Hey gang! It's been a few months.....was on FMLA.....finally quit because I felt so guilty leaving them without help and new I was unable to go back FT.....so that means losing great insurance and having to find new insurance. AND of course I'm having a flare up of the Psoriasis and PSA :(
Have been on Humira and got off track a bit due to crazy life right now....and now things are coming back with a vengence! Could it be that I just need to do 2 shots again like I did at the beginning or that it's just not enough any more? I know I'll have to go back to my Derm to see what they think......
Wish my Rheumy was more......understanding?.....no, would understand what I'm trying to relate. He keeps saying my PSA is mild and that the pain in my hands is Osteoarthritis but my shoulder is definately PSA but doesn't really give me any options.
Tired....frustrated....want to try for disability because I can no longer do what I've done for most of my life......working as a Certified Medical Asst.....office nursing....nor can I type all day, which is what I originally transferred to so I wasn't on my arthritic feet all day!
So grateful I have a place to vent.....any & all suggestions are much appreciated!
Sunshine! Nice to hear from you. I just wish that you were doing a bit better. Vent away … that’s what we are here for.
I hear you about your rheumatologist. A story similar to mine. I just wonder how mild your PsA really is: it’s bad enough that you’re thinking about disability. Something doesn’t compute. Had you considered going to another rheumatologist for a second opinion?
Hi Seenie! I have thought about a 2nd opinion but I have moved to New Braunfels and there is only 1 Rheumy here and she's booked into the Spring! Just haven't pursued any in San Antonio or Austin. "lightbulb"! I just remembered my brother is seeing a Rheumy in Austin he really likes.....may try that! :)
I would like someone to explain to me how to treat both the Osteo and PSA at the same time since I can't take steroids if I'm on Humira! The BIGGEST issue has been the fatigue, which I can't seem to get across to the Rheumy!
Many thanks for the kindness and encouragement....and helping me to think a bit more clearly! :)
I don't know what mild means in the context of PsA unless it's the patient themselves saying that about their symptoms. And even then the disease can be doing some damage, I believe. Sometimes 'mild' when spoken by a rheumy seems to mean 'shut up and stop worrying'. The terms 'active disease' or conversely 'under control' strike me as more useful.
I've had 'mild' PsA according to one rheumy. The same one who wrote in his follow-up letter that I didn't understand the difference between osteoarthritis and inflammatory arthritis and was over-anxious. Not much had changed by the time I got to see a new rheumy but he thought my disease was very active. Apart from that the main difference between the two consultants is that the old one couldn't really be bothered to treat my PsA and the current one is pulling out all the stops. I think if you can get to see a rheumy who takes a very searching, proactive approach you'll feel more hopeful straight away.
Sorry you're having a frustrating and uncertain time of it. I think if I were you I'd want to be 100% certain that the pain in my hands was due to OA and only OA because if it isn't and more Humira or a different biologic could yet help, then your work options are potentially much improved.
Nice to "see" you, Sunshine! Sorry you're having such a rough go of it. I hope you're able to get your doctors on board to take you seriously and help you figure out something that works for you.
It drives me crazy when doctors try to dictate treatment based on their own view of the severity of the patient's disease. My rheumy has told me that I don't act like I have PsA at all, and he really needs me to describe the severity of my pain so he can get a good idea of how bad things are. When I said to him recently, "We need to talk," his response was, "It's that bad?" He ordered x-rays and a nerve conduction study so I can jump through those hoops to get the MRI I really need. I'm so thankful he's so responsive, concerned, and takes me seriously.
Thanks Nym! Currently w/o insurance....working on that first....want to get started on the disability paperwork but don't feel I have the medical records to back me up.....one day at a time.
Glad you finally got your Rheumy on board! Hope they can get you some relief soon! :)
Doesn’t the term “mild” drive you crazy at times…I’ve learnt to ignore that and just plug away at getting what I need. Both my PsA and Fibro have been described as mild by the rheumatologist but as these “mild” conditions have kept me off work for nearly a year in the last 3 years, it doesn’t have a “mild” influence on my life, so I ignore the term now and get on with learning more about them and my own bodies response to them and treatment and therapies that have a good effect on my state.
Hope you’re in a better place soon x
YES! I crashed again yesterday....got back from the grocery store and was exhausted and hurting so went to lay down for a "few minutes".....3 hours later! Was feeling better but still tired and in bed by 10p. First time it's been this bad since I've been on the Humira.....hope it's not losing it's effectiveness.... :(
Louise Hoy said:
Doesn't the term "mild" drive you crazy at times....I've learnt to ignore that and just plug away at getting what I need. Both my PsA and Fibro have been described as mild by the rheumatologist but as these "mild" conditions have kept me off work for nearly a year in the last 3 years, it doesn't have a "mild" influence on my life, so I ignore the term now and get on with learning more about them and my own bodies response to them and treatment and therapies that have a good effect on my state. Hope you're in a better place soon x
Enbrel has made me so energetic I can do a great deal more on way less sleep and not feel exhausted. The only time I was exhausted in the past almost 3.5 months on Enbrel was 3 days ago on Monday…only because I worked my butt off all day Sunday (housework) and did the same on Monday, except after spending the morning doing spring cleaning projects (oh well, so I’m behind a couple seasons) I proceeded to mow our entire acre. I was fine on the rider, but push mowing I became so exhausted i could barely walk. So, my sympathetic husband took me out for dinner…and I went to bed early (10:30 is early for me). But, just wanted to mention how enbrel has completely cured my extreme fatigue.
