I was diagnosed with psoriasis about 15 years ago. My psoriasis is not what I would call bad, I’ve lost some nails and a few stops on my body but nothing to be concerned about.
About 5 years ago I noticed my hips hurting and my ankle stayed swollen and painful but I figured it was part of aging and the fact that I do intense yard work and landscaping in my yard.
About a year ago my neck started hurting. Six months ago my husband had to start helping out of bed in the mornings and I no longer had full use of my shoulder. Two months ago my hands and arms became so painful I could no longer do my yard.
Last month I finally went to the doctor. WOW!!! It’s been crazy ever since. I have permanent damage to my ankle and have started developing hammer toes, my shoulder, lower back and neck are also permanently damaged. Not sure if surgery is an option for me.
My MRI is today at 5pm. Not sure where I go from here but I do know that I don’t want to take all the meds.
I really don’t want this dictating the way I live my life. SCARY!!!!
Hi there, KelleyD
You’ve really had a rough landing, haven’t you? As you get to know some of us here, you will realize that many of us have been where you are now. It gets better, it really does. Once you have a diagnosis, at least you know what you are dealing with, and you and your doctor will be able to figure out what to do about it. Embarking on this journey is scary for sure, we all understand that.
Be sure to check out the many articles in The Newbies’ Guide, particularly the ones about Getting the T-shirt and Mind the Gap.
I’m glad you found this place, and I hope you will be too!
Thanks Y'all. My MRI is over and it wasn't the best news but I'm sure things can only get better. Hopefully I can start picking my grandbabies up again and give them hugs and kisses...I sure miss doing that.
It is very hard to accept PsA dictating your life, but it is and you need to take control. I felt exactly like you and the nice moderators got a little upset with me for saying I didn't want to take the meds cuz I hate doctor appointments and I thought I could just tough it out. But, the disease was attacking my body more every day and their wise advice helped me come to a decision that has made my life so much better. I got on Enbrel almost a month and a half ago, and feel so much better. The results were immediate, with no side effects. I still have pain where there's damage to my joints, but I take some OTC pain meds for that. You really don't need to see doctors too often when you're on Enbrel.... I'll have the first follow-up after 3 months, and apparently it doesn't affect the liver, so no worries about that. I worry a little about a weakened immune system, but so far I've been around a lot of sick people and haven't caught anything yet!
Good luck--you will get a lot of encouragement and good information here!
For sure, KellyD, none of us wanted to take the meds to treat this disease. But you have to ask yourself whether you want to be living with permanent joint damage. And believe me, having your joints trashed compliments of this disease is not a good choice. Sometimes PsA moves slowly, but at other times, in other people (and I am one) it can be incredibly destructive. For good reason, we have a saying around here: fear the disease, not the drugs.
Right now I am the poster child for taking the medications for PSA. I usually take Remicade every four weeks and I’ve had to stop because I’m having surgery on the 21st for a small hernia repair. It’s not a very risky surgery, it’s not a very big incision, but the rheumatologist is taking me off of my Remicade. Usually I’m working a 50 to 60 hour week, keeping up with three boys, my husband, and my six pets. But today, after going A few weeks without Remicade, I’m a mess. I was in so much pain this morning that my husband had to bring me my medication. He had to help me up so that I can take my medication. I wasn’t able to go to work today, and I’ve been sitting in the recliner all day long. I’m proud that I made it to my recliner and was able to put on clothes. But that’s all I’ve been able to do today. We say around here very often, “fear the disease, not the meds”. And that is so true. I don’t know where I would be without the medications that I take.
I hear you say how much you love your yard and be able to do your landscaping. I hear that, and see a kindred spirit because landscaping is one of my favorite things to do. I love being outside playing in the dirt. I love my yard and love the peace that it brings me to be out there working with my gardening tools and my plants and making something beautiful. But without Remicade and methotrexate I can’t do those things. I can’t even bathe myself or take care of my basic needs let alone take care of my family, my job, my pets, or anything else that I enjoy doing, and that includes my beautiful yard. I can’t imagine what the rest of my life would be like if I didn’t have the Biologics or the DMARD’s to help alleviate some of the damage that Psoriatic Arthritis is wreaking in my body. In fact, I couldn’t even type this message to you. I had to use the voice controls on my iPad. The typing was too hard on my wrist and my finger joints. Please don’t be afraid of the medications. The risks associated with taking the medications are actually much lower than those terrible patient make them out to be. Very few of us have problems with increased infections or more colds or just getting sick more often. That rarely happens. Please don’t be afraid of these medications. You can get your life back with them. Trust me on this one; I know. Thank you for taking the time to read this and I hope that maybe it might change your mind a little.
Kelley, you sounded miserable in your status post. Can you catch us up on what’s been happening with you? What did your MRIs show? Have you started any treatment?