My Psoriasis Journey

Who is ready to go on this journey with me?  I’ve decided to share my story in the hopes that it reaches one person that needs to hear it.  My plan is to win this battle with my body and give you something inspirational.  Right now I am finding hope and inspiration from a man on YouTube who has been kind enough to share his story there.  This is hard for me to share but here goes.

I am in the early phase of treatment for Psoriatic Arthritis having just received a diagnosis In December of 2018.  I’m going to take you back to something earlier so you can see what happened before that diagnosis.

I’m trying to remember when I first noticed a problem.  I may have been in high school but I think definitely by my 20’s I noticed a dry scalp.  I assumed it was just dandruff and always used a dandruff shampoo because it seemed if I didn’t I noticed it more.  It was embarrassing but not something that kept me up at night.  And because it was embarrassing I never asked anyone about it because I didn’t want to draw attention to it.

By my late twenties and early thirties it had definitely worsened.  Now I would notice large flakes peeling off my scalp.  I was embarrassed to go to the hairdresser.  It was so itchy and at times would wake me because I was scratching.  When my youngest daughter turned one I made an appointment for myself when I took her for her check up and finally asked the doctor about it.  I seem to recall him telling me it was eczema or seborrheic dermatitis.  That didn’t sound so bad.  So I would continue the shampoos and he gave me a steroid to use on my scalp as needed.  The steroid did the trick and helped me control it for a long while.

At some point I moved and eventually ran out of the steroid.  I continued with shampoo.  I tried wrapping my head with a warm towel after applying olive oil.  I tried Tea tree oil.  Nothing helped.  Now this was becoming very embarrassing.  Not only did I constantly have dandruff on my clothes but whenever I stood up the sofa would be covered in a snowstorm of flakes.  I wasn’t sleeping from the pain.  At night I would scratch so hard there would be blood on my pillowcase.  When I was alone I would peel large pieces of dead scalp from my head like a nervous habit of biting fingernails.

I was seeing a dermatologist for another matter and asked him to look at my scalp.  He told me I had seborrheic dermatitis or seb psoriasis and offered a steroid with a better method of application.  That was fantastic.  I have a head full of curly hair so I can attest that ointments will not work.  Now I had a foam to apply.  But I remember saying to him , “so it is psoriasis?”  He kind of back pedaled a little and said well seb psoriasis.  I don’t know why psoriasis seemed to mean more to me.  Maybe I just wanted a firm diagnosis.  Until recently I still didn’t know the implicatiosn of that diagnosis.

Over time I saw different dermatologists who actually called my scalp issue psoriasis. That still didn’t mean much to me and the doctors never seemed concerned.  I asked many times if my allergies made it worse as I thought I had noticed a seasonal trend to it.  I would compare it to Atopy in pets – a condition I treat.  Atopy is basically an exaggerated response to allergens.  I was repeatedly told no, there is no connection to your allergies.  But I knew the term psoriasis meant something more so I still hung on to the allergy idea.

So again comparing it to the Atopy I treat in pets I asked if increasing fish oil or changing my diet would help.  Again I was told no, there is no connection to diet.

So naturally I increased my fish oil.  At some point I started immunotherapy for my allergies.  Yeah I never saw a difference.  Only the steroid helped. 

One of the joys of scalp psoriasis is that insurance doesn’t always like the topical medication prescribed.  I was always able to control my psoriasis with minimal medication.  At its worst I would do it nightly for a week or two.  Then I could usually change to two to three times a week.  Then if I paid attention I could stop and just start back a few days here a few days there. So I wasn’t always current with a doctor when I needed the prescription refilled.  So when insurance said no to the foam I needed a doctor who cared enough to figure out what I could use in place of it found something that would be approved.  For a long time it was a lotion (which was really more like a liquid).

Recently I found myself without medication again.   I guess really I also have psoriasis on my ears so I use a cream for them.  Well once again insurance decided not to approve the lotion I had used for years.  My doctor’s office told me too bad use the ointment.  I asked if anyone there had ever attempted to get ointment to their scalp through their hair?  I’m here to tell you it just doesn’t work.  So now I had to wait a couple of months to get into my dermatologist and pray for treatment.  It had been a long time since I had experienced that much pain and embarrassment from my scalp.

