Imuran and rashes

[michellew]

Has anyone developed a rash(s) while on Imuran? I'd only been taking 50mg/day for ~2 weeks and developed a red, hot, itchy rash on my face. The Gi clinic was "too busy" to see me, so I saw my GP who recommended that I stop taking the Imuran. I'm going to go off it for a week to determine if the rash is Imuran related, if it goes away during that week - we know the cause.

Has anyone else experienced this??

Thanks
Michelle

 

[toml99]

Well, here's my two cents, for what it's worth. Apparently a lot of people initially develop side effects to new medications, but the side effects often go away after awhile. My nausea from Imuran lasted about a month, and my eye twitching from Pentasa lasted about two months. I'm now two months into the Imuran and I still have some short term memory issues from the Imuran, but I've noticed in the last week they seem to be getting better also. Not sure if it's a good idea to continue taking the Imuran with the rash, especially since you were on a low dose. It may be indicative of a high sensitivity you have to the medication. I suggest you get back to your GI clinic as soon as you can, as they should have the experience in dealing with this sort of issue.

 

[CLynn]

I notice that I feel itchier than normal, but haven't noticed an actual rash. My biggest complaint is tiredness....but be very cautious just coming off the medicine, willl be a shock to your system.

 

[michellew]

Thanks, It's been over a week and the rash went away within 4 days of stopping the Imuran. I've sent a fax to my GI asking for an appointment sooner than my 8 week recall. I don't expect to see anything from them regarding an earlier appointment. The other alternative to taking Imuran was Methotrexate or moving on the the 'big guns' (Humeria or Remicade). Now it's a waiting game to see when/if I can get in sooner than early April.

Michelle

 

[CLynn]

Well glad to hear the rash is gone. Keep us posted!

 

[michellew]

Thanks CLynn,
I have a host of other allergies, so I wonder if being overly sensitive to other things brough about a sensitivity to the Imuran. Bah, who knows. I just wish the GI Clinic would at least acknowledge that they rec'd my fax (sent a week ago today) and provide me some guidance. I am still taking Entocort, 3mg/day (tapered from 9mg/day) and asked in that same fax about upping the dose and getting the script from them...but, nothing....sigh

 

[CLynn]

Oh, I know. My new G.I.'s office help is awful about not doing what they say they will, whether it is calling in RX's or what not, drives me insane. I couldn't tolerate Azacol, so stopped taking it and called them, when I finally heard back 2 weeks later, the woman said "Just stop taking it"...I told her I had already, so what should I take now? She said, "Well, I have no written instructions for you to start anything else, just talk about that on your next visit"....sucks, sometimes I feel like I know more about the disease and treatment than the office does.

 

[Kev]

Hey Michellew

Sounds exactly like what I went thru on AZA (Imuran) with the exception that I also had crippling joint pain head to foot. Went to the ER, they took me off the AZA ASAP, and within 2 days the pain faded... but the rash lasted over 10 months. Like you, I was also running out of options... because of other medical issues from my past, my GI didn't see Methotrexate as viable, and Remicade was iffy (let alone trying to come up with the money to pay for it.. I was too sick to work back then, and I no longer had any private health coverage.) Humira hadn't been approved in NS (this was early 07), so my GI agreed to trial me on LDN. The rest is history. I've been on it since late Nov of 2007, and am doing fantastic. There are 2 pharmacies in Halifax that compound it, AND my GI now has 5 patients on it, and she presented a report to other local GI's on it not that long ago. Just thought I'd toss that info out there for you in case you're interested.

 

[michellew]

Kev - Are you in Halifax?
I mentioned LDN to my GI at my last visit, and he was honest, that he wasn't too familar with it. I think I might print off some information and drop it off to him. I'd prefer to NOT go the Methotrexate route if I can help it, so maybe straight 6MP may be an alternative. Fortunately that I have a medical plan, but, I would need to submit for "Special Access" for either Humeria or Remicade, which would take about 8-10 days and needs to be completed by my physician.
I think that I am extremely fortunate that my disease is in its "infancy", and classed as mild, but I've determined it's stubborn as heck to try to subdue!! I've managed to gain some weight back since I first started to get sick - so I don't look like a stereotyoical chronie.
Ok, I'm rambling....
Michelle

 

[Astra]

Yeah Michelle, me!
Bleeding, itchy hives all over my body within 6 weeks with Aza, my gastro was so shocked!
He said I was allergic to it, so we switched to 6MP, exact same thing happened.
xx

