Rheumatoid Arthritis Community

Dear Anon_148740,

According to the Experts , "These blood tests are not definitive. Anywhere from 10% to 30% of people with RA can be RF-negative or anti-CCP-negative."

Hopefully you'll get a diagnosis and the answers you need when you see the rheumatologist.

Write back and let us know how you're doing,

Byroney

Thank you for your reply. I have another question. If this is RA, could the symptoms resolve to some degree without any treatment? Although I still have pain, stiffness, redness, swelling in both hands, bilateral wrist and knee pain, these symptoms have improved somewhat in the last couple of weeks. Is this normal.
Thanks for your time and response.

Hi, just found out Monday that I have RA. Started on Avara; had bloodwork, now & every 4 weeks. My symptoms have been getting worse since my initial posting: severe pain, swelling, stiffness, redness bilateral hands, wrists, elbows, shoulders, and knees. I'm scared. How much worse can it get?? What kind of side effects are there with Avara? What other joints can the RA affect. What to do? Any info/suggestions will be appreciated.

Hello and thanks for writing back with an update. Although I am not glad you have RA, I am glad you have a diagnosis.

This RA FAQ may help give you some answers. Also check out the RA Drug Guide for more info on medications. I also think RAtv is a good place to learn more about RA.

Hopefully some other members will pop in and share their experiences with you, too.

Byroney

Thanks for your reply. I have viewed the above sites, and they were helpful.
As the days go by, and I learn more about RA, I have a couple of questions: (1) Will the Arava cause side effects, other that the GI/diarehea (?spelling), etc, that I have been informed of? I have been on the Arava for 7 days now; for the last 1-2 days I have been experiencing some diarhea, nausea, dizziness,some mild shortness of breath, and "just not feeling well". Is this to be expected with this drug? Should I contact my rheumatologist regarding these symptoms, or just hang in there? I know that it will take anywhere from 4 - 8 weeks for me to experience any relief from this med. What do I do now? (2) Is there any connection between RA and rheumatic heart disease? If so, what is the relationship and symptoms of the heart disease?
Thanks so much for your time and energy. I look forward to your response.

Dear Isrs5356,

Any time you're concerned problems may be the result of your new medication, a call with your doctor or pharmacist is probably a good idea. They may tell you it's expected, and then you can ask for how long. Or they may say you need to be seen.

Rheumatic Fever is caused by Group A Strep. However, RA Can Effect Your Heart . This is also a good thing to talk over with your rheumatologist if you have concerns.

Thanks for writing back,

Byroney

Thanks so much for your reply.
The symptoms that I had described to you earlier have resolved. I am feeling better in regards to the "side-effects". However, I am experiencing the expected GI upset from the Arava - some mild diarrhea, nausea. These symptoms, I think, are to be expected from the Arava.
I have only been on the Arava for 10 days; no improvement yet. Again, however, from what I have read and been informed by my rheumatologist, I should not expect any signs of relief for 4 - 8 weeks after initiating my meds. I will make a list of questions for my rheumatologist to discuss at the time of my next appointment in April - sooner, if I have any "problems".
I will keep you informed.
Again, thank you.

The first blood test they did on me showed I was in the normal range so it said I didn't have arthritis. My sed. rate was normal but within a couple months my sed rate to 68 - 75. I am thinking, for some reason, that the pain comes before the sed. rate shows up. It really dosen't make sense to me. I am in the same type of pain you are in. So sorry to hear it,
I know exactly how you feel. Hope this has been a help to you. I'm glad you have a supportive husband, I am also blessed with that, don't know how I could of gone on without him.

Not sure what ETC means in your diagnosistic, but look into Lupus. Get the best doc in your city or closest city. Makes all the difference. Study the symptoms on the internet for a bit of an eduction and allows you to question your doctor with some intelligence.

My rheumy said that about 30% of blood tests came back negative when the patient actually did have RA. I didn't have my initial blood work for approximately 3-4 months after my symptoms began. I'm a nurse, but I never even thought about having RA when my symptoms first began. It was like I was fine, and then I woke up the next morning with all of my symptoms. It was crazy. I've been taking the Arava for approximately 4 weeks, with very little improvement. But, of course, I've had all of the side effects from the med - nausea, dizziness, shortness of breath, bruising, mouth sores. I hate it, but it is supposed to take up to 2 months for you to experience the full effects of the Arava. I have read horror stories on this site about the side effects from the other RA meds. I really feel for all that are taking various meds and having all of the side effects.
Glad you have great support. I'm like you - I couldn't make it with my wonderful husband. He does so much for me, it helps so much.
What meds are you on? Any side effects.
Thanks for your reply. Keep me updated.

ETC is not a symptom - it is the abreviation for ecetera.
I have a great doctor already who is within 20 miles of me - I'm really thankful for that. I don't think that I have Lupus - why did you think of that?? I'm curious as to what there was about me and my situation that would have made you think of that. I am always open to information and/or suggestions.
I'm a nurse so I know how to question my rheumy.
I have done tons of research since being diagnosed. Even though I'm a nurse, everything changes when you become the patient instead of the caregiver.
Do you have RA? If so, how long have you had it? What meds are you on? Any side effects?
Thanks so much for your reply. Keep me updated.

My friend just linked me to this site, so I'm new but read with interest your plight. Here's my story; I was diagnosed with RA back in 1993 as a result of having Lymes Dis. I was on many meds and then went into spontaneous remission until the end of 2007 when I was going through a divorce. My symptoms started in my rt knee and I couldn't sleep through the night, when I went to see my Rhematologist he put me on Prednisone and it gradually got better. I was on a bunch on NSAID's and was doing fine for a year or so, then started getting severe pain in my left wrist, then my right. My left wrist now has structural damage with the bone badly protruding and my rt wrist also has the bone protruding but not as bad. I also have various pain in my elbows, shoulders and various other joints. I've been on Methotrexate for about 8 months now.
What I want to say is where I am now. First of all let me add that my CCP levels were as high as 87. I'm also a nurse and did lots of research. Since RA is an autoimmune disease, I believe that there has to be some way that I can help my body heal itself. My dear friend hooked me up with a naturopath who is amazing. I've changed my diet, which was not easy. I've gone gleuten free, dairy free,and vegetarian. There are times when I will have a bit of cheese on something or some things may contain gleuten but on the whole I avoid these foods. Also most importantly stay away from the nightshade foods, those that cause inflammation. On my last visit to the rhem...my CCP was finally undetectable!! I was thrilled, I'm also on some homeopathic meds, this may not work for everyone, but I believe its certainly worth a try. I will be more than happy to answer any questions anybody has...

Very interesting.
I have only seen my rheumy once, and my CCP was drawn at that time. I do not know what it was - I will find out in about 4 weeks when I return to the doc. Am interested in what that might be.
I have not tried any changes in my diet. That is soooo hard to do. I congragulate you on being able to accomplish this. Sounds like, maybe, it is working for you. I will give this some consideration.
What kind of meds are you on - you mentioned homeopathic meds? What about any side effects from the meds?
I am always interested in any information or suggestions, so keep me updated.
Thanks

You need to start treatment for RA and stay on the treatment even if you are feeling better. RA is not like ordinary arthritis. You immune system is slowly destroying your joints. It will only get worse. The best way to stay well is to stay on your medication. You may need to try differeny medications until you find the one that gives you the most relief.