Lupus FAQ » Lupus Arthritis » Discontinuing MTX

Discontinuing MTX

Question:

Thought I’d update you all – saw RD today, and we decided that I failed MTX (or it failed me, as someone else on this board once said). Don’t really have many options, so decided to try Imuran. I start it next week as today I had already taken my MTX and RD wants one week between the two drugs. Apparently if I am to experience therapeutic effect from Imuran I will do so within 12 weeks – if not, than that drug will have failed me too. Not sure what my options are after that So would like to hear about all of your experiences with Imuran – the good , the bad, and the ugly. Also had the tendon in my right thumb injected w/cortisone as I haven’t been able to spread open my thumb from my hand, so I have been having great deal of difficulty getting a hold of things. And got scripts for HRCT (high resoluting chest tomography – so I can get better picture of my lung situation) and for dexascan (so I can better see what all this prednisone has done to my bones). No Celebrex yet. RD wants only one new drug at a time, plus doesn’t want NSAID to affect CBC results one month after start of Imuran. In addition, it would seem that RD agrees w/PCP that it may not be worth re-challenging me with any NSAID – even COX II. But did say after starting Imuran, if followed by good labs we could re-discuss it. In the meantime I’m managing pain w/Ultram and Darvocet. But Prednisone has been the most help getting me over this latest hurdle. Toni

Response:

 decided to try Imuran. I start it next week as today I had already taken my MTX and RD wants one week between the two drugs. Apparently if I am to experience therapeutic effect from Imuran I will do so within 12 weeks – So would like to hear about all of your experiences with Imuran – the good , the bad, and the ugly.  In the meantime I’m managing pain w/Ultram and Darvocet. But Prednisone has been the most help getting me over this latest hurdle.

Hi Toni,     It’s hopeful that you have a chance to control your symptoms with Imuran. I hope it kicks in real soon!!  Sorry, I have to experience with it to share. I was on prednisone for about 8 or 9 *years* at varying doses.  While unhappy with some of the side effects, it was one of the few things that kept me going.  And for that, I have to be grateful.  So Toni, if you have to take it to keep you functional, that’s what you do.  I think it’s johnie who has a sig line that says "you do what you have to do to get through your damn day".  And I also belive that.  So good luck with the prednisone, and best wishes with the Imuran.  I’m thinking lots of positive thoughts!! Regards, Sandy F.

Response:

Thought I’d update you all – saw RD today, and we decided that I failed MTX (or it failed me, as someone else on this board once said). Don’t really have many options, so decided to try Imuran. I start it next week as today I had already taken my MTX and RD wants one week between the two drugs. Apparently if I am to experience therapeutic effect from Imuran I will do so within 12 weeks – if not, than that drug will have failed me too. Not sure what my options are after that

Hate to hear this Toni. Have you talked to your RD about the Enbrel or Arava? Steve http://www.zoomnet.net/~steve

Response:

Hi Toni,  I dont know anything about Imuran but do know about methx not doing the job and having a thumb that keeps a person from doing most things with that hand.  That was a little over 5 years ago and no problems with thumb now.  Your RD is trying to get a grip on your problems and is being carful-gotta give em that.  You are in my prayers, Toni.  Its time for things to get better for you.  Tommorow will be a better day. Harv Houston,Tx – Hide quoted text — Show quoted text – Thought I’d update you all – saw RD today, and we decided that I failed MTX (or it failed me, as someone else on this board once said). Don’t really have many options, so decided to try Imuran. I start it next week as today I had already taken my MTX and RD wants one week between the two drugs. Apparently if I am to experience therapeutic effect from Imuran I will do so within 12 weeks – if not, than that drug will have failed me too. Not sure what my options are after that So would like to hear about all of your experiences with Imuran – the good , the bad, and the ugly. Also had the tendon in my right thumb injected w/cortisone as I haven’t been able to spread open my thumb from my hand, so I have been having great deal of difficulty getting a hold of things. And got scripts for HRCT (high resoluting chest tomography – so I can get better picture of my lung situation) and for dexascan (so I can better see what all this prednisone has done to my bones). No Celebrex yet. RD wants only one new drug at a time, plus doesn’t want NSAID to affect CBC results one month after start of Imuran. In addition, it would seem that RD agrees w/PCP that it may not be worth re-challenging me with any NSAID – even COX II. But did say after starting Imuran, if followed by good labs we could re-discuss it. In the meantime I’m managing pain w/Ultram and Darvocet. But Prednisone has been the most help getting me over this latest hurdle. Toni

Response:

Hi Toni- I was on mtxand Immuran and I got more mouth sores and not much else- no relief but as you well know YMMV- hope this works for ya! Kate    Send in the clowns

