Hi RAngels. I am so happy to have found this incredible web site. I have been reading the posts for awhile now and am so impressed with everyone's stories and support for one another. As my title reads, I was finally diagnosed with RA on January 27th, 2009. Like many of you, I knew I had it. I had a flu-like illness a couple of years ago with some pain and swelling in my fingers. I had also been suffering from progressive morning stiffness. My doctor ordered labs and all the auto immune markers came back negative and he dismissed it. This past September I again felt a flu-like illness. This time much more severe. I had never experienced such sheer and utter fatigue. I told my husband I simply could not take another step and went to bed at 4pm in the afternoon. I did not get up until 9am the next day. My fingers began swelling and hurting, then my toes, then my wrists, ankles, knees, SI Joints, cervical spine. By mid-October I could hardly use my hands anymore as they were so stiff and painful. I saw my primary care Doctor and talked her into giving me a 6 week course of prednisone as I was in such agony. Again, immmune testing came back negative but I had a phenomenal positive response to the prednisone. Within a week I could move my fingers again and the pain was vastly improved. Finally, I got in to see a rheumatologist in November. My Rheumatoid Factor came back positive this time but barely. I went back on Jan. 27th for my second visit with the rheumy and he diagnosed it as seronegative RA even though my rheumatoid factor came back positive because he says that while it is positive he feels it is on the "cusp" as it is low. Rheumy put me on 500mg of Sulfasalazine one daily to be titrated up to three daily over a 2 week period. It was a relief to finally get the diagnosis but still devastating. The rheumy basically gave me the prescription, said this should calm it down and said good-bye. I left with a million questions about the prognosis, treatment, how am I going to cope with this illness. I left without being given any tools, hope or information. The doctor told me how burned out he was, he doesn't make enough money, his back is killing him, he dumped all of his life problems on me. I felt like I should be treating him and my illness/needs weren't met! The office staff is very cold, uncaring and downright nasty to patients. This web site and others have been filling in the cavernous gap left by my medical "care".
I finally got up the nerve to write my first post today. I am looking to connect with others, learn from you what helps, coping skills. I am a pharmacist who is currently a stay at home Mother to two sons ages 10 and 13. Luckily, my medical background has helped me tremendously and I have been researching RA daily. At this early point in my illness I am in a state of disbelief, grief, guilt and depression. I read HollyBGroovin's lovely letter to the Newly Diagnosed and cried. It felt like she had a hidden camera in my home. How did she know how much I struggle just to get out of bed! I constantly fight the battle of just wanting to curl up in a ball with the covers over my head and never get up. I have told no one this, not even my husband. I have always been a strong, hard working health care professional who cares for everyone else who is sick. I am 44 and look healthy, my pain doesn't show on the outside and others, including my family just don't get how much pain/fatigue/stiffness I suffer from. If I were a Christmas tree and my pain were the christmas lights I would be so brightly lit from head to toe it would be blinding. I am grieving the loss of my old self and just want my life back. I have been living in a surreal survival mode and wouldn't get out of bed if it weren't for gettting the kids off to school.
As the weather improves I'm going to do some ground work with him and see if he won't settle down. He's a pretty spirited TB and has had way too much time off.
You might not like me b.c basically I'm going to tell you how great you have it compaired to me. I've suffered with RA since childhood having my first flu-flare at 14yrs. Well that being said it's been pretty up and down and I've achieved most of my career goals however hard it's been . Now I'm in my 30's and unmarried I wonder... could I ever hold an infant for very long? could I run after a 2 yr old. Ect.. Yes I dated a guy for too many years we met when I was 19 and stayed together till I was 29 I thought he was the one. He would tolerate my flare-ups even feed me cause sometimes the pain was too much. But .. That ended... too many energetic healthy girls around and I won't tollerate cheating no matter why. Well... now my stuggle is dating.
It's about 30 dollars a bottle, but has about 500 sprays I think. I use it like lotion on my hands and wrists - 3-5 squirts in the palm of my hand then rub it all over my hands and wrists. It smells for a little while, but then it goes away. Lasts a long time! I use it wherever I have pain, but mine is narrowed mostly to my hands and wrists (sometimes feet) for now. Worth every penny! Lets me wear real heals to go out, etc.
Hi Jamie,
I'm so sorry to hear you have RA, but glad that you have found this site for support. I can certainly relate to your journey thus far, and I am sure that many others on this site do as well. The diagnosis and the physical and emotional changes that RA thrusts upon us can be pretty fearsome, but you have many tools with which to fight back. Information, support, networking, and inner grit will carry you a long way.
