Well; my liver enzymes haven't gone down any, in fact they have gone up. I set up an appointment with my primary physician last week after numerous elevated liver function test. She said she's not happy just thinking it's due to the MTX especially since I've been reducing it and it's continued to get higher. She's ordered an ultrasound and said depending on what they shows she might have to refer me to a GI specialist. .
My RD has asked me to discontinue MTX all together and lets see what happens in two weeks. I told the nurse that I haven't been doing very well on this reduction of MTX and to discontinue it all together is going to mean trouble. She said to see how long I could get by with just the Humira and to call them as soon as I decided I needed something more.
Who's done the liver ultrasound before? At least they aren't jumping right into a biopsy. I hear those are not pleasant at all!! Hopefully it won't come to that.
Hi Lovie, I'm glad they're doing an ultrasound instead of just going straight to a liver biopsy but that may be in your future. I had a liver biopsy done year's ago when I was diagnosed with Sarcoidosis and it wasn't bad at all. The most uncomfortable part of the procedure was having to lay on my side for most of the day to control any possible bleeding. The biopsy itself was fine. A little pain and mostly pressure. Having to stop MXT isn't going to be fun. Do you take Humira weekly or every 2 weeks. It might be possible to go from 14 days to 10 days or even weekly injections. Take care, LindyI'm sorry. :( I hope they can get it sorted out quickly!I've just been taking it every two weeks this time around and have been doing amazingly well. I was hoping to avoid the weekly injections because I really hate the shots; but I"ve done them weekly in the past and I could manage it if I have no other real option. We'll see.
Thanks guys. I appreciated your thoughts about the issue as well as your well wishes more than you know.
Sorry to hear about this. Let us know. It sounds like it could very well be the MTX. Sometimes AI causes this. It would possibly respond to prednisone if that were the case.
I do not know your age or any other symtems you may have. My enzymes were elevated once and I was flaring and i quit getting my periods. Also had a gallbladder attack. The enzymes returned to normal before I had the gallbladder out. If it is the MTX then hopefully it will regulate when you stop. I hate to see you off meds.
Oh Lovie, what a disappointment, especially since you were doing so well. I quit MTX when my liver enzymes suddenly went haywire, even though the ex-RD wanted me to restart after a two-week washout. The 2-week washout of the MTX he ordered was terrible, but I am glad I decided not to restart it, and the tests stablized. I don't want to ever have to weanoff that drug again, and I thought the Predisone weanoff was horrifying. Its now 9 months later, and everything is still normal.
Good luck and I am glad Lin could give us an idea of how a liver biopsy goes. You never know if its in your future. Take care and big huggles ~~ Cathy
I'll be praying that everything is okay Sorry Lovie, I hope all turns out well. You are in my prayers.
take care
JSNM~What medication did you start taking after you stopped MTX? I'm getting real nervous about stopping it. Everyday has gotten harder since the decrease......not taking it this week worries me sick. I've been on it now for I guess 6 years and I've done so well except the times I've had to stop it due to infection. Those times were terrible!
Thank you all for your prayers. It's so nice to have such a supportive group to lean on.
Lovie - this was around Decemberish (frain bog) - I had gone on Minocin through my family practitioner and the rheumatologist went bonkers (August). In December my RA markers rose for the second time, so he took me from 6 to 8 MTX. Well, I went back through my blood work, and the only other time since dx that my markers had gone up (alot less of a rise than this time I am referring to), he raised me from 5 to 6 tabs. So, my hubbie and talked it over, and I didn't do it. Went back in after two weeks, and they were normal again. (I never told him I didn't raise it, I left him without telling him that I stablized WITHOUT the raise in MTX dosage). But my liver enzymes had skyrocketed. I could tell he was worried - not about the numbers, but about him thinking he had raised the MTX and set off the liver.
So, he told me to do a two-week wash of MTX and the Minocin, which I did. The nurse said to me after the appointment that I know you are NOT going to like this, but it was necessary. I had no idea she was referring to the weanoff from the MTX. Horrible, over Christmas. My first and last weanoff from MTX.
Two weeks later he told me to start the MTX again as the liver numbers stabilized, but NOT to restart the Minocin. My husband and I talked about it, and I had just gone through this bad, bad, bad weanoff and realized how bad this drug was for me, plus my immune blood work had dropped way below normal, and I said I am done with this. Why should I take a drug that has put me way down in my WBC, etc.? It was ridiculous. I just continued with the Plaquenil I was also on, and restarted the Minocin.
My family practitioner took over all my care, my liver stabilized, and after about two more months on Plaquenil, I stopped it cold turkey with no problems whatsoever.
So, I am sorry, but I am on the AP protocol and Minocin, and its been unbelievable how it has turned my health around - fatigue gone, frain bog improved, pain reduced, the swelling is down that I now have shrinkage wrinkles in my fingers and hands, etc. I know AP is controversial for alot of people and I know you might be against taking it, but that's the story.
Best of luck - and push good filtered water and the milk thistle. A liver/gallbladder flush can be found online with a search. That is an amazing thing to do it. Big huggles ~~ Cathy
justsaynoemore2008-09-26 03:54:58I'm sorry to hear that decreasing the mtx didn't help the levels. Maybe if you increase the frequency of Humira that will help keep things settled down while they evaulate. Best wishes for a good outcome.
Cathy
Thanks. I'm not against AP....I've just done so well on my other medications for the last 14 years it's never really been something I wanted to abandon my regular meds to try. Depending on how things work out it may end up being something for me. We'll see.Lovie..you are definitely in my thoughts. I hope this works out in a positive fashion for you.Thank you Patti. Good to see you. Hope you're well.When do you have your ultrasound Lovie? It must be so hard waiting and worrying. I hope everything checks out okay.Hope it everything turns out ok, Lovie. Hi lovie, hope everything goes well for you
Thinking of you......Mary.
wow.. I'm sorry to hear this..
I hope things are "ok" and you get back on some protocol asap!!!
It took close to 6 months before my liver enzymes returned to completely to normal. This was an Arava reaction. They had hardly budged at the 2 month mark off of Arava.
Take your favorite NSAID, full dosage every day and your pain killer unless it contains tylenol/acetamiophen. Tramadol is a mild pain killer like darvacet but you can get it without the tylenol. You might ask for a dose pack of pred if it gets too awful (as in a threat to xmas).
I have been just humira weekly, nsaid, and tramadol since last Nov. It was bad at first but weekly humira helped alot.
marian2008-10-27 11:32:05The ultra sound was normal so the GP sent me to see a GI doctor. All the blood work he did turned out fine and the liver results have gone down to just about normal. I'm managing pretty well on just the humira. MOre pain the last few days before my shot....but I'm thinking that's to be expected.
If I'm doing this well when I return to the RD later in November I don't plan to go back on MTX. At least not for a while anyway. The last few months without a glass of wine has really sucked! Never knew how much I wanted it until I couldn't have it at all!!
The GI doctor wanted to do a biopsy anyway and I refused. I said "I'm no doctor but I think it's obvious that it's the MTX causing it". We'll wait and see what it's like after my next blood test. I promised the GI doctor I'd do it if they were up again. I doubt that though.
Thanks for your concern guys. I appreciate it.
Glad to hear you got a normal result! Best of luck to you in being able to stay off sucky MTX-the party pooper drug.
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