My Psoriasis Journey : More Joints Join the Party

It is difficult to share this journey to diagnosis and a treatment.  I like to keep this kind of stuff private and quiet but I need to do my part to raise awareness and maybe help others get help sooner or help push for studies for diagnostics and treatment. I am not complaining or looking for sympathy. I simply want to join the fight and hope my family’s story may be useful.

So back to the story of my joints.  I finished physical therapy thinking that the prednisone had knocked down whatever aggravation I had in my sciatic nerve and SI joint and I should be on the mend.  Unfortunately this was relatively short lived.  During physical therapy I would have to be careful with some exercises as my knee occasionally reminded me that it was there.   This was just always assumed to be typical aging knee.

During this journey in the fall of 2016 my left thumb started hurting.  We humans recognize that our opposable thumbs elevate us above many animal species.  I don’t know how many people recognize the value of that very important feature of our bodies until it is not available.  The pain and weakness was so bad that I could not grasp a drinking glass to drink water.  Texting was impossible, especially when my right thumb joined the party.  I didn’t understand why this was happening.  I assumed I was getting arthritis in my thumbs probably due to poor use of protecting my hands while taking x-rays throughout my career.  Sometimes I thought it was due to this stupid game I played at night on my iPad. I was really worried that this would end my ability to perform surgery.  And then just as fast as it had begun it went away. I tried wearing a thumb splint but when both thumbs hurt I struggled to decide which hand to put it on. The pain would come and go for a time so I asked for a wax hand bath for Christmas hoping it would soothe the pain when it came.

I had also been noticing my fingers would swell especially at night.  It was often difficult to get my rings off.  I rarely use any salt in my cooking and assumed it was happening when we had eaten out and I had consumed too much salt.  A couple of times I thought it might be due to spending too much time in the heat.  Then I started noticing it on days when I had cooked and it hadn’t been hot.  Something wasn’t adding up.

I limped along (quite literally) with varying joint pain for a while planning to see a doctor and trying to decide which one.  Finally I called my daughter’s super orthopedic doctor’s office.  When asked which joint I wanted checked I started with my hip, then mentioned SI and knee, and then said thumbs.  The receptionist rudely informed me I would need an appointment for each joint separately and oh by the way he doesn’t do hands so you’ll have to see someone else for that.  As I was trying to understand why he couldn’t evaluate each joint at one visit since the issues were on one body she informed me they didn’t take my insurance so it would be out of pocket.  I opted to try to figure out a different plan.

On the days the pain was the worst I would take 800mg of ibuprofen up to three times a day and maybe 100mg of gabapentin at bed time.  Icy hot helped my SI joint and aspercreme was maybe useful on my thumbs.  I was getting close to giving in to the idea of the steroid shot in my SI joint but I wanted to try one more thing.

I started doing Yoga again.  When I first started other than soreness I thought I had found the “cure.”  I remembered how good my body had felt when I was attending regular yoga practices years before.  The only issue I had was when I attempted a bridge (which I had been told months before not to do in physical therapy) and aggravated my SI joint.  So now I decided to add an alternative therapy.  I sought out an acupuncturist.

I had heard so many good things about acupuncture and saw it work on so many animals I decided to try this.  I was nervous at the first treatment but I definitely felt relaxed afterwards and my pain seemed to respond.  She prepared me that with my condition it could take 8 to 10 treatments.  After having experienced some results I was excited for the second treatment and singing the praises of ancient Chinese medicine to anyone who would listen.  So at this appointment she decided to add on my knee and my thumbs because she had some arthritis starting in her thumbs and knew that happened as we age.  I was in so much pain in my hands after this treatment that I did not want her to touch them again.

In my profession you must be a veterinarian in order to be certified in acupuncture to treat animals.  I really do not understand why human medicine does not require someone with a medical degree for certification.  On my third appointment things went quite badly.  While the acupuncturist swears it cannot happen it felt like she hit my sciatic nerve.  The pain was intense and then I had a vagal response.  I’ve had this happen on two other occasions but always with a doctor present.  A vagal response results in lower heart rate and blood pressure and fainting.  She said it was needle shock.  Whatever it was, it was scary.  I did not feel good after that appointment.  My husband convinced me to return one more time.  Everybody was nervous.  I may have received some minor benefit but I was too anxious to continue.

Around this time I also started experiencing extreme fatigue.  My yearly severe allergies also started flaring.  I was in constant pain and just had no energy.  I was put on multiple Medrol dose packs for my allergy issues.  Nothing was helping.  I just knew something was not right with me and couldn’t figure out how to get past it.  I no longer had any energy to attempt yoga or much of anything.  It may have been around this time that I started experiencing some depression as well.

I made an appointment with my nurse practitioner to go over a list of problems.  This day my sinus issues were back in full swing as well.  I told her about my thumbs and the issues I had been treated for when she asked, “Has anyone done an ANA on you?”  I said no but I thought they should have.  She immediately said, “with your symptoms and a daughter with autoimmune we need to check it.”

I left there certain I must have rheumatoid arthritis and joking as she gave me yet another Medrol pack that steroids might be my best friend.

I wasn’t laughing when I received my results.  Positive ANA, negative RF and some other changes that were most likely due to my sleep apnea.  An antinuclear antibody test or ANA is a primary test used to determine if a person has an autoimmune disorder.  So now I headed to doctor Google to look up anything I might be suffering from while I waited months to get in with a rheumatologist.  And my pain and fatigue continued to worsen.

Rheumatologists accepting new patients aren’t easy to find.  I also think they are a hard group of doctors to find someone you gel with.  But at this point I find myself sticking with my current doctor because I need a rheumatologist and it seems too hard to make the switch.

I didn’t feel a bond with this doctor on the first visit (or yet).  I really didn’t feel like she wanted to help me.  I was in pain and felt like since I was over 40 I might not be worth her time.  She did order some blood work and imaging and I scheduled a recheck.  After some back and forth she finally gave me a diagnosis of psoriatic arthritis.  Understand this diagnosis did not come from a specific test.  My diagnosis is due to the fact that I am negative for rheumatoid arthritis, have an indeterminate result for the gene associated with PsA (which, according to the doctor often means positive), and have scalp psoriasis.  At one point I yelled at the doctor that I didn’t think she wanted to help me.  This pain was interfering with my life and my career and I needed a doctor who cared and wanted to help me.  She told me she just thought I didn’t want to take medicine but now that she knew I was willing she would write me a prescription.  I told her I didn’t want to be on a lifelong medication with side effects without knowing what we were treating ; that is very different from being unwilling to take medication. 

I also noticed a significant elevation in my thyroid peroxidase enzymes on the labwork she handed me.  She seemed annoyed that I was asking about that and said I just needed to have my thyroid levels checked annually and my gp could handle that.  I asked for a referral to an endocrinologist and am glad I did.

So now the quest for treatment started. Prior to the discussion that I was willing to take medications to treat the condition I had been given meloxicam to try instead of ibuprofen and prednisone for really bad days. Now it was time to discuss the medications that anyone facing a diagnosis like this is scared to be faced with. So we will cover what choices I have made for treatment and how those choices have worked in my next post.