During that time I had my first appointment with my new rheumatologist.  She looked at my scalp.  I told her that I was desperate to get medicine to treat it and had an appointment with my dermatologist.  She shrugged her shoulders perplexed and asked, “you feel you need treatment for your scalp?”  I explained that yes it was very painful and as long as I had a steroid that could actually reach my scalp I could get it back under control.

My dermatologist did show sympathy to my scalp issue.  He took great concern in what he would prescribe even based on the carrier and if it would make my hair oily.  He offered a new medication called Taclonex but felt certain the insurance wouldn’t approve it.  Surprisingly they did!  This is a combination topical product with a Vitamin D analog and a steroid. 

I told him I was recently diagnosed with Psoriatic Arthritis.  He said he was sorry to hear that because he knows how hard it is when it goes to the joints.  He was quick to point out that my scalp psoriasis was not enough psoriasis to warrant systemic therapy but I would clearly be discussing that now.

So here is my frustration.  Why didn’t any doctor that I ever asked about my scalp bother to mention the possibility of joint disease?  Some of my general practice doctors had written prescriptions for my psoriasis while I was there discussing a joint issue.

Here is another question for my medical community.  Why didn’t anyone ever evaluate my nails?  Psoriasis in the nails is often an early indicator of PsA chances.  Years ago I noticed my toenails becoming ugly with white patches when my polish was removed.  Being ignorant of what this might mean I believed the nail tech when I was getting a pedicure one day that it had occurred because I had failed to use a base coat prior to my polish.  I would try to go a period of time without polish and religiously used a base coat from that day forward.  The nails look so bad it is embarrassing to me for anyone to see them.  They never improved and actually I lost my little toenail for a while.  On my first visit to my rheumatologist I intentionally removed nail polish ahead of time and asked her if she wanted to look at my toenail.  “I don’t need to,” she said, “I’m sure it’s just psoriasis since you have it on your scalp.”

So once again I was told no big deal.   I had been watching my fingernails when my joint pain started to include more joints and thought I was seeing a change.  The problem was I couldn’t find what I was seeing in my nails on Google.   That was when I started to question if I might have an autoimmune issue.

So why am I sharing my personal story?  For years I told my clients that skin disease hurts but we often don’t realize it and that is why their pet wasn’t eating or playing – it hurt.  I never wanted anyone to know why I would say that with such passion.  I had always done my best to hide my embarrassing skin disease.  I have real sympathy for psoriasis sufferers who have large plaques on their bodies.  I can only imagine the pain.  And I can also imagine how hard it is to hide it.  I’ve never seen mine but I know I didn’t want anyone else to either and I’m sure my hairdressers have over time.

I’m sharing my story because I want to help others.  Sometimes I think our medical professionals have become too good at compartmentalizing.  Our general practitioners have become our first line and then typically refer us out to a specialist.  My dermatologist didn’t spend time talking about joints.  My cardiologist doesn’t know that I have psoriasis.  My rheumatologist doesn’t care about my skin or the thyroid antibodies she discovered elevated on my autoimmune panel.  As a result we are left to seek out information on our various conditions and what they may mean from the internet or some other source.  Gone are the days when our family doctor took time to educate us about a condition we have and even what it may mean to our family members.

I know I have an increased risk of heart disease because both of my grandfathers died of heart attacks as well as almost all of my mother’s siblings.  My mother has heart disease which puts me at a special risk since her grandmother died of heart disease and we are all women.  Thank you American Heart Society for raising awareness and recognizing and raising awareness that heart disease in women is different than in men.

I’ve known since 1975 that I had an increased risk of retinal detachment because my father’s surgeon drilled that in all of our heads.  Thanks to him I have had retinal exams since I was a child.  Unfortunately it did not prevent my detachment but at least I wasn’t completely shocked to have suffered from it.

According to the National Psoriasis Foundation there are a number of potential chronic and serious health issues that may be associated with Psoriasis and Psoriatic Arthritis.  This list includes certain cancers like lymphoma and nonmelanoma skin cancer, cardiovascular disease, Crohn’s disease, Diabetes. Depression,  Metabolic Syndrome, Obesity, Osteoporosis, Uveitis, Liver Disease, Kidney disease, and Hearing Loss.  Sure that list sounds a bit like the possible side effect list of a medication but think about this.  I’m at increased risk of heart disease anyways.  My father suffered a compression fracture in is vertebra due to osteopenia and osteoporosis.  He suffered from vascular dementia.  Just by being my parents’ daughter I am at risk from these issues.  Now add in my psoriasis and nobody has ever and I mean to this day no doctor has ever mentioned this is something to be concerned about.