 

[Kev]

Yes, Michelle.. Good old Halifax, NS. Canada... I used to have a medical plan, but my IBD ended my career (at that time) and my coverage. I've heard (but it is all anecdotal) that some insurance providers HAVE a pre-set agenda... meaning that they tend to dictate the progression of meds in treating this disease. Now, that may have been US Crohnies who were talking (I can't recall who, when, where, etc..). Have you discussed with your GI if there is a ramp up process involved... meaning you have to try metho before you can try Remi or Humira, etc.. (again, I've heard stories long ago to that effect)... else insurance won't cover it. They (supposedly) prefer Dr's take the step up approach... not because it is cheaper for them.. but because it is traditional. I could have hallucinated the whole thing. My GI works out of her office AND the QE II IBD clinic.. so if your GI asks around, he should have no problem hearing glowing reports about LDN. However, LDN isn't covered by insurance, so it'll cost about $1- $2 per day.

 

[michellew]

Yikes Joan, and I thought that my facial rash was bad, but to have bleeding hives.....maybe I won't be able to do the 6MP afterall

Kev - I'm not sure if Blue Cross requires that I try ALL the alternatives before moving onto the biologics. I really hope not, this whole process has been long and exhausting, and to only be on 3mg/day of Entocort isn't cutting it. I haven't had the opportunity to discuss ANYTHING with my GI, he was 'too busy' to see me when I had my reaction, followed by a week of vacation (his), and now it's just a waiting game to see if I get ANY response from my fax sent a week and a half ago. Nice to know there is someone local on here!!

 

[Kev]

I was very fortunate.... my GP is the greatest, and he has gone above and beyond for me EVERY time I've gone to him... AND he has seen to it that I get seen by the 'best' of the specialists in the area.. Now, it took a year on a waiting list to get to see my GI for the 1st time, but it was worth the wait. Now, when I 1st got ill, I went to the best GI surgeon in the area; then went to the 2nd best for a 2nd opinion (again, thanks to my GP).
Maybe a 2nd opinion of sorts might help in your situation...

 

[michellew]

Kev,
Would you mind PMing me your GI's name? I want to see if I can get my GP to refer me to someone else. Once you finally got in to see that GI, how was it to get return appointments?
Thanks
Michelle

 

[michellew]

I finally heard from my GIs office yesterday, I'm scheduled into clinic next week...phew...that only took 2.5 weeks to get a response!!!

I wonder if I should ask about 'challenging' the Imuran again, starting back up at 50mg/day and see if the rash comes back. Or I wonder if he'll recommend moving to Methotrexate rather than restarting Imuran or 6MP. sigh....the possibilities are endless.

 

[Kev]

You stopped the imuran, and the rash went away within 4 days. I don't think any doctor is going to chance it, simply because... well, it's either a massive coincidence OR a warning of the potential side effects of imuran. Those are not to be ignored. Tho rare, some of the issues that can happen from imuran ARE far worse than crohns. There is an aggressive form of melanoma, kidney cancer, liver as well (I think), plus a few others. The doctors briefed me again on them when they took me off imuran. I've had one close call with the melanoma already, and the colo-rectal cancer potential that my dr's are scoping me every 6 months for is another example of the sort of things that might come from a very bad imuran experience. I'm not trying to scare you; its just that so many of these 'potentials' are buried way down deep in the drug company disclaimers.

 

[michellew]

Thanks Kev,
I really appreciate your (and everyone else's) insight. This is all so new to me. I wonder if I should try to get back in to talk to my Immunologist, but, I suspect I may need another referral for her since it's been about a year since I've last seen her. It's bad enough that I carry an EpiPen with me at all times, I guess I really shouldn't 'push' anything by even thinking about Imuran again.
Thanks again Kev
Michelle

 

[Kev]

Yeah, I hear you. This damned disease has a steep learning curve. When I was 1st dx'd, I'd never heard of it...

But, I don't want to poison the well on AZA (Imuran). I had a bad experience, but I'm sure there are any number of people on here who use it AND with good results. The best idea is to educate yourself on the risks, talk to your doctor, look into all your other options.

 

[michellew]

I saw my GI yesterday, and I am now trying the Methotrexate. I had my first injection last night, and so far, the only side effect is tiredness. I hope that's the ONLY side effect I get.....There was talk when I go back to see him, if there has only been moderate improvement, they'll bring Remicade or Humeria into the mix...

Michelle