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View Full Version : Rheumy- " against my better judgement".



debbie-b
08-24-2012, 07:47 AM
I am so confused right now.
As I told you a week ago, my liver doctor, recommended that I start taking MTX agian.
A few minutes ago, the rheumy ( his nurse) called and said, " the doc will let you take the MTX again, but against his better judgement". What the heck is that supposed to mean? I did asked her that and she said that with my liver being in relatively bad shape he doesn't think that I should take MTX.
So I have asked her what kind of treatment he would suggest, because I have been without meds for several months now, she said that he didn't know what else I could take. " BUT I AM IN PAIN AND I NEED SOMETHING, I NEED HELP".
She said to have a blood test done today, take the MTX for two weeks and have another blood test then.
I am now starting on tuesday with a MTX shot, but only 0.4 mg, is that going to be enough? I used to take 0.15 mg and it helped me alot.
It is so frustrating, that two specialists can't agree on a treatment. What am I supposed to do? I am not the specialist.

Debbie

blackeight
08-24-2012, 07:55 AM
I feel you, but maybe since you have been off it for 2 months the lower dose will help. I don't trust the Rhumy's much I got diagnosed by my pcp and treated by her. What does your pcp say? I would talk to them before starting anything right now. Maybe they have some better advice. Let me know how it goes!

Gretchyn

Saysusie
08-24-2012, 08:20 AM
There is still some trepidation amongst doctors to use Methotrexate in patients who show signs of liver damage. This is because, over 40 yrs ago, it was found that MTX could cause liver fibrosis in patients with psoriasis (especially those who consumed alcohol). However, this was seen in patients who took large doses on a daily basis. A similar study was conducted with RA patients who took smaller doses and it was found that liver fibrosis was much less common.
Now, MTX is given in much smaller doses and only once per week. Since this change, liver fibrosis has not been a common side effect, although it is still listed amongst the possible side effects of MTX. So, due to these studies, three main safety features were added to Methotrexate therapy: Weekly doses (in contrast to daily Methotrexate in the past), folate supplementation & avoiding alcohol. They also cleared the air about severe liver toxicity with Methotrexate.

Here is a website that might give you more information regarding MTX and liver fibrosis/toxicity:
www.nlm.nih.gov/medlineplus/druginfo/meds/a682019.html

I hope that this answers your question a bit. I wish you the very best.

Peace and Blessings
Namaste
Saysusie

debbie-b
08-24-2012, 08:37 AM
Thank you very much.
My problem is, the liver damage actually comes from the Lupus, it is autoimmune hepatitis, with other words, the Lupus is attacking the liver.
Do you see the problem? The Lupus has to be controlled, for instance with MTX, but the MTX might damage the liver even more. It is a catch 22. I am in a real pickle here.
On top of that, I am in alot of pain, but my rheumy is not comfortable giving me any pain meds, because of the liver. For a few months, all I have been taken, Mobic ( anti inflammatory) and Flexeril ( muscle relaxer), plus three weeks of prednisone.
I really don't know, what to do.

Debbie

debbie-b
08-24-2012, 08:42 AM
I feel you, but maybe since you have been off it for 2 months the lower dose will help. I don't trust the Rhumy's much I got diagnosed by my pcp and treated by her. What does your pcp say? I would talk to them before starting anything right now. Maybe they have some better advice. Let me know how it goes!

Gretchyn

Thank you Gretchyn,

I do trust my rheumy, I just think he is too careful. My family doctor admitted to me, that he doesn't know much about Lupus, RA and Sjogrens, that is what my diagnosis is.
I guess, I will start the MTX shot on tuesday ( my day off is wednesday) and go from there.

Debbie

debbie-b
08-24-2012, 08:45 AM
BTW, Saysusie, luckely I don't drink, never have. I usually have one glas of champagne on New Years Eve, it's a German tradition.

Debbie

tgal
08-24-2012, 09:23 AM
Have you thought about going to a pain managemt doctor to help with the pain issues while the other doctors figure out what they want to do? Not a perfect solution but getting the pain down will get your stress down which will possibly help calm the Lupus.

I am not one to say jump to pain meds but I finally gave in after 3 years and it made a big difference.

debbie-b
08-24-2012, 10:30 AM
Thanks Mari,

That is something to think about.