Going back to the scalp psoriasis multiple sources report that 10 – 30% of people with psoriasis will develop PsA.  As well psoriasis in your nails makes you more likely to develop it.  And for anyone with psoriasis they should be told that there is inflammation occurring in their body and be given a chance to understand the long term effects of that inflammation and maybe some ways to combat it.

So I’ll share my joint story in another post.  Today is about educating you that psoriasis is more than flaky itchy skin and the impact it can have on your family members as well.  My daughter started suffering joint pain at around 14 or 15 years of age.  I had not heard of PsA at this time and I had no reason to tell anyone about my embarrassing scalp issue.  I took her to our family doctor who sent us to an orthopedic doctor who diagnosed Chondromalacia Patella in both legs.  Basically he told us that this is common in girls as we are built for child bearing and as our hips expand during puberty sometimes our legs become bowed and the kneecap gets pulled slightly out of place.  An MRI was performed that showed a torn meniscus so the decision was to do surgery on the left knee.  The doctor performed a lateral release procedure that “released” the lateral tendon holding the kneecap so it would be able to move back to the correct place.  The meniscus was healthy so nothing was done to it.

Now my youngest daughter started physical therapy.  At some point two separate physical therapists told her the pain was in her head.  I thought she had misheard what was said until I heard one of them tell her that.  So we stopped physical therapy.  After a time things weren’t improving so we agreed to try it again.  This time she tried to tell them that the exercises were causing pain in her hips.  She was told to push through it or to ignore it.  Back to the doctor we went certain that if she ever needed physical therapy again it would not happen at this facility.

Now she got to enjoy MRI’s on both hips.   When we went back to discuss results with her doctor he told us she had a torn labrum in both hips. The labrum is a rim of soft tissue that lines the hip socket providing stability and protection to the joint surface.  He told us he had never seen someone with a tear in both hips.  So he referred us to a different orthopedic surgeon as very few surgeons perform this procedure.  So off we go ready for more surgery. 

I really like and trust her new doctor.  He wants to do everything he can to avoid surgery because of her age.  He believes the labrum is torn because her femoral heads have basically little hooks on them that are rubbing on the labrum.  If he does surgery he will need to shave the bone to make it smooth and possibly use a cadaver implant to replace the labrum.  He also wants to release her flexor tendon to stop the pain and popping that occurs from that.  But first he wants her to try a steroid injection in the hip.

Those of you who have steroid injections into a joint know it is not fun.  Hips are big joints.  My daughter is willing to try it because we know surgery should be the last resort.  She has never had benefit from a steroid injection in the past but we sign up for it. 

This was a very painful procedure for me to watch my very brave daughter receive.  It was performed at the hospital.  A doctor used a fluoroscope (I like to call it live action xray) to identify the joint.  First a local anesthetic had to be injected and then we watched as the needle was inserted into her hip joint and the medication was dispensed.  We had been told she’d be able to work after the injection.  At the time she was a barista which meant time on her feet.  Once we learned how involved this would be they suggested she might not want to work.  Sadly no one would take her shift so she hobbled off to work that afternoon.  And sadly she didn’t receive any pain relief from the injection.

So now that the shot failed we were left with surgery.  Our super doctor still wanted her checked out more before he would operate.  Because she had multiple joints that were painful he wanted her to see a rheumatologist first just to cover every possibility. 

Rheumatologists who take new patients are not easy to find.  And now we had the added complication that my daughter was under 18 so we had to see a pediatric rheumatologist.  No matter my pleas that she could bear children we had to see a pediatric specialist.  When we finally found a doctor to see her we felt very out of place in his waiting room full of tiny chairs and kindergarten primary color decorations.

The doctor was not welcoming to us.  He looked at us and asked why we were there.  I explained that her doctor wanted her checked before surgery because she had multiple painful joints.  I also told him that her sister had recently been diagnosed with Lupus and my half sister had relapsing polychondritis.  He wasn’t impressed and it felt as though we were wasting his time.  “I think she’s ok,” he said, ‘but since her doctor wants a blood panel I’ll run one.”  That was that.  We never learned what tests he ran but received a call that all was normal and scheduled surgery.  The right hip was done in 2016 and the left in 2017.

