For those of you on DMARDs and biologics, how do you judge their efficacy? Do you recall how you felt without drugs and figure anything is an improvement? Or do you go by the extent to which you have symptoms while on medication(s)? Do you assess how many symptoms you have? Do you consider the severity of your symptoms and determine a level at which you believe your drug protocol is working or failing? Just curious how someone who isn't in my head thinks about this. Cheers!
I'm just on DMARDs and NSAIDs. I know they are doing something, because I still remember life before I started Plaquenil. I was in a fog, couldn't make it through the day without lying down multiple times, and my hands and feet ached and hurt all of the time.
I went on MTX almost 2 years ago, as I started having a lot more tendon issues, including achilles. That did nothing. When I switched to leflunomide, I improved, but the side effects were too much so my dosage was cut in half. But now I'm starting to wonder the same thing. I'm quite certain that the leflunomide is helping, but not where it should be. I recently reupped my dosage to the full dosage. I'm still needing to lay down most days, and I'm starting to get more warm and swollen joints.
So I know that my drug protocol is not failing, but it certainly is not as good as it could be.
There was no life before biologics. I felt like I was given a second chance. Could not believe how much improvement there was. After about 8 months, the greatness started to wane. Probably 60+% better than I was when it all started, but I wanted more. I felt a little greedy asking my dr if he thought I would be better off switching meds. He was a bit disappointed in how quickly the Enbrel started to give out and he felt it would just continue to lose effectiveness. So now I am trying Humira although I am not having the quick response like I did when I started Enbrel. But I am not as sick on this med, and the every other week shot gives me 2 weekends a month without the hangover and flu like symptoms.
I have hope, which I didn’t have for a long time. I have my friends and family, which this disease (making me bedridden for awhile) had estranged me from for too long. I have this site, which instills great knowledge and understanding and other avenues to explore.
And I have my trusty TENS unit: in the top ten f things you can plug in that makes you feel better
I think that while every day above ground is a good day, I am not ready to settle for good enough. I want days filled with wonderful memories for my children. I have consciously decided to go for the best quality of life vs. quantity.
I measure it by good days vs bad days. I aim for greater then 50 % good days. I define a good day by being able to do most of the things I want to do in a day done. If for 12 hours a day I can be vertical and doing what I like, with or without adaptation I call it a win. If pain or mobility or fatigue is so bad I can't do anything it is a bad day. I am on Remicade and it is "Remifading" in the 3 weeks leading up to my next dose. It always reminds me of just how bad it use to be!
I'm wondering the same. Life a year ago was nothing like my life today and that's what scares me. I'm currently on DMARDS, two to be exact along with the occasional use of NASIDS and I have no idea of what good enough will be at this point. I saw my doctor on Monday and was feeling like I could manage, however last night I started having pain again and it's impacting more joints at one time.
Every day, every week, every month is different. I haven't had the burning in my hands and feet, nor have I had the dactylitis for several weeks, however I am having more spinal involvement(lower back, neck), along with enthesitis and bursitis in both hips. I was told by my rheumy if I'm in pain then my disease is not managed. I guess I better call my doctor's office back and make another appointment to get rolling onto biologics.
I really wanted this current combo to work, I fear going through meds and also need some solid info about how much better I can expect to get because I need to start looking at my future and need guidance on my career and what are the chances of me physically going back to work or shall I be looking at a duty to accommodate? My Rheumy and Doctor both feel there will be a combo to get me fully functioning and back on the ship....but I'm not believing that at this point and is that really the best for me long term?
I agree with Sybil and judge my days on function. I've given up on thinking I will ever have a pain-free day or will ever feel "normal" again. If I look back to where I was at 2 years ago I'm flippin' ecstatic and grateful my meds work as well as they do. It took a long time to find the right combo to make me a functioning human again. Sure, there are flares and bad days, but I just try to suck it up and trudge through them. I found out I had fibromyalgia secondary to PsA and started Lyrica, which has helped tremendously with the aching pains. Before that diagnosis I was really starting to feel helpless as far as the pain was concerned.
I knew my meds were working when I was going up my stairs and halfway up I stopped and kind of freaked out. I was so used to it taking a long time to go upstairs (for a year I couldn't even go up there!!) and I realized I had just gone up 7 stairs in a flash. That's how I knew my meds were working.
