remission from methotrexate?

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firebabe
Regular Member


Date Joined Aug 2007
Total Posts : 206
   Posted 11/5/2008 7:32 AM (GMT -7)   
I've been on Methotrexate for about a year now.  When I started it last year my doctor said I'd probably be on it for about a year and then hopefully my body would be in remission.  I go and visit my Dr. next week and I really want to let him know that I think I'm ready to be off meds.  I know that doesn't just happen that way, but I guess I'm wondering if anyone knows what doctors expect to see in a remission?  I feel better, the last 3 or so blood draws I've had appear to be more normal than in the past, but I'm now sure if there are other things doctors look for as well. 
 
Pretty much my argument consists of me telling him that I've been taking 3 work-out classes a week and volleyball once a week and I've had very minimal amounts of pain-probably due to my "age".  Although I have been fatigued, probably more now in the fall time than all summer I think I'm ready to be off meds, plus I think it would be a good idea for him to check my vitamin levels and make sure I'm not deficient in anything.  That last time I made an appearance at the ER they said I was borderline anemic-which I've never been told before.
 
Anyways, if anyone has any insight for me that would be great.  I'm making my list of things to go over with the Dr. when I see him and I may need some ideas.
 
 
Thanks!  yeah
~Firebabe~
 
"Challenges make you discover things about yourself you never really knew."
 
SLE and Class II Lupus Nephritis


AlwaysRosie
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Date Joined Jan 2005
Total Posts : 8616
   Posted 11/5/2008 9:41 AM (GMT -7)   
Hi Firebabe,

So glad you are feeling so much better. I was ready to try going off the mtx, at one point, and my rheumy said, "we won't know if it's the meds or remission unless we taper the meds". I went home and carefully tapered the mtx . . . but my symptoms returned. sad But after another while, I tried again and I've been off of the mtx for a good long time now. YEAH! (but remember that I never had organ involvement or the extreme of symptoms that lots of you here have had)

I hope your Dr. visit goes well! Keep us posted.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


firebabe
Regular Member


Date Joined Aug 2007
Total Posts : 206
   Posted 12/1/2008 6:45 PM (GMT -7)   
Always Rosie-
Which symptoms were the first to return? I got to take 2 of my pills away now and lately I feel as though I've run out of pep. especially when I try to exercise. I feel as though I'm moving in slow motion. I was wondering if maybe that was my sign and I should be extra careful. Thanks.
~Tammy~
 "Challenges make you discover things about yourself you never really knew."
 SLE and Class II Lupus Nephritis


Bsime
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Date Joined Apr 2006
Total Posts : 1299
   Posted 12/1/2008 8:11 PM (GMT -7)   
Remission is no meds, no symptoms.  As long as you are on meds you are not in a true remission.  The only way to know for sure is to taper off meds and see if your symptoms reappear.
 
Do not be too anxious to get off meds.  Too many people can't wait to get off meds as soon as symptoms disappear or out of fear of side effects.  That is often a mistake.  It takes time, sometimes several years, to "normalize" you immune system.
 
I have been tapering for almost 3 years and been asymptomatic the entire time.  Just discussed further taper with my doctor and will try to finally eliminate prednisone in a few months but wait for about a year after that to stop taking imuran.  No rush since I am doing so well and have no side effects.
 
Bill
Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena, Hypertension, Barrett's esophagus.
 
Meds: prednisone 5mg, 50mg imuran, Lotrel 40/5mg, maxide 37.5/25mg, folic acid, potassium, aciphex 20mg, multi vitamins.
 
Maintain your optimism and you can beat the odds.
 
"Although the world is full of suffering, it is also full of the overcoming of it."  Helen Keller
 
 


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 12/2/2008 11:09 AM (GMT -7)   
Well said Bill. I've tried to quickly get off meds because I was feeling better and would wind up on more meds in the long run. Be careful! Judy

firebabe
Regular Member


Date Joined Aug 2007
Total Posts : 206
   Posted 12/2/2008 6:39 PM (GMT -7)   
Thanks for the responses.  I guess maybe I'm a little anxious because my Dr. estimated (ha) about a year, and I would like a baby someday.  Its so hard to not be able to have what you want and my hubby isn't very easy to talk to about adoption.  It hurts even worse because we lost one by ectopic 2 years ago.  I hope this isn't wishful thinking that I'm maybe in remission, but I have to be honest with myself-I have been tired lately.  Oh well, I will see what happens in a few weeks.  Thanks again!
~Tammy~
 "Challenges make you discover things about yourself you never really knew."
 SLE and Class II Lupus Nephritis


momto3
Veteran Member


Date Joined Nov 2006
Total Posts : 1331
   Posted 12/6/2008 8:02 PM (GMT -7)   

Hi Tammy,

I take MTX for my RA and when I read your post about going to the gym and working out a few times a week, I thought to myself, gosh that was me in August.  I was taking Enbrel, MTX and Plaquenil and it was sort of my magic cocktail and I had that energy as well.  I lost the Plaquenil and I'm now down to the MTX (8pills) and the Enbrel and a couple of times, I tried tapering down to see if I really needed the MTX and my joint pain returned with a vengence, and I ended up needing a Medrol Pack to get me out of my flare.  My rhuemy has told me that a remission is highly unlikely even though I"m sero negative.  I have been told that I pretty much will never get off of these meds which is really discouraging to say the least.

I'm remarried and my husband has no children biologically and the pressure is on to have at least one child, but like you, I'm not sure how I'm going to get off the MTX rolleyes  and manage my pain in the process.  Also like you adoption doesn't seem to be an option for us either, and we are already going the IVF route as it is.

I don't see many ladies post who are taking these medications and also contemplating a future pregnancy.

