Well, yesterday the doctor diagnosed me with psoriatic arthritis, they are starting me on methotrexate, frolic acid, and calcium citrate +D, also prednisone for awhile, after my chest X-ray comes back. I can’t believe I got this and am still trying to accept that. How is this going to impact my life? I’m always so active especially in my yard.
Thank you Sybil, I really blame myself, granted with my mom having psoriasis on her skin which I just remembered last week set me up for this, but I allowed stress regarding my sister’s and dad to overwhelm me, my husband told me I was making myself sick, and I did. Yesterday was bad, I was thinking of just ending things but I feel better today although I have some pain today.
Hope, I’m glad that you’re here, even if it is too bad that you’ve become “one of us”. You didn’t do this to yourself, any more than the rest of us did. You, like us, most likely have a genetic predisposition, and some environmental triggers that (maybe) set it off. Please don’t blame yourself: I think congratulations are in order for getting a diagnosis. When you get a diagnosis, that’s when things can start to get better.
I notice from your profile that you started having symptoms last April … 2013 or 2012? Doesn’t really matter, except that I want to say that you’ve managed to get a diagnosis very quickly. And if it was 2013, that’s amazingly fast! There are many stories here from people who went un- or mis-diagnosed for years or even decades. The sooner this disease is detected, and the faster you get on therapy, the better your chances of a good outcome. And that is one thing that you’ve achieved already!
Many of us do understand the shock and desperation that comes with a new diagnosis, and there are many good people here who will listen to, and support you. Will you promise us that if you start “thinking of just ending things”, that you will share those black thoughts with someone who can give you some support? Family, friends, online friends, or even the “crisis line” which you will find under the “Discussion” tab above? Will you promise that?
And finally, you are the same person today that you were two days ago. Except that you now know what the problem is PsA, you have someone who can help treat it, and you have a whole new group of friends to hang out with. You see, things are already looking up!
It is a difficult diagnosis to accept…but as others said, it’s a good thing that you already have a diagnosis, that way you can start treating it right away. It took me over 5 years to get a diagnosis, and some on here had to wait a decade or more! I hope you are no longer feeling like ending things…I will admit that I have had a few of those thoughts myself, mostly because I was feeling like a burden to my loved ones. But things always get better is what I realized. Flares don’t last forever, and medication can give you a lot of your life back. Don’t be afraid to treat the disease aggressively, it will prevent more long term damage. Please hang in there, others are here for you who care and are going through the same thing.
Jillybean, I don’t understand what you mean by flares, my thing has been constant.
Hi Hope,
Sorry about your diagnosis! But you are in the right place here. This is a great support network, and even someone like me with 3 decades of PsA under my belt learns new things every day.
You did not cause your disease, and even if you DID, what would be the point of dwelling on it? It's here to stay, and you will deal with it as best you can. It's great you are getting treatment quickly. Early, aggressive treatment leads to better outcomes.
No one can tell you how you will progress... each person is different, and each person responds to medications differently. That's one of the reasons this group is great, we can get support as well as crowdsource information about treatments and how we do on them.
Hope, some people with the disease have times where the symptoms are worse. This is referred to as a “flare,” but from what I know they can last days, months, or even years. I’m new to diagnosis as well, but my symptoms have been especially worse over the past 6 months.
Hope said:
Jillybean, I don't understand what you mean by flares, my thing has been constant.
I started feeling pain end of April 2013, I thought it was from painting every room in my house, but it wouldn’t go away, then my toe nails started to fall off and swell, with every joint in my fingers so painful I thought I would crawl out of my skin. I know I was genetic predisposed but if I had handled the stress differently it may not have triggered it but nothing I can do about it now. I really need to learn to not worry so much and be stressed.
Seenie said:
Hope, I’m glad that you’re here, even if it is too bad that you’ve become “one of us”. You didn’t do this to yourself, any more than the rest of us did. You, like us, most likely have a genetic predisposition, and some environmental triggers that (maybe) set it off. Please don’t blame yourself: I think congratulations are in order for getting a diagnosis. When you get a diagnosis, that’s when things can start to get better.
