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SEATTLE58's Photo SEATTLE58 Posts: 4,620
4/2/13 8:47 A

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Thanks for all you wrote here too! I appreciate it immensely! I just had my liver checked once again and it checked out A-ok again, so that made me happy with being on the Leflunomide. My Rheumy told me that it tends to be more tolerable than MTX and it's for those who can't tolerate MTX. Well, it sounds like it was the opposite for you! We're all different, that's for sure! I haven't had any trouble with Plaquenil yet, thank goodness, with having my eyes annually checked with the Opthamologist. Hopefully that will continue to be that way and then I can get off some of these stronger meds! As far as the nightshades, etc., I've tried everything like you've said you have. I haven't noticed any difference in them either. I currently am taking 2 T. of concentrated tart cherry jc. in 4 oz. of water each day because a friend swore by it with having RA, so I thought, ok, it wouldn't hurt. Well, so far no difference in about a month, but I'll keep onit until this bottle is gone anyway. I really think I'll notice a distinct difference when the Humira kicks in!! Oh, and I don't use tobacco or alcohol, so that's good! Thank you for your very best wishes and I'm wishing you the very best too!

I'm starting my ticker over with going low carb.

"Little by little whittling my middle!"

Karen




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JANISMKW's Photo JANISMKW SparkPoints: (43,459)
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4/1/13 9:06 P

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Hi, I so glad to hear that your liver tests returned to normal.Very best wishes.
I have been on methotrexate 3 years since diagnosed with RA. My rheumatologist always emphasizes NO alcohol and NO tobacco while on it. He also said no acetominiphen/Tylenol. He does let me have Aleve (Naproxen,) and even put me on a double dose for a week. (I don't advise doing this without medical oversight.)
Plaquenil did nothing for me but give me side effects. Arava (leflunimide) caused my liver enzyme to become elevated, but it returned to normal, Thank the Lord. Good luck with your meds and your symptoms.
One other "home remedy" I tried with no luck, but maybe it would work for you, is to cut out all "nightshade vegetables." Some people say eating them instantly gives them pain. It means cutting out all potatoes, tomatoes, peppers (sweet and chili) tomatillos and eggplant for a month. It was not easy... there are traces of tomato and chilis in lots of foods. Then re-introduce them one by one and see if your pain increases. As I said, it didn't help me, but maybe some people react to them.
Best wishes.

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SEATTLE58's Photo SEATTLE58 Posts: 4,620
3/22/13 11:00 A

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Thanks Mark! With being on Humira, that should be kicking in soon, my Rheumy knows that he can stop the Plaquenil and hopefully the Prednisone. Probably will keep the Leflunomide going. I think that's what they normally do, but then I could still check on the Milk Thistle.

I'm starting my ticker over with going low carb.

"Little by little whittling my middle!"

Karen




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MARKM11's Photo MARKM11 SparkPoints: (4,777)
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3/22/13 8:00 A

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Milk Thistle does not help me with pain. I take it for my liver since Methotrexate might hurt my liver. Once I was on Milk Thistle for 3 months I gave up Plaquenil.

SEATTLE58's Photo SEATTLE58 Posts: 4,620
3/21/13 10:47 P

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Hmmm, interesting about Milk Thistle. That must be to help with the pain? I'll have to check into that! Thanks for your replies on the two threads!

I'm starting my ticker over with going low carb.

"Little by little whittling my middle!"

Karen




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MARKM11's Photo MARKM11 SparkPoints: (4,777)
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3/21/13 9:55 P

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I have taken Milk Thistle every day since I started Methotrexate and my blood test have been fine. I did go off of the plaquenil because it just was not doing anything for me.

TMANNY's Photo TMANNY Posts: 667
9/21/12 9:22 P

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Hoping something works out for you soon.

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SEATTLE58's Photo SEATTLE58 Posts: 4,620
9/21/12 4:34 P

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Thanks Linda, for your reply. I have applied to a couple of drug companies for medical assistance and I'll see if I hear from them. Would love to! I just applied for disability and I'll be having my first phone interview in a couple of weeks. Am looking forward to see if we can at least get some help for paying our insurance for a start. Our premiums with the $10,000 deduct. are out of this world! That's what we get with having our own business (dairy) to run. Hmm, I've never heard of dilaudid for pain, I'll have to ask my dr. about that. Tramadol just isn't that effective to me. MTX is a beautiful drug if one can tolerate it. I'm wishing you the best of luck with it. My husband says that I'd be a poor WINO the way my liver is so sensitive! ha! It's best to have some humor along with all the pain we go through, isn't it?! I'll let you all know if and when I get approved for disability and/or medical assistance. i'm crossing my fingers!

I'm starting my ticker over with going low carb.

"Little by little whittling my middle!"

Karen




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_LINDA's Photo _LINDA SparkPoints: (168,220)
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9/21/12 1:28 A

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That is great news Karen! I get dilaudid for pain, pretty effective most of the time, but I use very sparingly as it can plug me up. A 10,000 deductable for your insurance?? That sounds like highway robbery!! I feel sorry for you having to deal with not getting the best possible meds because of the cost :(( In Canada, low income people can apply for drug exception status, which I qualified for when the cost of the drugs would be more then you make. It always freaks me out when I see the 3,100 price on the cash register when I am getting my humira before the reduction kicks in :P.
Regular blood tests for liver toxicity has happened my whole life. It worries me all the effects I hear about methotrexate as I have been on that most of my adult life :( Its the one drug my Dr. always insists I take no matter how much she changes out the others..
I hope you continue to feel better!!

