Stopped my methotrexate! | Arthritis Information

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Had my first visit with my rheumatologist this morning.  The guy's a little gruff, but I think we'll get along.  He asked all the usual questions, I guess, checked my joints and mobility, and said what I had been thinking for a while ---- there just isn't the kind or amount of joint damage he'd expected.  We discussed my Rheumatoid Factor, which has gone up to 2000+, and he actually said, "Well, that doesn't mean anything." 

 
I do have significant lung damage, and he wants to find out if it is due to RA or to methotrexate toxicity.  And I'm actually going to get off the mtx to see what happens.  Whoopie!  (I hope.)  He said to let him know if "all hell breaks loose"......
 
He also said he doesn't think that RA can go into an actual "remission", but he wants to see if I'm actually that much better, either with or without medication.  
 
Then I had 7 tubes of blood pulled and 30 (!!!) x-ray views taken.  I expect I can unplug the nightlights tonight because I'll probably glow in the dark!
 
I see him again in a month.  Fingers crossed (as well as I can) that I don't relapse into the kind of pain I had four years ago when all this started!   
It's such a strange disease, numbers don't mean anything, pain comes and goes, and complications occur......It stinks and I'm so sorry that you're dealing with this.  What type of lung issues do you have?  I have ILD (pulmonary fibrosis) secondary to RA.  Are you having any pulmonary symptoms?  Sure hope "all hell" doesn't break loose.  Keep us posted on how you do.  LindyThanks, Lindy.  It's interstitial lung disease and, yes, in the last few months I've noticed shortness of breath and a deep cough.  I'm sorry you have it.  What treatment(s) do you have to do for it? HI Cat, I am really hoping that the RD is right and that you may have gone into "remission", that would be just wonderful, I shall keep my fingers and toes crossed, well as best I can, actually some are already crossed on their own

I've stopped the mtx due to lung issues as well.  Got an abnormal CT scan in July.  So, off the mtx to see if that is the cause.  Basically dr said-if it get worse, we know it's not the med.  hmmm.....

 
 
 

good for you, cat.... I hope!!

I hate reading about lung issues...   I hope that clears a bit...and I hope my isn't associative to MTX.....   I actually hope mine is gone!
I am sorry to hear of your lung issues, Cat. I hope you do not get worse with being off the MTX.
 
Much hugs to you.
I'm sorry about the lung issues too...Best of luck for no relapse! I'd be a little afraid too. A month is not very long until he'll see you again so if he needs to start you on something else it can be done then.

If I understand you right, you have very little joint damage?  That's good news.  If the lung damage is due to the mtx, is that something that can be turned around?  We'll hope for that, right?  If you should flare during the time your off the mtx, will you start a different med, or get back on mtx?

My very best wishes for a perfect outcome after stopping the MTX and that you be flare free forever.

Cheers, Shug
Gee, thanks everyone for all the good wishes.  I feel better already!!!
 
I guess it's one step at a time.  I don't have a clue what the doctor will do in any possible scenario.  All I can tell you is that I just bought a new motorcycle ----- and on the good days I'M RIDING!  You should see the looks I get; I'm the 62-yr old white-haired Biker Babe!

I'm just excited to be off one of my meds for now.  Sometimes I think I'm more sick of taking pills than I am sick.  I stopped taking my Nexium two days ago and --- so far --- I'm GERD-free.  We shall see...... 

Was MTX all you were taking Cat? I was taken off of MTX a while back due to elevated liver test, but I was also using Humira so I really haven't missed the MTX nearly as much as I feared I would for years. I did go through a little bit of adjustment, but pretty quickly adjusted.
 
Hope things go well for you.

Yes, Lovie, mtx is all I've ever been on.  But, you see, I was going to the free clinic and no one there would (or could?) prescribe anything else, and they really didn't know enough about the disease to make that kind of decision. 

I did have a short consult with a rheumatologist, through the clinic's program, earlier this year, and she ordered a whole bunch of tests because she was actually concerned that I don't even have RA.  She was looking for something else that could cause all my symptoms.  And she was concerned about the mtx's effects, especially if I really didn't need it.  I had to wait until I got insurance and "my own" rheumatoligist, because the people at the clinic didn't have knowledge of the tests or how to interpret them.

I have a feeling that my new rheumatologist is doing the same thing --- searching for answers.  The one thing that does feel good is to finally see someone that understands immune system disorders and who may (I hope) figure me out!
 
I assume, Lovie, that you are doing as well on the Humira alone as you were on the combo? 
I'm glad you are feeling so much better.  Yeah! for being off meds.  That is awesome.  I bet the biker babe on a motorcycle has something to do with it
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