Response:

Toni-Sorry the news today wasnt better.   I  hope things start going your way.    I know nothing about these meds, but hope they find one soon that works for you. Char – Hide quoted text — Show quoted text – Thought I’d update you all – saw RD today, and we decided that I failed MTX (or it failed me, as someone else on this board once said). Don’t really have many options, so decided to try Imuran. I start it next week as today I had already taken my MTX and RD wants one week between the two drugs. Apparently if I am to experience therapeutic effect from Imuran I will do so within 12 weeks – if not, than that drug will have failed me too. Not sure what my options are after that So would like to hear about all of your experiences with Imuran – the good , the bad, and the ugly. Also had the tendon in my right thumb injected w/cortisone as I haven’t been able to spread open my thumb from my hand, so I have been having great deal of difficulty getting a hold of things. And got scripts for HRCT (high resoluting chest tomography – so I can get better picture of my lung situation) and for dexascan (so I can better see what all this prednisone has done to my bones). No Celebrex yet. RD wants only one new drug at a time, plus doesn’t want NSAID to affect CBC results one month after start of Imuran. In addition, it would seem that RD agrees w/PCP that it may not be worth re-challenging me with any NSAID – even COX II. But did say after starting Imuran, if followed by good labs we could re-discuss it. In the meantime I’m managing pain w/Ultram and Darvocet. But Prednisone has been the most help getting me over this latest hurdle. Toni

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Response:

Toni, No experience with Imuran just sending good thoughts that it works for you!!! You are due!!! Keep Smilin’ ~krissy Akron, Ohio Visit my web pages at: http://arthritisnet.com http://arthritisnet.com/kids http://members.aol.com/KrissyJo/RA.html

Response:

Thought I’d update you all – saw RD today, and we decided that I failed MTX (or it failed me, as someone else on this board once said).

Hi Toni: I am very sorry to hear that mtx was not successful for you. I do not have any direct experience with imuran, but a colleague at work with RA was taking it with good results and with less side effects than she had on mtx. From what I have read, imuran boosts the effects of the corticosteroids and therefore if it helps you, you may be able to reduce your prednisone. Other than that, the usual monitoring is required. But then we mtxers are used to that, aren’t we? Good luck with it. By the way in my handy, dandy drug guide it says that it may take several weeks to be effective (6-8 wks). Rose

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Thanks Harv – I’m trying to hold onto the possibilities of tomorrow. Toni

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Thanks Kate – RD and PCP said "No" to using these drugs together (MTX and Imuran simultaneously). I am still on Plaquenil, and of course Prednisone, along with too many other things. What’s "YMMV"? Toni

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Thanks Rose. Imuran is also an immunosupressant. It does carry a risk of possible development of cancer (lymphoma in particular). I hadn’t read about it’s boosting the effects of Prednisone. I do know it can cause blood abnormalities – that’s why frequent CBC’s. RD said not much affect on the liver, so monitoring LFT’s won’t be necessary. And considering my lung involvement discontinuing MTX could be an additional bonus, no chance of MTX induced pneumonitis now. My restrictive lung disease put me at an increased risk of developing MTX induced pneumonitis while taking it. Have also read that it can cause nausea and vomiting – so was also interested in anyone’s experience with that. Folic acid won’t save me here :( Thanks everyone for kind words of support. Am feeling bit discouraged – Toni

Response:

Toni, I am sorry to hear the MTX did not help.  It failed me also. I have no experience with Imuran.  As you know, each person is unique — Imuran may turn out to be your ‘cup of tea’.  It is your turn for success. TisOnlyMe – Hide quoted text — Show quoted text – Thought I’d update you all – saw RD today, and we decided that I failed MTX (or it failed me, as someone else on this board once said). Don’t really have many options, so decided to try Imuran. I start it next week as today I had already taken my MTX and RD wants one week between the two drugs. Apparently if I am to experience therapeutic effect from Imuran I will do so within 12 weeks – if not, than that drug will have failed me too. Not sure what my options are after that So would like to hear about all of your experiences with Imuran – the good , the bad, and the ugly.

