How to make a decision up the med ladder.. | Arthritis Information

 

I've had RA for several years (4 I think). I have not been an ideal patient. I've gone on and off meds. I started with plaquenil, then methotrexate pills, then methotrexate injections. My rheumatologist told me that it's time to move up the med ladder - and this is where I get stuck. Too afraid to make "the wrong decision", I've made no decision. It's been too long without meds. I've been pretty sick for awhile and can't live like this anymore. I hurt all the time, feel sick constantly and am not functioning well. Most days are spent sleeping - though I get up right before my son gets home from school and husband gets home from work (and try to pretend like I've been productive). The truth is - I'm living in a state of hell. I have isolated myself as I don't like to commit to others that I'll be somewhere, as I hate having to cancel. I don't answer the phone much anymore b/c I don't have the energy to talk, I sleep or watch mindless television - which is so not the person I was. I panic when I consider the medication options. I fear compromising my immune system, developing lymphoma, etc. I don't know what to do, so I do nothing. Has anyone else felt this way? If so, how did you get through it? Thanks, JuliahI am sorry that you are going through such tough times right now.  No one can tell you what to do.  The only thing you can do is try to get as much information as you can and then try to make the best decision you can at the time.  There are no guarantees in life.  Maybe you have to decide how badly you want quality vs. quantity of life.  I think there are a lot of us that feel the way  you do right now.  Many of us have kids and spouses and can't just curl up and hide as much as we might like to.  I don't like any of the drugs that are always presented to me.  However, I need to live now.  My mother was on cortizone for eczema when I was growing up.  They didn't know how bad it was at the time.  Then when I was young she had lots of terrible accidents in which her skin would rip open from what would be just a little scratch.  She had lots of emergency room trips to get sewn up.  I never thought I would let doctors give me heavy drugs.  But now here I am and I have changed my mind and have decided that I want quality  versus quantity.  Without these drugs I can't move.  My dad died from a massive heart attack at the age of 61 and my mother had a major stroke at the age of 70 that left her 1/2 paralized.  If I think about the increase in heart disease with RA and stuff like that it becomes overwhelming.  So I try not to go there.  When my mother-in-law was battling with cancer (she was in her 80's) the doctor said you know, something else can get her first.  You just have to give it your best fight and try to make the most informed decisions you can and live with it.  I wish you the best.  I hope you try something so you can get on with living life!!!  My best to you....

[QUOTE=JuliahRA]I've had RA for several years (4 I think). I have not been an ideal patient. I've gone on and off meds. I started with plaquenil, then methotrexate pills, then methotrexate injections. [/quote]
Have you tried combination therapy? Many folks find great relief by combining two or more DMARDS such as MTX and plaquenil and/or SSZ (sulfasalazine] or pulsing a
tetracycline antibiotic along with MTX and/or plaquenil. Using the search function and check out some of the postings related to combination therapy.

Often people who are taking one of the biologics also take one or more DMARD.
[quote]My rheumatologist told me that it's time to move up the med ladder - and this is where I get stuck. Too afraid to make "the wrong decision", I've made no decision. It's been too long without meds. I've been pretty sick for awhile and can't live like this anymore. I hurt all the time, feel sick constantly and am not functioning well.[/quote]
Consider a second opinion. Sometimes hearing similar advice from someone else makes the necessity of making a decision more imperative, if not any easier.

As Kim said, many of us have been right there, however it is my considered opinion that the ravages of the disease are more frightening that the medications used to treat it. Uncontrolled or undercontrolled inflammation can cause damage that may not be discernable for years. Search for some of the articles posted by Lynn49 that detail the potential comorbidities associated with RA inflammation, as well as some of the posts about aggressive treatment with tight control of RA signs and symptoms, the goal is remission of the disease. Remission IS possible.

I know all about making the wrong decision about treatment, however when any one of us reaches the point where we say, "...can't live like this anymore" it is time to take a stance and decide to be, not the ideal patient (whatever that is!), but well-versed in options, proactive, and compliant re: medications.

