August 24, 2008,
L.K. asks from San Luis Obispo, CA on August 08, 2008
Hi everyone....I have just been diagnosed with RA. Anyone out there been diagnosed? What can I expect?
1 mom found this helpful
D.D. answers from Los Angeles on August 09, 2008
Hi L. - I was diagnosed with RA in Nov 06. I'm a mom of a 6 yr old. So I truly understand what you are and will go through. First there are some wonderful resources that you should check out; Arthritis Foundation http://www.arthritis.org/; and a wonderful support website Daily Strength http://dailystrength.org. There are 2 books that are wonderful Good Living with Rheumatoid Arthritis, and The First Year: Rheumatoid Arthritis: An Essential Guide for the Newly Diagnosed by MEA McNeil.
A lot of people don't understand what Rheumaotoid Arthritis (RA) is. They often get it confused with the common form of Arthritis, OsteoArthritis, they don't realize that our's is an autoimmune disease. Be prepared for all kinds of stories and remedies. Do you have a good Rheumatologist? That's key. A Rheumatologist will get you started on medication, but don't expect it to cure it or be a miracle drug. There isn't just one medication for RA. What works for one patient, may not work for another. But something will work, so don't give up.
A supportive family and friends are also important. They need to understand what RA is and what to expect. The hardest part for me was asking for help, my family and friends have been so supportive. They also need to understand that plans may have to be changed last minute. With RA, doing everyday activities can be hard, so you will need to learn to pace yourself and prioritize. Another thing that has been hard is saying "No". I can't do everything now, so I have to determine what is realistic.
I know this may be more information than you wanted, but I hope it helps. You are welcome to email me directly if you have more questions. I truly know what you are going through, so please feel free to ask.
1 mom found this helpful
B.V. answers from Los Angeles on August 09, 2008
I've had RA since childhood. It can be a pain, but remember to listen to your body. I am fortunate to no longer take medications. I take panathanic acid when I feel flares coming. Just keep moving has been my theme. I found alot of natural health books where helpful. I have 4 adopted cildren and #5 is coming home soon. You just have to pace yourself and ask for help when you need it.
D.M. answers from Los Angeles on August 08, 2008
My mom has had RA for many years. In her case, she suffered alot of joint decline before they came out with many of the medications they now have on the market. Those drugs could be of enormous help to you and I hope you have access to them. These newer drugs prevent the severe deteroration of the joints common to the disease. Protecting your joints now will give you a much better future. Exercise is very improtant to help strengthen the joints and to keep them limber. My mother swimms daily and that helps her feel much better. Consult your doctor and the web for appropriate exercise, it's important not to do exercise that puts to much strain on your joints. It's hard not to over do when you have a 4 year old, but rest is very improtant. RA can prevent you from getting the rejuvinating deep sleep you need, fatigue can be a real problem. Journaling your feelings can help alot too. This is a diease that requires you to take good gentle care of yourself, mentally and physically. I wish you the best. I hope you have the support and understanding from your loved ones. There are support groups out there. Take care.
J.G. answers from Los Angeles on August 09, 2008
I am also a Mom of a 4 year old and got diagnosed almost a year ago.I was a ballet dancer and a yoga teacher so I am very active.I was devastated when I got diagnosed .I never took medacine and was kind of anti,even having a natural home birth and everything.So I gave every holistic aproach a good shot.Everything from homeopathy,ayurvedic,accupuncture,and macrobiotic healing diet.My outcome was letting my disease progress untill I could no longer walk or make a fist down to 100 pounds at 5.9!I started humira about 2 1/2 months ago.It is a miracle concidering the shape that I was in.I did however try methotrexate prior and had horrible side effects and I hope to have more children someday and that drug seemed so horrible.I still lead a very healthy lifestyle,as far as my diet is concerned no meat,dairy or nightshades.They also recommend no wheat,or gluten.I am strong and getting better each day.Thankfully there has been alot of advancements with meds for RA in the last 5 to 10 years .We should beable to live a healthy normal life.Hopefully they will find a cure.I know this all sounds so scary and overwhelming.If you would like to chat sometime let me know.Good luck!