I notice from your profile that you started having symptoms last April … 2013 or 2012? Doesn’t really matter, except that I want to say that you’ve managed to get a diagnosis very quickly. And if it was 2013, that’s amazingly fast! There are many stories here from people who went un- or mis-diagnosed for years or even decades. The sooner this disease is detected, and the faster you get on therapy, the better your chances of a good outcome. And that is one thing that you’ve achieved already!
Many of us do understand the shock and desperation that comes with a new diagnosis, and there are many good people here who will listen to, and support you. Will you promise us that if you start “thinking of just ending things”, that you will share those black thoughts with someone who can give you some support? Family, friends, online friends, or even the “crisis line” which you will find under the “Discussion” tab above? Will you promise that?
And finally, you are the same person today that you were two days ago. Except that you now know what the problem is PsA, you have someone who can help treat it, and you have a whole new group of friends to hang out with. You see, things are already looking up!
Okay Hope. Its okay to worry, be concerned and be PO'd. Those feelings don't go away. BUT they way you feel now is not the way you will always feel, nor is the way look always going to be the way you look. Treatment is successful in measure for everyone. For most (90%) they get a fairly normal life.
However you need to understand CLEARLY this is not something you did to yourself. Its not eating the wrong foods having an accident, using the wrong sun screen, eating meat or Christmas Cookies. Its not caused by stress. When they say it is stress related. it is. The same bio-mechanism that lets you register stress is the same bio-mechanism that that create the TNF's that are causing your pain, nail problems etc.
You could totally eliminate all stress in your life and would still have the problems you are having now. (Destressing however will lower your pain and by destressing I mean increasing endorphin production or at least not inhibiting it. That means eating healthy exercising (cardio) sex, fresh air etc)
There is ABSOLUTLEY nothing you could have done to change you broken immune system. Think of yourself in an airplane watching two trains on the same track speeding towards each other. You know whats going to happen but there isn't one THING you can do to stop it.
You are having a flare, the first one is the worst because you have no idea what is happening and what to do about it. Its likley not as bad as you think, when it wanes and it will, the next one will be easier and the one after that easier yet. As treatment starts to work you will adapt. Frankly you have no choice.
So your doc has started treatment. about three days into the Steroids, you will feel better. its temporary in the hope the better meds will take over. A tricyclic antidepressant will also help with pain levels and the depression induced by the disease. Read learn study but DON'T pay much attention to the horror stories. Most of them are far from objective and even further from the norm. We all have some bad periods, but in all honesty those who go from one dramatic crises to another usually have other problems as well.
There is NOT THING ONE you could have done to avoid this other than the night you were conceived to have had your father wear a condom. But that wouldn't have turned out well for you anyway. You can do something about it and it will make things better.
So you have this? I thought it affected women more? I’m wondering if I should go on SSI because either I have pain, doctor appointments, or migraines. Is anyone on it that you know of?
tntlamb said:
Okay Hope. Its okay to worry, be concerned and be PO’d. Those feelings don’t go away. BUT they way you feel now is not the way you will always feel, nor is the way look always going to be the way you look. Treatment is successful in measure for everyone. For most (90%) they get a fairly normal life.
However you need to understand CLEARLY this is not something you did to yourself. Its not eating the wrong foods having an accident, using the wrong sun screen, eating meat or Christmas Cookies. Its not caused by stress. When they say it is stress related. it is. The same bio-mechanism that lets you register stress is the same bio-mechanism that that create the TNF’s that are causing your pain, nail problems etc.
You could totally eliminate all stress in your life and would still have the problems you are having now. (Destressing however will lower your pain and by destressing I mean increasing endorphin production or at least not inhibiting it. That means eating healthy exercising (cardio) sex, fresh air etc)
There is ABSOLUTLEY nothing you could have done to change you broken immune system. Think of yourself in an airplane watching two trains on the same track speeding towards each other. You know whats going to happen but there isn’t one THING you can do to stop it.
