Hi everyone. I'm a 39 old year dealing with Psa. Wondering if i'm going to be able to continue to work for much longer?
Hi Kara! Whether you are able to continue to work may be dependent on how well (and fast) you respond to meds. If you are treated aggressively, you may well be able to continue working with minimal interruption. It’s really an individual thing. For your sake, I hope that you do well.
just started humira a month ago, every 2 weeks. kind of scared of the side effects tho
Welcome here, Kara! We're a pretty friendly bunch of people, and we love it when people ask questions. As for working, chances are good that you can continue. You'll have to find the treatment that works for you first, though. I see from your profile that you're taking Humira. How long have you been on it?
Are you having side effects, Kara? Tell us about them.
What frightens you about Humira?
I've been sick twice since taking it and i never get sick. I've been told not to be around large groups of people. How has Humira affected anyone else?
The warnings do say that you might be more vulnerable to infections while you are taking Humira. Personally, I'm sick no more often than I ever was, and I know that we have people here who work with large numbers of people (like nurses and teachers) and they have found the same. But if you are finding that you are sick frequently, Kara, make sure that you tell your rheumatologist.
A lot of us started paying extra attention to eating a healthy, balanced diet when we were diagnosed with PsA. While diet won't cure this disease (there are no cures) every little kindness that you can give your body counts. A healthy diet. Regular exercise. Fresh air. Laughter. Drinking lots of water. It all adds up to feeling just a bit better.
Finally, and this is not good news, it takes time for any of our therapies to work. Generally, figure on three months for the first solid signs of improvement, and that may be just the start. Meanwhile, you're in what we call "The Gap" (that's a link, click on it) and you just need to be a patient patient!
Again, a warm welcome to you, Grace80. I hope that you find this a good place for support and information.
Hi Kara, this is something that worries most of us when we start taking either/both traditional DMARDS or a biologic. Fact is that on the bio's they are so targeted that most of us have no issues with increased susceptibility to illness at all.
If you think about the ways that illness can be passed from one person to the next - direct person to person contact, airborne, fomites (contact with infection on inanimate objects) and ingestion - most of us can reduce our risk by making simple and sensible changes to how we operate. For example, avoiding friends and family members who are sick, using a protective cold and flu defense nasal spray before going out in public places, handwashing/gels and taking care not to touch your face or food with unwashed hands and avoiding high risk foods (unpasturised dairy, for example) if you find your stomach is vulnerable. It is all common sense stuff.
For me the only issue with Humira is that it didn't work. I've now been on my second biologic two years and it suits me very well.
A month is no time at all. Humira can be a slow burner for some people so you may not notice much happening for many weeks but then once the improvements start they can carry on building for some time. Certainly so long as your bloods are being regularly monitored try to see the trial period through, don't blow it off too soon.
Something else which has just come to mind is that stress lowers the immune system so I wonder how much of a part this plays when we get ill shortly after starting a new medication ie. we're worrried about our diagnosis, prognosis, potential side effects of the treatments and bingo, along comes an adventitious infection. Just a thought!
As far as work is concerned, early aggressive treatment (ie. a biologic) which works for you should keep you able to work so long as irreparable damage hasn't already been done. If you can work now it's probably unlikely you're in that category. Sometimes you may need adjustments to your work environment or hours, depending what it is you do, but it really, truly incapacitates very few patients (less than 10%, I believe is the number).
Hi Kara and Welcome !
Be extra kind to yourself whilst your body adjusts to everything.Good advice from everyone else here,I hope the medication works for you.
I've been dealing with the pain and swelling for years. going from one doctor to another. it wasn't until about a year ago that i found a doctor who would listen and sent me to a rheumatologist, so i don't know the damage that is already there. It's in almost every joint. Should i go get xrays done?
Hi, Kara and welcome! I am 41 and deal with or have dealt all the same worries you mentioned. I worry that I will have to quit working regularly, except on the good days, only to find myself worrying if the next day will bring me back down. I have a difficult, industrial job that I love and my entire family counts on my every paycheck. The attendance policy is stringent and I am not allowed to reduce hours. Humira has helped incredibly but does not take away all my pain by any means everyday has ups and downs. I can say that without it I would have been done by now for sure. Everyone is different and there are several other bios you can try to find a good fit (I went through enbrel with no response).
Xrays are common with your worst locations and I find it odd your rheumy or primary hasn’t asked for any prior to starting a bio. Damage takes time but can also depend on the severity the disease plays. I would be more concerned at this point on getting a good treatment regimen and PSA under control. You will find several areas respond well and swelling reduce then you will have a better idea of where to go from there.
As far as getting sick I noticed no changes, like Seenie said. With a strict attendance policy, school age children, and lots of exposure I just try to be more vigilant washing hands mainly. So far that is working for me. I was so worried at first but my old habits came back and I have only had one cold this year.
Nothing about this is easy, we missed that boat, but it is doable. Right now try your best to focus on getting used to life with it and accepting all the help you can get. Good luck hope things look up soon.
Hi Kara, I'm glad you finally found a good rheumatologist and are on the right track to better health--and you can expect a lot of good information and support here on this website, too. It's so unfortunate there are many people like you whose diagnosis comes only after years and years of seeking relief from doctors who just don't seem to have a clue about inflammatory arthritis!
Are you having side effects from Humira? Hopefully, if you are they fizzle out fast. I had a small SE from Enbrel--a 2" pink blotch at my injection site, which stopped happening after about 2 months of injections. I'm hoping the sickness you've had since starting Humira was mild--I haven't heard of too many problems with SEs, but you probably can't completely rule them out.
