For some reason, I thought that when my meds finally kicked in, I'd be pretty much back to normal. But from what I've read, many of you continue to deal with pain and flares. Am I expecting too much or is it just a matter of finding exactly the right combo of pills? Is there anyone out there who is back to normal? I'd like to hear how much improvement you've all gained from your therapy.
Sorry to break it to you, but you will never really be the 100% you before RA.
Of course, with the right med combo and all, you can live almost as normal as you were before RA hit you, but never like you use to be. It has to do with the way your immune system is now, any damage RA may have caused before meds slowed down the progression, and how your meds stay affective.
I am happy to just be able to get out of bed by myself, and everything else I was not able to do over a year ago.
I wish I could answer those questions for you but there really is no black and white with RA as if affects everyone differently. Unless you go into remission you will always deal with a certain amount of pain, swelling, fatigue etc... I think it's important to realize that you will have a different normal than before RA and that things will probably never be as they once were. That doesn't mean that you can't have a happy productive life with controlled RA...it just means that you will probably have to make some changes in what you're used to. Good luck to you & take care.
Peace & Love...Neasy
I was just talking with my husband about this yesterday. I totally agree with what joonie and neasy had to say. The nature of RA and the damage it causes makes it virtually impossible to be like we were before the RA.
I have been in remission before but would still have minor little flare ups with the weather. I definitely wasn't like I was before the RA even with being in remission. I still had to adjust my life and my physical activities.
We all want it to be like it was before RA. And we all grieve that it never will be.
I have to agree with the above posts. Even with as well as I'm doing, and I think that I'm rather the exception around here, at least for now, right now my right shoulder is hurting quite a bit, took a vicodin a little while ago. When I sit for even just 20 minutes I feel like an old women when I get up to move again... I'm not the same as I was 6 months ago. I don't think I will be ever again. ANd it isn't like this isn't good enough, it is, it's just not as good.
Joonie, don't you ever have a good day where you feel well, can move pretty easily? I sure hope you get one soon if you don't already.
Before I had surgery (two weeks ago) and had to stop MXT I thought that the meds were helping about 60%. Boy, was I wrong. MXT was helping about 90%! I've been flaring because I've been off MXT for almost a month and it's been a spectacular flare. I now realize that my meds are working as well as I can ever expect. I don't ever expect to be completely pain free. To reach that point I'd have to increase both Remicade and MXT to the max and I don't want to do that. I need to have the increases kept in reserve for when I need them in the future. If I have some break through pain or a small flare I take pain medication. There's also pain from damage that the med treatments won't help.
I have an extensive amount of damage and complications due to the fact of not being able to find the right combo and a doctor who didn't start treatment with the correct combinations. I'll settle for 60-90% better. It's so much better than before. Lindy
Oh boy, be careful what you ask for, you might get it. I wanted to know and thank you for telling it to me straight, but right now I'm feeling very sad. After two months on the meds I had three days when I felt 100% back to normal and I was soooo happy. Then it was gone, just like that. I took two steps forward and 1 1/2 steps back and haven't had a pain or symptom-free day since. OK, no more tears, this is just new to me and I have to adjust. I'll hope for the best and be happy if the RD can just stop the progressive weakness that's slowly taking over from my left side and now to my right. That's the scariest part so if that can be controlled, I'll deal with the pain like a big girl.
Thank goodness for these boards. I know whatever is ahead will be so much easier to deal with because of all of you. You are inspiring.
And you will feel sad. And you will have days when you feel good and days when you feel bad.it is really all going to depend on how well you respond to the medication. If you can get through this initial phase without damage and respond well to the meds you do have the chance to live a pain free life. Keep in mind as you read peoples stories or answers to questions that many of us have had RA for many years before effective treatment was available and some of us just didn't respond well to meds. But there are many many people with RA out there doing well who have responded to the meds and have minimal damage.
The viewpoints you get from forums can be from an awfully narrow sllice of the population of people with RA. Boards tend to be dominated by newcomers with questions, oldtimers with long standing diesase, or people with hard to treat disease..as a result newcomers often only see the extremes of the disease. Thre is a vast middle ground that is out there that is not well represented.
No one can predict what course your disease will take. It is an emotional journey learning to deal with it no matter how severe it is. Do the things you can do to help minimize the effects of the disease. Eat a healthy diet and maintain a healthy weight, exercise-exercise-exercise ( I wish 25 years ago it was known how important it was to really exercise for strength not just doing range of motion stuff), educate yourself on RA and its treatments, build a partnership with your medical team and be agressive as you need to be with your treatment. Also plan financially for your future and learn the ins and outs of your medical insurance.
