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 everything

[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?