I'm 62 and still working 3 days a week and babysitting a grandchild 2 days. Before I started Enbrel, I felt like I couldn't take the pain of PsA anymore and it was getting depressing feeling sick all the time. I don't know how long I would have been able to continue like that. Now I'm planning to continue working for many more years and hoping Enbrel keeps working for me.
Good luck with Humira! I hope there are years and years of better health ahead for you!
When I was diagnosed my rheumatologist told me I would most likely be disabled in two years. I worked 30 years after that before I had to quit and go on disability. A lot of it depends on the type of work you do. I was an ICU Nurse so eventually had to stop as I could no longer lift patients or get on my knees for CPR training, etc. I went back to Uni, got in to Human Resources and worked in a mostly sedentary job for the next 25 years. So don't give up and who knows what lies ahead. Just adjust for it and go for it !
What kind of work do you do, Kara?
I'm a criminal defense attorney. I inject Humira every 10 days, with the option of going to injecting every seven. Maybe twice a year, I do a Medrol dosepak.
I worked for the six years before my diagnosis and have continued working an average of 45-50 hours a week (sometimes more, like the next two months) since diagnosis in 2012. I won't sugarcoat it--it's not easy. I find I have to take more breaks, even during the day. There are times when I've worked a lot where I'm wiped out and it takes a longer time to recover and that usually means days out of the office and I'm sleeping.
I hope to work 3-5 more years. We'll see.
i do factory work, which is physical. I'm not the type of person who can sit at a desk all day. I've got to be up and moving. It seems the older i get the harder it is on my body and longer healing time. Last year I wasn't able to work for 4 months straight. It took a huge toll on me. My knees would swell so bad that I couldn't get off the couch. I couldn't take care of my family. Now that I'm finally back to work, loving the job and the pay, I'm scared that i will lose it due to my flare ups. I'm at a lose at this time. Cortisone shots aren't even worth my time anymore.
Rachael works in a factory too, and lots of people here have physical jobs like nursing and teaching. But I can imagine how hard it must be when you are in a flare.
Has your rheumatologist told you what his treatment plan is for you? What he’s planning to try to get your disease under control? I think you need to tell him that your livelihood is on the line, and if it were me, I’d be asking for the most aggressive treatment that he is prepared to give.
Hang in there, Kara!
Yes, yes Seenie! The number one way I was able to get aggressive answers and treatment was to lay it all out to my doctors. If I can’t work I loose my job, if I loose my job I gave no health insurance, if I loose my job my family looses their home. They got it and all my paperwork has “bread winner” all over it. Though I hate the term it gets attention. I know all the pressure of factory work very well, 20 yrs and going still, many other jobs are just as demanding but I think our employers tend to look at numbers less than people. Regardless of skill they seem to always find us replaceable. That makes our situation stressful but keep on as best you can and with treatment it should get easier. I know its hard to believe but unless you have someone you can fall on financially there are few options. Feel free to message me if you like. Sounds like we have a lot in common.
This annoys me, that you had to lay it on the line. What difference does it make, whether you are the so-called breadwinner or not? Doesn't every person that they see have a right to be in the best health that they can possibly be? Don't we all have reasons why we want to feel well, and be active besides "breadwinning"? Sheeesssshhhhh But I'm afraid that you're right, Rachael, it makes a difference. It shouldn't but it does.
I can relate to the kind of job that you, Rachael, and Kara do. I was a teacher, but for a few years before my retirement, I was in a special program where we had high school students working in a large factory for half days, and doing academic work the rest of the time. I supervised them "downstairs" as well as "upstairs". So I know what it's like to trudge around in safety boots, through the factory obstacle course, up and down ladder steps (we had some "eagle's nest" offices). My feet hurt badly and I was so so tired. I didn't know, at that point, that I had PsA. I thought I was just getting old, so I retired. Five years, two knee replacements, and a lot of misery later, I got a diagnosis. But I will never forget trying to survive in the factory feeling the way I did.
Rachael said:
Yes, yes Seenie! The number one way I was able to get aggressive answers and treatment was to lay it all out to my doctors. If I can't work I loose my job, if I loose my job I gave no health insurance, if I loose my job my family looses their home. They got it and all my paperwork has "bread winner" all over it. Though I hate the term it gets attention. I know all the pressure of factory work very well, 20 yrs and going still, many other jobs are just as demanding but I think our employers tend to look at numbers less than people. Regardless of skill they seem to always find us replaceable. That makes our situation stressful but keep on as best you can and with treatment it should get easier. I know its hard to believe but unless you have someone you can fall on financially there are few options. Feel free to message me if you like. Sounds like we have a lot in common.
I was told this year that i need a knee replacement, but with me only being 39 they didn't want to do it yet. I've got so many mixed emotions at this point that it's driving me crazy. My knee started swelling 8 years ago, had x-rays done then and still the doctor just brushed it off. Now every joint in my body hurts. Some more than others, but if doctors would have pain more attention the me as a patient than getting through his day, maybe i wouldn't be going through this now. I'm pissed and in pain everyday. If it's this med will work, then we'll try this. I don't have time for that. I have a kid to raise, a mortgage and all the rest of my bills. Now i have to go to work everyday, in pain and hope that one day that pain "might" go away. Why was it never brought to my attention that the possibility was there when my doctors at a young age knew that i had psoriasis? It runs in my family and every time i went to a new doctor i informed them that i had it as well as family members. I know now that I have to have my knee replaced, but how much other damage is already done. I don't have a lot of money, I'm on medicaid. At least I have that and thank God i do. I just don't always get the best of doctors though. I'm just another number. Just another one of their guinea pigs that they can try and push their meds off on so they can get a big fat check. Sorry for all my ranting, but it's been really hard lately and just had to get some of it off my chest. thank you for listening, if you still are. lol