It has been an amazing month of standing as long as I like, forgetting I have my shoes on, walking up and down hills at the flower park, forgetting I have my purse on my shoulder and holding my camera with the heavy lens and flash unit on it without any pain. I have not felt this pain and fatigue free since 2009 and I have missed it! Mobic has been providing the extra relief in the last month. I am unsure if this drug can be taken long term. I stop taking it in another 6 weeks, so I am going to enjoy the pain free times while I have it.
In 6 weeks we will see if the 10 mg of Arava in combination with the Cimzia keeps me pain free. Also it will be warmer then and I could be pain free because of weather. Can Mobic be taken in the winter months only? For me this is the start of remission and hopefully with a few tweaks of drugs I will stay this way for awhile.
Seems like that is what my Rheumatoid Arthritis may be doing to my thyroid. Two out of three tests in the last year have come back hypothyroidism. I have also had symptoms of hyperthyroidism and some of the symptoms can be from the Rheumatoid Disease and the drugs, this makes it a little more confusing. According to PubMed Health hypothyroidism can be caused by “An attack of the thyroid gland by the immune system“, which is what the Endocrinology doctor believes is happening. We could start treating now or see if I can lose weight now that the Rheumatoid Disease (previously known as Rheumatoid Arthritis) seems to be coming under control and test again to see if I am in normal ranges again. So 10 days ago I started to watch what I am eating and going for longer walks to see if I can lose some weight. I have lost 5 lbs so far. Continue reading
This week I am lucky enough to get to get up really early to be at the Cedars-Sinai Imaging Center by 9:30 A.M. Tuesday and Wednesday for a Nuclear Thyroid Uptake and Scan to see what the thyroid nodule is doing. Also I have an order for X-ray of Cervical Spine, to take a look at the Flexion/Extension and check for Atlantoaxial Subluxation. A previous scan shows mild bony degenerative and spondylotic changes throughout my cervical spine. Lloyd says I cannot complain because doing the test will help us see what needs to be done to improve my health.
After a little search with the thing they call Google, I ran into this article “Rheumatoid Arthritis of the Cervical Spine Overview of Rheumatoid Spondylitis” and reading how different types of compression in that area cause death for 25-30% of patients and in outcomes that “10% of patients with rheumatoid arthritis may die from brainstem compression that is unrecognized before their sudden death” I will go with Lloyd’s suggestion that I am lucky and that we may be able to prevent or take care of issues early. But whenever I quote percentages on information I find online, Lloyd see it a different way. He says that 70-75% of patients do not get different types of compression or 90% of patients with rheumatoid arthritis do not die from brain stem compression.
But I look at this a little different, first it is just one website with information that I have searched about. What is the age of the data they are referencing? Who collected that data? How was the data collected? Above I just quoted the website but I have not verified the data. Most patients or bloggers do not dig that far into statistics on the data they are referencing. The only thing in the above quotes that concerned me was the word unrecognized. As a patient with Rheumatoid Arthritis I see many things that go unrecognized. This quote had the following reference “Mikulowski P, Wollheim FA, Rotmil P. Sudden death in rheumatoid arthritis with atlanto-axial dislocation. Acta Med Scand. Dec 1975;198(6):445-51. [Medline]“. My first thought is do 10% of Rheumatoid Arthritis patients still die from “unrecognized” brain stem compression like they were in 1975? Have doctors found symptoms to look for to help prevent this from happening in the last 37 years? Has treatment of Rheumatoid Arthritis improved so much that this is no longer an issue? To me there is always more to be researched and patients are lucky to have that thing called “Google” to use.
During a weekly online Rheumatoid Arthritis patient (online support group) through TweetChat which is on Sundays via TweetChat – #rheum at 12:00 P.M. PST this week Anetto mentioned this article Dr. Google is currently only medical student Google. This article discusses the use of Google by patients, how sometimes doctors disregard something a patient finds online and how patients disregard the recommendations of going to the ER to take care of the stroke or appendicitis they are going through. Why does reading go to the ER not as effective as hearing a doctor say go to the ER? It also discusses how the data aka listings on Google which are getting more reliable. I can agree that as search engines have evolved one of their goals has been to provide the users better data, trusted data. This has been happening for many years. When search engines first started ranking websites it was pretty easy to get that number one spot, in fact it was pretty easy to get the top 100 spots if a person wanted to which made the listings in search engines less reliable. Continue reading
Today was my first appointment with the Endocrinologist (gland doctor). I talked to two doctors, one inspected my throat area and they looked at recent blood tests and previous ultrasound of my thyroid. They discussed the nodule as being vascular which has blood vessels in it and a biopsy could lead to bleeding. We discussed symptoms I have been having from feeling like my body is on fire to feeling extremely cold, weight loss at 10 lbs a week during “flares”. To trouble swallowing, choking when I drink or eat at times during flares. Trouble breathing usually during the evening hours.