Response:

Hi Toni:  I am sorry that you are feeling discouraged, but it is certainly understandable.  I could not do as well, and you are to be commended for your courage and positive attitude.  Both of which will return.  Do what you have found in the past that cheers you up and do that today. I do not know anything about Imuran, but sure hope it helps.  When I read your post I dug out the Arthritis Today that came a week ago and I had not read yet. I remembered on the cover was something about a breakthrough for Lupus. I was disappointed to see the article was about DHEA.  Looked the article over briefly and it seems there has been some improvement for mild to mod. lupus, and the jury is still out.  Needs more study, more research, and not really recommended.   But Toni, there is research for lupus being done, and I know your breakthrough will happen someday soon. Please keep trying, and talk to us. Shirlawn

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Toni I’m sorry your having a rough go of it. I really hope the new stuff works for you. {{{{{Toni}}}}} ~~~Kenny~~~

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Toni I’m sorry your having a rough go of it. I really hope the new stuff works for you. {{{{{Toni}}}}} ~~~Kenny~~~

  Me Too, Toni. johnie

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Thanks guys – you have no idea how much I needed that hug :) Oh and Shirlawn – I saw the article on DHEA in Arthritis Today magazine. I tried it (DHEA) for a month but felt no benefit. It cost $82/mo, not covered by insurance as it’s not FDA approved yet (received mine from compounding pharmacy in Ca. recommended by RD), so I stopped it. RD agrees with me, it’s not of much benefit and you run the risk of masculinization as it’s an androgen. But thanks for thinking of me – Toni

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Toni, No experience with Imuran, but just wanted to say sorry you’re having a tough time.  Good luck with the scans.   Bonnie Never enter into a battle of wits with an unarmed opponent :o )

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Hey Toni,     That was ME!  :)   I’m the one that said the meds have failed me, not me failing them!  I’m sorry the mtx has failed you.  In reading your posts, I have to wonder how you keep your spirits up ~ there are so many things you have to face, physically speaking.     Just want you to know I’m thinking of you and praying the Imuran will do it!     Barbara Joy         Thought I’d update you all – saw RD today, and we decided that I failed MTX     (or it failed me, as someone else on this board once said). Don’t really     have many options, so decided to try Imuran. I start it next week as today I     had already taken my MTX and RD wants one week between the two drugs.     Apparently if I am to experience therapeutic effect from Imuran I will do so     within 12 weeks – if not, than that drug will have failed me too. Not sure     what my options are after that         So would like to hear about all of your experiences with Imuran – the good ,     the bad, and the ugly.         Also had the tendon in my right thumb injected w/cortisone as I haven’t been     able to spread open my thumb from my hand, so I have been having great deal     of difficulty getting a hold of things. And got scripts for HRCT (high     resoluting chest tomography – so I can get better picture of my lung     situation) and for dexascan (so I can better see what all this prednisone     has done to my bones).         No Celebrex yet. RD wants only one new drug at a time, plus doesn’t want     NSAID to affect CBC results one month after start of Imuran. In addition, it     would seem that RD agrees w/PCP that it may not be worth re-challenging me     with any NSAID – even COX II. But did say after starting Imuran, if followed     by good labs we could re-discuss it. In the meantime I’m managing pain     w/Ultram and Darvocet. But Prednisone has been the most help getting me over     this latest hurdle.         Toni

Response:

Hi Toni :-) Don’t feel discouraged!  I’ve been on Imuran since June 1998 with great results so far.  It kicked in at week three and I’ve had gradual improvement ever since.  My Rd felt it would be a great long term drug for me because it began to work so quickly. It has taken the inflammation in my fingers down and I can now wear all my rings.  Although they still look a little crooked, I guess that’s to be expected. I’ve had some nausea from the drug, but no vomiting. You do have to take it with food.  I started at 150 mg. per day and at last doc visit, she recommended we try lowering the dose to 125mg.  The nausea has decreased noticably. As far as the cancer risk is concerned, my Rd told me  (and I have since found research confirming) that the risk of cancer was found in the studies in which Imuran was originally used in organ transplant.   There have been no cases found in the use of Imuran for RA. However, Imuran is as you say an immunosuppresant.  We are at a larger risk for infection, so you have to keep that in mind.  I’ve had no problems with it so far except to notice I do not heal as fast.  So I take extra care in that respect. They take regular blood tests to check for white cell count.  At my last visit, my WBC had dropped to 3.2 and the Rd said she didn’t want to see it go below 2.5.  I called a few days after the tests and she said it had increased and she was pleased. Hope you get the same effect as I have.  I was pretty discouraged when I started on it. Paula – Hide quoted text — Show quoted text – Thanks Rose. Imuran is also an immunosupressant. It does carry a risk of possible development of cancer (lymphoma in particular). I hadn’t read about it’s boosting the effects of Prednisone. I do know it can cause blood abnormalities – that’s why frequent CBC’s. RD said not much affect on the liver, so monitoring LFT’s won’t be necessary. And considering my lung involvement discontinuing MTX could be an additional bonus, no chance of MTX induced pneumonitis now. My restrictive lung disease put me at an increased risk of developing MTX induced pneumonitis while taking it. Have also read that it can cause nausea and vomiting – so was also interested in anyone’s experience with that. Folic acid won’t save me here :(

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