As good as it gets? | Arthritis Information

 

Hey guys. I hope you are all having a great Saturday.

I have a quick question for you. When do you decide that this is as good
as it gets? I have been on Enbrel and Humira. I am currently on
Remicade. I am able to go to work(teacher) and take care of my 3 year
old. True--there are days when I need painkillers and I want to curl up in
bed but I am still able to push on. My PT has e-mailed my RD asking
about his "plan". Basically, she is not happy with the joint inflammation.
She feels that I should be looking towards Orencia. But what if that
doesn't work and I end up sliding backward? I told her that I feel that I
should be much worse off before wanting to switch meds. She argues
that RA is aggressive and you need to stay a step ahead. How do you
know when to make the decision. Maybe this is as good as it will get with
biologics-any biologic. I am scared to make a switch. I have also been
told by the nurses that it is extremely hard to go back to Remicade once
you go off it. Much higher risk of an allergic reaction.

I guess my point is this: I can still push on and do what I need to do.
Sure, I would love to not have to push but wouldn't we all? Should I stay
with what I know works--well, kinda works, or take a bigger step to yet
another biologic. I see the RD on Mon.

Sorry for rambling--I just get so frustrated by this and except for my two
cats and my son, there is nobody else to vent too. The cats would rather
wash themselves and my son is downstairs paying homage to Elmo.

Becky

I totally understand and know what you are going thru.  It is hard to say when it is as good as it gets because that is just so individual since we are all different and the RA affects us all differently. 

I guess I knew that how I am feeling now is going to be my normal by comparing it to when I flare up from the weather or comparing it to how I felt say....a few months back.  It is a different normal from before I got so sick...but I will take what I can get. 

As far as pushing on to a different RA drug...how do YOU fell you are doing on the Remicade?  Do YOU feel that it is working for you?  I guess I always think of changing drugs as a bridge to cross and once you cross that bridge it is very difficult to go back over it.  I am glad to see that your therapist is a good one and cares very much for your health.  However, she is a therapist and not a rheumatologist.  You might want to call your rheumy and say maybe my therapist is concerned about my inflammation and is pushing me to change drugs, but I feel ok with the current treatment I am on and see what your rheumy says to you.  I feel that it is the right thing you are doing by questioning this change in meds that your therapist has suggested. 

I guess one thing to also keep in mind is that we just aren't the same as before the ra developed and we have to get used to "new normals" sometimes on a constant basis.  This can be very difficult to do.  I know I have problems doing it at times. 

Hang in there and wait to see what your rheumy says before even thinking about making a change in meds that you just really don't seem very comfortable doing at this point. 

 

Rocckyd,

I so understand what you are talking about.  I have been through all the biologics (except Orencia).  I am now on Rituxan.

I have become allergic to them after being on them for a while, the most efficacious for me were Humira and Remicade.  Remicade was the best, but my reactions kept getting worse.  To me Rituxan has not been nearly as good at keeping the inflamation down or the damage at bay.

I feel so bad for you being so young with a small child and having to go through this.  I wish I could just give you a big hug.  You seem like one of the most caring and brave people on this board.  I was divorced when my sons were 1 and 3 so I know what it is like to raise a son(s) by yourself, then add RA on top of it and I feel like you deserve a badge of honor (all of you parents out there w/young children do).

I feel so thankful I did not have RA when my kids were little (well, my docs think I did, but if so it was mild, and I disagree on that point anyway).  I don't know if it is the drugs or RA, but I have begun to go off on tangents and forget what I am talking about, Sorry!

Anyway, I think Remicade was the best of all the biologics I have been on and frankly, I have never been back to that "normal" since.  It is hard to accept that we will never be completely pain free again, but there it is............  When my RD told me my RA was under control (this was a while back) I said, "Then why am I still in pain?"  He said,  "You will always have pain.  We have the disease under control, now we concentrate on making you as pain-free as possible."

I was shocked.  In the back of my mind if the meds worked, I would no longer be in pain.  I guess it was then that I started to accept my "new normal" as gramma so aptly described.  That "normal" does change and we have to go through the acceptance process again, but most of us just keep on keepin on.

Sorry to be so long winded Becky, this was all about trying to tell you that you are one of my heroes.  I am glad to get to know you, even if its only online.  Thanks for being the person you are.

xoxo

Gramma dang you're good!!!  Every time I find myself entering after your post, it leaves me speechless.

Becky...How long have you been on the remicade?  Did you and your RD talk about how long before you would probably feel the effects?  Could you tell us more about "the plan"?

It's sounds like you do have a very good PT who really does care about you and your health...that's wonderful.  However, I wonder if she truly understands RA and what a set back it can be if we start changing around our treatments without careful thinking.  There's always a chance of feeling better...but there's a chance of feeling worse too so we really can't make decisions lightly.  This darn illness is so frustrating because it does effect people in so many different ways.  I guess my advice to you would be forget what everyone around you thinks for a moment and truly think about yourself and how you feel.  How do you think your doing on your current medications?  Do you think you should be feeling better?  Are you doing okay or are you having to force yourself to get through every single moment of the day.  We're never going to be completely pain free....there are good days, bad days and then there are just "those days".  Unfortunately, although all of us can understand where you are coming from and wish we could answer your question....we really can't.  Only you can truly answer it. 

