As I read through some discussions, I’m left with a question. I know this is a chronic condition. I thought that the medications or combination of Is supposed to help. I’m seeing a lot of people still suffering even on the meds. If you are still suffering does it mean its not as bad or does the medicine make it bearable?
Never give up hope: The various medicines have different levels of effectiveness and people respond differently to them. There's plenty of people for whom their treatments work amazingly well, but sadly that's not everyone. Most of the people who hang out here do so because they're still hurting in some way. As your rheumatologist, he/she will have a better idea of what happens in the broader community of people with PA.
As one counter example, I'm on Enbrel for 14 months now, and for me it's working like a silver bullet. I don't have any pain from PA.
And I just got switched to leflunomide, which is working beautifully right now, but with side effects. If I weren't on it, it would be WAY worse.
I've been on simponi and methotrexate for about a year and I am MUCH better because of it. I still have bad days, but with a few exceptions my bad days now don't even come close to the bad days I had before starting drug treatment. Some people, myself included, believe that taking these medications helps to stop the progression of the disease which in turn stops the progression of joint damage.
of course medications work.. they can sometimes cure (not PsA though) reverse symptoms and generally make ones conditions more tolerable. But every one has different reactions, so really, you need to discover this on your own by trial and error.
one thing to keep in mind, you simply CANNOT infer that something does or doesn't work, simply by reading an online message board.. never, ever take what you read here and make a hard conclusion of fact about it.. your doctor is your best source of information and no one can answer that question but you and your doctor..
Yes medications work. Like previous people have said in previous post, each individualls body reacts differently. For me, the medicines have allowed me to walk more comfortably which allows me to be involved in my kids lives. Without it, I would not be so involved.
If you are not satisfied, speak to your doctor. She or he will work with you to get the best results for you.
Hey thank you all for your responses. As I just started my treatment, I’m currently taking medrol 12 mg/daily and humira every other every week. On the weaning side of the steroid, however, because I’ve done so much research and reading multiple drug effects and suffers comments, i realize this is not specific to me, though, I look for various responses and just compare.
As for me, i had side effects of steroids since starting. Took my first dose of humira two weeks ago. You know, you dont get the “inside” information from reading everything from drug companies or webmd, etc.
Because, i have no idea what really to expect with the meds, some have flares, others do not. Perhaps my questions should be even taking meds, how often do you have flare ups, what do you do when it happens, if the medicine your on “works” why do you get the flares, should you change meds if flares continue or how many flares should concern you before you talk to the doc about changing meds?
For me the biologics are "working" when I have more good days than bad. The mtx I take 22.5 mg a week which I inject. It takes the edge off the flares so I can open my hand, lift my leg, etc. Some days are very good, I can walk without a cane. I can get dinner clean the house, etc. Bad days I have trouble even showering and dressing. When i no longer have good days and the immobility I have with flares becomes my new norm it is time to change biologics for me. Each biologic has worked about a year for me. I find when it's bad I do not think well, I usually have a sharp wit and good sense of humor, during flares I do not. My joints are hot swollen and red. My tendons swell and really hurt. My feet are hard to step on, etc. I can't hold my plate or cup, etc, I have flares even when the meds are working well when I do to much or am stressed. Things start to tighten up and get painful. When the flares become my new norm and the meds aren't working it is much more painflu and instead of dealing with stiffnes I am unable to open my hand or put weight on my feet. Hope this helps :-)
Hi Never give up. I wanted to address your question about why people still get flares when the medicine is "working." I had this exact same question myself about a month ago. I was doing great, feeling pretty good most of the time for several months. I was starting to think my symptoms were going into remission. Then out of nowhere, I get a flare up in my knee that was so bad I thought I had a blood clot and ended up going to the ER. That week I followed up with my Rhu. and asked her why this would happen when I seem to be getting much better. Her response was this: Think of it like a person going to the dermatologist for acne. The dermatologist gives you medicine and eventually the acne clears up. Then all of a sudden you get a giant zit. That does not mean that your whole face is going to break out all over again, it just means your body still has the potential to make zits, but you have medicine that is keeping it from getting out of control.
I hope this helps. It is how I explained my knee to my family and it seemed to help them understand, kind of.
Never give up hope said:
Hey thank you all for your responses. As I just started my treatment, I'm currently taking medrol 12 mg/daily and humira every other every week. On the weaning side of the steroid, however, because I've done so much research and reading multiple drug effects and suffers comments, i realize this is not specific to me, though, I look for various responses and just compare.
As for me, i had side effects of steroids since starting. Took my first dose of humira two weeks ago. You know, you dont get the "inside" information from reading everything from drug companies or webmd, etc.
Because, i have no idea what really to expect with the meds, some have flares, others do not. Perhaps my questions should be even taking meds, how often do you have flare ups, what do you do when it happens, if the medicine your on "works" why do you get the flares, should you change meds if flares continue or how many flares should concern you before you talk to the doc about changing meds?
This is great information. Thanks for sharing.
I think this is definitely a better question for your doctor but the impression & info I get form mine is that the ultimate goal is to reach some sort of remission, ideally. Getting there is a giant trial and error process most of the time. Sometimes you respond to one med right away sometimes it takes a while for you to try the right med or combo of meds. Flares happen for tons of reasons. So even if your meds are "working" maybe you get under a lot of stress for a work deadline or maybe youve been slacking on taking your meds on time, or youve been staying up late, etc etc so a flare can show up. Ultimately your experience for what works for you is going to be different than what helps all of us but youll gradually get the hang of things dont worry.