A journal of healing

Posts tagged ‘psoriasis’

Fighting auto-immune disease

I am in a battle of my life, really and truly. I have auto-immune diseases. It is a fight many people participate in. But for me, I have the stigma of being fat. It is the first thing that medical providers hone in on, sometimes exclusively. But now I am in another tail spin. Let me explain.

I have psoriatic arthritis, PsA, and Psoriasis, P. I was diagnosed with them after I went through a horrific time in my life. I was divorcing after twenty-seven years with an abusive husband. I had to sell the home we lived in for fifteen years as part of the settlement. I lost my job that I loved, although there were some real stinky issues there too. I basically lost everything. But I got through it and then, I moved into a great house and went back to school. My life turned out great. But my body suffered from all the trauma and stress.

I ended up in the hospital with blot clots. The clots resolved themselves and I was truly blessed because there was one very close to my heart. I was put on Coumadin for life. People were quick to say, “Fat girl has fat blood and hence her issues.” Nope. I have an inherited disease call Factor V Leiden. It comes from my father’s side. It has absolutely nothing to do with being fat. But after being in the hospital, they put me on a strong regiment of blood thinners to the point I bled out. They needed to stop my periods. That was another battle but finally I had a hydro thermal ablation.  But the anemia and other issues took a toll on my body.

I was on a path of a wonderful new life. I was happy. I met a great guy. I loved my house. Life seemed great. But this weird rash appeared when I was going through the divorce. It got constantly worse, spreading all over my body. I itched. I went to the dermatologist who had no idea what it was. I also noticed that I was having pain, achy pain in my joints. Not enough to slow me down at first. I used to play tennis three times a week, mow my lawn and walk all over the place. I had always been a large active person.

I was teaching at the time and some days I could not stand for very long and walking became painful. I bought ugly shoes and went to the doctor. Her diagnosis was I was fat. “Lose weight” was the prescription and take Advil. So I took mega doses of Advil. Finally, when my hands started to turn into claws, they paid attention. I would sit and cry for hours from the dull burning that radiated in my body. It is hard to explain the pain to anyone who does not have this disease. My skin looked like I had the measles and I would scratch to the point where I would wake up with blood stained sheets from scratching in the night. I did not sleep for more than two hour blocks.

I was tested for rheumatoid disease and came back with a confirmed diagnosis of PsA and P. My life changed completely. I went on prednisone, methotrexate, and continued with Advil when needed. I felt better, but the results from those drugs impacted me in a bad way. My kidney crashed. I lost all function on the right kidney. I had been peeing blood for months, but they said it was the Coumadin. It wasn’t.

My glucose has always been low, much to the chagrin of doctors in the past who expected high glucose because I am fat. We do not have diabetes in the family. My A1c went from 5 to 13. Hello!!!  I also gained 30 pounds in a very short time. They took me off the prednisone and then the methotrexate. I would get very sick after I would take my shot. My body was telling me to stop. Next, they tried me on Humira, which did nothing, and then Enbrel. The Enbrel worked for 8 years. I started getting horrible cramps everywhere in my body and the pain came back. I also slowly put on weight that would not come off. This also is a known side effect of Enbrel. All the drugs I have taken, except Otezla which made me feel sick all the time, are known for weight gain as a side effect.

For the next three years, I went through a series of taking every drug on the market for PsA. I had horrible reactions such as feeling hung over to not being able to walk from the pain. I had horrible IBS brought on by these drugs. I could not go anywhere including going to work in the morning without the fear of crapping myself. And I had a few episodes where I did. It was humiliating and horrendous.

My kidney that had gotten better was starting to decline. I passed over 50 kidney stones. I have about twenty in a box. Some were huge and the doctor took them. They were all uric acid based stones which is a product of PsA. There were stones in the right kidney that were too big to pass. I spent days in agony when I was passing a stone, but I still went to work. I passed one at work. Talk about a high pain threshold.

In 2016, we decided to try Humira one more time since it was all that was left. It almost killed me. My glucose steadily inclined, my kidney function declined and all the while I was steadily gaining weight. I was miserable. It is hard to understand the frustration and discomfort of not having control of your health. And mine was getting worse in the name of drugs.

Finally, last year, I was put on the most expensive PsA drug out there: Stelara. One shot costs $20,000. I had to exhaust all other options before the insurance would cover it. It is a miracle. I have little to no psoriasis. My PsA pain was vastly better. But by now, I have lost a lot of my stamina. There is damage in my joints that will never repair. I need to have my one ankle fused but I refuse. I have damage in my spine and hips. But I had the best mobility with Stelara. I have been on it for a year.