I hadn't really thought about it. For me, I guess, it's a matter of quality of life.
Before biologics, I was using some sort of mobility device to get around - cane, crutches, or wheelchair, depending on the day. Some days I wasn't getting around because neither my legs nor my arms worked (when I have swelling in my neck/shoulders, I can't lift my arms). I was in constant, severe pain.
After Enbrel, my walking was much better, energy a bit better, but I continued to have back issues and incredible back pain.
After switching to Remicade and adjusting the dosage, I rarely use mobility devices, have hiked miles through Connecticut hills and the White Mountains of New Hampshire, and, until developing Morton's neuroma in my foot recently, am able to do just about anything I feel up to doing. My energy levels still aren't what they could be, but I also have thyroid issues, autoimmune hepatitis, and other health issues.
I was thinking of this a lot, my Dr. said they measure your success by time of stiffness. I have pain all the time, but the run over by a truck pain in the morning has lessened and by that morning measure I am significantly improved. I am not stuck to the bed and couch. I know that's improvement.
I still have new joints involved, so also backsliding.
I think sometimes it's hard to define.
I have been thinking about this question for days. I've been in treatment for PsA for over 30 years. I imagine someone new to this disease is going to shoot for a 90% improvement in symptoms, and not be satisfied with less. I would love to have that level of treatment, but over the years I've seen how randomly my body responds to meds. Sometimes I've gotten a full remission. Sometimes I've been thrilled with a 20% reduction in symptoms (usually when I'm completely bedridden...anything is better than that!). I guess I know exactly how bad things can be for me, and exactly how good, and at any time I look at where I've been, what the meds have accomplished, and decide if, at the moment, that is the best I'm going to get.
I know that I've changed medications, on average, every 2 years for the past 30 yrs. My body seems to adjust in that time. So there has been no "one" treatment that is a solution for me.
I can't take biological anymore. Enbril did me in. I got an ADEM from enbril almost 2 years ago. I am thinking about trying Xeljanz. Have any of you guys tried Xeljanz?
Barry
Six months ago I was miserable, depressed, and feeling hopeless with incredible pain and sleepless nights. I spent the summer trying "alternative" methods and a strict diet. When my fingers began to deform overnight I decided to go on the Humira that was prescribed to me months before. It took 6 LONG weeks but it started working. I've been on it for 10 weeks now and other than an occasional sleepless night, I feel like a million bucks (compared to wanting to die not long before!) I take an occasional ibuprofen or Meloxicam if I've over-done it.. otherwise, it's the Humira injection every two weeks and I'm golden. I don't know how long this euphoria will last so I just enjoy the heck out of every day. I'm doing almost everything I used to do. Just learning to take it easy. Hope this helps.
Things I observe:
Level and amount of pain and stiffness
Level and amount of inflammation
Fatigue and quality of sleep
Amount of mobility
Ability to accomplish tasks(function)
GI symptoms
I find the different meds I have tried make the flares more controlled but do not eliminate symptoms. When I can do most of what I’d like to do - without the disease interfering, then it’s good enough. When I am spending too much time “resting” and not able to maintain the activities I’d like to, then it is NOT good enough!
Of course, I’d also like to prevent or slow any damage in the future and take my Enbrel because of that. I also make sure to do Labs regularly to monitor any damage.
I have not found any relief from MTX or Enbrel...that I could say is worth the damage to kidney function. All though I just stop taking both to have some surgery. It has been three weeks off and my fingers are starting to swell again. I have taken MTX now for about 9 months and I had taken my 8th injection of Enbrel. I have been having lots of cramps in calves and in my fingers. Some time I have to grab my fingers and hold them to keep them from pulling in unnatural directions. I am learning that my knees are effected. I am looking for a single level home now because I have weeks that I have a hard time with the stairs. I have had an improvement to my GI track while on Enbrel. While on MTX alone my GI track was unpredictable. Yes unpredictable is a good description. My biggest improvement comes from corticosteroids shots in my back side. But they do not last long one to two weeks.