I can tell you that I am still experimenting with medications because I do not feel my RA is under control and I do believe there has to be a way to feel better.  That being said, it's not a quick process as I'm sure you already know....it takes a lot of time to see how a medication works for you.  Maybe this is as good as it gets for me but I'm not willing to accept that until all resources are exhausted.  I don't feel well on a daily basis...that is not acceptable to me.  You have to decide what is or isn't acceptable to you.

Yes RA is aggressive and it would be great to stay a step ahead.  Unfortunately no on truly knows when they take that step if it's a step forward or a step backwards.  Weigh you're good days, bad days, pros & cons etc....  Look within yourself, look at what your life is, look at what you want it to be and make sure that what you're wanting is realisitic and have a good coversation with your RD with questions and concerns.

Okay so gramma's post was just so awesome I can't even come close but hopefully you've found something helpful.

Peace & Love...Neasy

I am really into the emotional aspects of RA because sometimes we get so caught up in the medical part of this that I feel we can forget that we are very real people with very real feelings about this.   I feel strongly that treatment should not only cover the medical aspect of ra but the emotional aspect as well.  We are whole human beings....and that includes many and varied emotions. 

My heart goes out to anyone with small children and trying to manage this disease.  I did it when my kids were younger, but my RA was very mild and I responded well to nsaids.  I can't imagine doing it and having to be on infusions and be so dang exhausted all the time from the ra.  My kids are older now and were older when I took a real bad turn.  All I can really say is that I have seen some of the ladies here pretty bad off physically but they were still there emotionally for their children like nothing was wrong with them at all.  From talking with my girls about their experience when I was so sick they both said to me...mom...it didn't matter you could not get out of bed...you were still there to take care of us when we had a bad or didn't feel well and that is all that counts. 

It really does depend on the person. Look at me, I've had this crap all my life - so is my normal supposed to be less than anyone elses, because I'm "used to it" ? Or am I allowed to kick and scream and demand to get better like everyone else? Because a *HUGE* part of me says no, I'm supposed to suck it up better than anyone, because "I'm used to it" Which SUCKS! But that's how I feel......then again, another part of me screams that once, just once I'd like to feel everyone ELSE'S normal.

So, what was your original normal? Were you one of those people who could get up at 6am, hike a 10 mile trail, clean out the garage, cook a dinner for 10, clean it all up, and then drink until 11pm - get up and do it aaaallll over again - well, that's just not the kind of normal that someone with RA is probably going to get back to. It could happen....but so could a zombie breakout.

Being impatient - I believe - doesn't help the process. It's one thing for us to have high hopes, and to keep our goal in sight (having a normal life) but when this crap throws a curve ball, you can't wallow in it for too long, or you'll drown. It's okay to be upset, don't get me wrong. But taking it as an ultimate defeat is what I'm saying to stay away from.

And to each their own, that goes for chronic illnesses as well - I respond (hah...responded, really) well to simple NSAIDs - such is NOT the case for all of us, or we wouldn't have this board!

 

As far as the treating RA agressively goes - I have to admit, I'm torn on the idea. I really believe it depends on the person. While I have moderate RA, it's slllloooowww moderate. As in, I do get damage, I do show signs, I do swell, I do have terrible days but it just happens slower than typical. That made very little sense in writing.....anywho - I don't know if treating my RA head on with something like Humira is the right thing just yet.....Does that make sense? But then again, I'm not a doctor, what do I know.

I'm rambling....sorry!! I hope we've at least lifted your spirits!!

Sounds to me like you have a PT trying to play rheumatologist.  I wouldn't get too awfully excited about this until I spoke to the rheumy. 

Many a day I have wondered the same thing:  "Is this as good as it gets?"  Then I think of better days and think of worse days and try telling myself I'm working through a bad phase.  Of course, I don't have your pressures, no young ones, and I'm not working.  But push myself, yes, I have to push myself nearly every day (unless I have a medrol pak  LOL) but I don't think that's unusual with these diseases.

Have a good talk with your rheumy.  Tell him your concerns.  I'm having the thought that he'll be a little upset at a PT trying to tell you what meds you should and shouldn't be on - but that's just my guess.

J

I guess I do need to define a new normal. I have had this for a while. I
took naprosyn(sp?) through middle and high school for joint pain and was
diagnosed with RA when I was 19. I was very active initially---played
rugby, rode horses and showed, and did all the partying that came with
being in a sorority :). Obviously I have had to slow down quite a bit since
hitting my 20's and now early 30's. My RD and PT communicate pretty
often through e-mail so they have established their own relationshiop. I
see the PT for chest and rib inflammation for ultrasound. She is
frustrated cause whenever we try to take a break(a week for example)
they flare up. My lower ribs become extremely inflammed since I end up
using them for breathing an not the upper chest since that is also
inflammed. Obviously we can't do PT forever but something needs to
change.

I think that I will just stay on the Remicade. I am afraid to jump ship to
early. I have been on Remicade for 2 1/2 years. I am worried that I will
go through all the "big guns" and have nothing left to fall back on.

Thanks for your kind words. Yes, it can be hard to have a toddler and RA
but you guys are the ones I look up too.

Just incase you all forgot....I bought a house!!   Sorry, I am just sooo
excited! Gotta throw that in whenever I can :)

Hmm,

Seems many others have the same questions:

Patient Choice And Treatment Alternatives For Arthritis

Main Category: Arthritis News
Article Date: 29 Jun 2007 - 14:00 PDT
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