Anyone with arthritis or connective tissue disorder?

Snow1010 · July 2011

About 3 years ago I was diagnosed as hypothyroid....then 2 years ago I was diagnosed with connective tissue disorder.

I was seeing my primary physician for hypothyroid and that was an "easy fix" with synthroid. But, I began to get arthritis-like symptoms in my wrists and hands so was referred to a rheumatologist.

My symptoms mimic rheumatoid arthritis and/or lupus, but after countless blood tests, the markers for these conditions were NOT present. So, I was basically diagnosed as having some sort of connective tissue disorder.

About 1.5 years ago I began taking plaquenil. Plaquenil takes up to 3 months to take affect and I was only taking this a few months before becoming pregnant.

As soon as I found out I was pregnant I went off the plaquenil (this pregnancy was a surprise or I would have stopped using before becoming pregnant).

I was very lucky because I didn't have flare ups and felt pretty good...up until about 30 weeks. Now at 35 weeks it's getting really bad...but as usual, the symptoms are only in my hands/fingers/wrists.

When I wake up in the middle of the night and first thing in the morning I can barely open my hands...my fingers are extremely swollen, stiff and painful. Throughout the day it does get better, but not completely.

While I would like to breastfeed, it's not looking good. With the awful symptoms I am having, I really think I need to go back on plaquenil as soon as I give birth. Based on what I've read, some doctors say plaquenil is ok during BFing, others say it is not. I left a message for my rheumatologist asking his opinion and am waiting on his call back.

Sorry for this long post, but I'm just wondering if anyone else has arthritis, lupus or a connective tissue disorder...what was your experience during pregnancy and right after? Have you or are you taking plaquenil and did you BF while taking this medication?

kristisnod · July 2011

I have RA and had a lot of pain for several months throughout this pregnancy. Lately I have felt a lot better, so hopefully I will be able to hold out on taking any meds again after birth so I can breast feed. The meds that I was on before seem to be unknown of what they do during breast feeding, so I would rather not take them if I can to be extra cautious. I am going to talk to the lactation consultant at the hospital and see what she says as well. Hopefully you can hold out a little bit to bf for a short period. If not, your baby needs you capable of using your hands, so you will have to do what you need. I am sorry I don't specifically have any experience after birth, but if you need any support feel free to pm me anytime. I know it is very painful and frustrating at times, especially when the answers are not clear cut. I hope you feel better soon.

Yellow_Daisy · July 2011

I have RA as well. Your rheumatologist should have explained that the Rheumatoid Factor blood test is not very accurate and only about 60% of the people with RA actually test positive. The other 40% fall into a category of RA called Sero Negative RA. There are a number of tests that can used to diagnose RA even if the Rheumatoid Factor comes back negative. Your rheumatologist can use your ESR and C-reactive protein in addition to a physical exam to make a diagnosis. Also many RA patients don't test positive on the Rheumatoid Factor blood test until they've had it for a few years. All that said you should just know that the RF blood test is not very accurate and most rheumatologists feel that diagnosis still needs to be done via several tests and a physical exam.

My RA has been very controlled throughout the pregnancy, I fell into the 85% of patients that go into pregnancy remission. Up until about 36 weeks when a fairly major flare hit. It really hasn't gone away. My hands, wrists, shoulders and feet are most affected right now. Needless to say I am back to plastic cups and plates after dropping and breaking too much glass (I lose a lot of hand control during flares). If I want to BF I have to stay off my meds since I take low dose chemo as part of my treatment protocol. My rheumatologist said that the hormones from BFing can mimic the pregnancy hormones that put you into pregnancy remission so she is suggesting I try to BF to hold off the post pregnancy flare. My doc says that once the hormones drop I should expect a flare up and it will probably be the worst flare I've had and that my RA could come back more severe than it was pre-pregnancy. All that said my doc and I are prepared to start me right back on my med protocol after birth if the flares don't subside, in which case I would FF my LO. My thought is you have to do what you have to do to take care of your baby, whether that be BFing or FFing.

I don't take plaquenil anymore because my RA is too severe and it doesn't work. I take Enbrel injections, Feldene and Methotrexate. You could ask your doc about a course of prednisone for fast relief from the flare, I don't know if it is safe for BFing though.

Anywho I guess I will find out in the next week or so if my pregnancy remission is going to continue or if I will be back on my meds.

Snow1010 · July 2011

Thanks so much for the responses!

My doc did explain that not all people with RA have positive blood tests. Over the past couple years they've done so many blood tests, but I don't recall ESR and c-reactive protein being mentioned...I'll have to ask.

While the docs were trying to diagnose me, I had very unusual and severe swelling in my right wrists. They decided to do a surgery in which they removed tissue from the swollen area to biopsy...so desperate for a diagnosis I went ahead with the surgery. What a waste...no answers, but left me with a nasty scar and limited movement in my wrist!

I was really hoping that my pregnancy would prevent a flare, and I was lucky the first 30 weeks....it's bad now and I just hope it doesn't get worse.

I do have prednisone to help with flare-ups...it's a small dose and I only take it every few days. It does help, but I know it's not a medication you want to be taking long-term.

I think at this point I need to stop stressing about breastfeeding. I think it's the unfair social pressure that stresses me out! I need to just accept that I need to do what's best for me....which at this point is going on my meds immediately after delivery. I need to be able to pick up and hold my baby!!! I'll plan on BFing the first couple days so my baby can get colostrum, but then switch to formula.

KatieW78 · July 2011

I was diagnosed with JRA when I was 13. I went into remission when I was 18 and have had no symptoms, until I hit my 2nd trimester. I've had some severe and some mild flare ups. One thing I am doing to prevent flare ups is really monitor my allergies, limiting the need for my immune system to get going. I found that every time I had an allergic reaction (to cats, pollen, mold, etc), a day later, my RA would flare up. So now at the first sign of an allergic reaction, I take an approved OTC allergy pill, which I carry with me in my purse at all times, and my flares have reduced significantly. When I can't take one, I have a minor flare. I figure the allergy meds are better than going on a steroid.

I can't speak for after delivery since this is my first, but I am worried. I thought I was done with RA. I am planning on BF, but being able to physically care for my child will supersede the benefits of BF.

Good luck! I hope you feel better soon.

Want a personalized experience?

Anyone with arthritis or connective tissue disorder?

Re: Anyone with arthritis or connective tissue disorder?

Choose Another Board

Search Boards