I just found out that I have Psoriatic Arthritis really bad in my hands and back. My x-rays show that I have a joint damage in my right finger and really bad in my left wrist. I am kind of scared because I am only 28 and wondering what is in store for me later on down the road. Will it get worse? I am taking plaquenil now but I have to just take one, because it started messing with my moods, so the doc said its going to take longer. I just want to know more about this kind of stuff. It is hard to ask my doctor anything because it feels like he is rushing me.
Hi kariscott2, welcome!
I think each person with PsA finds it progresses at different rates. There are 5 types of PsA but even within each sub-group each person has their own rates. Unfortunately none of us know how fast our own PsA will progress. Having said that I feel it is imprtant to find which medications help our symptoms in order to slow the progression. I always take a list of questions with me. My brain seems to go a little blank and I seem to try so hard to be a good patient- non-complaining and compliant- that I forget all my questions! I am too embarassed to pull my list out in front of anyone so I read it before the appointment and again while I am waiting for my Rheumy but keep it hidden in my purse! Too funny, I realize how silly it is but I still do it. Good luck to you and hope you find as much support on this site as I have.
I use a list with everything, with every Doctor, sometimes even at the Dentist office. I do not feel there is anything to be embarrassed about. Pain causes the 'fog', and if anyone understands it, it is your Rheumatologist.
Hi SK!
I guess that's why I find it funny-there IS nothing to be embarassed about with a list. I think I am embarassed about it as I was a nurse before I became disabled with PsA this past May and a single mother. Because of these roles I became an incredable multi tasker and now more often than not I get to a room only to find I have no idea what I was looking for! Luckily leaving the room and re-entering it brings back what I was looking for. I have noticed that when my pain is high I am more forgetful but I have often wondered if the high inflamation causing the pain is also affecting my brain processes. I have never found that mentioned in the literature but it is what it feels like. Unfortunately my Rheumies sometimes get it and sometimes do not.
I have notebook which I use all the time. I list errands, chores, shopping lists and phone calls (with numbers!) that I need to make. When I am feeling good I mark a few off with a Sharpie and feel quite accomplished!
I have to laugh sometimes at this disease sometimes to keep from crying though sometimes I think a good cry would do me more good:-(
Hi, kariscott, it's nice to meet you, but I'm sorry to hear that you have PsA damage already. By the time I was diagnosed, I had damage in my feet. The rate of progression, like everybody else says, is highly variable. I've had transient and minor symptoms (that is, I could carry on and doctors could shrug them off) for about 20 years. When that damage happened, or how long it took for the damage to occur is anybody's guess. But I've got it, and it's permanent.
What we all hope for is something (usually a medication) that will put us into remission, a state where we are comfortable enough to live our lives, and where damage isn't being done by the disease process. I've been on various drugs for almost a year, and I haven't arrived at that happy state yet. My rheumatologist, though, says that it's not the damage that hurts, but the inflammation. So once they find the key to putting the flames out, I should be more comfortable. My rheumy told me that we are going to try drug after drug until we find the one that "does it" for me. After four DMARDs and no success, I'll confess that I'm starting to become an impatient patient!
Nobody can predict what's in store for you down the road. Your best bet is to work with your docs to find the key to the place where you are in remission, and then hope that you can stay there for as long as possible.
I hear you about doctors being rushed. That's because they are. I guess the more patients they see, the more money they make, but I also believe that they want to be of as much use to as many people as possible in the course of their day. The waiting room, and the waiting list is full for many of the best practitioners. The suggestion about carrying a list is a good one, and I do it all the time. In fact, my family doc's opener with me is usually something like "Hi there, what's on your list today?" LOL. Last time I did The List on the computer, and made a copy for her ... kind of like an agenda. She loved it and thanked me. I'll do that again! I think a well-organized doc must like it when their patients are as well-organized as they are.
About information. You've come to the right place. For almost any experience or any question you could have, there are people here who can help. We're not docs, but between us, we have had lots of experiences. And don't forget that the internet is full of information (although it can become TMI pretty quickly).
Hope to see you posting again!
Seenie
Hi Kariscott, and welcome.
I think it is a pretty individual disease. I too have it in my hands and in my back (among others), but my hands seem to be suffering the most in terms of visible joint swelling and deformity. It is really a trial and error with the medicines to see what works for you. I will likely be either continuing on with Plaquenil, or Sulfasalazine, or moving to Methotrexate. I think they all want you to try these types of drugs before moving on to more of the "heavy hittters" such as Enbrel, Humira or Remicade. Perhaps they can get you some anti-inflammatories to help out as well. In terms of lists, I don't know your doctor (of course), but in my past experience most have appreciated a well organized patient....I use a list everytime I go.
Good luck to you.
