I saw my Rheumatologist today. I asked her about the prognosis with PsA. This was big for me. I am more afraid of being an invalid or totally dependent than just about everything.
What was her answer?
Her answer for me was that she does not see people made invalid by this disease any more. Since the advent of biologics the prognosis is excellent with very little "dependence" and we are living almost as long as people without PsA. This relieved my mind immensely. It had been a big fear of mine. She went on to say that people with RA (which was also the same as PsA until the 1960s where it became a separate diagnosis) what caused them to become invalids was the medications used to treat it. That correlates with what I remember. People who were on large doses of steroids and mtx ended up brittle and bent in fixed positions. Really horrible to behold and in terrible pain. She also told me that for people like me who can get about a year on a biologic before our immune system renders a biologic ineffective sometimes have to live with some pain and disability but the biologic will continue to prevent the really horrible destruction of joints. All good news for all of us!
Definitely good news! I asked my rheumatologist a similar question yesterday, and received a similar answer. I was fussing because I am getting married in a few months and my digits keep going all over the place, and he said I would be fine by then, even if we have to use biologics (I am hesitant because I work with a lot of people with uncontrolled and communicable diseases.) So glad your rheumatologist is hopeful for you! What a lucky time to live in! :)
I suppose I am living proof going in to my 33rd year with Psoriatic Arthritis.
Congratulations Rosen! I am so happy for you.
I had one finger that was totally off it's "pully". It was the ring finger on my left hand and this was before I was diagnosed with PsA. I debated getting it fixed as it didn't hurt and didn't really bother me. I had been divorced for 10 years and laughed to myself "it's not as if I will be using that finger!" I had the finger injected, did the PT and kept it in the brace for 8 weeks which was a pain as I was a triage nurse who typed while talking on the phone with patients. Needless to say while still in the middle of the 8 weeks of brace I met the man who is my husband. And about two years after we met he put the most gorgeous diamond on that finger! I am glad I got it fixed!
I wish you the same happiness in your marriage Rosen.
Good for you, Michael! I think we all feel like it is sometimes safer to not ask and to live in denial but here's proof that it may be better to know the truth.
I believe truth is always best but it took me 7 years to ask her!
Slow and steady wins the race!
Maybe I am an honorary turtle too........
Thank you for sharing that. I have always assumed that I wil be in a wheelchair someday and have been afraid to have that chat with my doctor-maybe I should.
red-headed turtle!! I'm not sure if one can simultaneously have the traits of a hot-head and of a turtle. But maybe there's a little polarity switching going on!!
michael in vermont said:
Maybe I am an honorary turtle too........
So awesome that you asked what can be a scary question for many.
I can say that I'm not at all afraid of ending up in a wheelchair. PsA has already introduced me to the wonderful world of canes, crutches and wheelchairs, as those were the only way I could get around until I found meds that work for me. As it is with many things in life, the concept of needing a wheelchair was much worse than the reality of using one.
I think my fears are around being vulnerable. I have worked hard on patience the last few years. And for an A type nurse, single mother hot shot it has been tough. I am brave enough to ask for someone to get me something when they are getting up but I shun asking for anything if they aren't up. I am working on it. PsA is bringing me new skills!
Hi Michael I have twice been in a position where I thought Psa would leave me with disabilities the first one was when I was little and my left leg was locked in a bent position this left me unable to walk after having many operations and treatment they fixed my leg I was able to do anything that any other child could do at a similar age you could only tell by the scars it left and the muscle wastage on my left leg the second time was when Psa locked my jaw with a one centimeter opening after having this for a few months my rheumy injected my jaw joint with steroids slowly but surely it started to open again it isn’t a hundred percent but miles better than it was. At times I thought I would have to live like that forever . What I’m trying to say is it is amazing what modern medicine can do for you these days so even if you find yourself in a position like me it won’t be forever and it’s reassuring to know that these things can be treated. I hope that my story reassures you.
It is helpful and I am glad to meet you Catherine.
I liked that you asked the question and can appreciate everyone’s positive reaction…
However here’s my question…since doctors are trained to treat illnesses and sometimes see themselves as either “good doctors” or “bad doctors” by the results they produce…
In a way…a doctor who admits that a prognosis isn’t good is on some level (perhaps unconsciously) an admission of not being a “good doctor”. Plus…when you add in the new wave of the mind’s power to healing…“good news” has healing potential properties while “bad news” tends to potentially be damageing.
I’m new to the group only having been recently diagnosed so my meds haven’t kicked in so everyone knows how I feel…terrible. So I want to believe what I am reading…but I’m leery when I know there is no cure and things tend to over time move from bad to worse. Hope I’m wrong and my meds turn this around for me…I’ll definitely be asking my doctor many questions as I evaluate next moves. Until proven otherwise…call me doubting Thomas.
