PSA

By tburch102

1 min read

I was diagnosed in 2015, severe plaque psoriasis on my head it was so painful. My story started with a hysterectomy at 28, 1985, then my bladder fell out reconstruction and my left ovary was removed in 2011. Then sent to Mayo Clinic to find I had fibromyalgia and then in 2006 had a complete thyroidectomy diagnosis of Hashimoto. 2011 had a back fusion and breast reduction.

My life is very confusing. People don’t see my pain or feel my fatigue and that the doctors are just using me as a guinea pig. The worst is when I got Covid and used my Humira and had a severe breakout with two types of psoriasis. (would have fathered had 10 children naturally).

My rheumatologist put me on Tremfya and then sulfasalazine. Now my liver is having issues, either hep c or medication-induced cirrhosis of the liver due to meds. I am refusing sulfasalazine at this time. They want me to see a hepatologist... Very frustrating, confusing and a little bit scary. Not a lot of empathetic people around... Thanks for hearing a part of my story.

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CommunityMemberd67524 Member
i use head and shoulders once or twice a weel ,it really works,
Ocean28 Member
Oh how awful! No, people don’t understand the pain and battle. I take good care of myself and push myself so I get a lot of well “you look good” What is your med regimen?
tburch102 Member
I’m on tremfya right now for PSA and was talking sulfasalazine but now not sure f liver issues yet.
CommunityMember44c308 Member
Hi tburch102 , When you began your story, I thought you were talking about me! My scalp gets so inflamed and weepy and then crusty, it feels like someone has stitched on another scalp because of the tightness and pain. I had to go to a dermatologist who gave me a prescription shampoo and a liquid I had to apply to the sores and scans on my scalp. That was like igniting my scalp on fire for about 4 seconds. I would literally scream from the pain. Thankfully, these treatments worked quickly to help heal my scalp. This outbreak is what also concluded my diagnosis for PsA. I had a partial hysterectomy at 34 yrs old and since than because of this disease have had a full reverse shoulder replacement, a partial replacement of the other shoulder, over the years and 9 spinal surgeries, the only part of my spine NOT fused is my neck (cervical) spine. Just recently in August 2022 which I’m still recovering from, my prior thoracic fusion starting to fail and I was leaning, literally, to the left. My hips, buttocks and legs hurt so bad that I averaged 2-3 hrs sleep a night due to the pain from being in one position too long. This resulted in an 8 hour surgery by 2 spinal surgeons who fused the rest of my thoracic spine and straightened out the “lean”, redid the rods in my lumbar spinal region and “bolted” my SI joint to my pelvic area. Due to limited no movement in my spine, the SI Joint was moving too much trying to compensate for that. I’m still healing and still in pain, especially when I try to be active. A little every day seems to be the best answer and a heating pad for my back. I’m on muscle relaxers, prescription pain medication, gabapentin for the nerve pain I experience in my legs and feet, methotrexate along with Otezla that stopped working for me, (waiting for clearance on Skyrizi) prednisone for those wonderful flare ups, folic acid to combat mouth and tongue sores from the methotrexate, Effexor for anxiety and occasional depression, and finally Celebrex for inflammation. Last July I had my right knee replaced and the left one isn’t far behind! Phew! I get tired just writing about it. I do also have fibromyalgia. When I was my mid 40’s I was in denial when a rheumatologist told me I had either RA or PsA. He gave me an order to go to The Cleveland Clinic, which was a 4 hr drive on way. I went with my son accompanying me for support and to share the drive. They confirmed everything the rheumatologist originally told me after doing many tests. Well, I couldn’t be in denial and had to get educated with this disease and the fibromyalgia. I initially started on oral meds, which did nothing. The Enbrel was great for me until I had to go off it for weeks before and after surgery. It no longer worked when I was finally able to go back on it! I’ve been on Humira with the same issues as Enbrel. I had bad reaction to Remicade infusions. Next was Otezla which helped me for lots of years, Cosentyx which made my scalp break out, and now hopefully, Skyrizi! Like my rheumatologist said, there’s not too many biologics left in the basket. I pray this one will work for a long time. If I could only stop having to get major surgeries, I think I’ll do better! Lol! Extreme Fatigue is a big factor for me, yet I can’t sleep at night lately. It’s so darn frustrating to be so tired but sleep won’t come. I’ve tried every natural approach from Melatonin to Sleep Sounds, Meditation, no tv or phone 2 hours before bed, no caffeine except one cup of morning coffee! I’m going to try acupuncture for sleep and my bound up back muscles that no muscle relaxer seems to be able to relieve. Well, I’ve ranted on long enough. I’m sorry! I love to interact with people and as my husband says, can strike up a conversation with anyone! Lol! I would really welcome any suggestions on help for my insomnia and/or fatigue or any other suggestions on managing this horrible disease. Thank you for reading my post. Best of luck to everyone in finding something that works for you to obtain relief and be able to enjoy life again!

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