Thursday, January 21st, 2010
The past 6 months have been somewhat like a bad dream. I never could never have imagined being sick for this long with so many different ailments. I can’t help but wonder if all the years on methotrexate had such an effect on my immune system that everything kind of shut down for a while. With all this down time I have had the opportunity to learn somethings about myself. I thought I would share some of what all this sickness has taught me.
- Trust your instincts. When two of my doctors had conflicting opinions on whether or not I had a second or continuing Lyme infection I should have trusted my instincts. I could have saved myself valuable time and pain and not have subjected myself to way too many diagnostic tests had I just trusted my gut. I know my body better than anyone else and I knew that I still had Lyme Disease. I shouldn’t have allowed my rheumatologist to talk me into more tests to prove that her opinion was right when I knew deep down inside all I really needed was another treatment of antibiotics. When I finally got the antibiotics was when the symptoms went away and I started to feel better. Lesson learned. Again. I hope this time it sticks.
- Lyme Disease is something to take very seriously. I have had Lyme Disease in the past. I thought that I knew and understood what this disease could do. I could not have been more wrong. I have never in my entire life felt more physically ill than I did with Lyme Disease. I can’t say whether or not the Rheumatoid Arthritis (RA) had an effect on the severity of the Lyme Disease but I know that the treatments for the RA had an effect on how well my body was able to handle Lyme Disease.
- I need to nourish my body and my soul. I have always been the one who puts everyone’s needs before mine. It wasn’t a conscience decision, but none the less other things took priority in my life. Now every day I am slowing down and taking time to do things that nourish my soul. Things that bring me joy nourish my self. I find that I have more patience and energy for other things after making my self a priority. Before I put anything into my body I am asking myself will it nourish me or fill me. They are two very different ideas. I have tried to eat responsibly in the past, but I haven’t always looked at what I am putting into my body as nourishment as opposed to something that will fill me up.
- Don’t be afraid to ask for help. Being an independent person and a bit of a control freak I frequently would rather do something myself than ask for help. Part of me just didn’t want RA to get the best of me. I felt like it was a bit of a battle of wills. I wasn’t going to let RA take over my life completely, I could do most things myself and I hated to ask anyone for help. Being as sick as I have been, I have had no choice but to ask for help. There were days when getting out of bed to go to the bathroom was an ordeal. An extremely painful ordeal. It was simply impossible not to ask for help with some of the most basic of needs. I discovered that the world did not end and it was okay if things were not done “my way”.
- A clean is nice but really not all that important. I used to care very much about how clean my house was. I felt that how my house looked was a reflection on me and how I cared for my family. I know that sounds a little nutty but that is how I felt. I really felt like I could not physically do a great many things anymore but I could take care of my family and a clean house was part of that. Of course now looking back I can see how crazy that whole idea sounds. My house currently is picked up. No one is going to trip over anything in my house, but it is a far cry from clean and I really don’t care. I could spend the next few hours cleaning, or I could spend the next few hours playing with Kevin or reading a good book. Now I choose something that will fill me up instead of depleting my resources.
- Connecting with other people that know and understand what it’s like to have RA is important. Knowing that I am not alone in the day to day challenges that this disease brings has helped me in so many ways. There is comfort in knowing that there are people out there that completely understand what I am going through. I am very grateful to all the new friends that I have found here and for their kindness and support.
Tags: ailments, antibiotics, arthritis, body, diagnostic test, disease, infection, lyme, lyme disease, methotrexate, nourish, RA, rheumatoid, rheumatoid arthritis, rheumatologist, sick, soul
Posted in Autoimmue Disease, Coping, Decisions, Lesson Learned, Rheumatoid Arthritis RA, Solutions, Spirit, Wellness | 10 Comments »
Monday, September 28th, 2009

Over the past several months I have received comments that I think need to be addressed in a much longer format than a comment response. The comments are related to treatment options for rheumatoid arthritis and which treatment is best.
We are fortunate enough to have many options available to us today to manage our rheumatoid arthritis (RA). Traditional medicine offers everything from NSAIDs (Non Steroidal Anti-Inflammatory Drug) like Advil and DMARD s(Disease Modifying Antirheumatic Drugs) such as Plaquenil, Arava, Methotrexate, Gold, and Cyclosporine to biologics like Remicade, Enbrel and Humira. There is a growing trend toward alternative medicine as a solution to deal with this disease. Each option has its benefits, risks and side effects.