S.P. answers from Los Angeles on August 10, 2008
I'm a nurse practitioner with a specialty in pediatric rheumatology. The advice to contact Arthritis Foundation for resources and information is right on. They are a wealth of information on RA. Also, remember that most of the joint damage happens at the beginning of the disease so it's important to be very aggressive with treatment at the beginning and then if you respond you can pull back. Since RA is a "chronic" illness you can expect to be on meds on and off as you flare and then get better. Methotrexate is a very safe medication that has been used for RA for years and the new TNF inhibitors like Enbrel are also amazing. I've seen a child who couldn't walk respond to Enbrel in a week and start playing basketball. Be aware too that RA will make you very fatigued when you are flaring and that you need to rest. Most of all, make sure to have a great rheumatologist. You can ask the Arthritis Foundation for a list of rheumatologists in your area. I wish you the best.
D.V. answers from Las Vegas on August 09, 2008
Oh my gosh, L. ! The only reason I am saying this is because I seriously know what can help you. My dad was told he had RA in the back of his thigh. He tried everything the doctors recommended, until last month. I had him start drinking MonaVie, main ingredient is the Acai Berry, known to Oprah and Rachel Ray as the #Superfood. I know we each react differently, but in one week, he told my mom,....." Hey, something is happening,....my leg not sore!" (That's how he talks, from Hawaii ;-) Please call me a.s.a.p. ###-###-#### !! I will be out running errands early 630am Saturday morning, feel free to call me !!! Hopefully you live on the east side of town, I can meet up with you and let you taste it and try it for a week, got nothing to lose !!
D.M. answers from Lawrence on August 09, 2008
Hi L., It's great that you love to Exercise cause that is the best thing that you can do for your RA. I was almost 13 when I was told that is what I had and I finally grew out of it in oct and I am now 25. I thank God everyday. I had a lot of problems with some of the meds. I was on but I finally found one that worked great. You take it once a day and it's called Mobic. Some of things to expect are, being tired a lot, swollen joints ( it kind of happends out of no where). If you want some more info you can contact the ARthritis Foundation. I got a lot of info from them here is the website if you are interested. http://www.arthritis.org/ God Bless you!
L.R. answers from Los Angeles on August 24, 2008
My name is L. as well. I too was just diagnosed back in June 08 with RA and as of last week with Fibro. I am still trying to figure it all out and get a grip on the emotional roller coaster I have been on ever since I found out. Just wanted to let you know that I am here if you ever want to talk or share experiences.
S.W. answers from Los Angeles on August 09, 2008
There are some amazing products out there to ease your pain.
Sorry to hear about you having RA already.
That can be extra hard with a youngster to chase around as well.
I represent a wellness company that has some affordable, amazing products that would make a world of difference for you and would be happy to help you get relief!
Have a great day!
J.M. answers from Los Angeles on August 11, 2008
My daddy had RA all his life. So I know first hand how it can effect your life. I understand your concerns, and since you asked what to expect,I really feel compeled to be honest with you.The worst thing about this decease,is the crippling affect it can have on your body.I know they're always coming up with new meds,to help control the severe pain you will experience in your joints,but as your aware, there is no cure for RA. You mentioned you love to exercise. Then you keep it up,For as long as you can. Laziness,will alow those joints to become brittle before they need be.Please get a good doctor,who specializes in RA. They have come a long way,in understanding your needs,and what may help you.My daddy,had it severe,and he developed what they refer to as (Hammer fingers) and toes.I want you to understand, that i'm not telling you this to scare you,but personaly I feel more scared,when I am left in the dark.Hammer fingers and toes, is when the joints become so brittle and swollen,they bend in two or three different directions.Even in daddys pain,He was able to keep the most fantastic sense of humor, he would offer directions to a passerby, pointing straight ahead. They didn't know which way to go!! Daddy's Dr offered to replace his crippled hands with artificial joints,but he dreaded the thought of (more pain)He remained on pain killers. His Dr wasn't real concerned about his becoming addicted. If they eased his pain,thats what he gave him.Daddy braved it through,and he passed away about 10 years ago,from heart failure I'm an adult now,as are my 6 other siblings,and only one has a slight sign of RA in her hands.Strangely enough, the specialists,have found a connection,between RA and thyroid desease. 5 of us kids have thyroid problems,and take meds every day to control it.Keep that in mind,when your children get a little older,and have their thyroids checked.I want to apologize,if I have offended you here in anyway.I simply felt, you wanted an honest answer as to what you can expect.I am very sympathetic to your feelings and concerns,and I pray,they will soon come up with a cure for RA. Until then,your (optomistic attitude)Taking care of yourself,your love for life,and family,and your trust,in God,will make you strong.I wish you only the best.. J.
