Couldn't take Imuran

[Debbie C]

I was precribed Imuran 50mg. and took it for about 4 days....I was having such a hard time trying a catch my breath and was getting dizzy that last nite I just couldn't take it anymore so I didn't take it. I am still having a hard time breathing this a.m and I noticed that I have a rash on the back of my upper arms. I called my rhuemy but he is in a meeting until 2:00. Has anyone else had this reaction to Imuran and if so what other drug are you on now?

[Chris G]

I couldn't take imuran either. But for me it caused gastrointestinal issues. What you describe sounds like an allergic reaction. Maybe you should take some benedryl to reduce the allergic reaction.

I'm currently taking Cellcept - 1500mg daily. Have had rtx infusions as well.

[NicShaf]

I also couldn't take Imuran, I'm in the small percentage of people who don't have then enzyme to digest it, and it would have caused problems. I agree with Chris, that sounds like an allergic reaction. I hope you can get a hold of your doctor soon to see what you should do, if not, if it were me I'd go to the ER, especially if you're still having trouble breathing.

I'm on Methotrexate instead, 12.5mg weekly.

[ArlaMo]

I couldn't take it either - my issues were almost immediate vomiting and diarrhea. Cellcept was my alternative.

[Al]

I was precribed Imuran 50mg. and took it for about 4 days....I was having such a hard time trying a catch my breath and was getting dizzy that last nite I just couldn't take it anymore so I didn't take it. I am still having a hard time breathing this a.m and I noticed that I have a rash on the back of my upper arms. I called my rhuemy but he is in a meeting until 2:00. Has anyone else had this reaction to Imuran and if so what other drug are you on now?
Debra--most complaints about Imuran are related to digestive difficulties. This does look like an allergic reaction. Please do complain to your doctor. In either case, the recommended alternative in CellCept.

Al

[Debbie C]

Yea I have been having stomach issues for awhile..I went and had a endoscopy done last week, I go Thursday to get the biopsy results. The Dr. that did the procedure also prescribes Imuran to his patients and he told me I should have a tpmt blood test done first to see if my body will metabalize it so I don't have side effects.I told my rheumy that and he said I didn't need it...well quess what. When I got in touch with him about me stopping it because I was having breathing problems he said he would not prescribe anything else until he sees me.Well my next scheduled appt. isn't until April 9th and he is all booked up until then,so am stuck just taking steriods for another month.
I checked out that Cellcept on the computer and that looks pretty scary too as far as patient reviews.
I also read where folic acid supplement is good to take and another doc. I see said that fish oil vit. is good...anybody take those?

[Chris G]

Yea I have been having stomach issues for awhile..I went and had a endoscopy done last week, I go Thursday to get the biopsy results. The Dr. that did the procedure also prescribes Imuran to his patients and he told me I should have a tpmt blood test done first to see if my body will metabalize it so I don't have side effects.I told my rheumy that and he said I didn't need it...well quess what. When I got in touch with him about me stopping it because I was having breathing problems he said he would not prescribe anything else until he sees me.Well my next scheduled appt. isn't until April 9th and he is all booked up until then,so am stuck just taking steriods for another month.
I checked out that Cellcept on the computer and that looks pretty scary too as far as patient reviews.
I also read where folic acid supplement is good to take and another doc. I see said that fish oil vit. is good...anybody take those?

I'm very concerned that your doctor said you don't need the tpmt test prior to starting imuran. It's considered routine prior to taking imuran. The enzymes Nicole spoke of, are measured by that test. It's concerning to me because it may be a reflection of your doctor's knowledge about the disease and the drugs. Are you comfortable with this doctor's knowledge and expertise?

[HopeinTN]

I take fish oil daily to help lower tri-glycerides. No one has told me to stop taking it.

[Debbie C]

I just started seeing this doc..actually I've seen him twice.And I'm not too sure about him but he does come down from Cleveland..he worked at the clinic for awhile now he has his own practice in Beechwood.There are no Drs. where I live that have knowledge of Wegener's and if they do they don't take Medicaid which I'm on.I have seen a Dr. at Cleveland Clinic but I can't get there often so I'm kinda stuck.

[Sangye]

The TPMT test is routine. Standard of care. Personally I would not step foot in that rheumy's office ever again, not even for a single appointment. It was extremely reckless to put you on imuran without doing the test first. Even someone with a favorable TPMT can have a reaction to imuran, but it does protect a lot of people.

Even rheumys who don't know Wegs know to do the test because imuran is used to treat many other AI diseases.

How often can you get to CC? If you can only get there every 3-4 months you could still be treated there. See about finding another local rheumy who'd be willing to work with CC. Even if they don't know Wegs, you'd still be way ahead.

[Sangye]

I take fish oil daily to help lower tri-glycerides. No one has told me to stop taking it.
Fish oil is also anti-inflammatory and has numerous other benefits we need. Nothing wrong with 2-3 capsules a day of fish oil.

[HopeinTN]

And I take 3 daily and eat lots of Salmon. Be sure to get the ones that say something about "No Fish Smell/Taste" or "No Fish Burps".

[Debbie C]

what about folic acid supplements? I read an article by some reseachers that it is good for people with wg but I never tried it although I do have a bottle sitting on my dresser

[Al]

what about folic acid supplements? I read an article by some reseachers that it is good for people with wg but I never tried it although I do have a bottle sitting on my dresserFolic acid is particularly useful, Debra, as a supplement when methotrexate is taken ((MTX depletes folic acid). Most people, including Weggies, get enough in their diets. Fish oil is good for many reasons. But neither is an alternative to the nasty drugs--sorry!

Al

[Lightwarrior]

Fish oil is also anti-inflammatory and has numerous other benefits we need. Nothing wrong with 2-3 capsules a day of fish oil.


Wow, I am doing something right, Yeah fish oil

[pberggren1]

Oops, I think I have the wrong oil. I thought I was supposed to take castor oil but am taking Castrol oil.........lol. NOT.........lol.

At least I am well lubricated and dont' need an oil change for another 10K miles........lol.

Any other oils we should be taking? ha ha

[Lightwarrior]

[QUOTE=pberggren1;559

Any other oils we should be taking? ha ha[/QUOTE]

Just something to oil your bat wings Phil