Seenie-
thank you for mentioning 'feeling rushed' at the doctor's office. I thought it was just me! I really hate to sound like a whiner each visit but they ask how i am, and unfortunately I always have a list of body parts that burn, ache, or don't work this week. I would love to go in one time to say 'everything feels wonderful - see ya!' So i am sure i bore him with my 'list' but he asked!?!? Regardless, they provide a service, of which we/insurance pays, and they should provide information. any kind of information. talk about the weather - anything. not just 'see you in three months'!!! In summary - we have an opinion and feelings, so let's all make a pact to tell the doctors' what is going on. Eventually perhaps they will either find a remedy that gives us a reasonable quality of life - or better yet - find a bloody cure for this thing! Do I hear an Amen?!?!?
:)
Seenie said:
Hi, kariscott, it's nice to meet you, but I'm sorry to hear that you have PsA damage already. By the time I was diagnosed, I had damage in my feet. The rate of progression, like everybody else says, is highly variable. I've had transient and minor symptoms (that is, I could carry on and doctors could shrug them off) for about 20 years. When that damage happened, or how long it took for the damage to occur is anybody's guess. But I've got it, and it's permanent.
What we all hope for is something (usually a medication) that will put us into remission, a state where we are comfortable enough to live our lives, and where damage isn't being done by the disease process. I've been on various drugs for almost a year, and I haven't arrived at that happy state yet. My rheumatologist, though, says that it's not the damage that hurts, but the inflammation. So once they find the key to putting the flames out, I should be more comfortable. My rheumy told me that we are going to try drug after drug until we find the one that "does it" for me. After four DMARDs and no success, I'll confess that I'm starting to become an impatient patient!
Nobody can predict what's in store for you down the road. Your best bet is to work with your docs to find the key to the place where you are in remission, and then hope that you can stay there for as long as possible.
I hear you about doctors being rushed. That's because they are. I guess the more patients they see, the more money they make, but I also believe that they want to be of as much use to as many people as possible in the course of their day. The waiting room, and the waiting list is full for many of the best practitioners. The suggestion about carrying a list is a good one, and I do it all the time. In fact, my family doc's opener with me is usually something like "Hi there, what's on your list today?" LOL. Last time I did The List on the computer, and made a copy for her ... kind of like an agenda. She loved it and thanked me. I'll do that again! I think a well-organized doc must like it when their patients are as well-organized as they are.
About information. You've come to the right place. For almost any experience or any question you could have, there are people here who can help. We're not docs, but between us, we have had lots of experiences. And don't forget that the internet is full of information (although it can become TMI pretty quickly).
Hope to see you posting again!
Seenie
You do. Amen.
Seenie
breckstar said:
let's all make a pact to tell the doctors' what is going on. Eventually perhaps they will either find a remedy that gives us a reasonable quality of life - or better yet - find a bloody cure for this thing! Do I hear an Amen?!?!?
:)
Seenie said:
Hi, kariscott, it's nice to meet you, but I'm sorry to hear that you have PsA damage already. By the time I was diagnosed, I had damage in my feet. The rate of progression, like everybody else says, is highly variable. I've had transient and minor symptoms (that is, I could carry on and doctors could shrug them off) for about 20 years. When that damage happened, or how long it took for the damage to occur is anybody's guess. But I've got it, and it's permanent.
What we all hope for is something (usually a medication) that will put us into remission, a state where we are comfortable enough to live our lives, and where damage isn't being done by the disease process. I've been on various drugs for almost a year, and I haven't arrived at that happy state yet. My rheumatologist, though, says that it's not the damage that hurts, but the inflammation. So once they find the key to putting the flames out, I should be more comfortable. My rheumy told me that we are going to try drug after drug until we find the one that "does it" for me. After four DMARDs and no success, I'll confess that I'm starting to become an impatient patient!
Nobody can predict what's in store for you down the road. Your best bet is to work with your docs to find the key to the place where you are in remission, and then hope that you can stay there for as long as possible.
I hear you about doctors being rushed. That's because they are. I guess the more patients they see, the more money they make, but I also believe that they want to be of as much use to as many people as possible in the course of their day. The waiting room, and the waiting list is full for many of the best practitioners. The suggestion about carrying a list is a good one, and I do it all the time. In fact, my family doc's opener with me is usually something like "Hi there, what's on your list today?" LOL. Last time I did The List on the computer, and made a copy for her ... kind of like an agenda. She loved it and thanked me. I'll do that again! I think a well-organized doc must like it when their patients are as well-organized as they are.
About information. You've come to the right place. For almost any experience or any question you could have, there are people here who can help. We're not docs, but between us, we have had lots of experiences. And don't forget that the internet is full of information (although it can become TMI pretty quickly).
Hope to see you posting again!
Seenie
I don't know that much about plaquinil, I guess it's used more often for RA. The national psoriasis foundation doesn't list it as a first line treatment.
http://www.psoriasis.org/psoriatic-arthritis/treatments/antimalarials
I think the best drugs for PsA are the biologics. The problem is that the biologics are expensive so insurance companies usually require that the patient tries something else first.
The biologics are often used in combination with methotrexate.