I failed on Humira and Enbrel....the Enbrel worked for a short while to the delight of my rheumy....Then I was off of it for awhile due to endocarditis....and when I went back on it, it did nothing. I was forced to change my rheumy because he was in NYC and I no longer had transportation...I went almost a year on no meds because I could not find a rheumy willing to dispense a biologic to me due to the risk of infection. Two doctors told me biologics would be a death sentence for me. I was so miserable....spent days and nights in my recliner...hand swollen like baseballs. Finally I found a doctor who saw my misery and is determined to lessen it.
He put me on Actemra and MTX. I"ve been on Actemra now for three months. I didn't think it was working....Last month I was on heavy steroids due to a bad asthma attack that hospitalized me. It was wonderful...! What a reprieve!! Then the steroids stopped and slowly the pain returned....AFter my third week in the four weeks of Actemra, the pain REALLY returned...back to my recliner. I need to talk to the rheumy to see if they can shorten the time between injections.
I know the consequences of taking this med for me could be fatal. I would rather have a short time feeling good, then living for years and years in misery. I've thought over this for several years now....and I'm quite sure that, for me, that is the best thing. Now I've been diagnosed with PsA, RA, Sj, and OA. I have several joints needing replacement and NOTHING takes the pain out of those joints and out of my neck....That pain seems to be here to stay. If things do not improve more than this, I would be willing to try a new biologic....but that will be up to the rheumy.
I was on Humira for about nine months, went off Humira for two months while I was taking antibiotics for bronchitis. When I went back on it no longer worked, at all. Now I'm on Enbrel and feeling well. I too asked the question "how good is good enough" and my doctor told me you are good enough when you go thru a day without thinking about arthritis!
Not Understood, I don’t understand! LOL You say you haven’t found any relief from MTX or Enbrel, and yet when you went off them for surgery, your fingers swelled up again. And now you have leg and finger cramps. And your knees are now affected? And then you say that Enbrel helped your digestive tract? It sounds like Enbrel may be doing you a bit of good, and really, eight weeks isn’t very long for that to happen. Usually they say give it three months. So it sounds like you may be having more success than you think. Good luck with the surgery, and I hope you are on the mend soon!
Not Understood said:
I have not found any relief from MTX or Enbrel…that I could say is worth the damage to kidney function. All though I just stop taking both to have some surgery. It has been three weeks off and my fingers are starting to swell again. I have taken MTX now for about 9 months and I had taken my 8th injection of Enbrel. I have been having lots of cramps in calves and in my fingers. Some time I have to grab my fingers and hold them to keep them from pulling in unnatural directions. I am learning that my knees are effected. I am looking for a single level home now because I have weeks that I have a hard time with the stairs. I have had an improvement to my GI track while on Enbrel. While on MTX alone my GI track was unpredictable. Yes unpredictable is a good description. My biggest improvement comes from corticosteroids shots in my back side. But they do not last long one to two weeks.
Okay, you sound like my wife....LOL.. I am hoping for big changes and everyone else see the minor changes. I do not see them until I am reminded of them. I am hoping for yard work, mowing lawns, racking leaves, and weeding the garden. It is time to shovel snow in the coming days. I get to just look right now. I want to run and play games with my grand kids. But again my wife would be quick to point out that it may not be the PsA causing those issues. I have a lot of overlap between issues. My back being the biggest. I was hoping the MTX and Enbrel would help my overall mobility. Here is my laundry list of issues:
Spinal stenosis L, T and C full spine.
Degenerative Spine full spine. I have lost several inches in height in the last few years.
PsA, RA, and Osteoarthritis
Fracture of L2 on the anterior which has never healed (35 years ago). If I am active it flares up.
I have a spinal stimulator in plant, which comes with it's own pain.
I have dry eye syndrome, have had both tear ducts plugged I have double visions
Plantar fasciitis both feet
Osteoarthritis in both knees
Gout
Pustular psoriasis on both feet and hands
Sever sleep apnea
My wife thinks a good day is when I get out of bed. I think a good day is when I get out of bed and get something productive done. Even if it lands me in bed the next day. I am now 55, I have had most of these problem from when I was 16. I wish for a pain free day.
