Rheumatoid Arthritis Support Group
Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...
Is it okay to post that having RA is really starting to hit me and making me quite depressed? I was diagnosed this past December and was put on 10 mg of prednisone which worked quite well to stop the pain and stiffness. After a short struggle with the fog of methotrexate and the inability to continue on any prednisone due to the mania it cause I was put on Enbrel a month ago. I realize I need to give it more time to work but I just went back to work after a one month medical leave and in 3 days since I returned to work I went from feeling okay to having more pain, in more joints, than I ever had before. Swollen achy feet, toes and ankles. Painful knees, hips, elbows, wrists, hands, and even eyes have really struck a chord with my psyche that I'm ill and may have a much tougher road ahead than I ever expected. I came home from work yesterday and went to bed at 4:30 in the afternoon! Got up for a quick bite to eat and returned to bed for the rest of the night. Today I came home and just wanted to curl up in a ball and cry.
I need to get better than I am right now. If I can barely make it through 3 days of work how am I going to do 8 more years to retire at 60? With a little luck the Enbrel will make things better. Or maybe the stress of my career (teaching) will just make my condition that much more difficult to manage. Right now I just want to be home which is not a permanent option.
This is not how I imagined it would be when I was diagnosed. That may be due to the fact that I've gotten worse since my diagnosis. I probably don't have the right to complain. Most of you have battled RA for longer than I have. Most of you may have it even worse than the pain I'm feeling. I can't even imagine what you are going through. I truly feel terrible for what you are going through. I guess I just wanted to post to see how others felt when they were new to RA and if the battle gets easier or harder?
I'm not sure if there is anything anyone can say to cheer me up or help me through this tough time but I wanted to post here anyway. I feel connected to others going through the same as I am.
Greg
I need to get better than I am right now. If I can barely make it through 3 days of work how am I going to do 8 more years to retire at 60? With a little luck the Enbrel will make things better. Or maybe the stress of my career (teaching) will just make my condition that much more difficult to manage. Right now I just want to be home which is not a permanent option.
This is not how I imagined it would be when I was diagnosed. That may be due to the fact that I've gotten worse since my diagnosis. I probably don't have the right to complain. Most of you have battled RA for longer than I have. Most of you may have it even worse than the pain I'm feeling. I can't even imagine what you are going through. I truly feel terrible for what you are going through. I guess I just wanted to post to see how others felt when they were new to RA and if the battle gets easier or harder?
I'm not sure if there is anything anyone can say to cheer me up or help me through this tough time but I wanted to post here anyway. I feel connected to others going through the same as I am.
Greg
Glad you're here and Welcome
You are sharing what we have all shared at one time or another. You will find this body of knowledge very helpful as you work your way to the new normal
Peace
Bluedogs2
Teaching is one of those jobs that's more physical than people realize. With a month off, you have probably lost some stamina. You also have to be alert every second, especially with middle-schoolers, which is exhausting too. Good you started in the middle of the week and only had three days, not five.
Any of us will tell you that we feel better when we don't do much. Sunday morning, drinking coffee and reading the NYTimes, yeah, I feel pretty darn good.
You may have gotten worse since diagnosis. Makes it hard to tell how much good the drugs are doing if the baseline is constantly changing. Is the Enbrel doing much for you? It takes about three months or so to tell if it's effective, but plenty of people have at least some results by a month in. Have you asked about an NSAID? A DMARD other than methotrexate?
I suppose your medical leave is all-or-nothing, no way to go back part time? I know workman's comp is like that, and it's idiotic. No way to ease back in. Are there things you can do during the day to help? Sit instead of stand, make kids run errands, etc.? Rearrange the classroom so you have less distance to cover to check on the little rugrats?
We are all so spoiled, used to the strep throat and broken arm type of medical problem, stuff that goes away with a course of antibiotics or a month in a cast. This ain't that: this one plays for keeps. At your next rheumatology appointment tell your doc exactly what you told us. He/she can't help if they don't know how you are really getting along.
You will get this figured out. There are other biologics, and dozens of combinations of drugs. Today is the first day of spring, so summer vacation can't be too far off.
I am new to this site, but have had RA for several years.
I also noticed that once I had been diagnosed, I started to feel pretty bad pretty quick. It took me some time to get my head wrapped around this disease, but the symptoms still wax and wane. Good days and bad. I have come to realize that this is just my life now.
So, with that said, it has gotten easier for me as the years roll on. I think that is just my acceptance of my life. Dealing with the doctors' visits, medications, infections, pain, etc - that has not gotten easier just more "normal" feeling for me.
Hang in there! There are days that I want to roll up in a ball and forget the world. But, I have more good days than bad, and for that I am truly thankful! It makes me feel much better just knowing there are others out there going through exactly what I am. So, keep posting and venting and accepting your new world.
PW
Regarding, Enbrel, I felt 100% better the day after my first injection. Does that say anything to you? I know people will tell you to "give it time," but honestly, if it isn't doing anything for you, you probably need to try something else. There are a lot of RA drugs out there, and some of them will "click" for your body, and others won't. I remember I tried Orencia for three months, and I swear I felt worse on it. It even gave me small nodules after the first injection. But, it may work for the next person.
