever it is" is still only a little uncomfortable, not painful. :voodoo:

I think I've mentioned my fabulous new family doctor previously. He is quite thorough, so on Saturday I'll be giving samples, having about 8 vials of blood drawn (it would be easier to tell you which blood tests he DOESN'T want drawn), and even getting an ECG. Not sure why the heart test, but I am so thankful to have someone who doesn't dismiss me like the former GP that I'll go along with his desire to stay on top of things and have a complete picture of my health.
 

DustyKat

Super Moderator
I second that!!! I hope too that it is an abscess only, do you know when your MRI is?

Keep improving hun and I will be watching for updates!

Take care, :hug:
Dusty
 

Entchen

Chief Dandelion Picker
Marisa, your info has been spot on and I appreciate that.

Dusty, the requisition for the MRI has been faxed in, but I might not have a date until a few days before the procedure. My GI thinks it won't be too long a wait, though!
 

DustyKat

Super Moderator
If you have a fistula (I hope you don't!) it would be situated in your ileum, is that right?

Dusty. :)
 

Entchen

Chief Dandelion Picker
Hi, Dusty
I just don't know. If the hip pain is related to the abcess/fistula, then the ileum could be the start point. GI appeared to wonder if they might be linked. Or, it could be that the fistula is entirely situated, ahem, further down (because the "hole" is in the perianal region).

xo
 

DustyKat

Super Moderator
Ah, that makes sense. I didn't want to have to say it but when you said about stronger drugs to heal the fistula I was going to say that if it is a cutaneous fistula then surgery would be your only option. :eek:

I guess the fistula could be either of those things. I would be inclined to think it was wholly further down but anything is possible ay. Maybe the hip pain is directly related to inflammation of the terminal ileum? (((shrug))).

Keep us posted Kelly and take care!

Dusty. :)
 
No problem, Kelly. :) Just glad things seem to be getting figured out for you! Should be interesting to hear what the MRI results have to say. I agree with Dusty that it could be possible that hip pain can be related to inflammation in the terminal ileum. I had pain in that area, but I also had an abscess there too, which could have been the main source of my pain. ;) My understanding is that abscesses usually form from existing fistulas, but maybe that was just how mine formed. It was explained to me that fistulas obviously connect areas that should not be connected and become infected from bodily fluids getting inside the cracks and then just sitting there with nowhere to drain. Yuck!
 

Entchen

Chief Dandelion Picker
Hi everyone:

My username has changed, but this is still Kelly's Imuran Thread. :)

MRI is scheduled for April 8. I still do not have pain, which is wonderful. I am not sure whether my right side feels somewhat worse or whether I am just catastrophizing now that there is a small chance it's part of an abcess/fistula!

Amazing outcome of recent bloodwork: everything is normal. I am so excited that everything outside of the abcess/whatever is going so well. No more anemia, no more misshapen red blood cells, no more raised platelet levels, everything checked out fine for the first time in ages.

I went to spin class and did 25 kms last night. My side complained at first and then settled down and I enjoyed my ride!
 
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Entchen

Chief Dandelion Picker
Hi again: Had the MRI this morning. I need new veins: getting an IV is the toughest part of any procedure. As in the past, the veins kept rolling (so now I have bruises popping up on both arms); out of options, a nurse finally the stuck the IV in the middle of my arm instead of in a more comfortable spot...ouch!

Not concerned about getting the results, really, because the area still isn't causing problems, so I will be request the most conservative treatment possible, whatever the options. My GI will have access to the images tonight if he is on shift, but the full report will take a few days.
 
Hi again: Had the MRI this morning. I need new veins: getting an IV is the toughest part of any procedure. As in the past, the veins kept rolling (so now I have bruises popping up on both arms); out of options, a nurse finally the stuck the IV in the middle of my arm instead of in a more comfortable spot...ouch!

Not concerned about getting the results, really, because the area still isn't causing problems, so I will be request the most conservative treatment possible, whatever the options. My GI will have access to the images tonight if he is on shift, but the full report will take a few days.
I had a bad IV day with my last remicade infusion. It took them 9 tries to get it. My arms still look terrible. I look like a domestic abuse victim. Thats what I get for doing it at the local hospital instead of the Bioclin.
 

Entchen

Chief Dandelion Picker
9...9....:yfaint:

Brave, brave woman. I can understand not wanting to make the drive to the infusion clinic, but 9 pokes would be an awful lot to bear. Do you think you'll give the local place a try again, or was once enough?
 
9...9....:yfaint:

Brave, brave woman. I can understand not wanting to make the drive to the infusion clinic, but 9 pokes would be an awful lot to bear. Do you think you'll give the local place a try again, or was once enough?
I live in Grande Cache, so I have to go to Grande Prairie or Edmonton for the infusions. Which is ok because I visit family in Edmonton sometimes.

Its funny because I did it in town back in Dec and it took them 4 tries. So when I went on April 1st I thought how much worse could it get than 4 times. Well I was sure wrong about that. I was going to walk about after the 5th try, but my remicade was already mixed so I had no choice but to endure their terrible IV attempts. Everytime I go to the Bioclin they get it on the first try, so I know its not me. In fact its only happened at the GC hospital. I have been sick and dehydrated and it has not taken more than twice ever.

I dont know if I will ever go back, but with rising fuel prices I may not have a choice.

I know if I do I will drink 3 large glasses of water before I leave, and I will put on a bunch of layers so I am hot when I get there, and I will demand a hot pack for my arm as well as some Amla patches. Seriously.
 

