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I'm thinking that maybe the 20 mg of prednisone I was put on 2 weeks ago, after my initial RA diagnosis, was either not strong enough or not in m y blood long enough to do significant changes on my joints. I was only on it for about 13 days and today i started the Medrol Dosepak. I feel so bloated and awake but still in pain so I have to take narcotic pain killers with it as well. I ran some blood work this morning to see if I have any signs of inflammation in the blood, they should be back by Monday and then I'll see my rheumy for continued screening. I read that some people who are in the initial stages of RA don't show inflammation in the blood at first. Some people have the ANA levels high and have no symptoms of RA. I don't know where I would be, or what stage I fall into, but I can visibly see and feel the inflammation on my joints. I don't understand why it's not showing up in the blood tests. I think this Medrol dosepak should start kicking in in a couple of days and hopefully offer me short-term relief from this horrible flare-up that has kept me practically bed-ridden for 3 weeks. The doc said if he sees it's RA he was going to start me on methotrexate and continue the prednisone... I have heard bad things about the Methotrexate and that some people continue to take it for years. I am still a little confused as to how long flares last, I had one in Feb, before I even knew what it was. that lasted about 2 weeks, then I had another 2 weeks were the joint pain ceased and then I started feeling sick with extreme fatigue... once that happened, the next day I lost both knees and have been on crutches and in bed since. This all seems so inconsistent and it's driving me crazy. I'm used to getting sick, taking meds, getting better and going on with my life, but this is real confusing and frustrating. Any comments and support are greatly appreciated.
Hi Becki, I just replied to your post in the other folder too. I also had normal blood tests at first - and later tested high for everything. I'm not sure how common that is, but obviously it does happen, even in the face of fairly severe symptoms.
There are a few other things to check out. Have you been tested for Lymes Disease? Lymes symptoms are startlingly similar to RA. Also, my pharmacist told me about a guy who had been diagnosed with RA and was even taking Humira for it until he found out that he had toxic levels of mercury! Some of those heavy metals can also mimic RA and they do not leave your body naturally over time. You have to do this thing called chelation to get the toxins out.
It's worth ruling those things out, in my opinion. Both woudl be curable, for one thing!
If you do have RA though, it would be nice to know as soon as possible, because the meds now are so good, they can prevent permanent damage if you get on them soon enough.
I remember the first time I read about methotrexate adn it did sond it did sound scary to me also. I think everyone feels that way at first. The thing is, we take a fairly low dose for RA - nothing lik ethe levels for cancer pts. And our doctors monitor us very closely, so they will take us off it if there are any problems, with yoru liverur liver for instance.
Another thing to keep in mind is what my RD told me: we don't know if any of these side effects will happen, but we DO know what untreated RA will do to you. To me, the option was pretty obvious.
Nowadays I feel like methotrexate is one e of the milder meds I take, so I don't really ever think about it as being worrisome. I'm more concerned about the progression of my disease and feeling as well as I can, preventing damage, etc. I'm extremely thankful for these meds. And I'd prefer to take the "risk" of side effects over the absolute known damage of untreated RA. It is terrible to be diagnosed with RA, but you need to know that these are exciting and hopeful times for us. I for instance have what is described as an unusually severe and rapid onset - I've had RA for 3 years now. I started on plaquinil and MTX and was quickly put on Enbrel as those two had no effect. Enbrel helped but then quit. Humira helped, then quit. Remicade did nothing. Just then Rituxan and Orencia came out of trials and my RD chose to put me on Rituxan. Now the bone erosions that I had on my hands and feet (visible after only 6 months from my first symptoms) have filled back in! And my CRP has gone from triple digits to .2. .2!!! Without these new meds I would be in a wheelchair now or worse. So yahoo for the meds and all the ongoing research. I have no doubt in my mind that a cure is in sight, so just hang onto yourself, be brave and do everything you can to get this disease in check!
I agree with SheRa with the drugs. I am currently on Humira and try methotrexate but made me very sick to my stomach. I will see what my doctor wants to do next week. My symptoms are very slow to progress but maybe that the Humira is helping it be slow. I have any Aunt in a wheelchair and lives on Morphine. Backs 25 years ago they did not have anything to stop the progression of the disease but like SheRa I agree that I will do anything to not end up like my aunt. It is very hard to even go see her because I feel like I can end up like that.
As to flares everyone is different. Hopefully when you get on meds you will feel a difference. I have never show any inflammation in my blood but I know it is there because like you I can feel it. I have not been tested in about a year for SED rate or ANA levels. I am also very new to all this but I feel better than when I was disgnosis.
Hang in there this disease if very confusing and frustrating but know that you are not alone.
When were you dx with RA and when did you start treatment?? I have just been dx and my rhem wants to start me on Plaquenil - he says that is the least toxic. I appreciate that but also want to be aggressive as possible as soon as possible to prevent further damage. How long before you started the biologics??