[katie]

Hi. i'm a new mom (my son is almost 6 mo old), who is breastfeeding and i have just been diagnosed with "severe and aggressive" ra. the rheumatologist i went to was very dire in her assessment of my disease and told me i was going to be disabled in a year if i didn't get treatment. so i'm on prednisone and plaquanil. they seem to be hleping. i can now walk up and down stairs, hold my baby, etc (it was very difficult before. had to have my partner switch sides when nursing, help me shampoo my hair). i'm supposed to get my blood checked again in a while and if i'm not "dramiaticlly improved" i "have to" quit breastfeeding and go on some heavy duty stuff.<br><br>
the more i think about my rheumatologist, the less comfortable i am with her. she kept driving home that i had a "HORRIBLE horrible disease" and left without giving me any opportunity to ask questions. didn't even say good bye so that i knew she was leaving.<br><br>
i don't want to quit nursing my son. it has been such a struggle to get my supply to where it is now, and he really relies on nursing for things like sleeping at night and mending his booboos (especially since hes starting to crawl) i don't know if i'm going to be able to have any more children and i am not ready to be done with this time in my life. at the same time, i want to be able to pick up and hold my toddler, even if not to nurse. and i hope to be a midwife someday so my hands are quite important to me.<br><br>
my mantra: doctors are not the boss of me, but a consultant. i guess, aside from venting, i'm looking for anyone else with ra - did you nurse while you were diagnosed, did it prevent you from having other children, if you're in the twin cities - who do you see?<br><br>
thanks for listening,<br>
katie (and kellan - the little milk man)

 

[Jane]

I hate rhematologists. I haven't met a nice one yet. I get my care from a family doctor who was nice enough to take on my care. I know I might have to go to a rhematologist in the future, after all, my family doc is not so good with the more advanced drug combinations and such, but I just couldn't deal with what you are facing from your doctor. Try the about.com forum for lupus and rhematoid arthritis. There are people there who know sooo much and will help you out.<br><img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug">

 

[boobs4babes]

I really know nothing of this disease except for how much anguish it causes my own mother. I cannot imagine how you much be feeling. I am so very sorry you have to go through any of this! I wish you the best of luck and please keep us posted. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/smile.gif" style="border:0px solid;" title="smile">

 

[NewEyes]

I was finally diagnosed with RA when my son was 14m old. I'd been living w/it for months not knowing what was wrong w/me. My rheumatologist in Sacramento,CA was very supportive of my BFing my son. Coincidentally, my son weaned 1 m. later & I started methotrexate/prednisone combo. It still isn't working very well, but my Dr. is optimistic that we'll get something figured out.<br>
I understand the pain, the worries of getting through the day, wondering if I'll have more children... basically everything you said. My son is now 18 mth. old. If you need any tips on how to cope in future months as your son is more active, I've got some creative ideas that are working:<br>
A slide in your living room<br>
Blow bubbles indoors<br>
a pail of water on the kitchen floor & cups<br>
teach him to play "catch" (it's more like fetch)<br>
SLEEP when baby sleeps.<br>
People w/RA need AT LEAST 9-10 hrs. of sleep a day.<br>
You can do all these things sitting until your joints loosen up.<br>
I'll log back in when I can to see how you're doing & if you want to email me again.

 

[PikkuMyy]

Check out the use of Omega oils for treating RA. I don't have it but I do have lots of immune problems and taking lots of Omega-3 (flax oil) and GLA (borage oil) has really helped me. I've read about it being used to help with RA. My aunt has it. I also met a woman who had lupus for years - she takes a LOT of Epsom salt baths and uses Traditional Chinese Medecine and acupuncture.<br><br>
Try to stay away from prednisone if possible. I've taken it and seen others taking it for asthma and the long-term results are not pretty.

 

[shannon0218]