Best of luck, Shug

Edited to correct formatting.
Spelunker2009-09-15 07:48:31obviously, you don't want to continue "existing" the way you are.  And you are merely existing, not functioning and certainly not living. Juliah- Oh I have been there, sometimes I am visiting that state but you have to remember, it is "quality of life". Many of us do not have quality of life anymore.

SO you have to make a decision. You have to have it come from your heart. Nobody wants to live the way you are now, more or less just functioning blindly and walking mechanically through your life. It is the pits, especially when you have known a better life.

I chose Enbrel. It worked for me but...and yes I say but, it left me with some other probs but that is ok for now. I still stuggle. I am alone in this and my daughter constantly asks me how I am. Well I have been sick with this cough and asthma all summer long cept when at my son's wedding, so I am thankful for that time.

Team up with your RD. Try the next rung on that ladder, you can always stop the medication. Take that next step. Do not worry about what others say, they do not live your life, they are not there when you close your eyes at night while you are wondering what you should do. THink about yourself, your health, your happiness with the help of your Dr. IF others do not like it, do not listen to them.

Life is incredibly short and incredibly miserable when you are not feeling well and when you do not have the positive support of others. The idea of life is to enjoy it, not endure it......( quoted from friend Leah").jodejjr2009-09-15 11:36:03Julia, itr may seem to you that you are putting off a decision but in reality, you're choosing to hope that while you put off taking the next step in your treatment you don't do so much permanent damage to yourself that you'll be a virtual cripple. You are miserable which tells me your RA is active. You need to be proactive. You are fooling yourself. To quote my favorite band "If you choose not to decide, you'll still have made a choice". I tell my kids that life is full of choices and consequences. Hard or easy all choices have consequences. You fear the Biologics and the possible side effects, shouldn't you also fear the price of inactivity??... BTW if you have a hard time trusting your Rheumy, could it be perhaps time to find a new one? Rush.......great band :) My daughter is doing her externship as a Physician's Assistant and they travel all over central and western Michigan.

One afternoon she came home and was a bit teary-eyed and said to me...."mom I want you to sit down for a minute"....( I am thinking oh thank goodness, she realizes that 14 month olds have more energy than a52 yr. old!!!!!!!!)

She looked me straight in the eyes and held my shoulders and said to me....I had a patient today who is bedridden with Rheumatoid Arthritis.

I told her that many people with this disease have become or are bedridden...and hey, BTW: sounds good to get some rest!

She didn't laugh. She told me that I am tremendously lucky to have had and have this disease and to be as active as I am, that it is a terrible, crippling disease for those who never recieved any treatment and that I should be thankful each and every day of my life even though I do have some slower days and some "bad bone" days.

It sure hit me hard when she told me that. I think it hit her hard as well.

WE here are fortunate because we have had the ""LUXURY"" of treatment plans. We have had medicine. We get to choose with our Rheumatologists what we try.SOme of the meds fail us, some help us, we have the option.

THe woman she spoke of has help come in to bathe her, feed her and turn her because she is so very crippled. SHe said the woman was beyond sad and depressed, nearly non-responsive from all her pain and suffering.

Just thought I would share...this was from the mouth of babes even though my daughter is 21, my daughter saw how bad all this RA could be, and can be if precaution and treatment is not sought after.

Just a reminder folks............just a reminder.jodejjr2009-09-15 20:08:20 I"ve had RA for 3 years and have found some comfort with enbrel. Before Enbrel, I was on mtx, pred., plaq, arrava, all the small drugs. then tried Humira and It didn't help. Then my hamstring snapped off my hip and that was the inflamation eating my tendons and joints. I then asked to try enbrel and that has been pretty good for 1.5 yrs. now and seems to be wearing off. But, the drug really made my life somewhat normal again, except for the bum leg,  the pain is less and the hands don't constantly hurt. I can actually get to sleep without going for the extra little dose of pred at bed time. All I can say is try it. It's better than the alternative.
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