Because of the elevated glucose, the Doctor put me on Januvia. Januvia passes sugar out the kidney. Not a smart choice for someone with kidney disease. He finally changed it and I am on a new drug which is not really working and my A1c has risen again. I got a note from the nurse from my doctor’s office saying, “the Doctor wants you to watch your diet. Eat less carbs and sugar.” I was so pissed and will say something when I see him.

I just went and had my blood tests done. I am in big trouble. My kidney function is now stage four CKD. There was a slight improvement since I retired, but not enough to put me back to stage 3. My blood pressure has been up and now I have awful cholesterol reading. It has jumped up 114 points in one year. My cholesterol has been normal most of my life.  Both the BP and cholesterol is due from the Stelara.  It is a known side effect.

So now what? I do not know. I see the doctor on Friday. I swear if he says it’s because I am fat I am going to walk out of the office. He usually is pretty good about things. I would have to be eating pure fat for that amount of increase. And, I don’t eat a lot of fat. I do not even eat meat. But I should not have to justify myself but I will be ashamed because that it the reaction I have. I will be made to be guilty of gluttony. Meanwhile, I have a situation that needs to be dealt with. When you have Factor V, the last thing you want is more reasons to have clots. And when you have high cholesterol, it also raises you blood glucose, which has been an issue with all the drugs I am on.

I feel out of control and I admit, very depressed. This was supposed to be a happy time for me since I retired. I will say that I am much more active than when I was working. I spend most days working on physical projects in the house. My mobility and stamina is much better.  I have noticed the difference. But I am scared that my recourse is to come off the Stelara, or take more drugs.  It is like being a prisoner in your own body.

 

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What is PsA and P?

Psoriatic Arthritis: PsA is an insidious disease. It is very misunderstood even by the medical community. It is hard to find a specialist who can really guide you. There is no cure and it is progressive. PsA has a partner, Psoriasis or P. They are not mutually exclusive. Each has their own issues and pathology. It is rare to have PsA without P but you can have P without PsA. Both are considered auto-immune diseases and often have other co-morbidities. All this is evidence based information.

And much like other diseases, they are triggered by stress and trauma. If you understand the ACE Study, it all makes sense why diseases like this are becoming more prevalent. It seems lately more and more people are being diagnosed with some form of chronic auto-immune disease. Is it because so many of the baby-boomers are of an age where disease is a common part of life? Or is it because there are more studies done and better research as to causes of crippling diseases in senior citizens.  I think it is both.

I have been involved in two research projects. One was for P and the other for PsA. The one for P was fascinating. They were looking for the correlation of outbreaks on the skin and stress. We were divided into two groups. One was given only exercise and nutritional information and asked to make lifestyle changes. Fortunately, I was chosen to go into the other group. We were going to be trained on Mindfulness Based Stress Reduction techniques. MBSR is now a more common approach for people dealing with issues such as pain. Back then, it was pretty new and out there. Jon Kabat-Zinn developed the program for people with cancer and pain.

The program was several months long. We met once a week. We talked about our week, our disease, anything we wanted. Then we meditated. Sometimes we did yoga. This was a several years ago. The instructor was the Chief MD in charge of the Oncology Department at the Medical Center. He was very progressive for the times. Now, there is a requirement that all med students take MBSR. Everywhere you look they are courses on Mindfulness and stress reduction of some kind. This is progress. But I live and work for a very large medical center that is also a teaching hospital, a university and a research institute.

But with all that, they still do not know much about PsA and P. We do not have a lot of doctors who are rheumatologist in the area. I am fortunate to have a good one. But even he will admit it is trial and error. And we have had some egregious errors. The course of action is to put the patient on a drug regiment which often includes steroids and progressively stronger biologics. Even the manufactures say there is high risk associated with their drugs. It is also known that they only work for so long and the body becomes immune to the drug. Then you have to start over.

In North America and Europe, between 18 and 42 percent of people with psoriasis, an inflammatory skin disease, also have psoriatic arthritis. In the United States, psoriasis affects about 2.2 percent of the population (7.5 million people), making it the most prevalent autoimmune disease in the US. (http://blog.arthritis.org/psoriatic-arthritis/psoriatic-arthritis-psoriasis/)

Nothing is more terrifying than knowing there is nothing you can really do to stop the progression of a disease that is ravaging your body. And there is nothing more frustrating as seeing the deterioration of your body and your ability to be independent. The medications all have side effects and some of them include cancer.

I have always had this disease. It got much worse when I went through my divorce. I believe the stress triggered the eruption on my skin. Doctors, including a dermatologist, could not diagnose why I had this rash everywhere because it did not look like “normal” psoriasis. It was though. I had always had issues with my joints, but was told it was because I was fat. But when my hands curled into claws and I could not hold on to anything, I finally was sent for testing.

