How Satisfied Are You? | Arthritis Information

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How Satisfied are you with your treatment?

 
Is the pain bearable?
I'm sure I've probaly talked about this before.  When I flare, the pain is unbearable.  I had so many joints involved in the last one that I wanted to go to the ER.  The pain is so bad that I literally shake.  So, I stay home in my pj's popping pain pills and Relafen until the prednisone kicks in.
 
Right now, I'm pretty excited about my treatment.  I just started Enbrel in December and so far, the only flare I've had was when I had to stop the Enbrel and MTX when I got bronchitis.  The Enbrel kicked in really fast for me.  I couldn't believe it.
I am satisfied with my treatment, I couldnt ask for a better medical team , its just the side effects of meds that I am not so happy with.
I think you learn to live with pain as well as taking pain meds. Sometimes its bearable and other times not as good but i live in hope.
So far pain is bearable for the most part.
 
When it gets into my lower back I think is the worse.  Then next my shoulder and wrist.  But I find if I wear my braces on my wrist it really cuts down on the pain.  Or even an ace wrap helps.
 
Since all treatment has been pulled because of my liver and I have the worst pain and swelling I have ever had.  No!  I am also not satisfied, b/c I have not heard anything about being put into a biologic study with Orencia or Rituxan...remember it is not approved for PA.  So, with only MTX to hang on to when my liver turns the corner...I see a long and crappy wait ahead that could be as long as three more years.  I guess by then I will have damage and hopefully dissability, so other than the pain maybe I won't care!
Despite what you might think from my posts, my answer is "somewhat".  Although my pain is not bearable more days than it is, some of my medications have significantly helped certain symptoms, so it could be a lot worse. 
 
For example, one of my worst pains was shooting nerve pain down my right arm, particularly troublesome because I am right handed.  I also used to have much more numbness in my hands, for hours each day.  Both of those symptoms seem to be much better controlled with the Lyrica and Imuran.
 
However, my hand and foot pain does not seem to be controlled at all, and my pain meds make it bearable only some of the time.
 
I am quite satisfied with my doctor, however.  I believe he is doing the best he can, listening and responding to my complaints/questions/suggestions, and he is open to various possibilities. 
the pain from the disease itself is bearable and treatment has me stable but I have lots of damage and that pain is harder to deal with...surgery has been the only thing to really help with that

i am satisfied with my treatment i mean just like everybody else i have my bad days

an flares but i can pick up a gallon of milk and fix my kids cereal and dress myself again with
out help so as far as this disease goes it sucks big time but i feel very fortunate to have the
rhuemy's team working for me they are wonderul with out them i would be stuck in bed.
 
THANKS FOR THE QUESTION JOONIE
makes me feel better remembering it used to be worse and how fortunate i am
 
HOPE EVERYONE HAS A WONDERFUL DAY.  What about you Joonie?I'm not satisfied at all.
 
I live in the middle of nowhere and it's hours to the next RA doctor so i have to see this one, and she doesn't seem to care.
 
It's been almost 3yrs now and they still are playing with treatments.  I am allergic to dairy and some meds have too much in it that i get worse, so i have to get another.  Arava so far is the only one besides prednisone to work.
 
I live with pain and have always lived with pain since a child, so i go without pain killers where others would die without theirs.  Like right now, i horribly hurt in one knee when walking, my thumbs hurt horrible and i mean HORRIBLY, yet i am still typing etc.
 
I have a look on life that this won't get me down.  I just deal with it, deal with the pain and move on.
 
I have days where i break down and just cry.  And sadly, this is the BEST I have been since i had my big body break down almost 3yrs ago.
[QUOTE=kweenb]What about you Joonie?[/QUOTE]
 
Yes, I am satisfied with my treatment. I am on meds that seem to work unlike when I was going to my last RD.
 
Pain is bearable when Remicade is still in my system and upto a couple of weeks after it has stopped working. Anytime after that the pain is not so bearable and it really wears at me physically and mentally.
 
So... I guess my answer for the pain questioin is .... At times it is bearable.
Joonie, you are just full of great questions and ideas at the moment. Talking about all these things really helps us all, I believe.

Am I satisfied? Hmmm...

No, I ruddy well am not.

I am satisfied with my medical team. Absolutely. I have a fabulous family doctor and rheumy. They work together. They both listen to me, my ideas and often act on them. If not, we discuss why they don't think it's a good idea etc. I believe they are doing all they can within the realms of their medical expertise to get me better as fast as they can but I think they can only do so much.

After three years of playing around with medications and not yet finding one that stabilizes me...not I am not satisfied. What we are doing, is not working.

Yes, I am better than I was when dxed but I'd want to be...I couldn't pick up my toddler or hold a knife and fork. And yes, I am grateful for being better than then.

What I am unhappy with is the medication/flare rollercoaster. What I'm not happy about is after this time not yet being stabilized on something. I am a walking, rattling pharmacy and sometimes I wonder if it is doing anything at all here. I feel often lately, like yanking myself off most of my meds and seeing what happens.

And in reality I just don't think conventional medicine alone can 'cut it' with severe RA. I think you have to add whatever alternative measures you can...including exercise, diet, meditation, stress reduction, alternative medicines, massage etc.

At the moment, I am particularly unsatisfied. I will have another round of Rituxan soon and hopefully I get a more stabilizing response than last time. Meanwhile I am up to a place almost where I am thinking of asking my rheumy to put me back on the combo I was most stable on which was Plaquenil, Sulpha and MTX. No, things weren't perfect but I was functioning whereas the past eighteen months I have barely been functioning.

So yes, dissatisfied, particularly with the length of time it is taking to find a treatment the means I can function in my life but I do think that is just the nature of the disease and the medications.

Meanwhile, I am doing everything within my power to find and utilise anything else that may help heal this body of mine.
I am very happy with my treatment at this point, after decades of frustration.  I am having days where I take no pain meds, and that's huge.  No, I am not satisfied with my treatment. I have pain every day, but I have learned to cope with it. It is the relentless progression of the nerve problems that worry me. I am very happy with my doctors. I think they have worked hard to help me and have really listened, especially since I don't have a clear-cut diagnosis.For the most part, I am happy with my treatment. It's been a long road to find the right combo. **Knocking on wood** The enbrel works good. I hardly have stiffness in the morning and I have much more energy. I do have some pains that are controllable with pain meds and I also have bad weather flares that I wish would be more manageable. So far I am completely satisfied.  However, I keep waiting for a problem to develop.  I keep thinking, "How can I be so fortunate?" 
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