Since I was recently diagnosed with RA, and have yet to get in to see a RD, just had some questions for my own peace of mind. Sorry, I've been posting a lot on this board, but you all have been so helpful.
? My RF was 65, this does not seem high, is the higher the RF the worse you have it?
?I am on 7.5 mg of MTX and have taken it for last 6 weeks, but doesn't really seem to be doing anything. How long does it normally take?
? I am 42 years old, and am worried about working. I have read where a lot of people cannot work or at least do the job they had been doing. Is this the norm?
?I read about people flaring, it seems that I am in a constant pain, is this flaring?
?My mind seems to be playing tricks on me, telling me that I have no future, why continue with this pain if it won't get better. Does RA play with your mind, or is it just the newness of discovering that you have this disease?
Sorry, these might seem like dumb questions, but until my RD appointment on 31 July, this stuff keeps running through my mind.
Thanks
Phil
Being diagnosed with RA is scary, but it's not a death sentence. I was dx about 6 months ago, and I am finally starting to accept that it's true and it's not going away, so give yourself some time and permission to be scared.
Rh factor can be a predictor of disease, but not always. My factor is 312 and that seems scary to me, but I try not to focus on that too much. Some people with a much lower rh factor suffer a lot more than I do.
Give the mtx at least 3 months to kick in. My doc prescribed a prednisone taper while I was waiting for the mtx to work. That helped a lot. Some people will only use methotrexate while others will need more help. I'm also on Enbrel. Oh, and take your folic acid daily.
I too was worried about working, but I think a lot of it has to do with what your occupation is, what kind of shape you're in to begin with, what your attitude about work is, in combination with how severe your arthritis is. I have heard most people are able to continue working, but I know it's not easy when you're in a flare. I got really depressed after I was diagnosed and missed a lot of work because of the combination of feeling poorly and allowing myself to wallow in it a bit.
Your question about flares is one I've had too. I think if your arthritis is not yet in control, you're in a flare. My RD told me I've not been out of a flare since I've been diagnosed because my inflammatory markers are still very high, and I still experience a lot of pain. I also know that I may never be completely pain free, but there comes a point where you know you're through the worst of it and are on the healing side.
A diagnosis is very scary and some of the things you read are going to scare the hell out of you, but everybody reacts differently to RA and there are new treatments being found all of the time. Some of the "old timers" with RA have had years of bone damage that you're not going to have because of new medications and knowledge. If you have to have RA, this is a good time to have it because of the advances in treatment. Read everything you can about the disease, but don't let it get the best of you. I became fairly obsessed at the onset and it wasn't good for me at all.
TAKE CARE OF YOURSELF!!
Sorry you have to be here but things are not really that bad...you should begin to feel better soon...the first year is always the hardest. Mtx takes a good 3 -4 months to work and then you can determine if that is enough or if you need additional meds...your RF is pretty low, mine was 360 and Rheumy considered that low. Depression is very common with many medical conditions and RA is known to depress people...if you are really down ask your doc about an antidepressant for at least a while as that will also help the pain...when we are depressed the pain is always worse...with luck you will be feeling better in a couple of months and will know whether you can continue at your present job...most people can...good luck and hope this helps
ginger
Phil~you're are still very, very new to all of this. No doubt that's the cause of all your questions and fears. Being told you have a chronic illness that won't go away and will likely worsen over time is scary and often the things you read only scare you more. Give yourself a chance to adjust to the idea. It's a difficult adjustment.
That being said I'll also say that over time things change. AND; at the same time they change back and forth again and again. RA is a disease that has it's ups and downs. Chances are great that after a few more months your medication will begin to control things and you'll finally see light at the end of this tunnel. With proper use of medications that success can last for years without fail. THEN again; you can go through years of trial and error. Be prepaired for anything and don't be discouraged. (That's a hard one) You could likely end up liek myself and many others who are somewhere inbetween those two stages.