It is hard to read and not project what you read onto your own situation but these diseases are individual to the person and what affects me someone with RA for ver 20 years probably will never affect you
Good Luck
Now Buckeye -
In your list of board types you forgot the Cult!
Jesse, I think it depends on the type of med most of all. I'm 90 - 95% back depending on my diet. When I repair my gut lining I am hoping to be back at 100%. I'm on an approved ARC DMARD - Minocin. It is called the antibiotic Protocol - AP.
Pip
Hi, my experience with the meds and feeling 'good'. Is that you know they are working for you. As I get nearer to 'needing' the Remicade (which I questioned the value of last week!), tomorrow, I know I must carry on with Rem/mtx/some pred (maybe), and just be glad I'm getting help. It has been a long bout for me, and I wondered it it would ever end (stiffness, pain,swelling), but it seems to be getting better. You all suggested patience, but I wasn't very!. You were right I just needed to take the time.....
Today I feel the 'old fatigue' monster moving into my body. I hand a very trying time with my dear husband last night and today (stress!!) and now I know I need to get the Remicade tomorrow.
I think the best we can do is get on a maintenance 'diet' of drugs, be pain free(please!!??), reduce the joint damage and the swelling and the stiffness! 'It' probably won't ever go 'away'. for me but I feel like I'm back on the track to 'normal' ....Lynda
Hi Jesse,
Just adding my pair of pennies here. I know that there are many ways that RA affects the quality of our lives and that each person with RA may experience their disease a little differently. Different pain thresholds, etc.
The meds we're given for this disease are truly wonderful. Do they make EVERY pain disappear. Well, no. But do they make it possible to get up and get going MOST days. Yes, they do. I was off MTX for about 3 months 3 years ago and had a terrible flare. It was so bad that I promised not to complain so much about the everyday kind of pains.
I am due for Remicade in about 10 days..and I am beginning to experience the pain in my feet/toes/fingers that occur when the biologic has worked its way out of my system. Even with that, however, I still feel beter than I did prior to MTX and then the Remicade proved to work wonders for me. Does anything eliminate ALL the pain ALL the time? Probably not. But believe me..it's better than it used to be.
Best of luck to you, Jesse
Hey Lynda,
we posted simultaneously didn't we? And we both extolled the merits of Remicade. I had an infusion in April that did NOT work. In fact, all my joints hurt soon after and for a couple weeks after that. I was afraid that Remi wasn't ever going to do it again for me, but in June it worked like a charm. I've been on Remi for a full year now and can say that it has restored my energy (still run low-grade fevers when I come in for the infusion...but it abates afterwards.) and given me greater results than MTX alone.
I'm at probably 55-60% its hard to tell, because just as my heart was improving my RA really hit hard.
I would be happy to be at about 75% of where I was 6 years ago.. in summer of 2001 I was hiking all over australia WITH severe bronchitis. man was I sick.. in 2000 I was in better shape than I had been in years.
This is with remicade, mtx, ultram and vicodin, and enough heart and asthma meds to kill a horse
Buckeye is correct in a sense. There are varying degrees of RA. There are actually three types - I can't remember exactly what they are but I remember I am, of course, Type 3 so I fit into the 'hard to treat' with a dash of old timer, although I am new to the boards.Thank you all for your responses. I'm understanding more each day, thanks to your information, expertise and advice. Whatever did you RA long-timers do before there were message boards? Being able to ask questions and get answers has helped so much and taken some of the fear and sadness away. I'll be glad when I'm past the "newbie" stage and can intelligently answer others' questions and give them the information they need to deal with their DX. It's so good of you to take the time to give thorough answers. I'll bet some of you are wincing as you type because it hurts. Ya'll are the best.
Jesse, I floundered around looking at all of the medical sites, pharm sites, blogs, and talked to a lot of elderly people who had RA and boy did they scare me. Most of them were crippled, in mucho pain and pretty grumpy. They either refused to take the new meds or pain meds because they didn't know about the biol. and dmards or they didn't want to become addicted. Who cares if a 75 year old is addicted, if they can function on their own and tell a joke once in awhile? Very few of the individuals that I talked with had been referred to a RD, pretty sad. I was the facilitator for a chronic illness group so I had a large % of elderly in the group. Granted this was a small town but one of the finest group of RDs happens to be 60 miles away.
I found the boards and I was astounded by the information and the caring individuals. You have to sift through all the information and use what is right for your situation. Each of us have a story. We cover the whole gamut of socio-economic situations. But no matter how different we are from one another we have at least one immune disease in common and our stories will help someone else. Lindy