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...
Seen my rheumy yesterday for the second time. He said im gonna call it ra and get some treatment started. He diagnosed me considering my bloodwork and my long lasting symptoms. I havent felt right since sometime back in april. Glad to finally have something to go on even if its bad news. He perscribed me mtx 15mg once weekly oral. 10mg daily pred, and folic acid once daily. Does this sound like good meds to start with? He said the pred was to help give me some relief for a while until the mtx has had time to start working and will try to get me off the pred a little later if things seem to be going alright. On top of this joint pain i have came down with a bad head cold my son brought home from school. Think i might take a few days to get over this krud before i begin my regimen. Im freaked out about starting these strong meds especially the pred since ive heard so many horror stories and hard to get weened off of. I have only taken the pred short term in the past in like a week long taper but thats it. I got to thinking do any of you ever feel normal on a daily basis under treatment. Seems like even though most everyone here is being treated there are an awful lot of pain going on and not a whole lot of success to talk about. Or is it maybe the ones that are out there doing good with this disease are out living their life and dont feel they need alot of support where their condition is under control. Well anyway is there any new advice for me starting these meds or anything to expect from it? I have hardly any fatigue from the condition but i think these meds might change that for me. Worried about starting my medicine and beginning a whole new neverending cycle. I truly feel compassion for the people here cause i know what its like to be in pain in 3 or 4 or more spots at one time over months span. Ive really only dealt with this for a few months and some have been battling for years. I feel lucky compared to what i have read some of you are having to deal with. I am gonna have to wait and see about my finances and hoping i can get back to work. My job is pretty physical and there are alot of uncertainties standing around at the moment. Thank you all for listening. It does help.
I did not want to start on pred if at all possible, but did take Celebrex. I had read one of the side effects of pred was weight gain, and I had already added about 25 pounds from quitting smoking 4 years before.
My Dr is still trying to find the right mix for me. I have been on Humira, Enbrel, Orencia, Cimzia, Actemra and will be starting Rituxin in about 10 days. I do feel so much better than I have in the past, My feet are so much better, my hands are not. Blood tests show (Vectra test) show that there is still a lot of activity.
If you do start on the biologics, the drug companies are a great help.
The MTX will make you feel a little "off", but over time, your body will adjust. I am blessed with a cast iron stomach, and little makes me sick. The first few months I felt a little woozy two days after my dose, but I would start feeling better later in the week. I had fatigue, but I think that was associated with the RA itself. Little by little, my pain and swelling have improved and the side effects of the meds have lessened. In May, the doc added daily Plaquenil to my 17.5 mg dose of weekly MTX. The only difference I noticed with the Plaquenil was almost immediate improvement -- the pain in my foot went away, the weekly fatigue subsided, my gritty eyes got better, etc.
I feel I am doing quite well on my drug regime (200 mg Celebrex daily, as well as the above, plus a boatload of supplements :)). I was a very active person before all this came on last summer. After knee surgery to clean up cartilage and remove a cluster of ganglion cysts from within my kneecap, and starting the drugs, I am basically back to normal. I hike and bike on the weekends, I do yard work, I work a full-time job, I pursue fused glass, and I exercise almost daily (if I don't, it's likely due more to laziness than RA). Oddly enough, however, housework really makes my hands hurt ;).
The only issue I still have that is persistent is moderate pain in my right thumb and wrist, which at times radiates up my arm or out towards my fingers. Sometimes it's on the "high side" of moderate and sometimes on the "low side", but it's always there. If that is ALL I have to deal with, I feel I am quite fortunate (aside from the fact that I have RA to begin with -- what a luck of the draw there!).
I have concerns that the pain in my hand is continuing to cause erosion, and I know I'm not "out of the woods yet".I had been doing really well (aside from the wrist) for a couple of months, and then "overdid it" two weeks ago and was back to pain, fatigue, and gritty eyes for a week and a half. I have found that sleep is VERY important to me. My "overdoing it" is not that I rode my bike too hard or hiked too long, but that I stayed up too late and overbooked myself too many nights, and ate all the wrong things. I think that too much bread may affect me, and I know that *any* amount of alcohol will (so I've pretty much gone cold turkey on wine, whine whine ;)).
I have been berated both on-list and off-list because I have encouraged those who feel up to it to exercise and stay active. Perhaps others who feel like their treatment has been relatively successful have encountered the same response. I try to be sensitive to those who are struggling, but I also want people to understand -- especially those newly diagnosed -- that with the right treatment it is possible to get back to normal. Everyone will have their own path with this disease -- all you have to do is read the posts and know that what works for one person may not work for another.
Work with your doc to find the right drug combination, and try to keep positive. That's a lot easier said than done when you feel like crap. Even when you feel "normal", there's still this little voice that reminds you on a regular basis that you'll be living with a chronic disease for the rest of your life. That in itself is a difficult thing to deal with. Some people find help with this through meditation or counseling.
I hope your path is an easy one. Hang in there...
Jester B- Is it odd to feel woozy off the mtx a couple days later. You would think day 1 would be the toughest and slowly get better as the days pass towards next treatment.
I have just taken my first dose of 15mg mtx about two hours ago. Been so nervous about it all day long so much that i have gotten my bp raised up somewhat. Sitting here waiting on the side effects to kick my tail. Haha. Im ready to get treatment and get to feeling better. Started my folic acid a couple days ahead hoping this will help. Im really worried about my liver for some reason. Like what if its causing liver problems but im not supposed to see him back again for another 5 weeks for a follow up and more bloodwork. My question really is can you damage your liver bad within 5 weeks? Sorry about being such a worry wart.
I know it is trial and error in the beginning with finding the right medication. So I am waiting and trying to be patient. Hope u feel better.
I worried about my liver too. The tests are often enough to pick up any problems. My liver has been fine and that's with a nightly glass of chardonnay!
I think that many of us who are doing well don't post as often-you are right, I am continuing my life. But there's also kind of a survivor's guilt-I feel bad about doing well when I know that others are still in pain.
Hoping that your treatment works,
Patrice