leesie

[leesie]

Hi, I am from Australia and am 30 yrs old. I have just (in the last month) been diagnosed with RA after about a year of various aches and pains that just didn't get better. It started with chronic foot/toe/ankle pain for which i visited a podiatrist and then physiotherapist to no avail. Was diagnosed as having tendonitis and then told it was the way I walk that was using different muscles and making my feet sore. No physio really helped that much and i Just put up with it until fingers on both hands swelled and were very sore to bend. Have also suffered from neck/shoulder/back pain over the years which i think is all related. A visit to the doctor and blood tests revealed I was RA positive. I am seeing a rheumatologist next week to work out a treatment plan. Some days I can hardly walk and neck and shoulders, also hip pain, at night is so bad it wakes me up. Feel like an old lady at 30! I would love to hear from anyone else out there as to what works for you to give some relief.

[star73]

Hi Leesie! I am 36 and was just diagnosed with RA last year. I know what you are going through and I'm sorry to hear that you have been diagnosed. I'm glad you are goind to see a rheumatologist and hopefully you will get started on meds to help slow down the disease process of RA. Early diagnosis is key and I'm glad you have been diagnosed early. I know how you feel when you say you feel like and old lady...RA can certainly make you feel that way. The meds can help though....its just a matter of finding the right ones for you. Currently, I take methotrexate and Arava. I just started the Arava not long ago so I am hopeful it will help. Welcome to this board! :)

[kageyd]

Hi Leesie, Welcome, and here's a start. Sorry you're here!!! But glad you're seeking help. Diagnosis comes at all ages. Two of us here, me and Mac, are in our 60's. Many of the people who post here are, like you, vigorous younger people in their 30's trying to raise kids, and work at the same time.

First of all, READ. I find the about.com/rheumatoid arthritis web site a good starting point, but there are many, and each one adds a little more to your overall understanding. Johns Hopkins also has an RA website that is very comprehensive.

Some words of advice to get you started:

1. You are already seeking rheumatologists' help. Good. GP's are often excellent, but they are not likely to be up to date on a rapidly advancing field.

2. Don't be guilty. The causes of RA are unknown. That a subset of white blood cells goes wrong and attacks joint tissue are well understood, but why things go wrong is just not known. It is 99% certain that nothing you ever did in your life "caused" RA, not diet, not exercise, as far as we know not exposure to anything toxic, etc. Genes, yes, but you can’t help those. Causes may someday be found, but as of today, no one knows.

3. Most rheumatologists say that today RA in its early stages should be addressed aggressively with medications that halt progress of the disease. The starter drugs tend to be Plaquenil, Sulfasalazine, and Methotrexate, though some people do start with prednisone alone or with the others - but my reading suggests that the number of people who can regularly use steroids is somewhat low. Also, some people are judged advanced enough at diagnosis to be started on one of the biologics, like Enbrel for instance, and you might well be in that category. Increasingly the biologics are being used in combination with methotrexate or others.

4. Pain control alone is pretty much never enough, because things like NSAIDs don't affect the disease process, at least most doctors think they don't.

5. This is a complicated, poorly understood disease, and you need ACTIVE help, not just a once every 6 month consultation. Be sure you have a rheumatologist who talks honestly to you, and is amenable to questions and concerns.

6. Many people say, OK side effects, but i've got to HALT the disease, so I'll risk them, make sure I have the right checkups, and go with anything that will slow this down. The disease is potentially a lot worse than almost any of the side effects, but make sure you are being tested regularly.

7. With rare exception, RA does not go away. Medications help, but there is no known cure. Stay tuned, though, as there is a lot of ongoing research.

RA is a VERY difficult disease to treat, and with huge individual variations from awful to oh-just-so-so. I've led a grand life despite a host of illnesses, including this one, still travel a lot (retired now), and can only advocate that YOU take charge and don't ever let any doctor just dismiss you along the way; it's your life, not theirs. You'll also find some great positive-thinking people here, who will have tricks about how to make yourself more comfortable, etc. Reach out on your own and, as you're doing, ask others for their wisdom and experiences.

Keep in touch, and let us "be here" for you. Kageyd (pronounced cagey-dee, an old work nickname).

[leesie]

Hi and thanks Star73 and Kageyd for your advice. It is good to know there are other people out there going through the same thing. As to meds. one that was mentioned by my GP was methotrexate but he didn't want to prescribe it for me before I saw a rheumotologist. Star73 you mentioned you are taking this - do you have any side effects and if so what are they? I appreciated your advice, kageyd, that pain control is rarely enough as this is how I was trying to control it for a long time and started to wonder what was wrong with me when pain relief didn't work! One of my main concerns was my age and a lot of peoples' reaction that I am so young to be diagnosed with RA. Star73 - do you also find this? I have a host of questions for the rheumatologist next week, I will keep you posted!

[star73]

Hey again Leesie! I haven't had any side effects of the methotrexate other than a little lightheadedness when I first began it. Be sure to take your folic acid with it to help prevent side effects. Some people have nausea and hair thinning and some have a sluggish couple of days afterwards but everybody is different. Keep us posted on how you do!

Unfortunately, RA is commonly diagnosed in the 30s-40s. Of course it can be diagnosed at any age. My daughter's little friend who is 12 was diagnosed at the age of 3 with JRA. I think when people who are not familiar with RA hear you have rheumatoid arthritis they automatically think about osteoarthritis which of course is completely different. It doesnt help that most of the commercials for the RA meds have older people in them. There are so many RA blogs these days from people of all ages. It is a great thing that we have someone who is experiencing this :)