Hi everyone!! My name is Bethany but everyone calls me Beth . I was diagnosed with Psoratic arthritis about 4 years ago after my sister died suddenly…she was 49 years old and had a massive heart attack . She was my best friend and we were even RNs together at the same hospital.i felt unwell and went to,the dr who sent me to a rheumatologist…after a lot of blood work and a DNA test it came out Psoratic Arthritis. My uncle has Psoratic arthritis and like me we both had no lesions or skin flares … I do once in awhile get a rash on my scalp but it goes away …the stiffness in the am which lasted all day and the severe pain and my middle finger which is sausage like and my toenails were the first clues. I am on methotraxate iv remicaid, folic acid , vit d , multivitamin… my vit d level is always critical so I have to be very careful of fractures…I had a bad fracture already …I am 55 and have 10 years till I retire as a nurse , I take care of my mom who is 81 with Alzehemiers, I am also in a degree program to finally get my masters degree in nursing …so I am quite busy … I have a kitty my sister gave me 2 years before she passed away so the kitty is very special to me …please tell me about yourself and how long you have had Psoratic Arthritis…what meds are you on ? Do you have a lot of joint damage ? Mine is mostly autoimmune which means my organs are being attacked , my uncle is the same …he now has kidney cancer , please tell me all about you and how you cope …thank you all in advance …your support is so important to me
Welcome to our family. You will find there’s lots of like minded people here with similar stories but so many different ways of presenting this interesting condition. There’s load’s of info to read here and people are very supportive.
Hi Beth
I was so pleased when I found this forum and I’m sure you will be too. We here understand you. I find that one of the hardest things to cope with is explaining to people and getting people to understand - even loved ones.
I don’t have much visual indication of the disease - its all pain and fatigue - apart from not very pretty nails which most people think are fungus. So it’s frustrating when people don’t get you. But they do here and its a great place to vent.
I probably have had PsA for years but only diagnosed last Jan. My areas of pain are SI joints fingers, feet, achilles and sometimes my knees join the party. I went through the protocol of NSAIDs, DMARDS and now had my first Enbrel injection last week. I also had a steroid injection to keep me going and I must say I haven’t felt this good in a long time. so optimistic about the Enbrel. I like to look at the positives of my situation and there are a couple of things that wouldn’t have happened if I didn’t have this:
1/ I discovered swimming. I never used to swim proper so I took some lessons because I heard it would help the pain and it’s amazing. I’ve discovered a new world.
2. I found a fitness class which is perfect for me. It’s called NIA and is a combination of healing arts, dance arts and martial arts. I’m putting the link here because for those of you who love music and dance this is wonderful https://nianow.com/
You are going through so much and sounds like you are the kind of person that gives so much to others. Take time to do something really good for yourself. Something you enjoy that you know will lift your spirits Enjoy Kitty… pets can be so comforting.
Hi Beth. Glad you found LWPsA. I’m so sorry you lost your dear sister at such a young age. It’s so sweet you have the kitty from her–what a nice connection to your past and all the love you shared for each other. I lost a sister when she was 35 and I was 38–that was 26 years ago, but it sometimes seems like yesterday. Your sister will always be in your heart and I’m sure you have many happy memories of growing up with her.
I hope you get continued relief from your PsA symptoms–it sounds like things are going pretty well–well, considering how PsA is sometimes difficult to diagnose.
Thank you all so much for your wonderful comments. I need those words . My sister’s 4th year of the anniversary of her death was Aug 10 …I still am going through grief it was a rough day . And poor mom thinks my sister is still alive she has Alzheimer’s and dementia . I do have to take care of dad but he lives at his house and is pretty mobile even though he has colon cancer …I do all his grocery shopping he’s frail because of the cancer and so I buy all his groceries and of course he loves club soda ( 18) bottles and a lot of other things I buy a months worth at a time for him…I carried in to his house …I had severe pain after that my knee was killing me and my lower back was so painful I had go lay down on the heating pad , and finally gave up and took a gabapentin and it knocked me out cold and slept for 3 hours .
I appreciate all your support , I really think PSA is a diagnosis that is not understood…people think it’s just a skin rash not the arthritis part of it …they don’t understand how serious it can be …PSA is no joke it is a serious health issue .
I was happy to find this forum it’s nice to have people understand the pain and fatigue and isolation it can cause …I don’t feel like going out much …besides mom and dad and my health issues ,and my 3 twelve hour shifts at the hospital… i would rather stay home lay on my bed and read with my cat …does anyone know some stay at home low impact excercises? sometimes I’m just exhausted …thank you and I love you all , I’m glad I found you …I hope I can help you the way you helped me , I’m gonna try to sleep good night
Delighted you found us and truly this forum is wealth of support and knowledge and has definitely got me through my worst times to date. I’m only a year and half diagnosed. Had psoriasis awfully as a teenager but it disappeared pretty much in my 20’s and disappeared altogether when I very badly fractured my shoulder in my 30’s. Skip forward to age 53 and I decided to have my gross bunion corrected. And bang after that I developed this arthritis. Indeed I never recovered from the surgery. Was diagnosed very shortly afterwards. Threw a temper tantrum for about a year and finally knuckeld down to being treated. Failed mxt in tablet and injection form and am still waiting to see if sulfasalazine does anything.
Did well on steroids but discovered I’d fractured my pelvis at the end of June so I’m still recovering from that. But I need to go back to swimming as soon as, as that does truly help with everything. Have a think about trying to do that.
I had two cats up to the beginning of June and sadly had to put one to sleep then. He was 16. But his brother remains hale and hearty. I also have a black lab dog who’s coming up to 18 months old and is such fun. My pets truly do keep me going lots of the time.
I’m also 55 and thankfully presently can work from home, although being stuck on my laptop all day isn’t good either.
Welcome. LIke you, I only have a little psoriasis in my hair. Doc said doesn’t make much difference because it doesn’t have to be bad.
The fingernails and toenails were also a huge clue to my doc, but I pretty much diagnosed what I had.
I have been on Otezal since being diagnosed in November, it helps some. Doctor is not happy with results and wants me to consider Humira or Embrel.