Hi everyone, I'm Kate, I'm new and I'm thrilled to find your site. I've really ben struggling since my diagnosis in Dec. I was doing well on prednisone and Enbrel but I'm struggling with a flare that is in my jaws, kness, feet, and hands. My dr was changing my meds around b/c I'm trying to have a 2nd child. I had switched from pred to dexemethesone but then I got dizzy and had tingling in my face. My rheum worried that it was the Enbrel and did an MRI - normal thank goodness. I ended up going 11 days w/o the Enbrel and I felt the flare starting, so I took it on Mon and upped my pred. I see my rheum next week. She's wonderful and I'm blessed to have her.
Questions for you, if you don't mind me being so me-me right away
Dear Kate, Welcome!!
Oh how awful to feel worse after taking the medication. I'm pretty new here myself, and I'm delighted you are posting. I think it is great FUN to think we would get to know you on this board and you would have a baby and we would all know about it and enjoy your 'accomplishment'. I hope others here can help with what to do about meds and pregnancy. I'll be so looking forward to your progress!!
I haven't taken enbril, but my experience with methotrexate and remicade is that you never know when it is going to work or keep working! This stuff we have is nasty and the meds need to be sorted out (how often, how much, etc.)so even with that said, we can have flares and ups and downs with treatment. I couldn't live without prednisone right now, but everyone is yelling at me (dr/husband/friends) 'that's nasty stuff get off of it'! So I'm trying.
I hope you feel better with your jaw, knees, feet and hands. We've found that STRESS (that sneaky demon) causes us flares,
Sarah
(((Hugs))) I have PCOS too! But it really doesn't matter since I have had my kids (working on grand kid #2) and have had a hysterectomy due to severe endometriosis and uterine cysts. I wish you all the luck in the world with the fertility treatments! Keep us posted on those!
I do not do Enbrel so I do not have that much info for you on that. I do take humira and have had a couple of major flares with it. But got them under control with pred.
Welcome to the board!
Hi, Kate
I'm new too--I was dx'd in December also. One thing I have learned from this board is that everybody with RA is different and we all react differently to the medicines we take. My advice is to work with your doctor and also to keep reading the messages on this board--I did that for a long time before I finally got up the courage to post and it's helped me a lot!
Best of luck, Sula
Welcome to AI Kate!
I was on Humira for two years and I was very sick with a sinus/bronchitis infection at one point and had to be off all meds for close to a month. I did go into a pretty bad flare that took quite some time to get over. Once I re-started my meds it took longer than expected to get me back to where I was before the illness.....but it did happen. After stopping a biologic; it's been my experience that it takes a while for it to work as well as it did before....but don't give up; it's very likely things will be fine given a little time.
RA is thought to be connected or related to hormones. We've had several discusions here about the possible connection. I'd do some major research before starting these injections you mentioned. Good Luck,
Again; welcome to AI.
Hello and welcome. I went though the whole fertility "thing" as well, ended up in 5 miscarriages and no live babies. I was healthy until after the second or third miscarriage. Then the signs of ra started. It went undiagnosed and we moved on to the fertility treatments, I did clomid, femera, repronex, gonal-f, all with hcg injections and porgesterone supplementation.Welcome to AI.
I also take Humira, but I do seem to notice it takes a bit longer for it to kick back in after you have stopped taking it due to infection.
Pred is my life saver, without it I would not be able to do what I do when I am off Humira due to infections.
I do get flares while on Humira, but they do not seem to be as bad as when I am off Humira.
I hope the pregnancy goes well, keep us posted.
Welcome!Thank you for the warm welcome, everyone. It really is a blessing to find other people who can relate to how unpredictable and frustrating it is to live with RA.
Sarah, I'll keep you posted. I would love to get to know you all and be able to share a pregnancy and birth with you! Hopefully I'll have news in a few months! I share you concerns about the pred. It's aggravating that after all these years, it's the go-to drug that it hard to give up. I'm back on 8mg, although I know I should probably go up to 10, I'm resisting!
Grammaskittles, I'm glad you can relate to the PCOS stuff. I'm sorry to hear about your other GYN concerns, but glad you're able to enjoy your grandbabies. They said it's God's reward for not killing your teenagers.
Sula, I guess Dec wasn't the happiest month for us, huh? In a weird way I was relieved to be dx. It explained all my symptoms over the past few years. However when I flare, I feel frightened all over again and I lose track of the fact that I'll eventually get better and back to life. Someone told me that RA has effects on your CNS and that when you flare it's normal to feel depressed. I guess that makes sense.
Lovie, you raise a good point, and I was wondering how all those crazy hormones would affect my RA. I'm thinking maybe I should take a few months and hit the pool and gym like a crazy person - at least when this flare dies down. Maybe that would lower my testosterone naturally and get me to ovulate. When I got pg with my son, I was on metformin for the PCOS and also going to the gym regularly. I have a new job now, and I'm pretty sedentary.
Michele, thank you for the warm welcome, and many hugs to you re: your pregnancy losses. I can't imagine how difficult that must have been for you, especially after the roller coaster of infertility treatment.
Joonie and Marian, did you go right to Humira, or did you try other anti-TNFs?
Thank you for the warm welcome everyone. I look forward to getting to know you all and go further on this journey together. Kate
Humira is the first biological I have tried. Before that was just MTX, Arava, and the creeping up the list to biological meds.
I was going to try out Enbrel first, but my RD opted for Humira, since I have a needle phobia and it is one less needle, well was before I got put on once a week instead of once every 2 weeks.