PsA is possibly genetic. I had psoriasis as a baby but they called it eczema back then. You cannot catch PsA and P is not spreadable. There is no cure but you can put it into remission. I have been blessed to do that several times including right now. I have only a few skin lesions.

But from all the drug switching and the use of such powerful drugs, I have diabetes. My pancreas is whooped. My insulin levels are normal in the afternoon, but in the middle of the night they drastically peak. I am on medication now for it that adds a lot of weight….. Makes no sense because as you gain weight, you insulin resistance goes higher. The shot I am for the PsA also puts on weight and also increases your glucose levels significantly. It also causes high blood pressure, which is also not good.

But the main comorbid with PsA is actually coronary issues and kidney issues. The inflammation that causes the P and PsA also attacks the heart, arteries and other organs, especially the kidneys.  So far, I do not have coronary issues. However, my kidneys are in imminent danger of failing. Diabetes also impacts kidneys and so does high blood pressure. It is a circle of what is worse. Much like most auto-immune diseases, you do not die of the disease, but of the comorbidities.

I wrote this blog this morning because of a couple of reasons. One, people need to fight for better testing and more awareness of the PsA and P. The symptoms can vary as much as the way the rash presents itself. Two, we need better treatment that does not cause more issues than the disease. Three, we need more research as to see if there may ever be a cure for PsA and P and further studies related to trauma like the ACE study.

Fighting for my wellness

rolling fog

I am writing this morning for those who suffer with a chronic illness, especially one that is not widely known by lay people and the medical field. Psoriatic Arthritis is a crippling auto-immune disease that unfortunately I have. But that is not what this blog is about. It’s about advocating for yourself and you wellness, whatever the illness is. The fog is very heavy this morning outside and the grey engulfs the house like a wet shroud. It is peaceful but it reminds me of the travels I have had lately with the medical world trying to figure out what was going on with me. It is like traversing through a fog. I hope that someone who needs to know they are not alone will find solace in my words and the strength to fight on.

When I was first afflicted with this disease, no one would believe it was anything more than me being fat. I had very bad pain in my feet, lower back, and sometimes other joints. I played tennis at the time three times a week at a tournament level. It was nothing for a match to go three or more hours. Most times I would not hurt until afterwards, but then I started having back pain before the game. Stretching helped, but not much. My energy level also started to wane and simple tasks around my home would wear me out. After my divorce, the disease bloomed full on. The stress exacerbated everything along with another medical emergency. I can say that I went from occasional pain to constant in very short order. But no one would listen and the medical advice I got was to lose weight.

Funny thing, I did drop almost 35 pounds when I had the medical emergency but the disease still happened. I had recently switched to a new doctor after the one I had almost killed me with not letting me have a medical procedure I needed. Finally, when my hands started to turn into claws, they tested me. No one also correlated the funny rash that was appearing all over my body. It itched and it was everywhere. I went to the dermatologist and even he did not know what it was at the time. They thought hives possibly brought on by the stress of my divorce and move.

A year later, after the tests, the answer was psoriatic arthritis. The rash was a different form of psoriasis that did not present in the normal way of the white crusty patches. I ended up with that much later on in the disease progression. I had to make my doctor look past the weight and see the human. She was great afterwards and when I said this about that, she listened. She actually escalated my visit to the rheumatologist so I could have the help I needed. I have been with him for ten years.

Psoriatic Arthritis was so new (in the scheme of things) that there was little in the way of medicine. I was put on methotrexate (MTX) and prednisone. I felt better but after less than a year in, my sugar readings, my A1C, was 13. I never had high sugar before. I also was peeing blood constantly. I was having labs done but no one said anything until my appointment with my reheumy. He said my kidney crashed. I was then sent on a rotation of seeing specialists. I saw the most egotistical endocrinologist who said lose weight and a nephrologist, who said lose weight and an urologist who found nothing. The tests were pervasive and inconclusive. My reheumy put me on Enbrel. Slowly all my labs returned back to normal. Except my kidney function never was perfect again. My A1c went back to 5.6 and remained there for many years until slowly there was a creeping of it rising.

After year seven, the Enbrel started to fail. I then was put through two years of hell. My PsA started to flare out of control. My P was not so bad but was coming back. The first drug I tried was Simponi. I stuck with that for six months. My A1C kept creeping up and the diarrhea was so prolific, it changed my life. I will not go into much, but I learned to be very empathetic with those who have Crohn’s or IBS. My blood pressure began to be out of control. I told my reheumy I wanted off and he put me on Cimzia. Within the second shot, my glucose readings were 350 to 400. This is the shot that truly wrecked my ability to synthesize sugar. I went off everything for about two months. My BP returned to 127 to 70 and my A1 c went back down to 6.5 -7. Meanwhile, my PsA was not medicated and kept getting worse. I was also beginning to get covered in pustular psoriasis.