I hope that you are able to go into remission, and won't need your MTX.  I wish you the best!!!

 


firebabe
Regular Member


Date Joined Aug 2007
Total Posts : 206
   Posted 12/6/2008 8:44 PM (GMT -7)   
Thank you so much momto3. My doctor seems to think that I will get into a remission, but there are so many people on here it seems that have been on meds for years with no relief. It's so disappointing to say the least to not just be able to have a child. I started to get sick about 6 months after we got married and its been nothing but dissapointment ever since. When I was a kid I used to dream about having my own children and how I would raise them and I would teach them things and I just really thought that I would have kids. Strangely enough though I never imagined myself being pregnant even having a young baby-they were always toddlers and older. Maybe I've always known that I would be destined to adopt. I don't know. My rheumy is very good and understanding about everything and I think eventually if I'm not getting into a remission we may try something else because he knows how much I want just 1 child. Especially since I started bawling when he said I could not try to have children until we got this under control (that was almost 4 years ago, I was diagnosed 1 1/2 years ago). As he always says, he tries to make things easier on me because I didn't exactly choose to have Lupus. He really is great.
~Tammy~
 "Challenges make you discover things about yourself you never really knew."
 SLE and Class II Lupus Nephritis


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7020
   Posted 12/6/2008 8:52 PM (GMT -7)   
I do believe remission is possible for many Lupus patients. I've been having continued improvement since my 18 months with Cellcept (ended about a year ago) and am slowly going down on my Prednisone. Last checkup 6 weeks ago my bloodwork was PERFECT! My ANA was never the highest, but I had high inflation markers until quite recently. My symptoms are much fewer than they have ever been. With cancer they now consider you 'cured' if you don't have recurrence in 5 years - so even if I have to continue with Plaquenil forever I'll consider it remission if symptoms are slight for over a year.

I hope everyone who wants to have children can find good support - by doctors, with medications, with family, and with whatever else you need to have your little miracles appear healthy & happy, soon!

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, Seasonal Affective Disorder, Depression, Herpes Simplex 1
Plaquenil, Prednisone(8mg), Piroxicam, Xanax(as needed), Trazodone, Boniva(monthly), Wellbutrin SR, Valtrex
Links: DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


momto3
Veteran Member


Date Joined Nov 2006
Total Posts : 1331
   Posted 12/7/2008 2:36 PM (GMT -7)   

Hi Tammy.

We were in the process of IVF since I have tube issues, and was told I would be a great candidate since I have children but they are now teenagers and the youngest is 11, so I'm not getting any younger if you know what I mean nono Anyway, I never made it to the retrievals and was finally told that my FSH was that of a woman in menopause shocked I was in my early 30 shocked 's and then I ended up with the joint pain or RA if you will.  My rhuemy is great and has told me that I will need to go off of the MTX three months prior to trying and this is how we refer to it "trying"..and then he told me that the joint pain will return within in 6 months of delivery.  Not the most positive and uplifting doctor!  Since it is just RA, I think I just wean off of the meds and deal with the joint pain, but with Lupus, it is a very different story. Although, I think I read a post by a lady who went through pregnancy with Lupus on this board maybe?

I think for myself if I don't have another child I will be alright, but it bothers my husband so deeply, that it has really caused a rift in our marriage.  I hope so much for you that you will go into remission and not have to feel joint pain :-)   and get pregnant.  Lynnwood is great testimony to the fact that it can happen.  Think positive thoughts!!!

Lynnwood, that is such wonderful news for you, and I hope you continue to be well!


Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1299
   Posted 12/7/2008 2:51 PM (GMT -7)   
Speaking from a man's point of view I would NEVER have asked my wife to become pregnant if it would have endangered her health in any way. 
 
Bill
Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena, Hypertension, Barrett's esophagus.
 
Meds: prednisone 5mg, 50mg imuran, Lotrel 40/5mg, maxide 37.5/25mg, folic acid, potassium, aciphex 20mg, multi vitamins.
 
Maintain your optimism and you can beat the odds.
 
"Although the world is full of suffering, it is also full of the overcoming of it."  Helen Keller
 
 


firebabe
Regular Member


Date Joined Aug 2007
Total Posts : 206
   Posted 12/7/2008 5:03 PM (GMT -7)   
My husband is being so patient and so am I -what choice do we have. But, pregnancy and Lupus is possible and can be a normal pregnancy. It doesn't have to be terrible with a lot of extra precautions or it could be. I guess you take that gamble with any pregnancy. Every woman experiences it differently. I don't think he would ask me to become pregnant if my doctor were against it. He listens to and likes my dr. alot and we both think alot of him. I'm generally in good health considering and I think my Dr. takes that into consideration also.
~Tammy~
 "Challenges make you discover things about yourself you never really knew."
 SLE and Class II Lupus Nephritis


momto3
Veteran Member


Date Joined Nov 2006
Total Posts : 1331
   Posted 12/7/2008 9:39 PM (GMT -7)   

Hi Tammy,

I understand so much the fact that you want to be a mom :-)   As you said you are healthy and you have a great doctor, so there is no reason not to try.  We have money invested at a clinic at this point, money that was there before the RA hit, so we waited for three years, hoping that it would go away, since all of my tests have always been negative, but it looks like it is here to stay, so like you I'm just going to hope for the best at some point!  The good news is that the joint pain normally goes away during pregnancy so maybe symptoms are relieved for lupus as well?

I'm thinking of asking my doctor for prednisone when I do start to taper down off of my MTX, so hopefully this will be a possibility to ease the joint pain if it gets to be too much.  I have a low tolerance for pain!

Please never feel the need to explain yourself..I have had to do this with people who don't understand why I would want to attempt this with my RA etc etc etc. If you want to start a family it is your own personal choice along with your husband.

 

 

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