You are having a flare, the first one is the worst because you have no idea what is happening and what to do about it. Its likley not as bad as you think, when it wanes and it will, the next one will be easier and the one after that easier yet. As treatment starts to work you will adapt. Frankly you have no choice.
So your doc has started treatment. about three days into the Steroids, you will feel better. its temporary in the hope the better meds will take over. A tricyclic antidepressant will also help with pain levels and the depression induced by the disease. Read learn study but DON’T pay much attention to the horror stories. Most of them are far from objective and even further from the norm. We all have some bad periods, but in all honesty those who go from one dramatic crises to another usually have other problems as well.
There is NOT THING ONE you could have done to avoid this other than the night you were conceived to have had your father wear a condom. But that wouldn’t have turned out well for you anyway. You can do something about it and it will make things better.
There are plenty of men on our board, but it does affect more women.
I have to second Lamb's comments; there is nothing that can be done differently to prevent this disease from appearing. You didn't make yourself sick. It is physiologically impossible, so stop blaming. It makes nothing better; makes you feel worse and gives others permission to blame you for something over which you have no control. Got to end that now before it becomes a pattern. Do not blame yourself and certainly do not allow others to blame you either; you have enough on your plate.
Lots of people take SSRIs as an additional therapy. Helps for mood, helps with neurological pain. However, If your pain is PsA related, it won't have much effect. These are notoriously hard to discontinue and require a long taper to get off of. The take-away is that if you try one, it doesn't work, and you want to stop, that might be difficult. Tricyclics are the preferred treatment for depression in PsA patients. They've also been around longer and are cheaper with fewer side effects. I can't find my studies, but I'm sure Lamb has the "why" memorized. I'm sure he'll post it for you.
Chance of qualifying for disability with your level of disease are between slim and none. As I said before over 90% of folks with PsA live a completley normal life with some concessions. Qualifying for any disability comes only after a number of attempts at treatment have failed and you have failed a work test. Should you qualify, you will get a whopping 875.00/month (average depending on how many quarters you have worked) and wait 2 years for medical coverage. You will have to pay for insurance and medical care out of pocket during that period of time unless your family income falls below $22,000.00 (less in many states) then you will qualify for medicaid. The latest version of the farm bill failed to clear the house so at this point its equally difficult to get food stamps. Your family income will have to fall below 30,000 depending on your household size.
Yes I have it. I have the spondylitis version including spinal fusion. The disease doen't play favorites but is far more debilitating in men. I need some new joints (6). I can't decide where to start so I haven't. Besides I have far too much work to do.
I rarley give requested suggestions but in your case I will. Make an appointment to a qualified mental health provider who can help you cut through all the processing of this disease. It is hard I understand. I have been there and had to give up a career I had spent 16 years preparing for (only to find a better) Start your treatment ASAP, cut the drama and get to work on dealing with it.
Thank you
tntlamb said:
Chance of qualifying for disability with your level of disease are between slim and none. As I said before over 90% of folks with PsA live a completley normal life with some concessions. Qualifying for any disability comes only after a number of attempts at treatment have failed and you have failed a work test. Should you qualify, you will get a whopping 875.00/month (average depending on how many quarters you have worked) and wait 2 years for medical coverage. You will have to pay for insurance and medical care out of pocket during that period of time unless your family income falls below $22,000.00 (less in many states) then you will qualify for medicaid. The latest version of the farm bill failed to clear the house so at this point its equally difficult to get food stamps. Your family income will have to fall below 30,000 depending on your household size.
Yes I have it. I have the spondylitis version including spinal fusion. The disease doen’t play favorites but is far more debilitating in men. I need some new joints (6). I can’t decide where to start so I haven’t. Besides I have far too much work to do.