Hi there, I have RA and was diagnosed 12 yrs ago, so I've pretty much ran the gamot on symptoms and treatments.<br>
I was managed quite well on Methotrexate (you must take folic acid with it and with pred--did they tell you that??) I used to have a flare about once a year and my rhuematoligist was actually doing a little study on seasonal flares--without fail, I seem to get a nasty flare EVERY August and for the last 12 yrs when she went back in my records, each time it has been within 10 days of August 3rd. She says that while it isn't really documented yet, she has seen similar in others.<br>
Anyway, I went off Methotrexate and onto Pred when I first started TTC, I was managed nicely on only 2.5 mg of pred a day, went into remission almost immediately when pregnant (each time) however, it seemed after each m/c, I was needing more pred. At this point I have had a horrible flare for the past 2 months. I am at 25 mg of pred (which my doc is desparately trying to reduce) I have had more joint injections than you can shake a stick at. (btw, has anyone suggested that for particularily flared joint?? Much less of the steroid goes systemic adn you generally get relief within a day. I get my wrist, elbows and knees injected and twice my hip) Pred is a nasty drug, but I gotta tell ya, RA is a nasty disease too. The doctor we're seeing regarding our recurrant M/C's wanted us to wait another few months so he could do more testing, but my rhuematoligist has now jumped in and really pushed that it's now or never, she absolutely does not want me on that kind of dose any longer. So she is working together with my reg. OB and after an IUI (today) I am also on baby aspirin, heparin and progesterone suppositories (basically--being treated for anything that can be treated for that causes people to loose pregnancies)<br>
I will say, my rhuematoligist is wonderful, she is very caring and spends a great deal of time answering questions and is quite non-alarmist--which is why I listened when she insisted we not wait any longer.<br>
It's so hard when you know a drug that CAN"T be taken when nursing or pregnant will work.<br>
One thing, have you tried Enbrel?? It's fairly new, but safe for nursing and TTC (we were to stop it at positive preg test) I can't take it as I seem to have an allergic reaction, but it's a protein, you inject yourself twice a week. Safety looks GREAT (lets face it, you can be allergic to safe things--my dh is allergic to bananas!) I've heard from many that it is like a miracle drug. It is however VERY expensive, our drug plan covered but we have a really good one, however the company steps in and offers quite a bit of help.<br><br>
I would suggest trying to find a doctor you can work with, you will have this for life, you need to feel comfortable with your care provider.

 

[NewEyes]

Thank you for sharing your experience. I didn't know Enbrel was ok for BF! I thought only pred. was ok. That is good to know. There was a good article a few issues back about Medications & BF in a La Leche mag. It talked alot about how to talk to Drs. about wanting to BF & to find meds that will work with that.<br><br>
Katie, I hope you find a Rheumatoligist that will work with you. You & your baby deserve it!

 

[katie]

THANK YOU! to everyone who has responded. i do not feel so alone! my ra factor has come down from 834 to the 400's after only a week of pred. and plaquenil and i'm hopeful that it will be reduced even further after i've been on it the prescibed two months. i am going to be tapering off the prednisone in the next week or so. i hope my confused immune system doesn't sound the alarm to start attacking itself again.<br><br>
after hearing all of your stories, i feel that i have a much milder case than my rhuematologist believes i have. i havne't had to take advil for weeks, i can walk up and down stairs, i can life my baby without a thought and am able to wear a one shoulder sling now (which makes all of our lives easier).<br><br>
thank you for the tips on omega 3's and folic acid - i DIDN"T know i was supposed to be taking that. i do take a multi vit, but it couldn't hurt to take f.a. i did notice, before i started meds, that taking a 100% calcium suppliment seemed to help my symptoms as well.<br><br>
i can't thank you all enough. i am going to go to the next appt with my current dr and if she seems reasonable, i will give her a chance. if she doesn't, i have the name of another in my health plan. kep me updated on all your stories, and i'll try to do the same!<br><br>
love<br>
katie and kellan (who had his first sweet potato today!)

 

[shannon0218]

Hi Katie, I'm guessing she may have thought your RA was worse just because of you #'s, however, people can have bad RA and not have a measurable factor. It really is a disease we don't know enough about.<br>
What does of pred are you on? Before TTC my doctor liked to keep my immuno-suppresive drugs only high enough that a couple doses of Celebrex would be enough to settle my joints down. (I have no idea if you can use Celebrex while nursing though)<br>
I wish you the best, PM me if you need to talk, it is a crappy illness, but it's for the most part managable.

 

[stafl]

my mom was dx with RA... went to an allergist several years later for hayfever. after extensive tesing, it turns out her RA was actually a food allergy. She cut potatos and tomatoes from her diet and the crippling arthritis went away. Before she figured it out, she swore by sassafrass tea.<br>
I know it's an unusual story, but just wanted to share, just in case...

 

[shannon0218]

Well RA symptoms can be helped by the elimination of night shade veggies (she actually shouldn't need to give up all potatoes, just the white flesh ones) You shouldn't show an RA factor in blood unless you have the disease, but like I said earlier, lots of people are diagnosed with bad RA even though they don't have a measurable factor.