I actually don't. What I've been on is Otezla and Colchicine and prednisone once a week. My fatigue is horrible and I'm not very functional at all, but the worst of my PSA symptoms is the flu-like symptoms of horrible nausea. I've developed so many infections and catch anything I'm exposed to anymore since being on DMARDs. Truthfully I feel like I'm in a losing battle with my life. I don't honestly know how many more years I have. Today I didn't take one dose of my Otezla and the nausea wasn't as bad but still there. I force myself to eat at least something twice a day but it's really hard. I also have ulcerative colitis and ankylosing spondylitis and the PSA is definitely working hand in hand with both of these, but mostly the ulcerative colitis. I can't have biologics because my ex-husband gave me hepatitis B in the 80s that was treated and is dormant, but biologics can reactivate it and go into liver failure. Prednisone does help, but it has bad long term side effects. Do you have fevers, nausea, etc. with yours too? I'm not really sure what to do. I feel so bad 24/7 and my quality of life really sucks because of it. Thankfully I have family that help me and I just try to be thankful for the far and few good days and have patience through the bad. Tell me about some of your symptoms. It's nice to know there are others that have similar things that I do too. You know what else is hard. I'm retired and disabled but my long term disability refuses to acknowledge I'm this sick, even though they have all my medical records and so many forms from my doctors that I am never able to work again, and Social Security have denied me twice. I am waiting for a hearing that won't be set up until after August 2016. It will be 17 months I've been waiting for a hearing. My father is supporting me so I don't end up homeless. I have no income. They don't understand the flu-like symptoms and fatigue and how you can't function because of it. All they want to look at is x-rays and what others with "arthritis" can do. It's really sad. Sorry. Don't mean to go on and on. Look forward to hearing from you.
Hi Basset Momma,
I'm happy to share my symptoms. I also feel like I'm the only one that has flu-like symptoms. Yesterday I just felt like I had the flu - achy, tired, lethargic and my body felt hot. My feet and hands hurt. I had to ice my feet to get to sleep last night - they feel like they are burning sometimes. I slept close to 12 hours and sent an e-mail to my boss telling him I would be in late today. I work for the Federal Government and I have a medical accommodation - I'm very fortunate. I woke up and took my narcolepsy med and waiting for it to kick in - it can take up to 2 hours to start working.
Have you asked your doc for something to help with the fatigue? Without the narcolepsy medicine I wouldn't be able to work.
I have flu like symptoms also.... I have also read that some people will run a low grade fever.
Frances said:
Hi Basset Momma,
I'm happy to share my symptoms. I also feel like I'm the only one that has flu-like symptoms. Yesterday I just felt like I had the flu - achy, tired, lethargic and my body felt hot. My feet and hands hurt. I had to ice my feet to get to sleep last night - they feel like they are burning sometimes. I slept close to 12 hours and sent an e-mail to my boss telling him I would be in late today. I work for the Federal Government and I have a medical accommodation - I'm very fortunate. I woke up and took my narcolepsy med and waiting for it to kick in - it can take up to 2 hours to start working.
Have you asked your doc for something to help with the fatigue? Without the narcolepsy medicine I wouldn't be able to work.
Glad to know I'm not the only one ! Thanks for sharing.
LRoland said:
I have flu like symptoms also.... I have also read that some people will run a low grade fever.
Frances said:Hi Basset Momma,
I'm happy to share my symptoms. I also feel like I'm the only one that has flu-like symptoms. Yesterday I just felt like I had the flu - achy, tired, lethargic and my body felt hot. My feet and hands hurt. I had to ice my feet to get to sleep last night - they feel like they are burning sometimes. I slept close to 12 hours and sent an e-mail to my boss telling him I would be in late today. I work for the Federal Government and I have a medical accommodation - I'm very fortunate. I woke up and took my narcolepsy med and waiting for it to kick in - it can take up to 2 hours to start working.
Have you asked your doc for something to help with the fatigue? Without the narcolepsy medicine I wouldn't be able to work.
I had flu like symptoms when first big flare hit me, low-grade fever and uncontrollable shivering plus crushing fatigue. I can't remember how long it went on for, too long for sure! My heart goes out to anyone who finds that this horrible symptom persists. I've not had anything similar since starting meds, I guess I was lucky.
