Re: I'm new and just wanted to say hello

[Guest guest]

Hi . First, it is perfectly alright to mention what drugs you are on. You are not trying to sell anything and if we know what you are taking we may make some suggestions about other things to talk to your doctor about. My story is different but with recongizable similarities. I was lucky enough to not get RA till I was 74 years old and then it hit hard enough that it was easy to diagnose. My rheumatologist started me off on Arava and after about 4 months with little success he added Methotrexate and I took myself off Arava (probably a mistake). After another 4 months with little success he added Remicade at 3 mg/kg and slowly increased it up to 6 mg/kg. After 6 months on this he was about ready to give up and try something else but finally I started getting relief. When I first got RA I was put on 40 mg Prednisone to permit me to get out of bed and hobble to the bathroom. After my first year with RA I was still on 15 or 20 mg Prednisone, but when the Remicade finally started working I was able to get completely off Prednisone in about two weeks.

We do a lot of talking about medicines and what works for us and what bad experiences we have had. We also recommend not medicating yourself but talking to your doctor before any changes in medications. Every case of RA seems to be different so what works for one may not work for another.

My guess is that you are not being treated aggressively enough. If you do have RA and it is not treated aggressively it may well lead to permanent, untreatable joint damage. It is important to treat it before the joints are damaged. If your doctor is not treating you aggressively, I suggest a second opinion.

Please post all of yoiur questions and it is likely that someone will be able to give you some answers. God bless.

----- Original Message -----

From: bneal_1580

Rheumatoid Arthritis

Sent: Sunday, January 02, 2005 4:36 PM

Subject: I'm new and just wanted to say hello

hi everyone,My name is . I'm 25 on Wednesday. I would like to share mystory, but it might be a bit long..bare with me:) Maybe you all cansee yourself in my story somewhere? I have Rheumatoid Arthritis aswell as maybe Fibromyalgia, Chronic Fatigue (which is think is more ofa problem with being in pain and not being able to sleep, then asyndrome) and other problems such as Acid Reflux disease and a hiatushernia. I was surprised when I found out that RA is typically found in20 and 30 yr olds. Anyway, I think I've had symptoms of RA since I was about 14, butsince I was so young they were ignored for quite a few years...and Ialso don't have the RA factor, so Dr's assumed I didn't have it. WhenI was in high school I would have such pain and weakness in my legsthat I had to crawl up stairs and could hardly stand at times. thesymptoms lessoned during college. I wasn't in stressful activitiesanymore like marching band and my pain would only be once or twice amonth. Then about two years ago I really started to feel the paineverywhere, not just in my legs and feet. I had occasionally had"tennis elbow" as its called, but until then never permanent stiffnessof the elbows, shoulders, hands, fingers, jaw and the list goes on. Italso became so hard for me to sleep. The pain my upper arm muscles wasunbearable and I didn't know where to place my swollen knees so Icould be comfortable. I also started to develop lumps on my hands andtrigger fingers as well. I finally went to see a surgeon about thelumps on my hands and he suggested surgery to remove the really biglump. I assumed it was a Ganglion cyst, but he said he couldn't besure until he got in there. So I had the surgery and he found it to besevere inflammation. Now I realize that some medication could havehelped more then surgery. I'll try to rap it up now...I'm seeing a Rheumatologist now who has meon some pretty common drugs..not sure if I'm allowed to mention thembecause of the notice on the home page. They seem to be working well,but I'll find out more this week on how they are affecting my immunesystem etc. I look forward to hearing from all of you and if you haveany questions for me I will gladly try to answer them. Thanks forlistening!

[Guest guest]

Hi and welcome.

Your story sounds a lot like mine in parts.

The school year problems, the TMJ, the trigger fingers, the swelling and trying to sleep problems.

I did actually have trigger finger surgery a few years ago on my left hand. I had remarkable relief from that. But at the time we hadn't yet discovered that the trigger fingers and the Carpal Tunnel problems were actually RA.