Never Give Up! When one door closes, I simply kick down another one!!
Stand Tall, Walk Proud-Dani W, Fitness Instructor
You CAN do it!


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SEATTLE58's Photo SEATTLE58 Posts: 4,620
9/12/12 7:28 P

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Hi and I'm back. I know that some of you were concerned about what was going on with me and I thank you for that. I can now report...... My liver was free of toxicity Sept. 5th, so that was a good thing. My Rheumy started me right away on Leflunomide and it's been working well so far. Don't have near the amount of pain and on days, when I'm worse, I reach for the Tramadol. I go again to get my labs taken around the 8th of Oct. and I'm hoping that my liver will be A-ok. Will have another lab a month later to check again. I'm sure glad that they want to keep on top of this. One can have alot more pain to put up with when they're trying to figure out what's best. emoticon Let's all have more good days than bad! emoticon emoticon

I'm starting my ticker over with going low carb.

"Little by little whittling my middle!"

Karen




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SEATTLE58's Photo SEATTLE58 Posts: 4,620
8/29/12 12:45 P

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Hi everybody and thanks for your good, heartfelt replies. The pain has definitely been more noticeable with the fact that I'm not taking Tylenol or Aleve. Ugh! I'm trying to do what he says! He did also prescribe Tramodol and that's been relieving alot I think and as the day goes on, I get better, mostly. I'll be having my labs taken again on Sept. 5th and they'll see about the toxicity then. If I'm clear, then he'll start me on Lefluomide a cousin to MTX, when a patient can't tolerate MTX. So we'll see what happens. I've been applying through several drug companies that claim that they can help people like us, that need the biologics. I know that I'd have to take the drug that they would mfr., so I'd have to make sure my Rheumy would agree with one of them. My DH says that he'd be so thrilled to pay the IV or injection of the biologics out-of-pocket before I could get assistance! Yes, I do have a DH! He says it's the same as when one of us HAS to have alot of work done on our teeth or surgery, etc. We have a $10,000 deduct. with our insurance and that defeats the purpose with the high cost of the meds. I hope to be able to live with the meds. before biologics just because of the expense, etc. I'll let you know what happens! Thanks again,you dear friends!! We're all in this together!! emoticon emoticon emoticon emoticon

I'm starting my ticker over with going low carb.

"Little by little whittling my middle!"

Karen




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JANNY316's Photo JANNY316 Posts: 264
8/27/12 1:01 P

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I am hopeful that this new course of meds can help you. I hadn't been warned of this combination affecting the liver either. Guess you do learn something new every day. I am worried about methotrexate myself. I am on the highest dose you can take orally, plus enbrel and relafin. When I have a headache, I reach for Tylenol. I am going to see my rheumatologist this week, so you can bet I will be talking about this.

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TMANNY's Photo TMANNY Posts: 667
8/24/12 11:34 P

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They do make Vicodin with ibuprofen too so if those don't work for you ask for vicoprofin...if ibuprofen is ok...my dr didn't say anything about tylenol with prednisone, but I don't take prednisone often so maybe I don't take enough of it to matter, but I am going to ask at m next appt to make sure thank you

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ANGEL1066's Photo ANGEL1066 SparkPoints: (70,192)
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8/24/12 11:04 P

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All meds based on acedaminaphin, such as tylenol, can damage the liver if overused. Makes sense not to use them with Metho, with its bad liver history. Hadn't heard of that Pred connection, tho I know it can hurt the body in a number of ways. I do know that the sensitive area that had developed in my abdomen returned to normal after I refused to keep taking Metho. I still take a little daily Pred, with no ill effects, so far as I know. I hope the docs can come up with something you can tolerate without problems. God Bless!

"Mountains DO move...One stone at a time." ~Rick Beneteau
Do not let what you cannot do interfere with what you can do. - John Wooden, Hall of Fame college basketball coach
With exercise, doing some is always better than doing none. - Spark article
MAKE THE BEST FOOD CHOICES YOU CAN TODAY - and then, try it again tomorrow!- Dr. John La Puma, M.D.


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LISALOSING52's Photo LISALOSING52 SparkPoints: (60,782)
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8/24/12 8:58 P

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My Rheumy told me to only take 2 tylenol.thats it...& only If I had too. My PCP prescribed me Tramadol to help with my pain in the beginning. Along with the methotrexate, Plaquenil and prednsone. This is just until the other meds start working. Personally, I myself couldn't tell any difference.
Let's hope the Tramadol will help you now. fingers are definitely crossed. Good Luck!

If it is to be, it is up to me.


So often times it happens that we live our lives in chains, and we never even know we have the key.

Lyrics from Already Gone, performed by the Eagles

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SEATTLE58's Photo SEATTLE58 Posts: 4,620
8/24/12 7:50 P

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I had to stop my Methotrexate because of my liver showing toxicity. My Rheumy told me that I couldn't take Aleve or Tylenol with Prednisone because of the liver showing toxicity. I understood too that he wanted me to not take any Aleve or Tylenol just because of taking Prednisone. He's prescribing Tramadol for the pain. I'm sure hoping that it will work more than it did back in 2008, before I was on RA drugs. It didn't do a bit of good, but could possible do more now because of being on Prednisone and Plaquenil. I'm crossing my fingers! I wonder if any of you had heard that from your Dr. that we shouldn't take Aleve, etc., along with Prednisone. Learn something new every day! ~Karen~

I'm starting my ticker over with going low carb.

"Little by little whittling my middle!"

Karen




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