Monday, March 01, 2010 tilly's mom asks

Q: What is "well managed" ra? Pain and fatigue every day?

What is "well managed"? I've had RA for 7 years and am on a lot of medication. The only thing that really helps is pred, and my Dr wants me off it. I was doing reasonably well at 5mg daily. I tapered off, started a new biologic, and flared like crazy, and had to go back on a higher dose. I understand why the pred isn't good -- side effects -- but I feel so horrible without it, I can barely function. I am on a new biologic for the past two months, but the results are the same as the last one. My Dr said to try it for six months and taper off the pred. I can't get off the pred as I am still in a lot of pain with a great amount of fatigue. That never went away.  What should I do?

 

I am so, so tired of this disease. I am rf neg, and have not had much swelling -- just wicked stiffness and pain throughout my entire body. I walk every day, do not eat processed food or much meat, and an working at losing the extra 20 lbs that has hit since getting this disease.  My bloodwork has been fine throughout the past 6 months when it is assumed by my Dr that the Remicade stopped working.

 

Thanks for any suggestions. I am really at my wits end in dealing with this -- I work full time and am a single person living alone. just keeping up with housework is tough, let alone do anything enjoyable.  Not working isn't an option, and getting help w/ housework is (financially) not an option for me at this time.    

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Lene Andersen, Health Guide
3/22/10 11:42am

I'm so sorry you're having such a rough time of it - this disease can really mess with your life and sense of humor.

 

I'm assuming that there is a clinical definition of well-managed RA, but your doctor is a better person to ask about that. To me - and I'm saying this based on my own experience in living with the disease, as well as working here on MyRACentral - would be RA that is sufficiently suppressed by DMARDs (disease modifying antirheumatic drugs like methotrexate, Plaquenil and the Biologics) to block inflammation and reduce pain and that you, possibly with the help of various painkillers to address joint damage related pain, are able to live your life in a satisfactory way. In other words, that your disease is put on the back burner and your life is on the front burner. When you have a chronic disease, even well-managed RA, you can expect to need to work within your limits, and perhaps not do as much as you used to before you got the disease - for more on this, see my post on the Spoon Theory - however, it is possible to get to a point where your disease and your pain levels are controlled enough that you can get back to what's important: living your life.

 

Prednisone is a funny drug - it kicks butt on the disease, but isn't really good for you. On the other hand, most of the DMARDs have various possible side effects that aren't good for you, either, but in deciding to take any specific drug, we do a cost-benefit analysis to determine whether the risk of the side effects is worth it. From what I can see by reading reports from users on the site, use of prednisone and other steroids depend on the doctor - some doctors won't prescribe it for anything other than a sort of rescue medication, whereas otherse are on prednisone permanently, usually a small dose intended to supplement their primary DMARDs. Personally, I find that steroids tend to give my other medications a bit of a boost.

 

Given how difficult it is for you to get your disease under control, you may want to consider a second opinion. It sounds as if although you're unhappy with your disease and the difficulty you're experiencing and getting it under control, you're fairly happy with your doctor, but even then, getting another pair of eyes who have a different experience may give you options that you don't have now. In the long run, you may decide to stay with your present doctor, but exploring your options can't hurt.  as well, I would recommend you have an in-depth and very honest discussion with your doctor about your concerns regarding removing prednisone - the drug has been proven to help mitigate joint damage and if your othere DMARD isn't doing that, then perhaps it's worth having a discussion about the pros and cons of staying on it (See my post on self advocacy for pointers on how to have this discussion).

 

Good luck!   Please let us know how things go?

 

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By tilly's mom— Last Modified: 12/24/10, First Published: 03/01/10