I’m just wondering. I can’t do all the fun physical things I used to do. Like run, kayak, etc. b/c I hurt so much afterward. My foot/ ankle/hip pain on one side makes it hard to stand and do dishes, vacuum, prepare food, walk the dog, shop for food, etc. My hands make it hard (as in painful) to snip beans, open packages, etc. Both my hands and feet plus my neck make it so painful to rake, mow the lawn, etc.
I know this is mild compared to soooo many of you, but it is a huge life change for me. If your foot hurts to much too walk on, which of these things can you do? How?
Why do docs think this is mild when it just keeps getting worse and I lose more of what I can do?
If it's "mild" the doctor should be able to put it into remission -- meaning no symptoms. With the meds available now, that's the only definition of mild I would ever accept.
If my PsA is in remission, the doc can say whatever she wants and I'll bring her flowers. If it's not in remission, then it's my doc's job to fix it. The drugs aren't so harsh that you should have to live with any symptoms because you're doc is trying to protect you from the side effects. I've been taking biologics for 20 months now and I haven't had any side effects at all.
Thank you Andrew, that does help. It’s not in remission with no symptoms. Thank you for telling me that that is what I should expect. I just feel like they are telling me to live with it. Not good!
I was like you and without an aggressive treatment I became seriously ill. Like so many dpcs and Rheumo's your doctor is obviously unaware of up to date treatment but if it is mild, even older treatment should help. Get yourself educated and challenge the doc.Get hold of the book Psoriatis Arthritis (Facts )by Dafna D Gladman, read it and fight. Amazon has it.
Enbrel with some help has allowed me to resume my life including bike riding kyaking and swimming after being in a wheel chair.
I walked in with only one bad joint, my knee. It was terribly swollen. We never had a discussion about mild, moderate or severe. The rheum told me. "You have psoriatic arthritis, and this is how we know.... We're going to put you on methotrexate for a month for your insurance and then we'll add a biologic because the biologics work." She was absolutely right.
Once you've tried several of the anti-TNF's and either they don't work or you can't take them, then you've gone through Stelara and Orencia, and you've tried one or more in combination with DMARDS... then well you have to live with it ... until something better comes along. But if you have "mild" disease, it's likely a biologic (or a biologic with a DMARD) will knock it out for you. I've done a lot of reading on the biologics. I see no reason not to try them.
I actually asked my rheumy about remission a few months ago. She said that only 10-15% of people with PsA will experience a remission. This doesn't mean that you can't experience significant relief of inflammation and symptoms, but that remission isn't all that likely.
Andrew- I think your story may be somewhat unusual, in that you had only one joint swollen, and that you were put on a biologic so fast.
In terms of "mild", I'm not quite sure it's really a valid question. More important is progress. The goal is to slow the progression of the disease as much as possible. I was diagnosed 5 1/2 years ago. I have some damage. When I am NOT in a flare, I have pain, but it doesn't slow me down horribly. Do I have to have rest time built in? Yes. Do I have some joints that don't seem to ever be pain-free and/or not swollen? Yes. By the way, my doctor is very happy with my progress overall, that it has been fairly slow. My hands and feet are not disfigured, although there is damage visible on x-ray, particularly in my hands. I tend to have a lot of weakness and instability in my joints, so I do physical therapy as needed. No meds are going to bring that back without my working on it.
I've had periods where I can't do much of what I want to do, in terms of physical activity. At this point, I've stepped back a bit. I still walk, and hike when my hips are doing okay. I bike ride, but it's at a different level most of the time. More of a cruise than what I used to do, but I can still do it. And for work around the kitchen? I use more tools to help me.
And in answer to the hidden question, yes, I occasionally have a pity party. It's okay to mourn, but spending all of my time there isn't useful.
Remission is one of those rather strange words with multiple meanings. The same with mild or severe. The disease WILL progress unless you are one of the 10% -15% who go into "remission" or the 90%+ who respond to treatment.
