MTX vs Imuran vs Humira

**manalolana** · 08-13-2012, 07:05 PM

Aloha everyone!!

Wanted to get your input.... I have been on imuran and predisone for a few years now; pred for 3 years and imuran since last year. Been adding different medicine on top those two in the lat two years without much success. My doc in Honolulu suggested that I go back to Mayo last December and the Mayo Doc suggested that I try Humira since that is the only immunosupressent that I have not tried other than RTX. It's scary that every ANCA test in Honolulu comes back negative and Mayo reviews the same samples and/or take new tests and my ANCA cells are active.

In any rate, I have been on pred, imuran daily and Humira weekly since January of this year. Experiencing side effects of Humira which is painful muscle aches and still not in to remission. I was thinking about perhaps going back to MTX which is the first med that I tried.

Any recommendations you may have to share would be greatly appreciated.

**pberggren1** · 08-13-2012, 10:56 PM

So you are not in remission?

What symptoms are you having? What is your ESR and CRP at now and over the last few months?

How much pred are you on?

I would not worry about the ANCA. I would be more concerned about your symptoms and trying to taper the pred.

**manalolana** · 08-14-2012, 08:45 AM

Thanks Phil for responding!!!

My symptoms still are... low to high grade fever daily, red dots that comes and goes on the lower part of legs which also treated my derm, fatigue, swollen eyes, congestion and now adding muscle aches.

Sed rate i don't recall being ever out of ordinary level. With compliment, it varies but usually on the lower side our of normal range. Its odd with the complement test which apparently from what I understand measures how inflamed you are, the test results do not always match how I feel. My doc at Mayo said complements are not good indicators. So I don't know what to look at to see how I am really doing. I still think i may be imagining in my head that I like to quantify things

**manalolana** · 08-14-2012, 08:46 AM

Sorry forgot the ? on pred. I try to stay under 10mg. It ranges to 5-20.

Originally Posted by manalolana

Thanks Phil for responding!!!

My symptoms still are... low to high grade fever daily, red dots that comes and goes on the lower part of legs which also treated my derm, fatigue, swollen eyes, congestion and now adding muscle aches.

Sed rate i don't recall being ever out of ordinary level. With compliment, it varies but usually on the lower side our of normal range. Its odd with the complement test which apparently from what I understand measures how inflamed you are, the test results do not always match how I feel. My doc at Mayo said complements are not good indicators. So I don't know what to look at to see how I am really doing. I still think i may be imagining in my head that I like to quantify things

**KathyB** · 08-14-2012, 09:36 AM

Wow, manalolana. I'm still on 5 mg Pred and I'm approaching one year--and I thought that was a lot! Everything I've read suggests getting off Pred from 6-18 mos. Aside from the two Rtx treatments, Pred is all I take. But my immunoglobulin levels are now low indicating some possible adverse affects from the Rtx. I may not be able to take it again. I hope you are able to get things under control soon!

KB

**manalolana** · 08-14-2012, 12:26 PM

Congrats Kathy! That is awesome!

I just realized that I have been ill for going on to 4 years this December. Ha!

I believe despite the dosage nor duration, if it is happening to you, it's a big deal. I hope you get to getaway from pred sooner than later!!!

Warmest Aloha!

Originally Posted by KathyB

Wow, manalolana. I'm still on 5 mg Pred and I'm approaching one year--and I thought that was a lot! Everything I've read suggests getting off Pred from 6-18 mos. Aside from the two Rtx treatments, Pred is all I take. But my immunoglobulin levels are now low indicating some possible adverse affects from the Rtx. I may not be able to take it again. I hope you are able to get things under control soon!

KB

**pberggren1** · 08-15-2012, 12:15 PM

Those sound like Wegs syptoms to me. Better call the mayo doc ASAP.

Ya, C3 and C4 are not inflamation markers.

**Sangye** · 08-16-2012, 03:27 AM

Those symptoms sound like active Wegs to me as well. I also think you should call the Wegs specialist again. (BTW the reason your ANCA results differ locally and at Mayo are because Mayo's labs are highly trained in performing the test. Always go with Mayo's results.)

**HopeinTN** · 08-16-2012, 03:33 AM

Aloha Manalolana!

I hope you get to feeling better soon. I was diagnosed Oct 2011, and started with 100 mg Cytoxan/60 mg pred/Bactrim EOD. Last month I went down to the 50mg Cytoxan one day and 100 mg EOD. I'm now down to 3mg Pred and decreases by 1 mg each month. I will be on Cytoxan beyond the one year mark.

Good luck to you and please keep us updated on your situation.

Katrina