I had to let the drugs get out of my system and then we tried Otezla. This was supposed to be magic. It would possibly help me to lose weight. This was the worse of the worse. I felt like I was going to fall over at any minute. Walking was pure torture. It made the pain worse and I bloomed psoriasis like it was spring and I was a fertile field. Next was leflunomide. There was not enough time in between to get the old stuff out of my system before we put something else in. Then in July we tried Humira. I had tried it once before for a very brief time and it did nothing. I was hoping it would work this time.

This fall, after taking two shots a month, I had been on Humira three months. I was a mess. I knew I could not go back to the reheumy for a bit as he was getting frustrated with my inability to tolerate the drugs he was prescribing. This was a mistake on my behalf. I need to fight for a change again. But I was afraid, so I stupidly kept my mouth shut. I started taking potassium for the horrific leg and foot cramps I was having. I had one at work that had me crying in my office. Fortunately, no one saw me. By November, I was taking Advil every morning. I then added another dose at night. It allowed me to walk, but I was the walking dead. I slept an hour at the most, having to get up to pee or because of the pain. This went on for over a month. NO sleep, constant pain, itching so bad and in places no one should suffer with. I was a mess.

I had labs done and my kidney function was horrible. I stopped the potassium. I was not taking that much anyways but my potassium was a little high. My hemoglobin and hematocrit was in the dumper. It had never been so low. I have My Chart and can see my lab results. The graphs showed major increases where I did not want and huge deficits in my blood. My PCP said very little when I went to see him other than I was fat.  He actually said I should have bariatric surgery. I sat in his office in tears and thought, holy crap, I am back to square one.

Fortunately, a week later,  I went to my reheumy who thought differently. I was having mild chest pains, dyspnea, and my systolic BP was very high. He ordered cardiac tests immediately. I had an EKG, and Echo and a nuclear stress test. He said to stop the Humira and no Advil. I spent the holiday weeks in stress, in the hospital having tests and miserable. I had no strength, no energy, I could not walk, and I could not sleep. My skin was covered, my hair and scalp was awful, and I was crying every five minutes.

It is now about a month since my last shot. My skin is clearing. I have some energy and I can sleep much better. The itching was not from the P but from the Humira. I was having a very bad reaction to it. I went back to the PCP and made him pay attention to the blood work. He finally agreed that the issues, the elevated sugar and BP was from the drug, Humira. He said he thought so before, but he did not prescribe it. No, instead you just called me fat. I told him I was pissed but I did look into the bariatric surgery. I asked him if he knew that if you lose a lot of weight, and your skin sags, that they have to do more surgery and it is not covered under insurance. He smiled a sheepish grin and said yes, he knew. I asked if he knew the level of threat of that surgery for someone with a blood clot issue along with an impaired immune system, how prevalent sepsis was? Again, the sheepish grin…. Yes, he knew the risks but felt he had to suggest it. He has no idea how upset I was.

My BP has dropped forty points consistently. I bought BP meter for my home. My glucose is stable but still too high. The tests revealed that my heart muscle is healthy and strong. I told the cardiologist I am built and look like an OX! She laughed.  I had an ultrasound for the kidney and it too is clear. All of this horrific pain and suffering was from my not speaking up and getting off the Humira faster. I usually do a lot of research on each and every drug and vitamin I take. I did not check on Humira because I wanted to not be predisposed to the idea of side effects. This time I should have. There is clear clinical documentation of cardiac issues brought on by Humira. I was heading for a heart attack.

I am feeling so much better as the drug leaves my system. I just saw the PCP again because the blood work was still going down. He was concerned this time. He put me on iron and gave me a  B12 shot.  Finally.

My whole point of writing this long blog is for those who sit back and do not fight for the treatment you need. Everyone is different. I know many people who have issues with Enbrel. I had none for many years. Do not let the system kill you. If you something is not right, speak up to your Dr. They are not mind readers. If you say you feel like crap, explain it well so they can help. One thing I did not mention was I also requested lab work done monthly. I have to go anyways for my INR so I requested they add a CBC and other tests.  That was how I proved that there was a decline in my blood levels and a sharp decrease in kidney function indicating a problem. It was not enough to say I was tired and was peeing every two seconds. My reheumy added his tests and they indicated that my SED and CRP rates were extremely high indicating inflammation. My pain was truly getting worse. When you think about it, on average, a doctor has about twenty minutes to assess how things are (if you have a good doctor). Without your input, they have to go on what they know in general. Help them help you and do not worry about “what are they going to think?” They are going to think you are smart.