I'm Only 33, And Just Diagnosed With Ra!

Question

Asked by Amanda

I'm Only 33, And Just Diagnosed With Ra!

I'm 33 and have just been diagnosed w/ RA. I have no idea what to do! This was going to be the year we started a family, but now I don't know if it's even possible. My doctor put me on azulphadine because I told him we wanted to have a baby, but my research is saying this drug is ineffective compared to metheltrexate. I'm not incapacitated yet, I can still work. What should I be taking right now? There's so much info out there, and so many horror stories, I don't know where to start. It's looking hopeless!

Answer

First of all, take a deep breath. You are lucky to have been diagnosed now - yes, I know that sounds like a perverse thing to say, but bear with me. In the past, having RA pretty much meant a prognosis of eventually having very damaged joints, limited mobility and chronic pain. However, the advances in treatments in the last 10 years has been so huge that doctors now don't actually know what the long-term prognosis is. The biologic drugs (Enbrel, Humira, Remicade, Orencia) are for many miracles in a syringe. As well, many people living with RA manage very well on medications that are lower on the treatment ladder, such as methotrexate, sulfazalazine, Plaquenil, etc. Yes, some people are still hit hard with aggressive RA that doesn't respond well to most medications, but it is far more frequent that people find a medication that works for them. It may take a bit of trial and error to find what works best for you and you can expect to possibly have to change again down the line (although I know people who have manage well on one particular medication for over 10 years), but there is every chance that you will be able to live a pretty normal life, including having children.

Whether sulfazalazine is the drug for you remains to be seen, but it's possible that it will be. It's also possible that you may need some additional medication - combination therapy of two or more drugs can work better than one drug on its own. However, if you are actively trying to conceive, it's important not to use methotrexate or Arava, as both cause very severe birth defects. Generally, doctors are very careful about the drugs they use in women who are trying to have a baby - e.g., prednisone is one drug that appears to be relatively safe during pregnancy. The good news is that most pregnant women experience a remission in their RA, but unfortunately, the disease tends to come back about 6-8 weeks after the birth. Depending on your current disease activity, you may have a couple of options. You can either continue to try to conceive or, if your RA is quite active, you can consider getting things under control and then trying to conceive. You may also want to talk to your OB/GYN about possibly looking into ways of helping you conceive faster - keep in mind that I'm not a doctor, but thought it might be worth thinking about. That's all very theoretical, so I thought I'd just put in this personal note: one of my sister's friends has RA and she has two beautiful girls, works full-time and is just fine. On medication, yes, but just fine.

There is no reason to expect that you will become incapacitated - like I mentioned above, with the drugs available these days, your future is looking very different than someone who was diagnosed 20 years ago. It's not hopeless. Being diagnosed with a chronic illness is hard and it takes a lot of adjusting, especially in the first year that's often spent adjusting to the illness and what it means, grieving the loss of your healthy self, finding a medication that works for you, etc. and if at all possible, I would recommend some counseling, particularly by somebody who specializes in cognitive therapy. It can be very helpful in terms of giving you coping mechanisms that you can use for the rest of your life. I would also recommend you pick up a book called The First Year with Rheumatoid Arthritis (that link will take you to a review of the book and an interview I did with its author). The book is 10 years old, but still a fantastic resource in terms of learning to live well with a chronic illness. I'd also recommend that you check out our area for people newly diagnosed with RA - there are a number of posts there that can help you in your quest to get back on track and make life easier for your (e.g., a post on working with RA, which has links to resources that can help you get accommodation on the job that can make work less physically taxing).

Other than that, I recommend informing yourself as much as possible about your disease - the more you know, the more in control you feel. Check out my post on being a good self advocate, which will help you in that subtle shift of leadership with your medical team. The thing about having a chronic illnesses that although your doctors are part of your medical team, you are the leader - it's your body and you make the decisions.

Hang in there. It gets easier. I'm glad you found the site - we have a wonderful and very supportive community here, so ask as many questions as you need and feel free to send me a private message if you need to.

Answered by Lene Andersen, MSW