First of all you DON'T want to know what your doctor means by mild. Just hope you don't find out and leave it at that okay?
Finding treatment takes time, but they do find it but it take several months with every change. There ARE reasons not to use the nuclear weapons of treatment. Andrew is a great proponent of biological treatments as am I. They are great when they work.WHILE THEY WORK.
If you can get relief without them DO IT. Right now there are 5 available (more coming) some of them are cousins so there are really only three. Unless you are old like I am there are some numbers you need to know. The average useful life of a biologic is less than 5 years. (FWIW Phil Mikelson 's golf game has gone to hell and he is no longer being prominently featured in the Enbrel commercials) take that time multiply it 3 or 5 (depending on if the cousins are effective) and you have a pretty good idea of how long you can hope for biologic treatment. If each one is effective. Bit of course the odds are about 50 50 if they will be.
OF COURSE it can be longer but the odds of it being shorter are the same. If you are my age, it will take you to who gives a crap. If you are 30??? I would not want to gamble on new developments.
The most important thing is get past the grieving stages. They are not quite the same as the touchy feelies say. There seems to be 2: Pissed off and Pity Pot. The only hope you have here is to use all the tools at your disposal and fight back hard. The most important thing you can do is MOVE and STRETCH. Yes it hurts. BUT NOTHING compared to how you will feel if you don't. My grandparents had ONLY this tool available. My grandfather was the first pharmacist in this state and was convinced aspirin would put him out of business.
You will have a constant parade of "new normals" the simple fact of the matter is people without PsA have a constant set of new normals.
The answer to that one is maybe....... I'm sure trying right now. I'm taking mine every 5 days and 25mg of MTX.
Less than great is preferable (to me) than starting over with something else. Remember these things only work half the time anyway. so concievably one could be a year of treading water in a toilet with PsA's hand on the flush handle befor a new one worked
Thank you ALL! I a little torn between, not too much, the naturalpathic way and medicine. I needed to work through that. The above info is VERY helpful and I posted on the World Autoimmune Arthritis site and the feedback has been similar. They also asked, as some of you have if my doc is board certified!
I have a script for a DMARD. Just picked it up. I am a little afraid to take it after having an allergic reaction to the last one. But I am going to take it.
I don’t feel like I’m on the pity pot. I am pissed off! I’m having a hard time at work being “professional” b/c of the stress and anger. Thanks for pointing out that is a phase in grief.
I AM going to seek another doc that is not set on diet as a cure.
I hear you. Remember, fear the disease, not the treatment (it's a bit of a mantra we have around here).
I've been at this 31 years, and all I know is that nothing ever stays the same. Over time I can see years where I felt pretty good (remission, a few times without meds, just happened for no reason, once with), years when I could hardly get out of bed and needed a scooter, then back up to running around with mild-moderate pain but not much fatigue.
Over time, however, I see a general downward trend. Each time I have a "good" period of time, I am able to do slightly less than the last time I was doing pretty well. I'm also aging, and having cumulative damage. So that's part of it.
My feelings about my disease have been all over the place. Sometimes I feel in control, competent, and ready to kick ass, and sometimes I'm sobbing in bed thinking I can't do this one more day. It's ok to feel whatever you are feeling. Just know that whatever is going on, it WILL change at some point. Work with what you have... I'm no optimist, but I've made it this far and have a pretty darn good life :)
Clr said:
Thank you ALL! I a little torn between, not too much, the naturalpathic way and medicine.
There seems to be a real indication a co-doseof mtx, lefluminide or low dose prednisone is effective in the continuing effectivenese of Enbrel. Certainly in my case it has resulted in the longest period without major problems whereas Enbrel by itself quickly lost its efficacy.
Laura E D said:
Given the average useful life for a biologic is less than 5 years, does it make a difference to the lifespan when the biologic stops working so well if you double the dose of the biologic or stay on the same dose and add in MTX?
Not good!