A.C. answers from Los Angeles on August 09, 2008
Number one thing to do is to build up your immune system. Get a juicer. Start doing superfood everyday. Superfood is a dried combination of wheat grass, rye grass, seaweeds and can be found in any health food store. Cut out sugar. Nothing brings your immune system down faster than sugar. If you use aspartame-diet soda, fake sugar stop. There are many things you can take to help with the inflammation. Aloe vera juice which you can drink straight or mix with juice. I would HIGHLY recommend tumeric. You can get it in capsule form and it is non-toxic. The only cautionary thing I have heard is in
conjunction with blood thinners. Here's a link to an article from U of A.
Cod liver oil is also highly recommended and can be found in capsule form. Keep moving. Keep researching. Some people find magnets helpful. I use them for a variety of things. Nikken produces great products. Hang in there.
S.M. answers from San Diego on August 11, 2008
It is actually hard to predict how the disease is going to advance. Fortunately there are more disease modifying drugs available to help control it. You need to really communicate with your doctor and don't be afraid to call him if you are in pain. Sometimes a steroid injection can really help. I recommend you contact the Arthritis Association. They have lots of information available. Also books, a magazine(Arthritis Today), and information on support groups.
J.W. answers from Los Angeles on August 11, 2008
here are some things i have gathered from people for my sil who has ra. i also have a friend with ra who has been on xango and she swears by it as she has gone off all her meds!
1. drink LOTS of water. 1/2 your body weight in ounces AT LEAST every day. Can't drink too much.
2. Stop using regular salt. Start using Himalayan salt. It is much, much different than regular salt.
3. stop ALL artificial sweeteners and ALL msg (under any name).
4. stop processed foods. eat organic fresh or raw foods.
5. Ensure that you are not living near power lines. Make sure that you are not sleeping near power outlets. Check for Electro magnetic fields in your area.
6. Get rid of all suppressive people in your life. If they don't like you, then they shouldn't be around. It's kind of like cleaning out your closet. You might have liked it once, but now it makes you look and feel bad.... so toss it out!
7. Stop smoking and drinking alcohol.
8. Excerise. That is the only way the lymphatic system works.
9. Use Naturally Painless (www.realsolutionremedies.com) for pain relief instead of pills.
E.P. answers from Los Angeles on August 11, 2008
I have been living with RA for about 11 years at the time. I've gone from very low dose steroid use (5mg), methotrexate, embrel, to currently Remicade which is infusion. I am an active mother of 3 girls (17, 16, 10) the 2 youngest are stepchildren. I work full time we go camping dirtbike riding enjoy a very active life. You body will tell you your limitations. I don't take vitamins or not eat dairy or do anything different than I did when I was diagnosed. My disease has progressed very little I still get flares here and there I have limited motion in my right wrist, I feel tired sometimes. Everyone RA is different do what makes you feel good. Your child will keep you active, keep excercising but don't over extened yourself. Other than that take it one day at a time and don't get to scared about the worst case senarios. Take care and hope this helps.