NSAIDs are a class of drug that are used primarily to treat inflammation and mild to moderate pain. These medications vary in potency and include the brand names Advil, Motrin, Naproxen, Anaprox and Celebrex. Between 10% to 50% of patients are unable to tolerate NSAIDs because of their side effects. These side effects include upset stomach, stomach pain, and diarrhea. About 15% of people on long term NSAID treatment develop ulcers of the stomach and/or the duodenum.
DMARDs cover a variety of different of drugs. Anti-malarial drugs such as Plaquenil (Hydroxycloroquine) are considered a DMARD and were initially used to treat malaria. It was discovered to help arthritis when patients noticed an improvement in their arthritis symptoms while taking plaquenil for malaria. Plaquenil effects the immune system but doctors do not know how it works for rheumatoid arthritis. Arava (leflunomide) interferes with genes in developing immune cells. When taking Arava, liver monitoring for toxicity is required. You should not take this drug if you are planning to get pregnant or are currently pregnant because of birth defects. The most common side effects for patients taking Arava are rash, nausea, hair loss, liver enzyme elevation and anemia. Methotrexate is a chemotherapy drug that initially was used to treat acute leukemia. Methotrexate (MTX) has become the gold standard for treatment of rheumatoid arthritis (RA). Methotrexate interferes with the growth of cells in the bone marrow. The most common side effects from methotrexate include stomach upset, hair loss, diarrhea, and mouth sores. Folic acid is given while taking this medication to reduce the side effects. Liver function monitoring is necessary to watch for toxicity. Methotrexate should also not be taken if you are pregnant or planning to get pregnant. Injectable Gold has been shown to improve symptoms of rheumatoid arthritis however toxicity is common and constant monitoring in necessary. Side effects include rash, diarrhea, conjunctivitis and marrow suppression. Cyclosporine is a medication that is used primarily for the prevention of rejection of transplanted organs. It is effective for the treatment of rheumatoid arthritis because it stops an overactive immune system from attacking the joints. Side effects can be severe and include hypertension, kidney problems, headache, nausea and diarrhea.
Biologic response modifiers (biologics) are the latest treatment option for rheumatoid arthritis pain and inflammation. They work by blocking the tumor necrosis factors(TNF) components of the immune system. People with RA have too much TNF in their bodies and it overwhelms the immune systems response to inflammation. Biologics such as Enbrel, Remicade and Humira are genetically engineered proteins that binds to and deactivates the TNF molecules before they can do damage. The risks in taking this class of drug include serious infection including sepsis and tuberculosis, nervous system diseases such as multiple scholosis, allergic reactions, lymphoma and congestive heart failure. Because these drugs are fairly new their long term side effects are not known.
There has been much debate on the effectiveness of complimentary and alternative treatments options for rheumatoid arthritis. These treatments include GLA (Gamma Linolenic Acid), DHA (Docosahexaenoic Acid, Tai Chi, herbal supplements and acupuncture. There are many more complimentary and alternative treatment options that will be discussed in future posts.
GLA (Gamma-linolenic Acid) is an essential fatty acid found primarily in plant oils. It is found in borage oil and black currant seed. In preliminary testing it has shown to reduce morning stiffness and swelling however studies have been small to date and additional research would provide more information. DHA (Docosahexaenoic Acid) is an omega 3 fatty acid found in cold water fish. Several studies have shown that DHA reduces inflammation but not the progression of the disease. The movements of Tai Chi improve strength, flexibility and balance. There is no indication that Tai Chi effects the progression of rheumatoid arthritis. Acupuncture in thought to stimulate the release of chemicals called endorphins that block pain. Acupuncture is very effective in treating chronic pain like that in rheumatoid arthritis. The list of supplements as an alternative solution to conventional medicine for the treatment of rheumatoid arthritis include vitamin E, MSM, copper, manganese, vitamin C, selenium, zinc, bromelain, ginger, turmeric and boswellia. These alternatives have proven to help in inflammation and in some cases joint damage.
The benefits of using conventional medicine for the treatment of rheumatoid arthritis are that knowledgeable doctors using this method are readily available and the medications work for many people. These medications have significantly improved the lives of many with rheumatoid arthritis. The downside to this treatment option is the side effects can vary from mild to severe and some long term effects are not even known.