I think there's a lot of truth to what you said, Tom. There's a lot of risk for complications and over time, things will likely start to fall apart and need fixing. It's not a death sentence, though, and there are ways to work through the rough stuff. I have been hurting all the time for months... and it is the pits. I find that distraction helps, and focusing on what is going well in my life, and in my body.
Tom Geiger said:
I liked that you asked the question and can appreciate everyone's positive reaction...
However here's my question...since doctors are trained to treat illnesses and sometimes see themselves as either "good doctors" or "bad doctors" by the results they produce...
In a way...a doctor who admits that a prognosis isn't good is on some level (perhaps unconsciously) an admission of not being a "good doctor". Plus...when you add in the new wave of the mind's power to healing..."good news" has healing potential properties while "bad news" tends to potentially be damageing.
I'm new to the group only having been recently diagnosed so my meds haven't kicked in so everyone knows how I feel...terrible. So I want to believe what I am reading...but I'm leery when I know there is no cure and things tend to over time move from bad to worse. Hope I'm wrong and my meds turn this around for me...I'll definitely be asking my doctor many questions as I evaluate next moves. Until proven otherwise...call me doubting Thomas.
Hi doubting Thomas, I am glad to meet you. I understand where you are coming from as I was not very responsive to the meds when I was first diagnosed, realized I had had PsA for over 30 years perhaps since birth and was all ready unable to do many things I loved by the time I was diagnosed. I can also see where some of these recent threads are very "pollyannish" if one is a new member.
I'll give you what background I can and reading old discussions should make things a wee bit clearer. I was a nurse for 40 years. I had to leave my desk position 2 years ago as I was no longer able to function in my job. It was a hard blow. I had "down graded" to a desk after having persistent symptoms of PsA for years necessitating a move from floor nursing to a desk. I took myself to a Rheumatologist at age 50 but did not respond to the medications at first. I did the desk job for 8 years the went to part time for 2 years and finally went out on full disability. I had a bent leg when born as well as Psoriasis as a child. My father was a country vet and my only health care until adolescence. I had flares of what i thought was ligament pulls, tendon tears and tendonitis issues all my life. But I was a skier, a gymnist, a dancer, etc so lots of excuses for flares. After menopause at 43 (yes it was early and I had just had a baby!) the symptoms never let up. At 50 I went looking for some answers. So yes I have been afraid of being an invalid. Now my doctor did not say I would ever be as good as new. I walk with a cane, I can't tolerate long car trips as it shakes my spine too much, nor do I tolerate planes very well, I am frequently fatigued and have to plan my activities pretty carefully BUT and this is a BIG BUT I have a great life. My husband and son are very supportive, I am able to stay home, I have good insurance and have found lots of things to do that I really enjoy: I cook for the soup kitchen, I belong to 2 book clubs, I exercise in a heated pool maybe 3X week, I have family and friends I really enjoy. And I can play nurse on here and provide support and information for other psa pts. My big fear was being curled like a fetus lying in a bed unable to move. My doctor who knows me as a nurse (though I have never worked with her but she is friends with many other doctors I have) and knew what i was fearing was what use to happen to pts on long term high steroid, mtx and gold medications. It was they had to fight the disease with until the advent of Biologics in 2000. So she is telling me she just does not see that in my future despite my persistant inability to respond appropriately to the biologics. But she does know my life is very different than what it was prior to PsA. She also knows not to sugar coat anything with an old nurse for a patient. <ost intelligent physicians would rather eat worms than to try that!
Welcome Tom. I am glad to meet you.
Don't over think it Tom. Docs like anyone dealing with the public are taught to under promise and over deliver. They are also scientists. Meaning they are darn poor poker players. A real poker player plays everybody else's hand (and sticks their neck out.) A doc does only what he sees in front of them. A really good doc applies his experience and ignores the "numbers" The fact of the matter is there are darn few things that docs can cure. If you had to have a chronic illness, in all honesty you picked a pretty good one. Over 90% of us live a very normal life relatively pain free, only slight physical impairment which is easily adaptable.
The important thing for you is to not worry about the doc being psyched out, rather for YOU not to psych yourself out. Words like progressive, chronic, incurable are pretty scary. But unless you hear the words mutilans attached to the PsA You'll be fine. IF you take your meds, exercise and live a healthy life style. If you don't do all three, then you worry. The instant you quit fighting and take to your bed chair front porch, its all over. There are a number of us who have seen and fought the worst this disease has. You can/will too.