Debbie

jmail
08-26-2012, 03:58 PM
Just another thing to look-out for there Debbie, is the mobic, which can impact the liver also, as can aspirin and tylenol. I don't think there's a "safe" nsaid pain reliever that doesn't affect the liver in some fashion, since it's the body's "filter" for the blood stream. I had to quit all meds due to my "hypersensitive whatchamuhcawlitt" reaction, which involved the liver (surprise, surprise, surprise... tic). I'm back on my thyroid meds, but I've not done "pain reliever" in almost 5 weeks now, and have to do bi-weekly liver enzymes bloodwork, just in case I've added "autoimmune hepatisis" to my list of ailments (doesn't look like it so far)... Definitely be governed by doctors' advice, and do it like you've done, and consult with more than one doc. You definitely want to be "educated" about the sitch...

debbie-b
08-27-2012, 12:27 PM
Just another thing to look-out for there Debbie, is the mobic, which can impact the liver also, as can aspirin and tylenol. I don't think there's a "safe" nsaid pain reliever that doesn't affect the liver in some fashion, since it's the body's "filter" for the blood stream. I had to quit all meds due to my "hypersensitive whatchamuhcawlitt" reaction, which involved the liver (surprise, surprise, surprise... tic). I'm back on my thyroid meds, but I've not done "pain reliever" in almost 5 weeks now, and have to do bi-weekly liver enzymes bloodwork, just in case I've added "autoimmune hepatisis" to my list of ailments (doesn't look like it so far)... Definitely be governed by doctors' advice, and do it like you've done, and consult with more than one doc. You definitely want to be "educated" about the sitch...

Thank you jmail,

I am kind of leaning toward the liver doctor, who said to take the MTX, to prevent the liver to get further attacked by the lupus. The liver doc thinks I should take it and rheumy doesn't, but the rheumy can't come up with a solution.
Not only am I in pain, my joints are getting worse my fingers are starting to cripple, it needs to be treated, I mean the Lupus, RA and Sjogrens. I can't keep going without meds any longer, it's been months and I can feel, that things are getting worse.
I had a nice long talk with my hubby last night, asking him what I should do and he said " i have been watching you get worse and worse, since you had to stop the MTX, something has to be done, because i don't want you to suffer like this any longer. Since the liver doctor said you should take it, to prevent further damage, you should at least try it."
So tomorrow afternoon, I will get my blood test done and start my first MTX shot in the evening. I will have a blood test done every two weeks and we'll go from there.

Debby

steve.b
08-28-2012, 12:19 AM
i wish you luck

i will be thinking of you as you try to get it sorted out

debbie-b
08-28-2012, 01:50 PM
i wish you luck

i will be thinking of you as you try to get it sorted out

Thank you, Steve.

Debbie

debbie-b
12-07-2012, 11:21 AM
Well my friends, the blood tests are getting worse, last time I went, the liver enzymes have doubled, in only two weeks.
My next blood test is monday, if that one is worse, I have to stop the MTX again.

Debbie

tgal
12-07-2012, 01:22 PM
Oh Debbie I am so sorry! I will keep my fingers crossed for you! Please keep us posted

jmail
12-07-2012, 02:54 PM
Man Debbie, tough cookies... Have any of the docs come up with an alternative? Are they going to do a biopsy, and see what kind of damage you might have? Or are they confident that you're just at the beginning of the issue, and that blood work is enough for now? Have they suggested stopping all meds, including pain "relievers", for a period of time, to see if your liver "heals" any, or maybe changing your diet to something that might be, shall we say, "bland" (OH BOY!!!), with the help of a nutritionist, to help the liver not have to "work" as hard for digestion?

debbie-b
12-07-2012, 07:31 PM
Oh Debbie I am so sorry! I will keep my fingers crossed for you! Please keep us posted


Thank you Mari. I am so frustrated, I could scream. It's bad enough to have this damn disease, but it is worse, when you can't even try to fight it, or at least control the pain.
I am going to see my rheumy on the 19th, I hope for him, that he can come up with something.

Debbie

debbie-b
12-07-2012, 07:45 PM
Man Debbie, tough cookies... Have any of the docs come up with an alternative? Are they going to do a biopsy, and see what kind of damage you might have? Or are they confident that you're just at the beginning of the issue, and that blood work is enough for now? Have they suggested stopping all meds, including pain "relievers", for a period of time, to see if your liver "heals" any, or maybe changing your diet to something that might be, shall we say, "bland" (OH BOY!!!), with the help of a nutritionist, to help the liver not have to "work" as hard for digestion?

Thank you, jmail.
I have had a liver biopsy last summer, there is moderate damage, caused by the Lupus attacking the liver( autoimmune hepatitis). I have also pretty much stopped all meds for a while, with the exception of an occasional muscle relaxer or a anti inflammatory. On top of that, I have been drinking this tea ( I only know the german name for it- Mariendistel), I know the english word for it, but brain fog won't let me spit it out. The rheumy agreed that I should drink it, because it will help to heal the liver.
The doctor thinks, because the Lupus is attacking the liver, we have to treat the Lupus, but when we do, the meds make things worse. It is a catch 22, because without the meds, the whole thing is getting worse anyway.
I have been on Plaquenil for a while and stopped it, because it didn't help me, but I am thinking, maybe I should get back on it, to stall the Lupus, even if it doesn't help with my symptoms.

Debbie