I haven't actually. I always thought the medicine for the PSA is going to help that too. I see my doctor next week and I'll talk to her about it. Glad to have info from others on how they are and what they do. So sorry that you have to go through it too though. You too LRoland. I have fevers a couple of times a week with mine. Actually after not taking prednisone for four days, everything in my body stops working correctly. I can't go to the bathroom. I have congestion in my head and chest and have real problems breathing. Terrible headaches. Fever. Fatigue where I sleep most of the day. By the fourth day I've had to break down and take prednisone. My doctor wants me to limit it though to once every seven days. I've been trying to do that, but by the seventh day I'm so ill that it takes at least three days to get me back to a body that can function a little better (being able to breath well, eliminate congestion, using the bathroom). But in the last two months I've developed hives and complete body fungal infections because everything is compromised. It's not pretty. It's hard talking about all of this, but if it helps others to see what I go through and maybe feel they aren't alone, then I'm glad to share what I go through and what I have to do about it. Just hope and pray one day we have a cure. Thanks for all the info. Take care.
Hi Basset Momma,
I would definitely talk to your doc about fatigue. I wrote a briefing paper about my fatigue and how it was affecting my life and read it to my rheumy. I included % of time I couldn't socialize, go to work etc. I also brought my Mother to explain what she witnessed - that's how I got my rheumy to address my fatigue.
There's a great article posted on this board on How to Talk to Your Doctor about Fatigue - that's what I used to write my briefing paper for my rheumy. It's a great article. Let me know if you can't find it. You should read it - I really think it would help
basset momma said:
I haven't actually. I always thought the medicine for the PSA is going to help that too. I see my doctor next week and I'll talk to her about it. Glad to have info from others on how they are and what they do. So sorry that you have to go through it too though. You too LRoland. I have fevers a couple of times a week with mine. Actually after not taking prednisone for four days, everything in my body stops working correctly. I can't go to the bathroom. I have congestion in my head and chest and have real problems breathing. Terrible headaches. Fever. Fatigue where I sleep most of the day. By the fourth day I've had to break down and take prednisone. My doctor wants me to limit it though to once every seven days. I've been trying to do that, but by the seventh day I'm so ill that it takes at least three days to get me back to a body that can function a little better (being able to breath well, eliminate congestion, using the bathroom). But in the last two months I've developed hives and complete body fungal infections because everything is compromised. It's not pretty. It's hard talking about all of this, but if it helps others to see what I go through and maybe feel they aren't alone, then I'm glad to share what I go through and what I have to do about it. Just hope and pray one day we have a cure. Thanks for all the info. Take care.
It’s been about 12 weeks since my original post. It has been interesting to see all the replies. Thanks to all who have been commenting!
For myself, my work schedule has remained 5 days a week for over two months now (down from usually working 6 days), and I am doing so much better than I was before. I’m very thankful that Remicaid is so effective in treating my PsA symptoms. With the reduction of my work load by 8-10 hours each week, the majority of my treatment symptoms (fatigue & sick-feeling) are resolved. At least for now. The way each treatment “hits” my system really varies from infusion to infusion. I get a treatment every 8 weeks. Sometimes the after-effects are minimal, but sometimes they are really intense, leaving me wiped out for as much as 7-10 days after the treatment.
Thanks again to all who are sharing!
Paul,
I'm glad you are feeling much better with reduced work hours - that's a win in my book ! When I had Remicade infusions, I would be wiped out the day after the infusion.
Paul said:
It's been about 12 weeks since my original post. It has been interesting to see all the replies. Thanks to all who have been commenting!
For myself, my work schedule has remained 5 days a week for over two months now (down from usually working 6 days), and I am doing so much better than I was before. I'm very thankful that Remicaid is so effective in treating my PsA symptoms. With the reduction of my work load by 8-10 hours each week, the majority of my treatment symptoms (fatigue & sick-feeling) are resolved. At least for now. The way each treatment "hits" my system really varies from infusion to infusion. I get a treatment every 8 weeks. Sometimes the after-effects are minimal, but sometimes they are really intense, leaving me wiped out for as much as 7-10 days after the treatment.
Thanks again to all who are sharing!
That’s great news Paul! I hope you continue on this perfect balance. I also wanted to thank you for starting such a wonderful conversation, what a response! You have had people who rarely “socialize” here post and such an eclectic variety of how this disease can effect careers, pocket books and moral. Thank you!
Back again, I also expect to see a continued amount of new responses from new members as they come across this post. It will be great to keep this conversation going and post changes from prior posts as well. For me I get empowered by those who can continue on despite adversities encountered and feel like when I am going downhill on some days that well I’m not alone or weak this disease is hard.
