Reading through some of the recent discussions I’m sitting here wondering how well people on biologics really feel–how good can we expect to feel?
I had never connected my dry mouth and vision problems with PsA, but apparently they are? Maybe my annoying ringing ears are too? My feet hurt all the time, and really, I never feel “great”, or even “good”. Do some people my age feel good most of the time? I think they do! I never do, and today it’s really getting old! Every day I fight through the day, struggling to ignore my PsA annoyances. I got new glasses about a month ago and they worked fine up until a couple days ago! What’s wrong with my eyes? Today I’m so sick of feeling crappy and having all these “little” symptoms that, added together, are not little. It makes my heart hurt. And that’s another thing–was my coronary blockage somehow connected to this stupid PsA? Yesterday my mom said, my, your fingers look swollen. What!!! I looked at her fingers and in-between her big OA joints her fingers were skinny and boney. I guess mine do look swollen compared to hers. But, my fingers don’t ache and throb like they did before I started Enbrel. Just like I don’t have tendonitis all over the place like I used to. But I’m sick of the pain and annoyances that remain (what else do you call ear ringing, dry mouth, blurred vision, oh and brain fog but annoyances?)–just had to cry on everybody’s shoulder tonight–obviously I’m having a bad night. I need to give my eyes a break now–it feels like they’re full of rocks.
Tomorrow I’ll be embarrassed I put up this discussion, but right now I don’t care…
Tell me, those of you on biologics who feel they’re working well–do you, too, still have nagging pain and symptoms that are almost too much to bear a lot of the time? Are you putting on a happy face but fighting a losing battle and not so happy inside?
This is crazy–I know tomorrow will be better!
Reading through some of the recent discussions I’m sitting here wondering how well people on biologics really feel–how good can we expect to feel?
I’d like to know 'this too! As I am starting Humira soon.
I know my fatigue is not normal for a 49 year old that’s for sure.
I know that most don’t have to get blood tests monthly
I know that they can go out 2 days or nights in a row and not spend the next few in bed!
Normal people don’t spend hours thinking about a disease or it’s limitations.
Don’t feel embarrassed about sharing your feelings here. I think we all lose it sometimes and need to vent. I’ve certainly been low lately myself with my eyes. Other symptoms get me down too - while they come and go it seems there’s always “something”! The sore throat that was so bad I couldn’t swallow - gone now. Lumps on my knee, swollen tendons blahhhhh
Giant internet hugs to you
I want to know the numbers as well… I did see an article about psoriasis and that in 1/5th of the cases they didn’t get it under control… But that study was done on people who were taking drugs for at least 3 months… And that means some where only on the first try doesn’t it?
And it didn’t specify what under control meant…
Don’t feel embarrassed to post this! It’s how you feel and that’s what where here for… To share how we really feel so others can see there not alone in feeling like this… Before I got here I felt like I was going crazy… Now I know it’s not crazy to feel like this for us…
I really hope today is a better day then yesterday…
Try looking at text when you’re seeing blurry and closing one eye at a time… for me I see double with both eyes separately… the eye doctor said it was part of my migraines… glasses won’t correct that…
If your eyes are dry it can impact your vision. Are you doing anything about your eyes? You may want to schedule a visit to the eye doctor.
Thanks, Koala, Cynthia and Stoney…your suggestions are appreciated.
I started using Visine eye drops. I didn’t mention that my left eye got really weird about a year ago and it burns and droops. This also happened to my boss at work and she doesn’t have PsA. Her lid droops worse than mine! I can actually conscientiously open my left eye more so it doesn’t look too weird.
Stoney, I mentioned it to my eye doc last June during my eye exam and he said there was nothing wrong with my eye. But, he’s the same doc who told me I was perfectly healthy and, because the arteries in my eyes were clear that meant I had healthy circulation because the eyes are a window to the rest of your body! Needless to say, I almost didn’t go to the ER in August when I had the weird chest pain because he had told me in June my arteries were clear. I told my cardiologist that when I got my stent and he said just because your arteries in your eyes are clear doesn’t mean other arteries can’t have blockages. He said it’s not necessarily in all the arteries. So, I won’t go to that eye doc anymore…he’s not an ophthalmologist anyway. I’ll have my yearly routine eye exam in June with an ophthalmologist who knows what she’s talking about! Until then, I’ll just use the Visine or I’ll take suggestions if you have something that works well.
