48 years old, diagnosed with psoriatic arthritis 3 years ago. I had Grave's disease, another autoimmune disease, in my early 20's. Back then my endocrinologist would always remark he couldn't figure out why my ESR (aka sed rate) was always so high, usually over 75. I have had various bouts of some kind of "flare" with my shoulders, hips, and elbows all my adult life. They would ache to no end and then the pain would gradually disappear after several months.

I want to thank those who replied to my venting. I don't really see my friends anymore, and I upset my family when I talk about the disease or treatments. That is part of what is making this whole ordeal worse, but I understand where they are coming from. Anyway, I AM very spiritual. I have been through some huge problems before this flare-up, and it is my faith that has helped me survive. I just KNOW that I will get through this and I will kick butt, but it is hard to be alone, and I need someone to listen sometimes to say "I understand," but then stop there. No telling me what to do or crying and getting emotional. That tends to have a bad effect on me. I feel others too much. So that day I made my first post was an "emotional" day. Thanks again for reading it and responding.

Hello All

Just been diagnosed with sjogrens disease which according to my ENT physician, is 99% chance that I have RA.  I am grateful that he has finally diagnosed me.  I have been having symptoms for over 8 years.  Unfortunately, this will be my third rheumatologist and can't get an appointment until June 26.  I have been reading your messages and would like to be empowered on getting the care.  Will someone educate me about the dos and don'ts about receiving the best care.  I don't want to spend more years trying to get the right treatment.

I will be 26 in a couple of weeks. I was diagnosed with polyarticular juvenile rheumatoid arthritis when I was five years old. We believe the onset happened when I was about six months. I did not walk until I was three. When I turned 18, I decided the meds (methotrexate and Enbrel) were poisons that were not helping, and I was actually doing okay, so I quit all meds cold turkey. Well, a year and a half ago, I found my fiance dead from a tractor accident. Because of the trauma and stress, my arthritis has flared up worse than I can remember it ever doing before. My feet have been deformed my whole life, but now my hands are just as bad. There is not a single joint in my body that is not affected. My rheumatologist says there is too much permanent damage. I am on 2400 mg of advil a day plus prednisone (serious stomach problems!) and Humira. I am not getting better, and I am worried about my future. I will not be in a relationship with anyone, so I am stuck by myself to take care of myself. I had to cut all of my hair off because I could not wash or brush it. I wear sweats because I can't hardly dress myself. I am really embarassed because it looks to the outside world like I am letting myself go. I am now going back to school, and I am an A student, but the pain is so bad, it is making me stupid and depressed. If it gets worse, I do not know if I can handle it. I know in my gut I will be fine because I am tougher than I even know I am, but this disease is a nightmare. Why don't the medications work? Like my mom said, they certainly would not put me in a Humira commercial. Another concern is lymphoma. My grandmother has RA. She also has lymphoma. Now with all of these meds "linked" to lymphoma, my family won't leave me alone. I believe the actual link is long-term RA, which is just as bad for me. 25 years under my belt already.

I was diagnosed with RA and Lupus in January 2009. I was initially given 4 pills of Methotrexate and 20 mg of Prednisone. This worked for about a week. Next I was given 6 pills of Methotrexate and 20 mg Prednisone and that did not work. Next I was given 8 pills of Methotrexate and IV therapy with four vials Remicaid. That worked so well for almost two weeks. I was pain free. A few days prior to going for my next infusion, the pain retured. To be clear, the pain is not as bad as it was in January but disabling all the same. I told the doctor on my next visit. All he could say is my blood work is showing that the RA is going into remission. (I am thinking of switching doctors since I just feel he is not listening to me). Anyway, the day I went to see him my sypmtoms were not to bad and he told me to come in when the symptoms returned. Well they did and on the day of infusion, I showed the nurse and asked her to document my temp, redness and swollen joints. She faxed it to the doctor and he now ordered 5 vials of remicaid. Well, no relief. So my question is: Do you think I am expecting to much with regarding to being pain free? I just don't know what to expect.

This is in response to the lady who is living in the UK. I was reading your story about your Arthritis and how sick your mom is. I hope by the time you read this she will be doing better.  As for you, try to stay positive. RA is a horrible illness and most of the public are not aware of the affects it does to the person's body. All I know is that I had a horrible 2008 and this is 2009 and I am hoping that the new meds I am taking will put me into remission.

It's amazing but you would never think by looking at me in pictures or in person that I am horribly ill with this disease and it caused me in the last 18 months to also develop other conditions as COPD, Gerds, Sjogrens Syndrome, psorasis, and three operations along with Ankylosing spondylitis which is a form of arthritis that primarily affects the spine, although other joints can become involved. It all started with buring feet in 2004 and I went undiagnosed for 3 years suffering from peripheral neuropathy and now I have irreversible nerve damage to both my feet endings. I take Lyrica and Zoloft during the day and at night before bed. I was on Enbrel, Orencia and now I just had my first infusion of Rituxan and just two days with this medicine I woke up yesterday morning and I did not have one bit of pain in my knees, today is my second day that I am pain free. I am keeping a diary of how I am adjusting to this new med and how it's going to affect my body.

In general I am a very positive person 68 years young. Here I thought that I would continue to work a few more years and then stop and enjoy the rest of my short life, but I was given this present when I was 64 years old and was stricken with this illness which went unattended and when it was found that I was suffering from severe RA it was much more difficult for my RA doctor to get me this far because I was in severe stages of RA. But I know that with all the new research that is being done and with me being active as an advocate for the Arthritis Organization I know that I will be able to make an impact for others to get the necessary medical care that they need so desperately. Especially the children and very young adults. Always think positive, I know it's easier said than done. But I am happy just to be here alive and I am not doing that bad.

Good luck.

 

Hi all. I have recently been diagnosed with RA and started on methotrexate about 4 weeks. As yet I can't tell if it is helping much -- I'm pretty much as bad as when I started.

My mum was recently diagnosed with amyotrophic lateral sclerosis, a fatal neurodegenerative disorder. It was shortly after hearing this news that I literally lost the ability to walk -- the pain in my knees was so intense, I couldn't even stretch my lag out. My hands and left wrist are very sore, but thankfully the pain has subsided from my feet. Elbows and shoulders are stiff and I find it difficult to take off my clothes.

What with everything going on with my family, and my mum's condition being so serious, I've beeen finding it hard to get any kind of support. I hate to complain, but sometimes I get so angry and frustrated that I can't help and be more ctive in helping mum. My brother even went so far as to call me "lazy" when there was a few days my pains were so severe I couldn't get out of bed. I've also got stuck in the bath a couple of times as my knees were so sore. It's embarrassing and humiliating. I don't have anyone to talk to about this. On days when my pains aren't so bad, I try to put a brave face on and help around the house -- then when I sit down for a bit, my knees seize up, and my shoulders ache. No one can understand how I can have been OK just an hour earlier and therefore they think I'm "acting out" my smyptoms.

 

I also have had to stop horse riding, somethign that I really loved doing, because the next day I'd be laid up in bed unable to move.

 

I'm also scared because I'm so young -- not married nor do I have a boyfriend. I've heard methotrexate can make you infertile. I also read some stories about Kathleen Turner and how she felt the medications she has to take for her RA have contributed to her losing her looks.

 

Sorry for the long message.

 

Sad and depressed in the UK

 

 

I have been having cold feet and hands.  They also feel numb.  Is this normal if you have RA?

Thanks,

Stacey