I knew of one guy at work who also had RA and he swore by the Remicade infusions every couple of months. Best of luck on finding what works for you. Just don't suffer too long with any one "try." It isn't worth it. Only you can truly say what is working or not working for you.
I'm calling the rheumy on Monday. I have lost the majority of use of my thumbs so I'm going for an MRI in the afternoon. That also gives me a 3 day weekend and if I have to miss a day a week for the next 2 months then I will gladly call in sick.
I doubt they are stupid enough to harass a tenured teacher, who is a member of a strong union, who has a good performance record and who they now know has a disability. Then again I've worked for some real ignorant people in the past. Am I protected with a diagnosed disability or do I need more to protect my job in the event someone feels my illness is hindering my performance? As adult employees we are also entitled to 504 Accommodations (as stated in the ADA).
I loved to work and loved my job and did everything I possibly could to keep working. Truthfully I should have stopped 6 months before I did as it became a safety issue.
It's just like one of those things that include acceptance, denial, etc. There are stages I went through including being mad at the world for the longest time. There is no easy way through this but to try to take everything one day at a time. There is a lot of soul searching to be done along with making some very difficult decisions ahead.
I have to say for me, I was so relieved to know the reason for all the pain and the inability to walk. But when things were so bad before the diagnosis, I admit I was pretty depressed about my condition.
I'm on MTX, folic acid, and I'm weaning off prednisone ever so slowly. Right now I'm on 7 1/2 mg., down from 20. I'm sorry it didn't work for you, because it really does help me.
I agree with what the others said about trying different meds and combinations. I think most people on here take several things. It's hard waiting for things to get better, and I can't imagine having to do that while teaching. I'm a retired elementary teacher. The stress is unbelievable! I honestly think it was chronic stress that caused my health to fail. I also have fibromyalgia.
Anyway, I'm so sorry you find yourself in this state. We are here for you and understand. Believe me, I come on here a lot to vent and ask for advice, since being new. These people are wonderful and so very helpful and supportive.
Take care,
Elizabeth
As for Methotrxate I'm a little mad I just dumped it. Should I ask her to start me back on that to go along with the Enbrel or just start with one thing at a time which would be Prednisone?
I love teaching but I felt pain in my knees for the first time in months while I was on lunch duty Thursday. The behavior in the cafeteria declined in my absence and some kids were touching eachothers food and making a mess. Maybe next time I'll look the other way! I don't know if I can make it teaching until 60 but if I do one more year and do need disability I would at least qualify for 50 percent of my salary.
Greg
I think if you can find a balance of your meds you might be able to struggle through. A lot of folks here still work full time then there others who have had to stop all together. It takes everyone a long time to find the right combination of meds - and almost all of these are slow acting so each change can take months to fee the effect.
Ask your doc about what you experience this week and about the Prednisone and Methotrexate - hopefully they can get you on a dose like you are suggesting to help you out. And again, these things take time (except for the Prednisone) - I've been on Humira and Enbrel but kept having to stop due to insurance issues along the way. Each time I was on Humira I felt some positive effect after 2-3 months but not the full effect until 6+ months. Enbrel was a little faster feeling the full effect at month 3.
Give it time.
go to bed at 3:48 pm or whenever you hit the car in the school parking lot and stay there until the next morning when you start again until you get to the weekend and then sleep for the entire weekend - this being if your own kids are grown, you are empty nested, you have a fairy gardener, housekeeper and jack of all trades around, also :)
also some with RA use pred like the second coming so you might want to also to bridge with as much pred as the rheumatologist will give you until you get to a more tolerable place if the rheumie agrees.
your medication is going to be managed now ad infinitum so it is going to be nothing but trial and error as everyone has said, for now try new social adaptations at home nights and weekends
i know it does not sound like much but it is better than nothing
i did get much worse after diagnosis. my concern about this decline used to make the rheumatologist's office staff smile. they were not laughing at me. they just thought my own self earnestness was interesting. i could tell. they had seen this all with 20 years of patients. now I look back and man do i feel bad for that woman.
one of the things that was the most successful for me? I found an in person rheumatoid support group and folks in it were sicker than I was with the disease. and everyone had a bigger brighter attitude than I did. this helped me. these people made me smile despite the freakin' disease..
i hope the kids in your classroom make you smile this week despite the disease
you are not alone.
As a fellow teacher and RAer, I understand where you are coming from. I also have 3 young kiddos and a hubby that have always counted on me, as I was an "energizer bunny". It has been 2 1/2 years since my diagnosis, but I suffered long before that. It took Enbrel (my second biologic) +metho a good 6 months before I saw a 60% improvement. My administration does not know about my condition. Not for any other reason than I have not felt like disclosing. I still suffer the physical effects often, as well as the psychological. I really feel like a shell of the person I used to be, but I have learned to accept my new normal. It could always be worse, right? Enjoy Sunday and maybe relax and watch some basketball. That's my plan. Go Badgers!!
Juls