I know I'm not really helping...but accepting this disease is accepting a life of uncertainty. Over time you learn to adjust and you learn to accept the unpredictable nature of this dieases. It doesn't mean that years later you won't struggle....but you stop letting those thoughts consume you. It does take time though.
I work fulltime.....as do many, many others. I have no idea what sort of career you have but one that is less physical will certainly be easier for you to manage long term. I've found that those of us that are still working successfully have jobs that are not so taxing on our joints and physically do no more harm to us than sitting home watching TV all day. It's not always easy to get up and get to work every morning....but it gives us a reason to get out of bed every morning and also helps us not consentrate on our health problems all day long. I think it helps.
Right now just take things one day at a time Phil. If I had any advise for you starting out I'd say study up on the Powers of Positive Thinking as much as you study up on the disease itself. Mind control is within everyones reach and although it doesn't stop the pain and stress of life with RA.....it certainly helps with the way you deal with it and that alone will lead you to a successful life despite your physical state.
Good Luck...and if I haven't mentioned it before; We're glad you're here.
Wow Ginger,
Your RD said 360 was low? Mine said my 330 was high. What was the normal range for your lab?
Cheri
If you read the literature it seems that there is some controversy about whether the RA level is indicative of the severity of your RA. I mean some people have normal levels and still have RA, so it is just one of the criteria and I don't know if anyone wants to say for sure how much weight it holds. Mine was 434. So I would consider 65 low myself!
MTX took about 3-4 months to work for me so be patient. This IS a life-changing disease and it can be pretty scary at first, but I am living proof that there is a life (and a good one) after and RA diagnosis. It is hard to be patient early on, though, especially when you are in pain, I remember that well.
Jeanne
When you are really sick, it is normal to have thoughts of how terrible this might be. I had no support system when I got so ill and they had a hard time nailing down what was wrong with me. So, a little panic is in order. It's our natural fight or flight response.
Acknowledge that you feel this way. It is much harder on some people than others. No, you will not necessarily become disabled. I got my diagnosis at 43. I'm 49 now. I on the verge of becoming disabled. But my RA was very severe from the start and I am almost never outside of a flair. I also have multiple immune diseases and a very stressful life. All that adds into the mix of how well you will do.
There are many things you can do to help bring this back into some semblance of control and that's what you are really looking at. Knowledge and good support systems are essential. Knowing what kind of treatments your doctor should be providing you can help you work better with them for more through treatment.
Don't be afraid to mention when you are not doing well. Something new starts developing, your pain is not under control, get in to see the doctor. It doesn't matter than your next appointment isn't up 3-4 months.
It seems pain is one of your biggest problems right now. Call the doctor up and see what they can do. This is a very painful disease and believe me the nurses hear about pain all day, every day. Pain can mean that the doctor needs to add another medicine to your treatment. Because you are going to be in more pain when the RA is not being treated sufficiently. But unless you tell the doctor how bad a shape you are in, then how is he/she going to know that an adjustment needs to be made.
Problem is that we look pretty ok when we go into the doctor's office. So, it is up to us to say we are not doing ok.
Also, antidepressants have worked wonders for others dealing with this disease.
On the subject of severity of symptoms vs. labs, I can say that my serum negative RA has been resistant to MTX and has been generally difficult to manage. It is not what I consider to be severe, but by some standards it is. I feel like I am able to tolerate my RA fairly well especially given the lifestyle that I have ( mother of two young kids, full time ER nurse). I have suprised my doctor with my lab results but he has said many times that is just how my disease process it...I have sat him down and point blank asked him if he was sure I had RA. Maybe something else is wrong and that is why my labs were neg and the MTX didnt work. He went through my chart with me and we discussed why it wasnt a number of other things. And why it is RA. I feel like my proof was when I got some relief from the biologics.
Bottom line is, there is no rhyme or reason to it, we all are so much alike and yet so completey different when it comes to RA. There is no way to look at someones lab tests and say, this person should not have too much pain and swelling or that person should end up in a wheel chair. That just isnt the nature of this beast.
Hey, it keeps life interesting....right?