A.S. Face 0496: L.B.
At 17 (1983) I developed what looked like a small pimple on my left shin. That pimple burst and slowly but surely became an open wound ulcer that became infected. Being a terrified teenager I told no one and when I finally had no choice because you could smell the gangrene, I almost lost my leg. That was one of 15 different wounds I would develop over a 16 yr period. At no time during that 16 years would I live without an open wound or wounds on either leg.
From 16 on I saw many Dr’s and specialists, had surgeries, skin grafts and many other treatments. No one could diagnose what or why I had these ulcers. My hospital was and still is Mass General Boston and they never figured it out nor did Hopkins people or Mayo’s. So I lived with them and treated each one differently as they all seemed to respond differently. Some were deemed Pyoderma-gangrenosum and some were Pseudomonas. I was treated with home IV Antibx and many other therapies.
At 18 I started to develop horrible lower back and sciatic like pain. I saw more Doctors and specialists and was accused of faking it, imagining it, being hormonal, all the usual accusations they make when they have no idea what is wrong. They ran all the tests and found nothing wrong, negative RA factor so no way Arthritis they told me. Maybe Lupus, Maybe MS, maybe so many things but none of them were ever a diagnosis. This was bad and dealing with the ulcers was one thing but this was even more crippling, crawling on hands and knees to get to the bathroom was mortifying, but was a regular occurrence. Most of you have had the same symptoms so you get the picture.
When I was about 21 I saw a Rheumatologist (Tom) who was covering for my regular one while he was away. Tom had looked at my chart and full medical record before our appointment and was very enthusiastic to meet me. I was going in for a refill for Flexaril (the only medication I would take) and assumed it would be a 5 min appointment. Tom introduced himself and immediately said “I think I know what’s wrong”. He pulled out my medical history and started to talk about the fact that my mother and two sibling had severe plaque psoriasis. I had none, not even a rash, he then asked to look at my fingernails. He showed me what I already knew was there, pitting and discoloration. Then he told me that although I did not have Psoriasis yet, he believed I had Psoriatic Arthritis and that Psoriasis would probably be in my near future. He did not believe that the ulcers on my legs had anything to do with the PSA or psoriasis.
He did labs and found my ESR very elevated as well as my CRP. That along with the years of pain made him confident that it was PSA. He was right and with a prescription for NSAIDS we started our journey and friendship. The pain was the same and although the NSAIDS helped a bit, the diagnosis changed little, but at least I knew.
A year later I developed Palmoplantar pustulosis Psoriasis. My hands and feet were covered with pus bubbles that would break open, weep, turn into gashes, bleed and cause my hands and feet to peel all the skin away, and then start all over again. This was the worst. I could deal with the Ulcers and debridements and treatments. I could deal with the body pain and being immobile. I could not deal with those two issues and hands and feet that looked and felt like they were put in a meat grinder every day. I just about lost my mind. Thought about suicide, and then thought about my Mom and redirected those thoughts.
I was determined to live as much as I could. I wore cotton gloves, put Vaseline on my feet, then put them in bread bags and covered them with socks and shoes so I could walk. I had a shunt in for my IV’s that I hid well and carried a cooler with IV bags everywhere I went. I had home nursing and many hospital stays. I also had amazing friends and a kick [*bleep*] family that never give up on me, even today.
We tried every Psoriasis treatment there was and none worked.I lived this way until 1999. The only medication change was that after a really bad fall in 1995 that fractured my pelvis, I relented and started Percocet along with my Ibuprofen and Flexeril. Previously I wanted nothing to do with pain pills as addiction ran in my family. I won’t lie, percocet saved me. I’m pretty sure I would not have survived another year in the pain I was in.
In 1999 sitting in a Wound Center in Boston a woman sitting next to me asked me if I had a Pseudomonas infection. It is a sweet almond smelling infection that once you know the smell it never leaves you. She then told me how her daughter had it as well, but was now fine. Her advice was to go home and mix white vinegar with saline water and put compresses on the wounds. She said the pain would be immense, but that it would work. The Dr I saw called it an old wives tale and scheduled another surgery to debride and remove tissue. I called my mom and mentioned this to her and her response was “why not, we always said it would be something simple to heal it what do you have to lose?” My boyfriend sat on me as we applied the compresses and I screamed in pain. Within 2 days the infection was literally peeling off the wound and fresh tissue was revealed, and they started to heal. Within 2 weeks they were gone.
At the same time this was happening, Tom who is my Rheumy and my primary care Dr found information about a transplant drug called cyclosporine helping people with psoriasis. I started the same week my last ulcer healed. Within a month my psoriasis was invisible to most people. I could still see the pustule bubbles right under the skin on my hands, but my hands and feet looked and felt normal.
I still had body and back pain, but the sciatic pain had pretty much gone away, and I advanced from percocet to oxycontin then to Morphine sulfate which is what I take today along with 2400 mg of Ibuprofen and 300 mg cyclosporin. People do not stay on cyclosporine for 5 years, never mind 15, but my labs for liver and organs are good and I tolerate all my med’s well.
In 2007 a pain management Dr took some x-rays and found partial SI fusing and a few fractures. Nothing major we thought, but lets try Enbrel and see if that helps. I used it for a year and then Humira for 3 and no significant change in pain or ESR or CRP. I did decrease my cyclosporine and pain med’s to see if the biologics were working and the Pustules were back within 3 days and the pain was as well. We discontinued the Humira feeling it was not helping, that was in 2011.
2013 I start to feel the sciatic pain coming back. I was working out a lot with weights and HIIT training and assume that’s why I’m in pain. I diagnose myself with Piriformis syndrome, and start doing the stretching and never sitting for more that 15 minutes at a time. Stop wearing high heels and steer clear of hard surfaces for seating.
2014 I start to get crazy pain in the lower middle part of my spine. Ice is my only relief and even when I increase pain med’s, it does not last long. I finally tell Tom all that’s happening after thinking I was handling it. He of course send me for an MRI. The MRI is read and panic ensues and the radiologist having never seen AS, goes crazy and calls it a osteomyelitis phlegmon. I am rushed to Mass General where infectious disease people TB test me, and everyone pokes and prods and flips out. I am then sent for 4 more MRI’s and the chief of musculoskeletal radiology reads them and declares your Ankylosing Spondylitis is really extensive and is presenting in a way we rarely see.
I have a Sacral epidural abscesses and a single lung nodule. My SI joints and almost totally fused. I am fused from T-11 –
L5. I have many compression fractures, wedging, and moderate kyphosis. My ESR rate lives in the 90’s and my CRP is holding steady at 27 this month.
I just started a NSD. In 3 months the Dr’s want to put me on Remicade and keep me on the cyclosporin, just a bit lower dose, to see if we can control everything, as well as reduce the morphine to see what is working and what is not. There is no Data regarding mixing the Remicade and the Oral Cyclosporin. They have looked and found none. They are still searching and calling the manufacturers. We have no idea what will happen. This is either a brilliant plan or a full on disaster waiting to happen. I won’t lie, I am freaked out and for me that is a rare thing.
I guess a little perspective from me mighty help explain a bit. I am all about quality of life. Quantity is irrelevant if quality is crap. I have stated many times to Tom and my team of MGH Dr’s, that I am not going back to what I was. I know the cyclosporine is controlling my Psoriasis and I am pretty sure it is also why I have never had another open would ulcer. I will not give it up unless something else is as effective. For me there would be no reason too.
Peace and painless days to you all!!
Massachusetts, United States of America