MTX vs Imuran vs Humira

[manalolana]

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]

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]

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]

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



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]

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]

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!




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]

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

Ya, C3 and C4 are not inflamation markers.

[Sangye]

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]

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

[manalolana]

Thanks Phil. My doc is out on vac till 8/26. Have appointment to see her the next day.


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

Ya, C3 and C4 are not inflamation markers.

[drz]

Have you tried a higher dosage of the Imuran? I had to increase my dosage from 150 to 200 since I flared at the the 150 mg dosage. At 200 mg it seemed to get control of my symptoms and Wegs but then I had to cut back to 175 mg since my liver enzymes got too high. I also had to cut back on a cholesterol drug that was also metabolized by the liver.

My pred was tapered to 5 mg and has remained at that level for many months. My lab work has been good and symptoms seem controlled at this dosage so I have been considered in a drug induced remission for over a year now despite several minor surgeries. Hope they find something that helps you feel better!

Aloha.

[jola57]

This is active wegs. All symptoms show that you are sliding back so do get to your Mayo doc. BTW, I would seriously talk to the lab that constantly shows negative c-ANCA while the one at Mayo is positive. The lab needs to check its procedures and should stop doing the test until it gets consitent correct values. If you have more than one test that was wrong and correct at the Mayo, take copies and show to the lab manager. Don't leave it with a lab tech but insist on seeing the general manager. Goodnes knows if other tests are done incorectly as well. You maybe saving a life.

[manalolana]

Hi drz,
Mayo wanted to try higher dosage of imuran so we did. I was on 125 which apparently was high for my body weight. Unfortunately it didn't help me but hurt my liver.


Have you tried a higher dosage of the Imuran? I had to increase my dosage from 150 to 200 since I flared at the the 150 mg dosage. At 200 mg it seemed to get control of my symptoms and Wegs but then I had to cut back to 175 mg since my liver enzymes got too high. I also had to cut back on a cholesterol drug that was also metabolized by the liver.

My pred was tapered to 5 mg and has remained at that level for many months. My lab work has been good and symptoms seem controlled at this dosage so I have been considered in a drug induced remission for over a year now despite several minor surgeries. Hope they find something that helps you feel better!

Aloha.

[manalolana]

I agree. I did when about 2 years ago when I first came back from Mayo. I was outraged that I was on so many antibiotics and other medicine with misdiagnosis due to lab error. They say I am alive because my primary put me on (think) 60-80mg prendisone when he saw that I dropped 10+ ilbs in a week or two and was so weak to function.




This is active wegs. All symptoms show that you are sliding back so do get to your Mayo doc. BTW, I would seriously talk to the lab that constantly shows negative c-ANCA while the one at Mayo is positive. The lab needs to check its procedures and should stop doing the test until it gets consitent correct values. If you have more than one test that was wrong and correct at the Mayo, take copies and show to the lab manager. Don't leave it with a lab tech but insist on seeing the general manager. Goodnes knows if other tests are done incorectly as well. You maybe saving a life.

[jola57]

Good for you. Lab results are only as good as the techs that perform them. When I was doing Hep C tests years ago, they kept going wrong. At that time it took almost 2 days to do the assay, and 4 concurrent test were out of range. If I made the mistake of trying to "make" the results work because it was taking such a long time, my lab wouldn't find out that we got a bad batch of reagents. The patiens would receive false +ve or -ve results with grave consequences, just like yours. I'm glad you let them know.

[drz]

Good for you. Lab results are only as good as the techs that perform them. When I was doing Hep C tests years ago, they kept going wrong. At that time it took almost 2 days to do the assay, and 4 concurrent test were out of range. If I made the mistake of trying to "make" the results work because it was taking such a long time, my lab wouldn't find out that we got a bad batch of reagents. The patiens would receive false +ve or -ve results with grave consequences, just like yours. I'm glad you let them know.

It is important we have confidence in our lab work as well as our doctors. I trust my lab work at Mayo and the other clinics I also use seem to get similar results so I think they all are doing good work. I wonder how someone like Vdub feels about his lab work when he gets it done at many different places when traveling. Has anyone ever asked to have a test repeated or gone elsewhere to have results checked?

[JanW]

I only have experience with mtx which put me into remission within a year of diagnosis.

I agree with the others that it sounds like active WG. I do not think that my rheumy ever uses Humira for this.

[manalolana]

That is fantastic that you got in to remission within a year!

It will be four years this December being sick without a day off! I would love a break! Thanks JanW for sharing a great news!


QUOTE=JanW;62514]I only have experience with mtx which put me into remission within a year of diagnosis.

I agree with the others that it sounds like active WG. I do not think that my rheumy ever uses Humira for this.[/QUOTE]

[JanW]

I am sorry that you haven't been feeling well for so long Honestly being remission after a year is not so unusual and I know that many here have achieved this. Most people will gain remission at some point once they get the drug combo right. I hope this happens for you.

[manalolana]

Thank you! Getting married next year in May and want to have kids right after. So my goal is to try all I can to get to remission my next May! :)




I am sorry that you haven't been feeling well for so long Honestly being remission after a year is not so unusual and I know that many here have achieved this. Most people will gain remission at some point once they get the drug combo right. I hope this happens for you.

[gunnyl]

Manalolana,

We'll keep you in our prayers that you will be in remission before you're wedding day and that you stay that way! Hope you can get this thing under control and keep it that way.....I thought I was there and now not so sure. Moving from MTX to Imuran in the next week or so when the tests come back and Dr. works a plan to make the conversion. She wants to get me off the Prednisone altogether and wasn't able to do that with MTX.

GL