Hi Melissa! Sure can't say I don't blame you for not trusting. Sounds like you've been through a lot. Now PsA, too. The people are right, though. They, along with the fear of my disease that seems to be getting worse every day, have convinced me it is well past the time I should have started a biologic. Now my feet and hands are always sore, I have the achy joints, tendonitis, weakness, fatigue and brain fog that never goes away. I was like you, really skeptical about biologics-the TV ads sound more like they're trying to talk us out of taking them, what with all the possible SEs!!! I truly thought I was tough enough to deal with anything PsA could hand me. Now, I'm worried the damage that has already occurred will continue to give me more pain and new damage is happening constantly. I think I probably should have started the biologic 6 years ago when my rheumatologist first saw me. I thought he was jumping the gun because I really didn't feel that bad then. But, I think everyone would agree, it's a sneaky disease. One day you can feel sort of normal, but the next several days you have more symptoms than you care to deal with. It goes up and down, at least for me--so even when I'm feeling my worst I have told myself I'll soon feel better. I think everybody has their own threshold, and you will need to decide when you've reached yours. But, watch out--chronic pain, even if it's not real bad, is doing irreparable damage.
Hi Melissa. I am the other moderator Lamb was reffering to . Both Lamb and I have lost sons. There is no pain in the world like it. I feel for you.
I have had PsA since childhood or perhaps born with it. I was not diagnosed until I was 50. I made an appointment with a Rheumatologist and asked her if it was PsA. She said no and I went home. A year later I was back and asked "if this is not PsA what is it?" and she said "of course it is PsA why aren't you on a biologic?" Sometimes it doesn't pay to be a nurse.
I know the meds are scary. Common sense tells us to tread carefully. But after watching all the arthritics from years ago dying or living in such agony and invalided I am ready to take the new drugs. I am on my sixth biologic Stelara. I am one of the few who builds immunity to the biologics so I have to switch every year or so. I also inject methotrexate weekly to try and suppress my overly zealous immune system from attacking the biologics. This is not really what I foresaw in my "life plan" but once I accepted the disease instead of fighting it I found I had a lot more energy to bring to the day. I have pain every day and I accept that too. But my day will be what I make of it not this stupid PsA. That is not to say all is rosy. I have learned to yell and bitch some days or take to my bed on others. Every day is a new adventure and has some lovely parts to it now that I have slowed down enough to notice it!
We are here for you Melissa. We are all in this together. "Fear the disease, not the meds!" It is our new war cry.
Don’t fear the disease, respect the diseased. Come to terms with it. Only then will be able to move on from the denial stage. And don’t worry about returning to the denial stage every now and the. The process of grieving is a cycle that often repeats.
Biologics do have some risks involved, but they also may give your life back. They are safer than traditional DMARDs in my opinion.
I think I said that first sentence wrong....but I'm sure you know what I meant!
Grandma J said:
Hi Melissa! Sure can't say I don't blame you for not trusting. Sounds like you've been through a lot. Now PsA, too. The people are right, though. They, along with the fear of my disease that seems to be getting worse every day, have convinced me it is well past the time I should have started a biologic. Now my feet and hands are always sore, I have the achy joints, tendonitis, weakness, fatigue and brain fog that never goes away. I was like you, really skeptical about biologics-the TV ads sound more like they're trying to talk us out of taking them, what with all the possible SEs!!! I truly thought I was tough enough to deal with anything PsA could hand me. Now, I'm worried the damage that has already occurred will continue to give me more pain and new damage is happening constantly. I think I probably should have started the biologic 6 years ago when my rheumatologist first saw me. I thought he was jumping the gun because I really didn't feel that bad then. But, I think everyone would agree, it's a sneaky disease. One day you can feel sort of normal, but the next several days you have more symptoms than you care to deal with. It goes up and down, at least for me--so even when I'm feeling my worst I have told myself I'll soon feel better. I think everybody has their own threshold, and you will need to decide when you've reached yours. But, watch out--chronic pain, even if it's not real bad, is doing irreparable damage.
Thanks again for all of your insightful replies. So you all know I had my doctor start the paperwork for approval for a biologic. While I walk into every situation expecting the worst, I also know, first hand, that there are no guarantees in life and that life is/can be short. With that in mind, I want to make sure I live/enjoy each day to the fullest and that can’t happen if I don’t start slowing down this disease. Thanks again
Melissa