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debbie-b
09-17-2013, 06:54 AM
The rheumy nurse just called, my liver enzymes are sky high again. This means that I have to stop the MTX again , but this time for good.
It was my 5th try with the MTX, every time I had to stop, because of high liver enzymes. The last time I started in May, had a blood test done once a month and every time the numbers went up, but this time the numbers trippled, they are at 297.
Not knowing the result yesterday, I took my weekly shot last night, wish they would have called yesterday.
This is the end for me and MTX, the only med that helps me.
I was diagnosed with autoimmune hepatitis last year, so my liver is already compromised and can't take much more.
What am I going to do?
I just started to feel a little better, less pain. Now it is going to start all over again.
The only thing I can look foreward to now, is more pain. I could cry, scream and have a tantrum right now.

Debbie

chikititalinda
09-17-2013, 09:47 AM
Im so sorry Debbie, this Lupus thing is so unfair, we need new meds, and definitely new training for doctors to deal with us. Im so sorry {{{HUGS}}}

tgal
09-17-2013, 07:19 PM
I wish I could reach through here and hug you! I am so sorry! I know I am not posting as much because of things in my life but if you need me just PM. I will always bet here for you

BonusMom
09-17-2013, 07:28 PM
I'm so sorry, Debbie. You must feel pretty discouraged. I know I would.

Abbyrition
09-17-2013, 09:46 PM
Breathe deep... I don't think I've responded in time to tell you not to throw a fit. I know my Sjogren's always acts up more when I get emotionally upset. Yes, this sucks... Yes you should be mad, demand other options from your medical professionals. Force them to think out of the box. It's time to be you're own advocate right now, and I know first hand they don't listen to emotional people, or that has been my experience. When I was undiagnosed for 7 years what I told myself is I only wanted to know what I'm dealing with... Because at least then I will have an action plan, even if the action plan is - this is my lot in life and I'll just have to live with it. It's time to formulate a new plan. I'm a "fixer" can you tell? I can't fix this for you, I was sure hoping you'd have been able to handle the MTX longer than this. I am sorry for your bad news, and I hope you have a good and competent team of doctors surrounding you. I wish you more good days than bad.

Saysusie
09-18-2013, 02:44 AM
I am sorry to hear that you must stop the MTX permanently. Especially as it was working for you. Perhaps you can discuss some alternatives with your doctor. Others, who are not able to take MTX, have had some success with the following alternatives:
Cyclosporine, Azathioprine, Cyclophosphamide, and Minocycline.

Please let us know what you and your doctors decide. I am sending you cyber hugs filled with understanding.

Peace and Blessings
Namaste
Saysusie

steve.b
09-18-2013, 08:34 AM
hoping you can find an alternative !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! !!!!!!!!!!!!!!!!!!!!!

debbie-b
09-18-2013, 03:12 PM
I wish I could reach through here and hug you! I am so sorry! I know I am not posting as much because of things in my life but if you need me just PM. I will always bet here for you

Thank you, Mari.

Debbie

debbie-b
09-18-2013, 03:13 PM
I'm so sorry, Debbie. You must feel pretty discouraged. I know I would.

Thank you. I am very discouraged, almost hopeless.

Debbie

debbie-b
09-18-2013, 03:20 PM
Breathe deep... I don't think I've responded in time to tell you not to throw a fit. I know my Sjogren's always acts up more when I get emotionally upset. Yes, this sucks... Yes you should be mad, demand other options from your medical professionals. Force them to think out of the box. It's time to be you're own advocate right now, and I know first hand they don't listen to emotional people, or that has been my experience. When I was undiagnosed for 7 years what I told myself is I only wanted to know what I'm dealing with... Because at least then I will have an action plan, even if the action plan is - this is my lot in life and I'll just have to live with it. It's time to formulate a new plan. I'm a "fixer" can you tell? I can't fix this for you, I was sure hoping you'd have been able to handle the MTX longer than this. I am sorry for your bad news, and I hope you have a good and competent team of doctors surrounding you. I wish you more good days than bad.

Thank you too.
I am fortunate enough to have a great Rheumy. He is always impressed, how willing I am to try something else. But this is pretty much it though, when your liver is damaged, there aren't to many meds you can take, because almost all of them have a bad impact on the liver.
It's a catch 22, the Lupus is attacking the liver, but I can't take the meds that will keep the Lupus under control.
Very frustrating.

Debbie

debbie-b
09-18-2013, 03:23 PM
I am sorry to hear that you must stop the MTX permanently. Especially as it was working for you. Perhaps you can discuss some alternatives with your doctor. Others, who are not able to take MTX, have had some success with the following alternatives:
Cyclosporine, Azathioprine, Cyclophosphamide, and Minocycline.

Please let us know what you and your doctors decide. I am sending you cyber hugs filled with understanding.

Peace and Blessings
Namaste
Saysusie

Thank you for the much needed hugs.
The bad part is, that pretty much all Lupus meds are bad for the liver.
I will find out on Oct.1st and let all of you know.

Debbie

debbie-b
09-18-2013, 03:23 PM
hoping you can find an alternative !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! !!!!!!!!!!!!!!!!!!!!!

Thank you, Steve, so do I.

Debbie