I wonder if the lump the doctor removed was a ganglion cyst or a rheumatoid nodule. Did he ever tell you?

Hugs, Jacy

~Be the change that you want to see in the world. - Gandhi

jacymail@...IM: jacygal - ICQ: 96949087www.geocities.com/mtn_rose

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----- Original Message -----

From: bneal_1580

Rheumatoid Arthritis

Sent: Sunday, January 02, 2005 17:36

Subject: I'm new and just wanted to say hello

hi everyone,My name is . I'm 25 on Wednesday. I would like to share mystory, but it might be a bit long..bare with me:) Maybe you all cansee yourself in my story somewhere? I have Rheumatoid Arthritis aswell as maybe Fibromyalgia, Chronic Fatigue (which is think is more ofa problem with being in pain and not being able to sleep, then asyndrome) and other problems such as Acid Reflux disease and a hiatushernia. I was surprised when I found out that RA is typically found in20 and 30 yr olds. Anyway, I think I've had symptoms of RA since I was about 14, butsince I was so young they were ignored for quite a few years...and Ialso don't have the RA factor, so Dr's assumed I didn't have it. WhenI was in high school I would have such pain and weakness in my legsthat I had to crawl up stairs and could hardly stand at times. thesymptoms lessoned during college. I wasn't in stressful activitiesanymore like marching band and my pain would only be once or twice amonth. Then about two years ago I really started to feel the paineverywhere, not just in my legs and feet. I had occasionally had"tennis elbow" as its called, but until then never permanent stiffnessof the elbows, shoulders, hands, fingers, jaw and the list goes on. Italso became so hard for me to sleep. The pain my upper arm muscles wasunbearable and I didn't know where to place my swollen knees so Icould be comfortable. I also started to develop lumps on my hands andtrigger fingers as well. I finally went to see a surgeon about thelumps on my hands and he suggested surgery to remove the really biglump. I assumed it was a Ganglion cyst, but he said he couldn't besure until he got in there. So I had the surgery and he found it to besevere inflammation. Now I realize that some medication could havehelped more then surgery. I'll try to rap it up now...I'm seeing a Rheumatologist now who has meon some pretty common drugs..not sure if I'm allowed to mention thembecause of the notice on the home page. They seem to be working well,but I'll find out more this week on how they are affecting my immunesystem etc. I look forward to hearing from all of you and if you haveany questions for me I will gladly try to answer them. Thanks forlistening!

[Guest guest]

Hi ,

Welcome. I am a newly diagnosed with RA too. I have just turned 34

years old and I also was surprised to hear how many young women have

the disease. I know I have had it for years and also had the trigger

fingers and was was thought to be ganglion cysts. Which a doctor

treated with Cortisone shots. They did help. I am currently on

Methotrexate and prednisone.

[Guest guest]

Hi ,

Welcome to the group. This is Steph in VA. I agree with Grandpa Van that you aren't treating your RA agressively enough. I'm 27 and I was diagnosed with arthritis when I was 22. I believe, and my current rheumy agrees, that the key to my current success is because I started Remicade 6 months after I was diagnosed. It has been my miracle drug. Besides Remicade I take Azulfidine EN, Prednisone, Folic Acid, Ibuprofen, Methotrexate, and Fosomax.

Take care,

Steph in VA

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[Guest guest]

Hi Im also new to the group. I was dx abut 3 years ago (RA). On Mexetrate, Remicade. I am doing better than I ever have been. Thank God for that. Glad to be apart of the group.

Ron

DeNicola <sdenicola@...> wrote:

Hi ,

Welcome to the group. This is Steph in VA. I agree with Grandpa Van that you aren't treating your RA agressively enough. I'm 27 and I was diagnosed with arthritis when I was 22. I believe, and my current rheumy agrees, that the key to my current success is because I started Remicade 6 months after I was diagnosed. It has been my miracle drug. Besides Remicade I take Azulfidine EN, Prednisone, Folic Acid, Ibuprofen, Methotrexate, and Fosomax.

Take care,

Steph in VA

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