Thinker's story
I first had symptoms of inflammatory arthritis 10 years ago while I was pregnant with my daughter, I would have morning stiffness which was relieved by movement, not rest and was having a lot of back pain at night and difficulty walking when I would first get up. I got a referral to a rheumatologist when she was about 6 months old and he diagnosed me with seronegative spondyloarthoparthy and prescribed anti imflammatory medication. I didn't want to take medications as I was still nursing, so focused on losing weight and exercise and felt better the next several years. Over the past couple years, I started having more symptoms of fatigue and low grade overall arthritis. I also developed chronic sinus problems and had surgery to fix a deviated septum and straighten a previously broken nose as a child 7 years ago. It helped initially, but the sinus probems slowly started to worsen again, but I did not connect the two symptoms at the time. A year ago, this past spring, I asked my primary care provider for another referral to a rheumatologist for symptoms of fatigue and morning stiffness and arthritis, and dry eyes and mouth. She checked my rheumatoid factor, which was mildly elevated, so made a referral through our HMO insurance. I got in to see a rheumatologist in August, he ran blood work tests, and took xrays, and prescribed Mobic. He told me when I went back for a recheck that the tests did not show anything specific. I told him the Mobic was making my heart race so would just take Aleve as needed. He said he would not pick me up as a patient, but could come back if needed. Meanwhile, in the Fall, I started developing roaming severe joint pain which would cause extreme pain in a joint for a day or two, to the point where I couldn't move it, then go away as if nothing happened. I made an appointment with the same rheumatologist, told him my new symptoms and concerns, and he looked at me as if I was crazy and and had never heard of symptoms like this before. He told me I had tendonitis and that he could inject my joint. I told him that I was a physical therapist, and that I knew what tendonitis was, and that was not what I had. I said I didn't want an injection of cortisone as the joint paint would only last a day or two, then be gone like nothing ever happened. He didn't do any other testing, just said he could send me for a lip biopsy so rule out Sjorgens syndrome but that it was an invasive, painful test so I decided not to have that done. A month or two after I saw him, I was researching arthritis and autoimmune symptoms online and discovered that there was a condition called migratory arthritis and that it was roaming joint pain like I had and I thought, hmm, I am not crazy and this condition really does exist. Then, in the Winter I developed symptoms of Raynauds Syndrome in both hands. I was very concerned as I was still having the migratory arthritis and morning stiffness and fatigue and worsening dry eyes and mouth, and this was another autoimmune symptom. So I called the rheumatology office to make an appointment and asked to see a different rheumatologist. I was told I could not change rheumatologists so made an appointment with "Dr. Arrogant" again. My neighbor told me I should take a picture of my Raynauds in my hands on my smart phone so he would believe me. So I saw him for an office visit, told him about the new symptom of Raynauds in both hands, and also a list of all my previous symptoms. He was not not concerned at all and told me I shouldn't be concerned either. He didn't do any more testing, but did refer me to the "dry mouth dentist".
Meanwhile, starting in the Fall, I started having more sinus problems. I was getting nosebleeds, and what I now realize was crusting and bloody mucus. I just thought my sinus problems were getting worse and would possibly need another ENT referral and sinus surgery but wanted to wait until summer to have anything done. I also thought my sinuses were dry so got a vaporizer for my bedroom. I had been doing the Neimed sinus rinses for the past couple years, so just did them more frequently, flushing out my sinuses daily. I also started having more problems with earwax and had to have it removed at the doctors office. In the Winter, I also got an antibiotic for a sinus infection. In April, my left ear became blocked, my primary care provider moved out of state, so I saw a different doctor the beginning of May. He told me to take Mucinex which really didn't help. I was trying to get a new internal medicine doctor as a primary care provider, but the wait time for new patient appointments was 3 months. So, when my left sinus and ear got worse the middle of May, I saw another different available doctor at the clinic who diagnosed me with an ear/sinus infection and prescribed Augmentin. When I started the antibiotic, I really started to feel worse, and I thought I must have a really bad sinus infection. I felt like I had a very bad flu and started having a lot more joint paint and body aches and fatigue. From the middle of May to the end of May, I really started to decline physically, to the point of having a lot of difficulty going up and down steps, so went back to the clinic when I finished the antibiotic and saw a nurse practioner. She checked my ear, said it was still red, and put me on another different antibiotic. A couple days after taking this, I developed a rash on my leg and my left eye was red, painful, and blurry, so my husband took me to the emergency room Saturday morning. The emergency room doctor told me I had the symptoms of untreated Lyme Disease so took a blood test and changed my antibiotic to Doxycycine. They weren't too concerned about my eye, but as I was worse on Monday, I made an appointment with the opthamologist. They were very concerned when they saw my eye. The diagnosed me with anterior uveitis, and said I did not have dry eyes, that this inflammation