The benefits to choosing an alternative medical solution for the treatment of rheumatoid arthritis is that the side effects to these treatment are few and are less damaging to the body. The disadvantage to complimentary and alternative treatments are that finding a qualified medical professional that can help guide you through all the options available can be a challenge and there is debate on whether or not they can help with joint damage.
Ultimately the choice for a treatment option is a personal one. What matters is what works for you. Everyone has their own body chemistry. What works for one person may not work for another. The advantage that we have today is that we have options, many options, and if something is not working for us we can try in another direction until we find our own solution. It is not up to me or anyone else to decide what is best for you and your body. Trust yourself to figure out what is best for you.
Tags: acupuncture, advil, ananprox, anemia, Arava, arthritis, black currant oil, bone marrow, borage oil, boswellia, bromelain, celebrex, chemotherapy, congestive heart failure, copper, damage, DHA, diarrhea, DMARD, Enbrel, folic acid, ginger, GLA, gold, hair loss, headache, Humira, hypertention, immune system, joint, kidney, leflunomide, leukemia, liver enzyme, lymphoma, m, manganses, methotrexate, MSM, multiple sclerosis, naproxen, nausea, NSAID, plaquenil, pregnant, RA, rash, Remicade, rheumatoid, rheumatoid arthritis, selemium, Tai Chi, toxicity, tuberculosis, turmeric, vitamin C, vitamin E
Posted in Autoimmue Disease, Coping, Decisions, Diet/Nutrition, Good News!, Health/Fitness, Lesson Learned, Rheumatoid Arthritis RA, Solutions, Wellness | 10 Comments »
Friday, July 17th, 2009
The results of a recent study published in the Annals of the Rheumatic Diseases indicate that the drug methotrexate (MTX) appears to be safe for long term treatment of rheumatoid arthritis. This conclusion was based on data collected from 88 studies that involved patients treated with methotrexate for at least 2 years.
Methotrexate is classified as a disease-modifying anti-rheumatic drug also known as a DMARD. Methotrexate had been used to treat psoriasis and cancer prior to its approval by the U.S. Food & Drug Administration in 1988 to treat rheumatoid arthritis. It is also used to treat other autoimmune diseases including ankylosing spondylitis, psoriatic arthriis, lupus and vasculitis. It can take from 6 to 12 weeks to feel the full effect of this medication. Taken once weekly via either 2.5 mg tablets or self injection, methotrexate blocks certain enzymes that affects the production of folic acid which is necessary for growing cells. Therefore it is necessary to take folic acid suppliments while on methotrexate.
It is important to avoid drinking alcohol while using this medication because of the increased risk of liver damage. Methotrexate can cause abnormal liver function so it is necessary to have blood work monitoring done every 8 weeks. The 88 studies concluded that 13% of people taking methotrexate experienced elevated liver enzymes however only 3.7% had to stop using the drug due to liver toxicity. Other side effects include nausea, vomiting ( may be based on the dosage), mouth sores, rash, diarrhea, blood count abnormalities, persistent dry cough, unexplained shortness of breath, cirrhosis of the liver ( rarely), gradual hair loss, and sensitivity to sunlight. Some over the counter and prescription medications may increase the toxicity of methotrexate so it is important to check with your doctor or pharmacist before taking any additional medication. Methotrexate can cause birth defects and can cause complications during pregnancy. It should not be taken if you plan on starting a family.
Patients in the study experienced side effects but usually mild. Methotrexate rates of discontinuation were less than gold, sulfasalazine and penicillamine but more than plaquenil in this study.
Of the 88 studies only 2 assessed the relationship between methotrexate and cardiovascular disease. One study concluded that there was no increased risk of cardiovascular disease, the other suggested that there may be a reduced risk. There was no increased risk of infections linked to methotrexate.
Tags: ankylosing spondylitis, arthritis, autoimmune, disease, inflammation, lupus, medication, methotrexate, psoriatic arthritis, RA, rheumatoid, Rheumatoid Arthritis RA, symptoms, vasculitis
Posted in Autoimmue Disease, Good News!, News, Rheumatoid Arthritis RA, Solutions | 4 Comments »
Saturday, April 18th, 2009
The warmer weather is on its way and it is the perfect opportunity to get outside and grab some rays.
The best source of vitamin D in sunshine. In just 15 to 20 minutes per day outside in the sun your body will absorb all the vitamin D it needs for the day. But beware some RA medications like methotrexate make you more sensitive to the sun. And steroids interfere with absorption of vitamin D. The best time to get the maximum benefit is when the sun is directly overhead. It is not necessary to get all 15 minutes at the same time . You can split up the exposure to 5 minutes, 3 times per day to get the same benefit.