Yesterday after my “episode” above, I took some Tylenol. I forget sometimes that pills make me feel a little better–unfortunately, I can’t take anti-inflammatories because I’m on low-dose aspirin and an antiplatelet drug.
I also think sometimes I’m fighting off a virus and my body is still pretty good at that even though I’m on Enbrel. Trouble is, I’ll feel half crappy for a day or so, but not get all the way sick, so it just exaggerates my PsA symptoms!
@Grandma_J - the Visine won’t do anything to deal with the dry eyes and may make things worse over time. I would encourage you to try out preservative free eye drops, available at any drugstore. There are lots of different brands to choose from, but I’m saying they should be preservative free because the preservatives can cause irritation.
If you’re not having a dilate eye exam done once a year by an ophthamologist (this goes for everyone) you should be. Autoimmune diseases can impact the eyes as well, even if it’s subtle.
I definitely feel you on the never feeling great or even good, @Grandma_J. I haven’t had a day in 6 plus months that I’ve felt well completely - it’s either been the pain, or the brain fog, a combination of the two, blurry vision, feeling fluish without any of the actual symptoms, generally exhausted, etc, etc, etc. When it first came on, there were periods when I felt good, great even - those days appear to be long gone.
Even with meds helping (which I know they are, they have to be, they’re just not doing it enough for my tastes), it’s easy to feel like they’re really not, because I never feel quite “right,” even at best, I feel “off.”
So, yeah, I do my best to put on that happy face while I’m at work so as not to just depress the heck out of all my teammates. But then I get on here, or get home, and I get to be myself, even if that true version of me just feels like things aren’t going to get better. Sometimes sympathy helps, other times, I just need to figure out the best way to kick myself out of it.
Don’t be embarrassed about putting this up. We all need to vent sometimes, and heck, you’re not going to find a better group to vent to than people who are going through the same stuff since we all get it and have all been there, as you well know.
Thanks, Stoney, I will buy the preservative free eye drops! I didn’t know there was such a thing…also, yeah, I think my “vitreous detachment” has something to do with PsA, whether it was caused by the disease itself or because of meds I took for symptoms of the disease–I often wonder if Nortriptyline or Nexium (both meds I was taking when my vitreous detachment happened) had something to do with it.
You are right on, there, Dilorenzo! That sums it up perfectly! And, I’m not complaining about Enbrel–I think it’s doing its job at least 75%, but the pain from irreparable damage sustained before Enbrel, or from the 25% still active PsA is something we have to deal with, and I’m sure it’s always going to be an uphill battle.
I do use this forum for pretty much all of my “venting” and discussing the disease because I’ve found that nobody is interested and/or cares–I have two nurse daughters who, either because they don’t want to deal with me as a wimpy mom or because they see so much worse stuff at their jobs, seem uninterested in my health problems (except, of course, the real serious stuff like my coronary blockage–then all of them spent the day at the hospital before, during and after my ordeal, so they DO care about me–I think it’s just hard to understand the situation of someone with an autoimmune disease where the pain and other symptoms aren’t life-threatening). And, then there’s my husband who’s in horrible shape and it’s very obvious…he never acknowledges I have anything wrong with me because he’s always consumed by his own health problems–no sense even trying to explain to him what I’m going through.
And that they can’t do something about… They’re nurses they’re supposed to be able to help people get better… Must be frustrating they can’t help you… And then it’s different to help your mom over strangers and even other people you love… I’m not sure how to explain this but I see it with everyone who’s mom is sick or just getting old…
I’m sorry about your husband… Must be frustrating… well I know it’s frustrating… We both have the flu right now… his is worse… My caughing hurts because of the inflammation at my sternum… but his hurts as well… his wrist is inflamed… at least I can use both hands to do things he can’t use his whole hand… it’s not a f’ing competition!
What you husband has sounds worse then the flu though… I hope it’s nothing too serious? I’m sorry if you posted it somewhere and I’m supposed to know…
@Grandma_J this is the ever-present question. How well do you have to be to be well? It’s been a question I’ve held in my mind for a long while. I’ve stopped comparing now to pre-PsA. I try to think about how well I’m doing today. Can I do the things I need to to get to work, be productive, still have energy to make dinner, etc.