sunshine said:
YES! I crashed again yesterday…got back from the grocery store and was exhausted and hurting so went to lay down for a “few minutes”…3 hours later! Was feeling better but still tired and in bed by 10p. First time it’s been this bad since I’ve been on the Humira…hope it’s not losing it’s effectiveness…
Louise Hoy said:
Doesn’t the term “mild” drive you crazy at times…I’ve learnt to ignore that and just plug away at getting what I need. Both my PsA and Fibro have been described as mild by the rheumatologist but as these “mild” conditions have kept me off work for nearly a year in the last 3 years, it doesn’t have a “mild” influence on my life, so I ignore the term now and get on with learning more about them and my own bodies response to them and treatment and therapies that have a good effect on my state. Hope you’re in a better place soon x
Unfortunately fatigue is always my main issue. Both PsA and Fibro cause fatigue so now my PsA is apparently in remission and the fatigue has caused me to cut my hours at work by 2 hours a day, I’m blaming the fibro.
But fingers crossed, the exercising I do, eating a good diet, reducing my hours and having a good sleep routine will keep me at a good enough level to do what I can, and let my hair down now and again
It sounds like everything is going on at once! I’m a little worried that you may have stopped your job a little early? If your doc is treating you like you’ve got “mild” PsA, then it’s very unlikely that you’d win an SSI claim. Maybe you aren’t cut out to do bedside CNA work (who is? You guys are the “backs” for the RNs and LPNs!), but maybe something lighter on you physically will do. When we find that our job becomes to demanding, it’s time to look for something else that’ll keep us employed, but not hurting. Transferring to a desk job where you typed might have worked. There’s all sorts of dictation software now that can be really helpful. Some employers will provide it, some won’t, but it’s worth the $100 to keep working. I bought it for my job, which is almost all typing. If you can at least get your doc to write FMLA papers for you, and a note stating what your physical limitations are, you can get accommodations at any job. It helps a lot to have these documents in place. I know you already left your job, but if you’re like most of the rest of us, it’s hard to afford health insurance without a job. If you decide to hunt for a new job, knowing these tips might be helpful. Just make sure it’s a job that you can do for a year without FMLA days. You need to be employed a year before you’re eligible. I mention all of this because it’s hard to live on the amount of money you’ll get from SSI, it takes a really long time to win benefits, and your doc may not support you. All of that adds up to needing a “plan B”.
Humira…did you stop for a time and then restart? If so, how many doses have you had so far? That may have something to do with why you feel so cruddy. Sometimes, it takes a while for the med to build back up in your body and start working again then again, sometimes after stopping and restarting, it doesn’t work as well, and we have to switch meds. Give it a little time before you give up, say, a month or three? Maybe by then you’ll be ready to see the new rheum that your brother likes so well.
How much medication do you have left? Will you have to stop again when you run out, or do you have a plan to pay for it without insurance? Maybe you’ll be able to get an insurance plan soon to cover the cost, but if not get in touch with the Humira patient assistance program. They may be able to help you with the cost until you have insurance again. This way you won’t need to stop it again.
I really hope things get better for you very soon. Managing everything can be a struggle when you’ve got PsA, but it can get better. Take care, and keep us posted. Don’t be such a stranger!
Thanks for your input! I am actually a CMA - Certified Medical Assistant....work in doctors offices doing blood draws, injections, EKGs, labwork, assist with patient care. My hands are a huge issue...I can no longer hold my hands in a position to draw blood...they're no longer able to take manual BPs...some days even getting an electric cuff off and on is painful. I have been working as a Client Care Specialist until recently....basically customer service with lots of typing that is done while on the call. I do not have a college degree, only my vocational school and some college. The things I am doing for my husband require computer work and paperwork....both of which some days I can do and some days I just can't. The biggest challenge is the fatigue. This week I slept most of 2 days and napped the rest! This is the worst it has been in quite a while, but then I am under a great deal of stress.....
Covered by COBRA until end of November ....all meds are free and deductible has been met so trying to hang on to this as long as I can.....then will find other ins.
Do you think you’re having a flare, or are you thinking you may be having the pain because of cumulative damage in your hands? If your flare could be controlled, there’s hope. Maybe a burst of steroids to get you over the hump until the Humira is full force again?
I just got lucky with my job. My resume was posted online, and they hired me. The wonders never cease, lol! I work out of my home, with a few meetings a week out of my office. It’s ideal, but even so there are days that I struggle, but I do get to schedule in an afternoon nap every day. It’s hard to find a job like this, that meets all of my needs. I can really sympathize with you here. It does seem like maybe your PsA could be better managed. Then maybe you would have more options, plus you’d feel better!
I think the overall is a bad flare....but the hands pain never goes away....some days are just better than others. So glad you found a job that works for you! :)
GrumpyCat said:
Do you think you're having a flare, or are you thinking you may be having the pain because of cumulative damage in your hands? If your flare could be controlled, there's hope. Maybe a burst of steroids to get you over the hump until the Humira is full force again?
I just got lucky with my job. My resume was posted online, and they hired me. The wonders never cease, lol! I work out of my home, with a few meetings a week out of my office. It's ideal, but even so there are days that I struggle, but I do get to schedule in an afternoon nap every day. It's hard to find a job like this, that meets all of my needs. I can really sympathize with you here. It does seem like maybe your PsA could be better managed. Then maybe you would have more options, plus you'd feel better!