The human body manufactures vitamin D when exposed to the sun. It also can be found in certain products such as milk fortified with vitamin D. It is also found in fish, eggs and cod liver oil. Vitamin D is essential for promoting calcium absorption for healthy bones. Vitamin D has been shown to reduce inflammation and regulate immune function.
The recommended daily value of vitamin D for both women and men under 50 years old is 200 IU ( international units ), 400 IU for those 51 to 70 and 600UI for 71 and older.
Tags: arthritis, immune function, methotrexate, rheumatoid, steriods, sunshine, vitamin D, vitamins
Posted in Diet/Nutrition, Solutions, Wellness | 2 Comments »
Friday, March 27th, 2009
RA has forced me to learn to be patient. I have had to be patient with my medication and with my body. Patience in doctor’s offices, waiting for test results, and for prescriptions to be filled has been a difficult lesson. I wish I could say that I readily accepted the fact that my life was changing and that I would need to become a patient person to deal with all that lay ahead. That was not the case. I spent a lot of time just being aggravated that things took me so long to finish, or that the meds I am on were taking forever to start to work.
Some lessons come easy and some don’t. Becoming a patient person has not been easy for me. RA has given me no choice. It took almost 2 months before the methotrexate started giving me some relief from the pain and stiffness. The very last thing I wanted to hear from my rheumatologist was to be patient and that many RA medications can take from several weeks to several months to take the full effect. I wanted to take a pill and be better. Wasn’t that why I was going to the doctor in the first place? I wanted him to make me better NOW not 2 months from now. I don’t know why I was so dense about the whole process. I have watched my mother for years deal with these issues. I guess I thought I would be different.
I spent a lot of time feeling frustrated because I could not control the basics in my life. I could no longer just finish a project in what I felt was a timely fashion. Each project needed to be done gradually so that I would not over do things and be out of commission for several days recovering. At some point I had to accept that my body has limitations now. I have to do things differently and that means I have to be patient. Things take longer now. Because repetitive motions can be painful, I can do some and then I need to rest a bit. Because staying in one postition too long can be painful, I need to sit for a while and then get up and move around.
I have chosen to be patient now and accept that my life is going on a slower path than I had planned. I do not want to waste any more energy on something that is completely futile. I think that somewhere along the way I had to give up trying to control things and just trust that there is a reason for all things and with patience I will understand what that is.
I think that Brian Adams put it beautifully…
“Learn the art of patience. Apply discipline to your thoughts when they become anxious over the outcome of a goal. Impatience breeds anxiety, fear, discouragement and failure. Patience creates confidence, decisiveness, and a rational outlook, which eventually leads to success.” -Brian Adams
Tags: arthritis, Brian Adams, medication, methotrexate, pain, RA, rheumatoid
Posted in Decisions, Solutions | 4 Comments »
Monday, February 23rd, 2009
Rheumatoid Arthritis has forced me, whether I like it or not, to become more patient; with myself and my medication. When you are hurting and want relief the last thing you want to hear is to be patient. Unfortunately that is exactly what you need to do with many RA treatments. Methotrexate (Rheumatrex, Trexall) starts to work faster than the other DMARD’s (Disease Modifying Anti-Rheumatic Drugs) in about 3 to 6 weeks. Hydroxychloroquine (Plaquenil) originally used for the prevention of malaria can take up to 6 months to reach the full effect. With Sulfasalazine (Azulfidine) symptom relief can take up to 3 months. Gold (Myochrysine and Solgana) injections take 3 to 6 months before they have an effect on symptoms. The class of drugs known as biologic DMARD (Disease Modifying Anti-Rheumatic Drugs) include Enbrel, Remicade, Humira, Kineret, and Orencia. These medications can take from several weeks to several months to achieve the full effect. Some of these medications are taken in conjunction with one another, so that may influence the time it takes to start feeling improvement. If you are not seeing or feeling results from your current course of treatment, discuss it with your rheumatologist.
Tags: DMARD, Enbrel, gold, Humira, Keneret, medication, methotrexate, Orencia, plaquenil, RA, Remicade, Rheumatoid Arthritis RA, sulfasalazine, treatment
Posted in Solutions, Wellness | 1 Comment »