For me, rating my daily wellness is counterproductive because I look at the empty part of the glass. Focusing on what I have been able to do in a day is what gets me through it. Days when I can do more, exercise even, keep my spirits up for weeks–even through times when I can’t exercise–because I know it’s possible.
Maybe I’ve lowered my expectations? I look at my life as changed and not in terms of well/sick. That’s what gets me through.
I’ve probably posted about him in the past…he has worse health problems than me, except he doesn’t have PsA, but possibly has RA–he’s on plaquenil for that. He is morbidly obese, so that adds to his health problems tremendously…his kidney doctor told him last week that if he doesn’t lose weight he’ll have to go to a “fat farm” – whatever that is…
We both started using the exercise bike this week and I think he’s determined to lose some weight and try to get back in better shape–I will keep encouraging him. But, he ignores me–he can see that I have a very hard time walking when I get up and I can’t lift anything, but he totally ignores that. Seems everyone wants me to be the Wonder Woman I was for so many years (and wouldn’t I love that myself???)!
It’s so much easier if you are wonder woman… especially for you… lol…
Big hug! I’m so sorry your in that situation…
You could go on strike … I’m not joking. You could just stop doing things for him, out of ‘tough love’ rather than out of spite. But I know how hard it is to suddenly start behaving differently in your own home where patterns and expectations are so established.
yes…I’m sick…and no one is listening…
my hands are swollen and ache all day and night…persistent soreness in my feet…sharp pain in my elbows just moving my arms…pitted and dented thumb nails…
I could go on but it doesn’t matter…I’ve been to 5 rheumatologists…4 dermatologists…20k worth of tests…and since I’m seronegitive, the most I can get out of a doctor is plaquenil and methotrexate that minimally helps…
I’m sick of being “DISMISSED”…
every other TV ad is a biologic…a constant reminder that potential relief is in reach… but without clinical evidence of PsA…I suffer in silence
I tried prednisone …and HATE IT !..it won’t let me sleep…it makes me crazy…I could cry on demand…
I’m willing to move on to the next best course of treatment …I understand the risks…
“test driving” a biologic won’t kill me but actually might install the switch that SHUTS THIS DEBILITATING DISEASE OFF !!
I’m at the end of my rope…trying to hold on…
There are many of us, including myself, who are seronegative. I don’t even have an elevated sed rate. Yet I was diagnosed with PsA, and have now been on a biologic for 3 years. Prednisone is a short term answer, but definitely not a long term one.
Some people wind up in your situation for an extended time. You may need to go out of your area to a University Center or similar to find the right person. I wonder if you can even just start off by calling and asking to speak to the rheumatology nurses and find out if they will diagnose on the basis of clinical symptoms and not solely on bloodwork.
@ThreadDesigns I can’t even imagine what it’s like to have been through as many doctors as you’ve been through, nor what it’s like to be dismissed as you have been. All I can give you is my sympathy, and I have scads of that, and to keep my fingers crossed that you have some good days on the way.
thank you for the kind words of encouragement…I’m hopeful that I’ll find a doctor that’s more interested in helping me than his/her own liability…
ThreadDesigns, so sorry to hear your dilemma! Yes, you need to find a different doctor. My blood tests are negative for inflammatory disease, like about 50% of PsA sufferers, but I got Enbrel. Maybe your dermatologist could help you get a biologic, but I think he or she might need documentation from your rheumy about your PsA symptoms.
You’re suffering terribly and hopefully you can get a biologic soon because to me those sound like PsA symptoms that there’s a good chance biologics will help. Good luck–don’t give up!
I met with my primary care physician last week…I haven’t seen him since the nightmare started last March…He was very sympathetic and agrees with the speculation that the rheumatologists are in fear of liability since there are no concrete diagnostic results…He’s now willing to meticulously examine the progression of my disease and research the possibility of him administering a trial course of Enbrel to see if I respond to the biologics…I didn’t know whether to cry or curb my enthusiasm…How do you feel about a GP/MD doing this for me??