had been there for some time. They put me on strong steroid drops, said Lyme disease could cause uveitis, and made a recheck appointment for Friday, and would help me get a referral to an infectious disease doctor or rheumatologist. I specifically told them I did not want to see the same rheumatologist I had seen before! At this point physically, I got so bad and had such severe joint pain, that I had to start using a walker to walk, my husband got me an elevated toilet seat and lift chair because I had so much difficulty sitting and standing up. On Friday, at the eye recheck, my eye was much better, but my Lyme test came back negative, and that it was probably something autoimmine, so they made their referrals, and told me I really also needed an internal medicine doctor as opthamologists, they wouldn't be able to diagnose me but could treat my eye. That weekend I got worse and was so miserable, my husband took me back to the emergency room. I figured that if the steroid eye drops helped my eye so much that a systemic steroid would help me feel better so I basically told the ER doctor they either had to prescribe me steroids or put me in the hospital. He did prescribe 60 mg prednisone taper as a short term solution until I could get into a doctor to diagnose me. By the way, that was my 50th birthday, so I got prednisone as a birthday present! Early that Monday morning, my husband asked his internal medicine doctor, (who is excellent, and is also his friend) if he would see me. I had an appointment to see him that morning, but didn't make it as right after I took a shower, I felt like I was going to pass out and the sensation wouldn't go away. Since I was home alone with my 10 and 13 year old children, I called 911 and the paramedics came and my blood pressure was dropping every time I stood up. So I got a ride in the the ambulance to the emergency room again, where they stabilized me with fluids and prednisone and sent me home with an appointment with Dr. Rudy (my husband's internal medicine doctor) the next day Tuesday. Tuesday Dr. Rudy and his resident (teaching hospital and clinic affiliated with the university) spent 3 hours examining me and ordered numerous blood tests and made referrals for other testing and specialists. I did tell them at my appointment that I had been doing some research online that past weekend when I realized it was not Lyme Disease and some type of autoimmune disease and when I read about Wegeners Granulomatosis, I thought to myself "Oh my gosh, that is what I have." They told me there was a blood test and they would do that one also. They took 12 tubes of blood so they were ruling out and checking for everything.
Four days later, on Friday morning June 13, Dr Rudy called me that one of my tests came back positive and that rheumatology would see me that day. So I wasn't too surprised when I saw the rheumatologist, that she told me my ANCA test was positive, and gave me a diagnosis of Wegeners based on my clinical history and findings. At this point, even though it was not a good diagnosis, I was just happy to get diagnosed, and be able to try treat the disease and feel better. They upped my prednisone to 80 mg, and said they would need to run some more lab tests to check for underlying infections prior to putting me on cycylophosphamide since it completely suppresses your immune system and sent me home. Unfortunately, my TB test came back nonspecific, so had to do another test which delayed starting the cycylophosphamide for another week. I was just about to start it, when my labs showed my kidney function had dropped by 50% with my creatinine at 1.57, so they put me in the hospital July 1-4 for the 3 day 1000 mg bursts of prednisone and a kidney biopsy. My last labs on July 9 showed creatinine at 1.32 so kidneys are thankfully improving.
So far, the Wegeners affected my left eye, ear, sinuses, caused neuropathy in both legs and hands, and kidneys. I'm currently taking 150 mg cycylophosphamide, 65 mg prednisone tapering down by 5 mg per week, Prilosec, calcium/vitamin D supplement, Dapsone. I am feeling better and no longer have the severe joint pain, and only use a cane now for walking outside (mostly because of the neuropathy). I still am weak and debilitated and fatigue easily. I think it will take several months to regain all my strength but at least I can drive again and am feeling better. I live in a 2 story house with a basement and steps are still tiring but getting better. An ENT checked my sinuses and again thanfully, I don't have any damage, and at my last opthamology recheck she found only 2 inflammation cells so that is improving also. My left ear is no longer blocked with no hearing loss. So far I haven't had any involvement with my lungs. So the neuropathy and kidneys are the two areas which hit me hardest. It seems everyone that gets this disease is affected differently.
So now I am trying to adjust to living with a chronic disease which I will have to manage for the rest of my life and adjust to a new normal. It seems the hardest part is that this disease is so unpredictable and you have to expect the unexpected. But, as I am feeling better, I can see the light at the end of the tunnel, and while I would love to have a medication free remission, if I have to take a low dose maintenance drug for the rest of my life to lead a relatively normal life, well, that's just how it will have to be and I will adjust to it, as many other people have. I got a lot of good and helpful information from this group right after I was diagnosed by searching the forums, and hope telling my story will help others also.
Karen
We must let go of the life we have planned so as to accept the one that is waiting for us.
Joseph Campbell
When sleeping women wake, mountains move.
Chinese proverb
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Originally Posted by lag713
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