I have heard others say and I concur (thus far) that the first year with RA is the hardest. By the time one gets the RA diagnosis usually the RA is very active, and active RA is hard. So to the pain, stiffness and fatigue add not knowing what is happening, a brand new scarey diagnosis, and suddenly being unable to function and you have an almost overwhelming mix of challenges. But it is simply that, a big old huge challenge, and it can be met with courage, humor, and as many members of this site demonstrate, considerable style.
I'm glad that you have gotten started on meds and have a rheumy, albeit one who totally missed the boat in regards to meeting the needs of a newly diagnosed RA patient (yeach!). There is a lot of good info available on this site, and on others sites as well. I also like the web sites of Johns Hopkins, ACR, and one called Creaky Joints, which has some fun off beat humor for those times when you need a wry smile. If your experience is anything like mine, I felt terrible with all that active inflammation, but once the disease was under better control I began to feel a whole lot better.
Like you, I have seronegative RA and have worked in health care for many years (I am an RN). RA has changed my life a lot, but life is still good and I am adapting to the changes that RA has brought. I have had RA (diagnosed anyway) for almost two years now. When I was diagnosed I was started on prednisone and methotrexate, and now am on Enbrel as well. Like you, I have spent countless hours looking for answers and support. I firmly believe that knowlege is power, and in that old adage, "If we don't hang together we will surely hang separately." So I'm looking forward to hanging with you!
Take care,
Josephine
Josephine,
Thank you so much for your post reply. I am so glad I finally posted, I am getting such great information and feedback. For instance, I didn't know that the first year was the hardest. I keep thinking it's downhill from here.
I got a terrific sense of appreciation for just how much inflammation I have when I took the course of Prednisone. It's the gold standard for an anti-inflammatory but cannot be taken for long periods of time. I felt so much better, pain scores improved, stiffness improved, fatigue improved. The only drawback was the 14 pounds I gained on it. It has been a slow degradation back to pre-prednisone pain levels since then.
I will certainly look up those web sites you gave me too. Being well informed is the key to success in this illness. What is the ACR one?
How old were you when diagnosed? Anyone in your family that also has it? My maternal grandmother and her mother both had it. I helped care for them as a little girl and have bad memories of how much they suffered with it. They started in their mid-forties also. I know logically that we have much better therapies now but I still worry that I will end up like them.
Are you taking mtx with your Enbrel? Still taking prednisone too? How much better do you feel on the Enbrel? Does is help you with pain/stiffness and fatigue or does one symptom improve more than others?
Looking forward to learning more from you,
Jamie
Hi Jamie,
Let me see if I can answer all of your questions. ACR is the American College of Rheumatology. Their URL is www.rheumatology.org.
I was diagnosed at age 51, and I am now 53. Most people think that I am still in my forties except on bad days, and then I probably look my age and feel a whole lot older! Looking back, my rheumy thinks that I likely develped RA at age 35, but the bilateral knee pain and inflammation that I experienced back then was attributed to overuse and mal-alignment (I was an ardent cyclist) and the mild anemia and fatigue attributed to menstruation and busy lifestyle -I was working, going to grad school, and looking after our small farm on top of riding my bike 50 to 100 miles per week! None of my docs, and I saw several, ever mentioned the possbility of seronegative RA, and it did not occur to me because by hands were fine and despite being a nurse I didn't realize that seronegative RA can present as fatigue and bilateral knee pain!
My cousin had RA (sadly he passed away last year from an MI at age 64) and since I have been diagnosed one of my nieces has also been diagnosed with RA and her old sister with psoriasis. My mom had raynauld's syndrome and based on her symptoms I think she may have had soegrens as well, but the latter was never diagnosed by her small town MD. She passed away in 2002 from a stroke so I'll never really know.
I know what you mean about being frightened by watching earlier generations suffer with RA. It scares me too but I keep reminding myself that there is much better treatment available now and that good management will give us the opportunity for much better outcomes. But yes, once you've seen bad RA it does scare the bejeezus out of you when you are told that you have it too!
I was started out on a lot of prednisone. I posted my story on "First Year with RA and Unsure of the Future" if you'd like to read the gorey details. Once I got into see the rheumy we started methotrexate and began weaning prednisone. When the RA got worse we added Enbrel and a year later I am still weaning prednisone. I am down to 1 mg daily at present. I found the Enbrel extremely helpful. It helped with the fatigue first, then pain, and last of all the stiffness. My rheumy wants me to get off the prednisone entirely (so do I, so do I!) and then hopefully feel good and prevent further damage with the Enbrel Methotrexate combo.