Seenie said:
Not Understood, I don't understand! LOL You say you haven't found any relief from MTX or Enbrel, and yet when you went off them for surgery, your fingers swelled up again. And now you have leg and finger cramps. And your knees are now affected? And then you say that Enbrel helped your digestive tract? It sounds like Enbrel may be doing you a bit of good, and really, eight weeks isn't very long for that to happen. Usually they say give it three months. So it sounds like you may be having more success than you think. Good luck with the surgery, and I hope you are on the mend soon!
Not Understood said:I have not found any relief from MTX or Enbrel...that I could say is worth the damage to kidney function. All though I just stop taking both to have some surgery. It has been three weeks off and my fingers are starting to swell again. I have taken MTX now for about 9 months and I had taken my 8th injection of Enbrel. I have been having lots of cramps in calves and in my fingers. Some time I have to grab my fingers and hold them to keep them from pulling in unnatural directions. I am learning that my knees are effected. I am looking for a single level home now because I have weeks that I have a hard time with the stairs. I have had an improvement to my GI track while on Enbrel. While on MTX alone my GI track was unpredictable. Yes unpredictable is a good description. My biggest improvement comes from corticosteroids shots in my back side. But they do not last long one to two weeks.
For those of you on DMARDs and biologics, how do you judge their efficacy?
By my inflammation levels both blood testing and physical exam. I have ten years of CRP and ESR results plotted, a change in those levels is easily noted. each of the entestitis ppionts are valuated at each exam
Do you recall how you felt without drugs and figure anything is an improvement?
I don't remember how I felt and I NEVER compare. What I do is keep track of what I can do and rang of motion.
Or do you go by the extent to which you have symptoms while on medication(s)?
NEVER. I will always have symptoms. I know that I have an incurable progressive disease. Some days I think about them less than others (or not at all) Those are good days.
Do you assess how many symptoms you have?
Absolutley NEVER. Okay I have to make a confession. Sometimes I do and every time I do I feel worse. I have read some folks posts and say "yeah I got that, I did that" The fact is until I think about it,most of the time the time I didn't know it was supposed to be a problem until someone tells me it is. I have been around this stuff for a very long time in a lot of different roles.
One thing I can assure of is that folks with the longest list of "symptoms" and the most minutia in them rarely have severe disease. In fact all too often many of their symptoms are self imposed because they eat poorly, rarley "move" and wait for the pills to work.
These folks are also so self absorbed with their bodies that they have "side effects" from many if not all meds they take, (some that no one else has ever had) Nothing helps, nothing works. They constantly bring themselves down and as many around them as they can. If I have 6 URI's a year but can go fishing with my grandkids, I don't have a side effect, I have an opportunity. Beats the hell out sitting on the couch. Thats not a side effect. An ADEM might be side effect. A rash? Big deal, I remember the P on both elbows, my knees, knuckles, the itch the Burn, the bleeding. Who gives a rats patute about a "site reaction"?????
No, I don't believe a positive attitude can overcome the disease BUT it can give you a life. perhaps with pain, but you can work past that IF you choose. There is a guarantee that those with a negative attitude who don't fight past the mental issues and pain will have a shitty life, little function and will become so apparent that people withdraw and avoid you. But that's all right it adds to the self pity "no one cares or understands this disease" They don't get people like fighters and support them " bad losers" and those who "give up" don't get the love.
Do you consider the severity of your symptoms and determine a level at which you believe your drug protocol is working or failing?
I only consider the severity of my symptoms in terms of objective measurements. Range of motion, function obvious inflammation etc etc. NEVER in terms of pain levels UNLESS there is a determinable reason for pain. This leads to problems for some because we and our docs may miss something.
Sorry for the Monday morning rant. I was avoiding this thread. as Rather than answering the questions you asked, it started to become, as way too many have of late, another opportunity for folks to rant about their symptoms. I was afraid I might say something to the effect of get off the pity pot and do something about the disease but I didn't.
I agree with tk; if you can make it through the day without feeling consumed by pain, overwhelmed with fear, and worried about your future, then you're doing well!
Every day that I can get up for work, am able to enjoy my life, have some fun, don’t have debilitating fatigue, and have the brain power to work round any obstacles PsA may put in my way…That’s my level of ‘managing well’, that’s my aim, as far as ‘good enough’. Lets face it none of us are gonna be 21 again ( unless your not yet 20) but as long as I can act it sometimes I’m happy with my lot 