Entchen

Chief Dandelion Picker
I can understand you needing to make that choice. In time, maybe their skills will improve (are you able to request someone new after a couple of failed attempts?). I had never experienced the warm towels before today; I imagine they helped, but even if they didn't, sitting for a few minutes with warm towels wrapped around my arms was a nice break from the pokes. At the U of A hospital a while back, I got repeated pokes from someone who was increasingly frustrated, but today (Grey Nuns), treatment was far more gentle and no single person tried more than once. The needle that took was placed in the middle of my arm (I didn't even know they did IVs there!), and it's really tender now but at least they got a vein, somewhere, to work. But it's going to be a long-sleeves kind of weekend.
 

Entchen

Chief Dandelion Picker
Hi all: It's a fistula. It's small and located in the perianal region, so (happily) the hip pain is unrelated (just another Crohn's ouchie, no big deal).

I haven't spoken with my GI yet, meaning no plan in place as of yet for how to move forward.

Interestingly, the radiologist also tentatively diagnosed polycystic ovarian disease. There is not sufficient evidence (one MRI alone), and since I deal with the pain by taking Depo Provera, anyway, there's no need to pursue this further, at least not at the present time.

I told the GP I met with that it's like a 2-for-1 special, going in about a possible fistula and coming out with that AND a possible additional concern. :oops:
 
I am so sorry its a fistula. FWIW my fistulas responded really well to remicade. I hope they find a treatment to close it up fast.
 

Entchen

Chief Dandelion Picker
Aw, it's good to hear from you Mark. I do still feel good most days, actually pretty great many days, and we'll get this straightened out.
 

Entchen

Chief Dandelion Picker
Hi, all, and here's an update:

We've decided not to act on the fistula for now, to see if the Imuran will take care of it. It has been "acting up" less lately. There were strong signs of infection for a couple of months, but that has mostly cleared.

On the downside, in June I mentioned a swollen area near the fistula, with what felt like a lump inside, to my GI. We agreed to wait on that, too, unless things progressed. Last night, it started expressing (sorry for the details) fluid and blood. Quite a lot of it. Drat. There is some drainage today, too. Guess I'll have to phone and let them know that we might have a second abscess / please don't be a fistula to deal with. My GI suggested that we should explore the biologic treatments if a second fistula appears, but with my quality of life SO improved now (virtually no pain!) I am hesitant to take that leap even if this does turn out to be that second fistula. Then again, I do need to be able to sit down, and at this rate I might be bringing a pillow to sit on everywhere I go. :p
 

DustyKat

Super Moderator
Hey Kelly, :bigwave:

Thanks for the update hun.

Excellent news about the fistula...:) But so sorry to hear about another abscess...:(

I am hoping right along with you that it is not a fistula. I guess the big plus with the biologics is they can be very successful with perianal disease.

:goodluck: mate. I have everything crossed for a fab outcome!

Much love, :Karl:
Dusty. xxxxxxxx
 
Hmm...I hope things get figured out quickly. Maybe a quick bout of antibiotics will get the abscesses to go away. Do you think you'll have to go through more tests to determine if it's another fistula?
 

Entchen

Chief Dandelion Picker
Wise advice from both of you. :eek:

Best guess is that another MRI will be ordered, but I'm hopeful that we will instead do antibiotics if needed and then simply watch and wait. My message for the GI emphasized that there's very little discomfort.

Dusty, you are so right that biologics can solve the problem...but I see so many other problems and potential problems popping up. Namely: I work contract and might not get future contracts if I have to cancel class for treatments. Oooh, but that said, I made the teaching honour roll "with distinction" for teaching child psych in May/June. :blush: So maybe getting more contracts won't be as bad as I worry it could be.

In the meantime, I'm going to curl up with healthy pizza and listen to the thunderstorm and not be too concerned.
 

Dexky

To save time...Ask Dusty!
Location
Kentucky
It's good to hear you feel so well K, despite the other problems. I hope you can get the abscess cleared up w/o having to change anything. Good luck!!
 

Entchen

Chief Dandelion Picker
Thanks!

Dex: You rock. Appreciate the support.

Marisa: Oh, yes. That's the planned request if it comes to that. Don't let me forget! (lol)
 

Dexky

To save time...Ask Dusty!
Location
Kentucky
I know how you feel K! Imuran gave you so much relief, I know you don't want to believe it may not be working. EJ felt great the whole time he was on 6mp but the bloods and eventual scope told another story.
 

Entchen

Chief Dandelion Picker
Hi: Just realized I neglected to post an update. GI is not concerned about treating the abscess unless it enters the bloodstream. Great! I'd read that many insist on draining it to make sure all of the infection gets out, but he is just so laid back about these things, which I appreciate (I prefer not to act unless needed as Crohn's is enough of a part-time job as is!). I can't say for sure that the abscess will not cause further problems, but for about a week all has been quiet on the Western front. This certainly cuts down on my concerns that it could be a fistula.

/relief!!!!

ps: Can now feel what the MRI spotted back in April: a small area of inflammation in the large intestine has returned. It's only a small spot on my stomach that hurts to the touch (feels like a bruise), but I really hope it settles back down again.
 

Dexky

To save time...Ask Dusty!
Location
Kentucky
I see you're back on your summer sleep schedule Kelly!! Don't get too complacent about that stomach pain! Perhaps it is time to consider the bio's. I know you prefer the wait and see method but abscesses and inflammation...well, just don't let them get out of control before you take action. I'll add my vote to Marisa's on the Humira:)
 

DustyKat

Super Moderator
Hey Kelly!

Yeah, Matt's GI went straight in and drained his abscess and left a drain until they could do a sinogram to confirm if there was a fistula present.

I hope all settles down hun, both with the abscess and pain. :goodluck:

Thinking of you mate, :Karl:
Dusty. xxxxxxxx
 
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