Its hard for me to quantify how much relief I've gotten from the Enbrel. Do I feel better? Yes, tons! Am I back to where I was prediagnosis? No, not yet, but I haven't given up hope! I still have some pain, stiffness, and fatigue, but it is sooo much better than it was.
So I hope that gives you some hope. If you read my earlier post you'll get a good feel for where I was last year, and if you read through the comments you'll see how I did get better and better as my meds took hold and the inflammation came under control. Keep reading, seeking support, and find a good rheumy, and I think that you will get better too as your inflammation comes under better control and you and your doc learn how to manage your RA.
Take care!
Josephine
Hi Josephine,
How was your week last week? I think mine was better. I actually had two really good days in a row. Yippee! Perhaps my meds are kicking in.
Thank you for answering all my questions. I can see why you were difficult to diagnose at first. You sure were active and the biking can certainly cause some knee pain. Mine was definitely more the flu-like syndrome with mulitple joint involvement right away. I used to be an avid runner & skiier. Now I wince just thinking about doing those things.
It is nice to know in what order the symptoms responded to Enbrel. On my two good days I had more energy and I thought to myself, wow, this is what it feels like to have energy and not have everything be such a chore. I was beginning to think I was just getting lazy but clearly I get my old drive and interests back when I can get even a little bit of relief.
I started keeping a pain journal that I found on the American Pain Foundation web site and that has really helped. Right now I am trying to find my boundaries on what is too much and will make me suffer come night time if I do too much. I have discovered that I have about 5 good hours in the middle of the day. Have you ever come across an RA personal health journal? I've been looking for one.
I would like to go back on a low dose of prednisone until I respond to sulfasalazine. I get so much relief from it. However not happy about the weight gain. You still take 1 mg?
Have a great week!
jamie
When your Dr. decided you needed Enbrel, how bad had your health become? More joints affected, more severe pain & stiffness? My daily functionality is so poor at this point. I am lucky to bathe or brush my teeth.
Glad you have your horses. I have my first little dog and she is such a great companion. She lies right next to me when I am napping or laying on my heating pad.
Hi Jamie,
I've had a pretty good week, thanks. We had a big snowstorm (well, big by southern standards!) and very cold weather so that has been a challenge. The hardest part were two nights without power so that the only heat we had was from our fireplace. My joints really started to hurt but I was able to get through it and its warming up and the power came back on yesterday so life is good! I can't imagine living in Canada during the winter with RA. I guess you are more prepared for the cold than we are with better heating systems, insulation, warm clothes and all that. My husband doesn't even have his snow boots anymore. He gave them away when we moved to the south. I'm so glad that I kept mine!
There is an RA Activity Minder on http://www.hopkins-arthritis.org. I haven't used it so I can't recommend or not recommend it.
I was feeling pretty bad by the time we went to Enbrel. I wish we had started it sooner. I think that my primary care doctor had put me on so much prednisone that it masked the more obvious S/S of RA. But then it took me a long time to get the prednisone dosage down and it wasn't until I was on a lower dose that it became obvious that I indeed did have RA.
I'm still on 1 mg Prednisone. My rheumy said to wean very slowly at this point because my adrenal glands have been suppressed for a long time, so its slow going at this point. At the higher doses I was weaning 2.5 mgs at a time, usually over 2 - 3 weeks, but now its .25 mg over 3-4 weeks. The weaning process has been made even longer by periodic flares that required higher doses of Prednisone to control. For a long time it felt like one step forward, two steps back. Getting on the Enbrel really gave me some traction. I mark it has a real turning point for me, even though it took a good three months for it to really take full effect. Apparently some people respond much more quickly.
I know what you mean about prednisone. I hate the side effects but is uncontrolled inflammation any better? So we opted to control inflammation and protect my bones with calcium and fosamax. Fortunately I didn't gain very much weight, only about 5 pounds, but I know that my body composition has changed. On the higher doses I got really buzzed, and had a hard time concentrating and sleeping, so we had to add ambien as well. I started to feel like my pharmacist was my best friend! Seemed like I was always showing up with a new Rx and a bunch of questions. He was great though, very patient and looked up everything in his database. I really think that pharmacists are the unsung heroes of health care.
Keep working with your doc to manage that inflammation. Are you taking fish oil? Any progress on finding a new rheumy? Mine is a good guy, very bright and a good thinker, cheerful and optimistic although not a hold your hand sort of guy, and very accessable, so overall I've feel lucky to have him. The harest part was having to wait two months for my first appointment, because all of the rheumys around here have long waiting lists.
Have a good week, I hope you continue to feel better!
Josephine