Hello
I have posted before but got no reply...maybe I did it wrong.
I have been diagnosed for over a year...was on a clinical trial but had to go off because of liver enzymes.
I have bever been on message boards before this disease and am not really a computer pro.
I hate this disease and hate what it is doing to me.
I am in my first month of enbrel....and I am afraid and depressed cause every day seems the same and the pain and stiffness is still very prominet in my life can anyone out there help me understand this whole thing and
what I can doHi, Kathi.
Don't feel upset when you don't get a reply. Sometimes a post just gets missed, but it doesn't mean people are not reading.
It can certainly be a difficult road to treating RA. I've been diagnosed for several years, and in that time have gone through periods when I felt pretty good and times when I felt really horrid. It's part of the "joy" of this condition.
Enbrel can take a while to work, so don't get discouraged yet. And even if it doesn't do the trick completely, it can often be paired with something else and really work well.
I understand the feeling of worry and depression. Sometimes it's worth it to see a therapist just to have someone to talk through those things with, as you may feel like they are too burdensome for family/friends.
I hope today is a better day!
make sure your rheumy knows what you are going through..perhaps a dose pack of prednisone might jump start you into feeling better. the first year is always the worst and until you get the meds tweaked you will still have problems. Antidepressents and/or counseling can sometimes help as it all turns into a viscious circle...pain/depression/more pain/more depression. Keep in touch with your rheumy and find out all you can about treatment options...good luck..you are doing the right things and coming here should help
ginger
Hi Kathy,
I empathize with you. I could have written your letter. Even though I was only diagnosed in June, it should have been years ago. I started my meds in June and have felt no different. It does take a long time. Please remember you're not alone. Most everyone here has felt as you do.
I don't like to burden my family with my aches and pains because they feel so badly for me so I come here where everyone knows what I'm going through.
Bless you.
But here are some basics. RA is an autoimmune disease which has gone into overdrive and starts attacking good cells instead of just bad. This results in inflammation. This inflammation, which usually occurs at the joints, causes destruction. The inflammation can also hit your other organs, heart, eyes and lungs. Any system in your body can be affected. That's why it is called a systemic disease.
The first thing that they try to do is get the inflammation under control. They will start with OTC meds like tylenol or ibuprofen if you're mild. But most people have to initially start with prednisone. They want to use this temporarily. They next add something like methotrexate or Arava. But this takes maybe three months to start working. They may add Plaquenil or other drugs. If pain is a problem, they will probably add something like Celebrex or Mobic. Sometimes they must go up the pain meds to Vicodine, Percocet, etc. If the Methotrexate isn't doing the job, then they will try one of the biologics (like Enbrel). For some people, Enbrel works right away, and for others it is not effective at all. And, then they need to try something different. It is really hard to find the right mix as we each need a customized solution.
Now, if you have been on the Enbrel for awhile (say 3 months or so) and you don't seem to have any improvement, then you need to get back into the doctor right away and ask questions. Also, you still might be in a lot of pain and the doctor needs to investigate that as well even if the meds are working. Sometimes damage is already starting to occur and they need to offer you other things like cortisone shots, physical therapy, etc.
So many people are on some kind of antidepressants in order to help cope with this illness. This is something that you can talk to your Rheumatologist about. Also, because of pain, a lot of people don't sleep well and have to have something added for that.
So don't be silent with your doctor. You have to speak up about how all this is affecting you. Because most of the time, we look ok, even to the doctor.
I agree with all the above. It takes a while for everyone to find their right mix of drugs, and even then, they may change these meds throughout their lives as the RA progresses. There rarely are easy answers. I've been on Enbrel for around a year. I did work well for me, but in more subtle ways. The morning stiffness didn't go away, but it became manageable. My bad days became less bad. Poin being, the RA didn't go away, it just got a little easier to deal with. Best wishes.
Hi there, I think you have gotten some good advice....and the Arthritis for Dummies is a great book to have for people who are just starting down this path. It is very easy to read, strait forward, and easy to look up certain things. Also visiting the message boards is helpful, you always are reminded that you are by no means alone in this.
One of first lessons that you learn with RA is how to WAIT. YOu wait for everything. A diagnosis, lab results, xray and MRI results, medication approval, meds to work, your appointment when your meds dont work, new meds to arrive....it goes on and on. And you get used to it. It never becomes easy, at least not most of the time. But you do learn to deal with it, and with people, and doctors, and that damn waiting game.
Keep your self informed, and dont be afraid to ask questions here, and of your doctor. The more you know, the better you can interpret the information that your doctor gives you, and that is the key to dealing with the waiting.
Good luck, there are a lot of people here to support you!!
But here are some basics. RA is an autoimmune disease which has gone into overdrive and starts attacking good cells instead of just bad. This results in inflammation. This inflammation, which usually occurs at the joints, causes destruction. The inflammation can also hit your other organs, heart, eyes and lungs. Any system in your body can be affected. That's why it is called a systemic disease. The first thing that they try to do is get the inflammation under control. They will start with OTC meds like tylenol or ibuprofen if you're mild. But most people have to initially start with prednisone. They want to use this temporarily. They next add something like methotrexate or Arava. But this takes maybe three months to start working. They may add Plaquenil or other drugs. If pain is a problem, they will probably add something like Celebrex or Mobic. Sometimes they must go up the pain meds to Vicodine, Percocet, etc. If the Methotrexate isn't doing the job, then they will try one of the biologics (like Enbrel). For some people, Enbrel works right away, and for others it is not effective at all. And, then they need to try something different. It is really hard to find the right mix as we each need a customized solution. Now, if you have been on the Enbrel for awhile (say 3 months or so) and you don't seem to have any improvement, then you need to get back into the doctor right away and ask questions. Also, you still might be in a lot of pain and the doctor needs to investigate that as well even if the meds are working. Sometimes damage is already starting to occur and they need to offer you other things like cortisone shots, physical therapy, etc. So many people are on some kind of antidepressants in order to help cope with this illness. This is something that you can talk to your Rheumatologist about. Also, because of pain, a lot of people don't sleep well and have to have something added for that. So don't be silent with your doctor. You have to speak up about how all this is affecting you. Because most of the time, we look ok, even to the doctor. Hi Kathy, I empathize with you. I could have written your letter. Even though I was only diagnosed in June, it should have been years ago. I started my meds in June and have felt no different. It does take a long time. Please remember you're not alone. Most everyone here has felt as you do. I don't like to burden my family with my aches and pains because they feel so badly for me so I come here where everyone knows what I'm going through. Bless you.[/QUOTE] Thank youmaybe you should ask for some narcotic pain relievers along with some prednisone.
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