The surgeries and physical therapy lessened her pain but her knees still hurt, especially the left one.  And occasionally her wrist hurt.  Back to super doctor we go.  X-rays and exam continue to show a bow to her leg but no one is convincing that it is a significant deformity.  So surgery becomes a discussion point again.  Since she has already had surgery on that knee she would need something more aggressive this time.  So once again we try a steroid injection and physical therapy.  And once again there is no improvement.  Super doctor ordered an MRI on both knees. 

There was nothing really remarkable on MRI.  Some mild inflammation and possible Hoffa pad impingement.  We started talking about surgery again and he just seemed perplexed and seemed like he wasn’t sure he wanted to do surgery.  I reminded him that her sister has Lupus and told him I was waiting for a diagnosis for myself as I had just popped with a positive ANA and negative RF.

“Funny you say that,” he said, “because I keep looking at her and thinking her degree of pain does not add up to what imaging shows or what I am seeing on exam.  I would hate to do surgery if it is something that can be fixed with medicine.  So many people go undiagnosed for years and then they start medicine and finally feel better.”

I asked him to order some blood tests because it would take months to get her in with a rheumatologist.  I promised that if anything came back we would pursue that avenue.  My daughter just wanted surgery because she wanted the pain to end.

He agreed and looked up some tests.  We scheduled surgery in the event everything came back normal.

So now came the waiting.  The lab refused to give my daughter her results.  The holidays were upon us and we couldn’t get the doctor’s office to give us results either.  We didn’t know what to expect.  Were we going for surgery?  Finally all the pieces connected and we were scheduled an appointment to go over the results.  We had finally seen them and while I recognized abnormalities in two of the tests the ANA was negative so we thought surgery would still happen.  Until we talked to super doctor.  By now I had been diagnosed with Psoriatic Arthritis.  I knew the HLA-B27 test that was positive on her could be used to detect PsA.  But it could just mean she might get it or be a carrier.  He pointed to that and a slight elevation in her C Reactive Protein and said he didn’t think she should have surgery right now.  The fact that I had PsA and her sister has now who knows what autoimmune issue and she had two abnormalities made him want to wait.  She was so upset because she just wanted to be out of pain.  But she did understand that surgery may not be the answer.

So she took her lab results to a rheumatologist and was given a tentative diagnosis of PsA based on her test results, her symptoms, and her mother’s diagnosis.  Multiple tests were run and she was started on sulfasalazine.

I know I’m going through the stages of grief.  I think I went through several when my oldest daughter was originally diagnosed with Lupus.  She had gone through so much already with her fall that caused a broken back and broken wrist.  Then she suffered several gastrointestinal issues and had surgery to repair a hiatal hernia and gastric fundoplication that wrapped her stomach around her esophagus to help with GERD.  So when my darling daughter was diagnosed with Lupus it seemed unfair to me that she now had that to deal with an autoimmune disorder for the rest of her life.   I’m sure there was some denial.  I have had some bargaining as I have wanted to take away my daughters’ pain.  Depression has been there as I felt some guilt that my children were suffering so.  And then there was depression as my body started the fight.  Currently I am at anger.  Pure blind rage.

So this is where my passion comes from and why I am willing to share my personal journey.   Why didn’t a single doctor over all these years tell me, “You have psoriasis.  It may never spread.  However it is an autoimmune disorder and you could be at a slightly elevated risk for other issues.  As well your children may be at risk too”?  Why didn’t anyone ask do you have any joint pain?  Why did my daughter go through three surgeries?  We felt so bad as super doctor questioned if he ever should have done hip surgery on her and she said but it helped and I said you sent us to a rheumatologist!  What more could he do??  Maybe if I had known to be more aware I would have pushed that rheumatologist more or maybe asked the first orthopedist about it or the urgent care doctor who couldn’t diagnose her wrist pain!

So I am sharing my story to raise awareness.  If I help one person help their child avoid what mine went through it is worth it.  As my story progresses maybe I can help someone get the correct help for their pain sooner than I did.

I believe you have to know what is wrong with you and how to treat it before you get the doctor in today’s time.  But maybe I can help you advocate a little harder for yourself and your children. Thanks for making it to the end of this lengthy post.