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I saw the Rheumy today.....

Posted by on Feb. 13, 2009 at 2:13 PM
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 She 'clinically' diagnosed me with R.A today and told me the nodule in my hand was infact a R.A nodule. She is waiting for my labs and chest x-ray before she gives a 100% diagnosis.

She also told me that in the 2 weeks between now and my next appoinment I need to wean my son and get on birth control....what are condoms not a form of birth control anymore?

She handed me a pamphlet on Methotrexate as well and told me this is what she wants to put me on and to do some reading. I was reading through this and noticed that Methotrexate is only used on R.A patients with progressive R.A.

I'm wondering if she hasn't gotten my labs or x-rays back yet why would she want to put me on the 'harshest' treatment? Can't we just ease into this process?

How many of you ladies have had good luck with Methotrexate? Because I'm telling ya right now I don't think that is a med I want to be put on right away.

Give me some guidance please......

angela.gif Angela picture by mrsbejaran

by on Feb. 13, 2009 at 2:13 PM
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KellyOh72
by on Feb. 13, 2009 at 2:26 PM

I had no luck with metotrexate. It changed my behavioral patterns so they took me off it.

seeingspots
by on Feb. 14, 2009 at 9:42 AM

Arggg... I spent the last 17 minutes writing out a reply to you, and then when I went to add it, "poof" it disappeared!  Grumble.

Anyway, I was going to tell you that I was thinking about you all day yesterday and wondering how it went... just didn't get a chance to get online until this morning.  So sorry to hear that it most likely is RA; from the sound of things, your bump seemed like a RA nodule, so I guess it probably wasn't too surprising. :(

As for the Methotrixate, that's a pretty common first step for a lot of newly diagnosed RA patients.  And yes, it usually  is for when the RA is a little more involved, but if indeed it is a nodule, that means that you are already have some damage from uncontrolled RA, so the doctor probably wants to knock it down asap.  Methotrixate is also used for other purposes (for cancer and for termination of tubal pregnancies); since it is caustic for embryos, that is why they want you on birth control instead of just a condom... the failure rate for condoms is higher, and the Methotrixate can cause horrible deformations if not a complete miscarriage.  Also, a LOT of insurance companies (and I've had 4 different ones, as the jobs I've or my husband has had keeps switching) will not approve you for other drugs of for TNF inhibitors like Enbrel, Remicade or Humira without first trying the (cheaper) oral Methotrixate pills.  Both of the Rhuemys I've seen (in CA and here in MO) had to fill out paperwork stating that I've already tried and failed while on Methotrixate, in order to get my Enbrel approved for coverage.  And, just an FYI, but the Rheumy I was seeing in CA was "Arthur F. Kavanaugh, MD" (Director of the Center for Innovative Therapy in the UC San Diego Division of Rheumatology, Allergy, and Immunology); you can "Google" his name and you'll see he's at the top of RA research using biologics for treatment, yet he too started me off with simply Methotrixate.  (Kinda funny, as when I moved here to MO, my new Rheumy saw who I had as a prior Dr and was all impressed because he'd attended lectures himself with Dr.Kavanaugh-- and here I used to just tease around with "Dr.K" and even gave him some gorilla hair and stuff as I was working at the San Diego Zoo at the time.  I had no idea tha the was actually such a "big wig"!! :) LOL)

Anyway, point of all my rambling is that it's entirely normal to start off with Methotrix.  I was on that to begin, then it wasn't working so he added Prednisone (which is a steroid that will reduce inflamation-- idea was to try and knock the RA down, then the Methotrix. would have a better chance to work).  I did better with the two, as my joints were less swollen and my SED rate came down.  However, you can't be on Prednisone forever, as it will shut down your adrenal glands and causes other side effects (weight gain and immunosuppression are some), so after awhile he slowly started to wean me off of Pred.  As soon as I got below a point I "flared" up again with my RA, so it was clear that Methotrixate was not going to work... thus I got switched over to Enbrel.  If you really aren't ready to wean at this point (or so quickly!), you may want to ask your Rheumy about going on to Prednisone for a bit.  As I said above, it's NOT a cure and doesn't completely hault RA, but it does buy you some time.  It will go through the breast milk in small amounts, but is considered safe at lower doses.  I have been off Enbrel now for almost 4 years and just on Prednisone.... basically because I've always been pg or breast feeding!  I had my first son 11/2006, second 2/2008, and am now due 5/2009.  My Rheumy is anxious for me to have this baby (our last) and be done with breast feeding (I usually go at least 6 months- usually try for 12), so he can restart my Enbrel though, because my joints are starting to show the effect.  Although your Rheumy might see joint changes now that are significant enough to want to go on to something heavier asap to knock the disease down as quickly as possible.  Trust me, you don't want to let there be permanent damage... I had a substitute teacher in school that the kids use to cruely call "The Claw", because she had RA that raged out of control and permanently damaged her joints in to a knarled mess (course, back then they didn't have TNF blockers and the meds that they use today to hault joint destruction).