They decided to start by ordering better imaging and seeing what the thyroid is doing from what I understood. They also ordered more blood tests which I did before we left. As we were pulling out of the parking lot I received a call from their office. The imaging appointment had been setup, it is a two day test and I must not eat any seafood for 7 days prior to the test.
Day one I will go in at 9:30 a.m. and take a pill around 10 then wait 4 hours and go in for the images. Then I will head home for the night probably around 4 p.m.. The next morning I go in at 9:30 for images again. Sounds fun right? I do this in about a week, then go back for results around mid August.
It seems pretty common to see other RA patients that have a long list of diseases and medications listed in their forum signature. Sometimes the symtoms of the multiple diseases commingle, making it hard to know what is causing the issues. Sometimes while talking to other RA patients we discover we have some of the same symptoms that we have not discussed or mentioned to anyone. That happened to me this past week on Twitter while discussing in direct messages some symptoms with another patient who is currently having thyroid test done as well. The symptom we discussed was the feeling of our tongues stiffening at times. We did not go into more details but I will explain how it happens with me.
At times I have felt like my body was on fire and during those times I usually lose weight quickly. But also during those times sometimes I get so cold that my body will not stop shaking (hard shivering) and it just seems to get worse until it feels like the back of my tongue is stiffening up or getting hard. I have found if I get myself under blankets I slowly start warming up and the coldness stops. Both being overheated and severely cold are very scary. These symptoms are usually happening during a hard flare, for me the last time was during a hard shoulder flare in January when I had trouble with the weight of my head causing increase pain (see Bad Week, Hard Lessons). But the feeling of being extremely cold happens less for me than the feeling of my body being on fire.
So here I will try to list the symptoms I have or have had since December of 2003. How many of these symptoms have you had? Continue reading
Yesterday I went back to the Rheumatologist to get results of my blood tests and to have an ultra sound done on my thyroid. We went over the Vectra DA blood test, which I scored a 33. This means my Rheumatoid Arthritis aka Rheumatoid Autoimmune Disease is at a moderate level with the current cocktail of drugs. I will be having another one in three months to get a new number. It looks like anything above 44 is high activity (severe) and under 29 is low or mild activity. It sounded like the goal is to get it under 10. You can find more out about the Vectra DA test on their website. Vectra DA does have a program in place for financial assistance. For an example a single person having an income less than $54,450 a year could qualify.
Most of my other blood test came out good. Rheumatoid Factor still negative, no TB, no hepatitis, no lupus, anti-CCP negative, Cholesterol good, etc. The bone denisty test was good also.
The tests that were not good were:
Vitamin D issue fix will be to add a Vitamin D supplement at 2,000 IU a day to my cocktail. Also adding an Omega 3/6/9 supplement. and I have a refill for the Flexeril which was added to treatment at my last appointment 2 weeks ago. It has taken that much time for me to get used to the muscle relaxers and it does take 3 a day at 10 mg to be almost pain free. I have not been this pain free since fall of 2010 so it is a nice change.
I am not sure what the lipid or thyroid study or the CRP Hi Sensitive means. Maybe the thyroid is off because of the nodule on it? After finding out the blood test results I had an ultrasound done on the thyroid and she also did I think it was called an ECG but not sure. I will get those results in 2 weeks. She did ask if my previous scan reports gave a size of the nodule, I did not remember a size mentioned for it only the size of lymph nodes that are swollen. She said it should be checked every 6 months to make sure it is not growing. But nodules in the thyroid can happen with Rheumatoid Arthritis. She noted that besides the nodule in the right lobe of my thyroid that I had a very tiny cyst on my left lobe and that my heart looked good.