Undiagnosed with questions

[Trudy]

I have been visiting your forum for a few months. I appreciate the dedication of the members, value your knowledgeable information, but love the humor amidst hardship. I do NOT have a diagnosis of WG. I found this forum through researching ANCA. In the past year and half I have had a low positive ANCA (both MPO and PR3), an inflamed liver, an inflamed bowel twice, an inflamed thyroid, inflamed right lung, vascular rash on thighs and separate time on lower back, kidneys bled once, continual tinnitus, loss of hearing for short periods in right ear, reoccurring nose sores and nose bleeds, and lately pressure behind my right eye with occasional double or blurred vision. Most of my problems are on the right side of my body (drop foot which has improved, trigger fingers, and polyneuropathy). CT scan showed one lung nodule. In 1995 I had a brain MRI looking for MS, but they said it only showed severe sinus infection which I did not think I was having trouble with. In 1998 I was diagnosed with Lupus (SLE) mostly due to a positive anti-Sm. I am reactive to both sunlight and florescent lighting.
I seek your collective input on two things if possible. First I am scheduled for a brain MRI with contrast on Monday, and would like to know if anyone has had trouble with contrast dye? Secondly, both my PCP and Rheumatologist have mentioned Methotrexate recently. I read that anyone with an eGFR of 50 or less should not take this medication. Since I have had kidney problems since toddler years, I am very protective of them. My kidney function is currently at 52; does anyone have experience in the safety of this drug?

[Sangye]

Hi Trudy, welcome to the group. I don't have much to add other than to suggest that you speak directly to the radiologist where you're having the MRI. S/he can guide you as to the safety of the contrast dye. I also suggest having the MRI done at a major hospital versus an outpatient MRI facility, since I don't think the radiologists in such facilities have the same expertise to guide you. I assume you have a nephrologist with chronic kidney issues. They would be the ones to ask about methotrexate.

[Jack]

I have had a kidney transplant and they are always cautious with the use of dyes. They use the minimum quantity and then feed me on detox drugs afterwards while I drink as much as I can.

[Fran]

Hi Trudy, I have in the last few months had two nuclear scans with dye contrast with both, one was a full body bone scan, and one on the neck and I have had no problems with the dye at all - you just have to get plenty of liquids into the body to flush the dye out.

Good luck with everythinghttp://www.wegeners-granulomatosis.com/forum/images/editor/smilie.png (javascript://)

[Jack]

I wish I knew the name of the drug they gave me to clear it out. I believe it is usually used for people who have taken overdose and a couple of the nurses were concerned that I had done something stupid!

[elephant]

Welcome Trudy, hope you start to feel better soon. Sounds like your have symptoms of Wegeners Granulamatosis. Have you seen a Wegeners specialist? There is a list of them on the Vaculitis Foundation website. I go to Cleveland Clinic in Ohio and see Dr Langford. I am so glad I did. Wishing you the best!

[JanW]

Welcome Trudy, the only thing that I can say about contrast dyes is that Dr. Peter Merkel, a noted WG specialist out of Boston University, said that WG patients should avoid them if at all possible. Given you particular set of circumstances, I do think you will have to ask your doctor.

[Sangye]

There are 2 main reasons for limiting contrast dyes in those without kidney involvement: 1) they increase the radiation exposure, and 2) the more they're used the more likely it is to become allergic to them.

They use a different type of dye in CT scans versus MRI scans. I believe the CT dyes are harder on the kidneys but don't quote me on that.

[drz]

There are 2 main reasons for limiting contrast dyes in those without kidney involvement: 1) they increase the radiation exposure, and 2) the more they're used the more likely it is to become allergic to them.

They use a different type of dye in CT scans versus MRI scans. I believe the CT dyes are harder on the kidneys but don't quote me on that.

I was on Metformin for diabetes and contrast dye is a no no with that drug. Even though I had stopped using the drug a couple days before, I lost a lot of kidney function when I had to have the scan twice in one week. I don't remember any problems from MRI scans.

[Trudy]

Thank you for your suggestions. I am having the MRI done at a major hospital in Chicago. Evidentally they need the contrast for whatever they are looking for. I had a lung CT with dye in March, but they premedicated me with 150 mg Prednisone and Benadryl. I take Plaquenil for SLE, and have been taking 15 mg of Prednisone for a few months. I have been trying to read lots of this forum. Other than the drugs you all take, I can easily relate to your problems and symptoms. Cleveland Clinic is often mentioned. It is covered under my insurance, but would I need a diagnosis of WG to go there?

[pberggren1]

I am sure anyone can go to the Cleveland Clinic. It is world renowned.

[elephant]

Trudy, no you don't have to have a diagnosis of WG, If you doctors local Rhuemy suspect WG or other autoimmune disease, it is good to see a specialist to get a second opinion. Just need to have your doctors fax your records ( Ct scans, labs or surgical reports..ect) to the doctor that you want to see at Cleveland Clinic. Once you make an appointment they will go over it with you.

[Sangye]

Trudy, why did they pre-medicate you for the CT with contrast? Have you had an allergic reaction to it before, or an allergy that worried them? Otherwise I've never heard of that. Benadryl is no big deal, but you should use caution getting huge doses of pred like that unless it's necessary.

[Trudy]

I'll try to make a long story short. Since early childhood I have had chronic problems (anemia, asthma, kidney, allergies). At 41 after my last child was born I had severe mobility problems. It took 8 years for a diagnosis of SLE. Six years later my daughter was diagnosed with SLE. We share same blood type (A-), have most of the same allergies, and similar reactions to drugs. Most chemicals give me trouble, even simple things like food coloring. Her initial bout with SLE was triggered by dye during CT scan; they thought she had appendicitis which was really an ovarian cyst. So after a year of different organs being inflamed and bad labs, doc decided it might be the lesser of two evils. We both go to the same lupus specialist.

[Sangye]

Yes, that makes sense then. I'm so sorry for all that you and your daughter have gone through.

[Thakator]

Hi Trudy,
While this response is too late to help you with your original question regarding the potential consequences of having to submit to the dye accompanying your MRI, I will make it anyway for the sake of other readers who may be wondering - - and for your sake inasmuch as you may likely be asked to undergo other scans along the way.
One of the responders mentioned that the MRI dye is not the same as that which is customarily used in a CT scan. That's true and the difference can be significant. For the MRI, it is usually Gadolinium, for a nuclear dye test and scan it is usually MIBG and for CT scans it is usually Isovue 300 (30%iodine). Please keep in mind that I say "usually"; your doctor can request differnt dyes. I now get only the Gadolinium with CT scans because of my having a bad experience with the Isovue.
When I went for my first CT scan, I was told that there needed to be an IV contrast and was asked if I were allergic to anything; never had been so told them to go ahead. Bad move - - I mmediately went into full blown anaphylactic shock, stopped breathing and, were it not for the fact that the scan room was two doors down the hall from the ER, may very well have not survived (was told afterwords that I had only a few seconds to go before being revived). That was on the Isovue. I've had no problems with the other types of dye (including the nuclear stuff), each of which I've taken since that troublesome first experience.
Hope that this might be of help to you in the future and that you are doing well. Ron