ANYWAY, I'm going to try and post this yet again and hope it goest through this time.  Feel free to send me a message if you have any other questions... I'm by no means an expert, but after 12+ years of dealing with it (and many different meds, labs, tests), I have lots of stories! :)

Take care and have a Happy Valentine's Day!!!

Cherie

mamatomy5
by on Feb. 14, 2009 at 10:17 AM

Awww.. Cherie, Thanks so much for all your help and advice. Sorry that all you r hard typing and thought didn'tget saved the first time around, I know for me typing is so hard sometimes so I can just imagine having to write it twice but again thanks!

I was a little freaked out yesterday, it takes me some time to process how I really feel about something and the first feelings usually don't last. I decided lastnight that I am just gonna 'trust' in God, and the doctor he took me to. I have realized that the stress of worrying about all this stuff is starting to affect me as a mother and wife and that is not fair to anyone who is around me, but at the same time I feel like I am almost in 'mourning', does that make any sense to anyone here? Is it normal to feel this way after diagnosis?

Major is our youngest son, and the only one I have successfully nursed and I am just sad, I know this sound a little stupid but it is just the way I feel.

I figured R.A wouldn't start affecting my life right away but it is. I am gonna talk to the doctor after she gets all my labs back and we can see just how active my R.A is and take it from there.

I am also gonna start a post on one of the brestfeeding groups to get advice on weaning. I gave him a bottle lastnight, I know it seems kind a weird to offer a bottle this late in the game but at this point I am just trying to find something, anything to take the place of nursing. Of course he played with it more than anything but he asked for it this morning but now won't take it and is following me around saying 'num-nums'.

But slowly I am coming to terms with everything and like I said giving it to GOd and it is what it is, I cannot change anything so it is time to start to deal with it. 

 

angela.gif Angela picture by mrsbejaran

emimom
by Member on Feb. 15, 2009 at 11:04 AM

I was given a diagnosis of RA August of 2007 and I still feel like I'm in mourning. I have talked to other moms with auto immune disorders and they say the same thing that it takes awhile for that to go away. All you can do is live one day at a time. I have good days and I have really bad days. I am only on prednisone right now because I am trying to get pregnant but my RA doc also wants to put me on methotrexate..it's hard to say ok to a drug that might give you worse side effects than the disease so I feel you on not wanting to go straight to that. I wanted her to try plaquenil first but she says i need something stronger. I have to try methotrexate before i can try anything like enbrel or remicade because my insurance won't cover it otherwise. Please keep me updated..I would love to talk with u again..seems like we would have alot to talk about. (:  Keep the faith.

 

Candace

LWRIGHT13
by Member on Feb. 16, 2009 at 5:37 PM

I was told by my OBGYN that conventional birth control will not work with some of the meds Im on for RA methotrexate being one of them.  So you may want to check and see  what methods are best for your situation or just use condoms as you mentioned.  If you  however accidentally get pregnant(while taking methotrexate) the prognosis is grim for the baby and most likley you will miscarry, this happened to me before anyone told me about the meds affecting my birth control.    Metho seems to work well for me but I have been noticing some behavior changes lately so I have to talk to my doc about that. Best of luck to you with this I was diagnosed when I was 23 (im 28 now)and have a very severe case, it came on a destroyed joints really fast.Ive already had a knee replacement and had lots of immune issues.  Its taken alot to get to being ok with it. I still have my days though where I hate it and am still angry, stay strong on those days dont let it beat you!!

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