I rarley give requested suggestions but in your case I will. Make an appointment to a qualified mental health provider who can help you cut through all the processing of this disease. It is hard I understand. I have been there and had to give up a career I had spent 16 years preparing for (only to find a better) Start your treatment ASAP, cut the drama and get to work on dealing with it.
I have been on anti-depressants since 1991, they are non-addictive. I am also in therapy.
GrumpyCat said:
There are plenty of men on our board, but it does affect more women.
I have to second Lamb’s comments; there is nothing that can be done differently to prevent this disease from appearing. You didn’t make yourself sick. It is physiologically impossible, so stop blaming. It makes nothing better; makes you feel worse and gives others permission to blame you for something over which you have no control. Got to end that now before it becomes a pattern. Do not blame yourself and certainly do not allow others to blame you either; you have enough on your plate.
Lots of people take SSRIs as an additional therapy. Helps for mood, helps with neurological pain. However, If your pain is PsA related, it won’t have much effect. These are notoriously hard to discontinue and require a long taper to get off of. The take-away is that if you try one, it doesn’t work, and you want to stop, that might be difficult. Tricyclics are the preferred treatment for depression in PsA patients. They’ve also been around longer and are cheaper with fewer side effects. I can’t find my studies, but I’m sure Lamb has the “why” memorized. I’m sure he’ll post it for you.
So what happens with work when you get flare ups? I read that in July of 2012; they passed Fibromyalgia for SSI. This is ridiculous, so when and it will because this is progressive my joints cripple up, will I qualify then? Also, I may have gotten to this early but mine has progressed to the point I can’t be off meds or there is no way I can function.
I misunderstood. I thought you were asking about SSRI (drugs) you meant SSI (disability) D'oh! I thought that was a weirdly phased question. No wonder.
I took short term disability when I was first diagnosed to help me get physically adjusted, get the meds right, figure out how to deal, etc. But, I went back to work. From what I understand, its very difficult to get disability and is a two year long process/ fight/ ball of frustration. My husband and I are stashing money in case I can't work and are trying to come up with a Plan B that allows him to work, me to stay home and us to keep a roof over our heads. If you have short term and you feel like you need it, take it. If you have a job that will work with you, even better. I can say that physically, I am not better that I was 19 months ago, but I am better able to cope with pain, know my body and it's limits, and how to make myself get through the day. I don't know if I would be doing so well had I not taken that time off.
Ah, but Hope, you haven’t got to the point that your disease is under control. You need pain meds to function now, but that is not to say that you will need them forever. With early and aggressive treatment, your chances of getting back to the “old you”, without crippled joints, are pretty good.
I think it’s too early to start thinking about what if. For now, you need to go with treatment as aggressive as your rheumie will prescribe. If you are concerned about how you are going to cope at work, you may need meds to carry you through. Other than that, until you get your disease under control, it’s the same as having a serious injury and continuing to work. Sick days, work modification, reduced hours, etc.
I am realizing that I have the worst case of brain fog today. Forgive my insanity.
No problem.
GrumpyCat said:
I am realizing that I have the worst case of brain fog today. Forgive my insanity.
SSRIs won't help pain (with the PsA.) SSRIs are highly addictive in the sense that they make you dopamine dependent. A person with a chronic pain problem has problems getting off of them and often develops Dopamine Dependent Depression (DDD) All of this messes with the bodies pain mechanism. You will find numerous threads at the Spondylitis forums and a few here about the difficulty folks have had coming off or switching SSRI's and the huge pain levels they have had to endure as result of the change. A low dose tricyclic (amitriptyline at 25mg) while not therapeutic for depression is very beneficial for pain.
I'm certainly NOT suggesting a change in meds. BUT you need to make sure all of your prescribers are on the same page and are clearly understanding of your chronic pain issues. If they operate independently of each other. it could be bad.
I don't know what you are doing in therapy, but aside from any work you are doing with your therapist, some cognitive therapy dealing with the disease has benefited many. This is separate form the family issues you mentioned...... Please stay with us we do care ande there is lots of support here.