Wow... you must be able to hear the voices in my head! Well stated!
Nic.Pat said:
" I'm faking being sick? You must be confused because what I am actually doing is faking being well. I don't always talk about all my symptoms. I don't always admit when I'm not feeling well and I often put on a happy face because it's just easier that way.
Any idiot can fake being sick. It takes real talent to fake being just fine when you feel like hell"
At least here, we can share what is really going on and be understood and believed.
I do. Most of my time on this site through my phone which only allows a out 3 responses at a time, so I miss alot!! I could never agree more!!
I also agree !!!!
Rachael said:
Back again, I also expect to see a continued amount of new responses from new members as they come across this post. It will be great to keep this conversation going and post changes from prior posts as well. For me I get empowered by those who can continue on despite adversities encountered and feel like when I am going downhill on some days that well I'm not alone or weak this disease is hard.
Thanks again to all who have replied here. Since my hours have changed to about 40-50 per week, I have been doing much better. Still tired a lot but not quite as bad as it was before. It really was helpful to hear from others what “normal” work schedules look like with PSA.
I am now having to make another change that could get interesting. Up until now, I have been getting Remicade through a grant and doing all my other medical bills out of pocket. Because our legislators have decided that not having health insurance should be “against the law” and I am now paying increasing penalties every year for being uninsured, I will now have to get medical insurance … and go off Remicade, because WITH insurance it will now be too expensive to afford. Which means the Affordable Healthcare Act is less affordable and reduces my access to the health care I need. Hmm.
Now that I have adequately complained, and inserted a political jab at the AHA …
I guess I need to figure out what to do next.
Remicade has done such a good job with my PS and PSA symptoms that I am not looking forward to making the change. Last time I went off Remicade, it was rough … very debilitating until I could get back on it again.
Considering Otezla. But not positive yet.
There’s my update. More power to you all as you continue on with PSA. 
I actually had to stop working 2-1/2 years ago because I cannot function physically at all with this. Can't sit for long, can't stand for long, can't use my arms and hands for long, and then there are the cognitive issues and severe debilitating fatigue. Course I have rheumatoid arthritis, PsA, ankylosing spondylitis, ulcerative colitis connected to all of these, scoliosis, and now I have abnormal lung nodules connected to the rheumatoid and I'm on O2 24/7. So I am overjoyed when I hear others can work with their PsA, even if it's just a little. I so miss working. I was a workaholic all of my life and its been crushing to have it taken away. But I am blessed and thankful for each and every day and don't sit around and feel sorry for myself. I am just in awe when I can watch others have success. Bless you and I hope you continue to be able to do as much as you can.
I house site/ dog sit when called. Busier in the summer and holidays.
I just want to find something that can bring in "spending" money for me so I don't always have to ask for it. My husband works hard and carries the insurance card so I just want to contribute somehow. I have been thinking about going back o working with children in a mothers day out setting but worried about getting sick. I had such a wonderful winter, compared to the others.
Is any one here working with young children?
1. How many hours do you work weekly for an employer?
I work PRN (as needed ) 20-35 hours a week.
2. How has PsA changed your overall ability to work?
Part time work, for me, feels like overtime! And I am very lucky that my job is not physically taxing, most of the time. I can usually sit and I work a short day, 7 hours. If it weren't for this job, I would probably filing for disability. There aren't many other jobs I could physically handle.
I was teaching until about 6 weeks after diagnosis, but was on temporary contracts. By the time I got the offer of another I was in a position where I had to turn it down because I didn't feel I was reliable enough to take it on - but I have bipolar as well, and other things were going on. I am now in a position where I would like to return to work part-time but am stuck in a ridiculous loop-hole with regards to benefits that it would be difficult to do unless I had a permanent or longer-term contract. I still keep busy at home, though, writing research papers and working on books. I don't get paid, but it keeps my foot in the door, so to speak, and ensures my CV hasn't got a gaping hole for a year or two while things sort themselves out. Luckily, when I do get the chance to return to work, it will hopefully be back at a university - where working hours and what kind of work you do is quite flexible and you can switch from one task to another, work partly from home etc.
1. I work full time.
2. I was diagnosed couple years ago,the year after I graduated from college. My goal of going to graduate school along with being full time employment is looking difficult. Nonetheless, I have decided to start this year. Hopefully, I will be able to handle it.
I quit my last job after a year because it was too stressful for me. I was flaring every month. Enbrel+methotrexate has helped a lot. At this point, I have my fingers crossed and hoping for a remission.