Methotrexate didn't work for me. I had to move on to a biologic. I've tried Humira, Enrel, Cimzia and now I'm on Benlysta. I'm having the best success with Benlysta so far.

I know this sounds like what you tell someone who's getting over a breakup, but this will pass. When I've been in the middle of a flare, it feels like it will never end. I've even looked back and said "remember how bad that whole year was?" and "Oh, god, look how fat my face was from all that prednisone!"

But, it will get better. And you will have less pain and more mobility. And you will lose the moon-face (if you get one, 30mg isn't too bad)... And you'll look back on this and say "wow, that sucked". Keep your head up!

Thank you so much. It is nice to hear it gets better and even nicer to hear that you've found something that works. I am going to write down the medications you've mentioned and resesarch them and ask my doctor about them too. I've only ever heard of Benlysta but that is a last resort due to the cost.

For some reason I haven't gotten the moon face thankfully! I've gained a lot of weight but no moon face. I feel like I look like I have a pin head in comparison with the size of my body right now hehe.

I have also been having a flare that wont quit. Sometimes I get scared. What happens to me when I feel bad I make it worse. I don't watch what I eat and I consume much more alcohol. This is all new to me too. I first noticed it in November 2011. It seems when I feel better. I am eating right and exercising. I wish you to feel better. I wish we all may feel better.

I have been taken of Plaquinel which was working, but having side effects the doc took me off just when I was starting to feel better, less muscle pain and able to around w/o much pain. But all that has returned. I will be going on methotrexate in a month after my shoulder surgery. My doctor said this new med will help with the pain much better than the Plaquinel. She also said as long as my liver is not affected, they could always increase the dosage.
I am hoping once I start the new meds, thing will get better, but I was told it will take time. I think with this disease, it will always be a struggle to find the right meds and learning to stay away from trigger.
I seems to be asking myself, which comes first, the pain which causes the stress or the other way around. Right now without any meds, I am back to square one and everything, the sun, stress, lack of sleep causes a flare.
I am glad you have a good doctor, at least that is one battle which you don't have to deal with.

bb

Just wanted to give an update. Things have been much better the past two weeks. Not only much better, but well, I feel perfectly normal. Maybe it just took a bit for this higher dosage of methotrexate to stick, but I am down to 10mg of prednisone and I still feel fine. I taper down again today to 5mg and will be on my usual 2.5mg daily after that. I've never felt this good on only 10mg prednisone so I'm really keeping my fingers crossed that this is getting a little under control. I go back to my Rheumy in two weeks. It'll be interesting to see how I am doing by then. I'll keep you posted.

Again, this type of really specific information about medication and dosages is really useful to everyone here, IMHO. Thanks so much, Laraly, and keep it coming... would love regular follow-up posts at long intervals to see how the MTX is working for you.

Vent, please be careful with the alcohol. I used to enjoy a nice, minor binge 4 or 5 times a year-- five or six drinks over the course of four or five hours-- now I really have no choice, being on Coumadin, I just can't drink more than two or three drinks in one evening, EVER, and even that needs to be a pretty rare event. Or I will, like, die-- wow, man. Try substituting alcohol free beer or fruit juice or something, as well as activities during times when you want to drink. I try to get really wrapped up in recording or something so that second beer lasts two hours and then whoops-- time to go to bed. Or eat dinner and go to bed, in our case! And there's nothing wrong with doing AA for binge drinking, either. Harder to treat, but works very, VERY well for many, many people.

Beach, I'm pretty sure the pain comes first. I'm VERY well trained in somatic therapy, I've studied transcendental meditation and psychology, I can see it happening. More and more pain at work, I start to get more reactive with supervisors, and I WANT to get reactive with clients, but stop myself-- I still feel trapped, like I can't leave work until something is done, and must endure more pain. This brings on catastrophic thinking about industrialized society and oppression by the corporate state-- many of my conclusions may be accurate, but fixating on them is unhealthy, and produces depression and sadness.

I also believe-- and evidence suggests-- that mood is DIRECTLY affected by disease process. So, technically, many of us may have two diagnoses in two different categories.

The first category would be something like 293.83, Mood Disorder Due to a Medical condition, where the symptoms are a direct physiological consequence of the illness, (lupus is listed in the DSM-IV as one of the diseases which causes this) or 301.1, Personality Change Due to MCTD or 293.39, Mental Disorder Not Otherwise Specified due to MCTD.

The second category would be issues that are NOT a direct physiological result of the illness, just mentally reacting to the inconvenience and stress of being ill. This might be one of the Adjustment Disorders (I think mine would be 309.9, Adjustment Disorder Unspecified (something that resembles Cyclothymia or "Bipolar Lite.") These diagnoses are not professional opinions, just informed guesses, and they are only useful for classification and to conceptualize what's happening mentally. They do not mean, necessarily, that you need some kind of medication or that there's anything you want to do which you cannot do. Many highly successful and fulfilled individuals have these diagnoses, or even Bipolar I or II, and do very well with psychotherapy and a good support system, and if anyone tells you different, kick their ass! --Cat

Laraly
I hear exactly what your saying. My translation would be. I thought a year ago after years of trying to find the source of my problems, that finding them would make me better. And here we are, feeling good ends up being like getting a gasp of air when your drowning. You think its about to be ok, yet then you realize your fighting still. I am sorry you and I feel this way. And knowing that your not alone doesn't take away any pain.
Good luck
Robert

I was just telling my husband that it's been 1 1/2 years since my diagnoses and I still feel pretty crappy. However, I stopped and thought about just how bad I actually did feel when I first started seeing my rheumatologist and then realized that I do feel somewhat better. The goal is to be symptom/pain fee, which I'm not sure is possible with this disease and possibly I've got my sights set too high. It's frustrating to be on all these meds and still feel like crap. I'm counting down the days until my next check-up, but realizing that I have made some progress since all of this started.

I'm glad to hear you've been feeling better Laraly! I'm new to the site but have had the diagnosis for 5 years now and I too hoped it would get better. No such luck! Only last month did I finally even ACCEPT that yes, I have a disease and yes, it does affect what I can do! I hope that you're really on the road to feeling better and that your next visit is a positive one! Those are always really nice. lol

Catalyzt, I was wondering if the disease could also be affected BY the moods as well as the other way around. I know that on some days trying to put a positive spin on things lessens my pain a bit but on days when I'm throwing a big pity party the pain seems to intensify. I suppose that's not very scientific explanation though. :)