Saturday, February 11, 2012


Its been more than 3 weeks now since introducing a Paleo type diet into my life style. The big thing, I believe is dropping the grains, I have not lost any more weight in the past week, but I haven't gained any either. My joint pain is reasonable and seems controlled now, I've had 6 doses of Enbrel so far. I have labs for the rheumy at the end of the month, and will also have to talk with my PCP about labs thru her office. I have a PCP appointment early in May, and then the Endo at the end of May. That much time should give my lifestyle changes a chance to be reflected in my lab results.

Tuesday, January 31, 2012

Forward to last year

Today is Tuesday, in two days I will take dose #5 of Enbrel. Other than my hands, I am back to where I was 6 months ago. I can function well enough, but my hands hurt every morning. Morning stiffness is a common complaint of RA suffers, but the issue is how long does it last each day. I had an appointment with an Endocrinologist, my A1C was 6.8, within normal limits, but high. Normal is less than 7.0 My total testosterone was 400, I almost wanted it to be lower, than I might have a reason to blame all recent events on, but it is at the low end of the range. So, with dangerous Triglycerides, high blood pressure, and low 'good' cholesterol, I have spent way too much time reaserching diet in the past few weeks. About two weeks ago I started making some serious lifestyle changes, and I am now a Paleo man. I have stopped eating grains, I sure did eat a lot of cereal, breads and deserts. I also had stopped dairy several years ago. Adding to the list, no more soy, its estrogenic, and I am trying to increase my testosterone, there is a fair amount of health issues related to low 'T', and all the ones I just mentioned are related. I had heard it before years ago from my PCP, but the Endo also mentioned Metabolic Syndrome. I am hoping a few more supplements, and losing weight will shake this problem up. I am down almost 14 pounds from my all time high, lost about 6 pounds since quiting grains. Did I mention I also quit beans(legumes), I am now eating only fruits, veg, and good meats. I have been reading more recently about Saurkraut's health benefits, I continue drinking Kefir daily. Here are some resources for fermented foods.

Monday, January 23, 2012

Enbrel Week 3

I am completely over my (3 month) upper resp infection, and my pain has also decreased quite a bit. I read that the Enbrel can work in as little as 2 weeks with RA patients who are currently taking Methotrexate also. I am seeing the Rheumatologist in two days, hard to get anything extra out of him. I wonder if the RA flare, was related to my picking up the URI (upper respiratory infection), when the bug went away, the flare improved. Or was the decrease from starting the Enbrel. In the end, I am not upset at starting Enbrel, that and the cortisone injection into my Left middle finger stopped the contracture. I can now move all my fingers, although some days the morning stiffness continues through out the day. I hope that my progress can allow me to shift over to the Enbrel, and then decrease/stop the Lefunomide (Arava), they are both TNF meds, if I can drop the Arava, maybe I can have a beer someday. Here is the Wikipedia description of a TNF med: Tumor necrosis factor-alpha (TNF-α) is the best-known member of this class, and sometimes referred to when the term "tumor necrosis factor" is used. TNF-α is a monocyte-derived cytotoxin that has been implicated in tumour regression, septic shock and cachexia.[2][3] The protein is synthesized as a prohormone with an unusually long and atypical signal sequence, which is absent from the mature secreted cytokine.[4] A short hydrophobic stretch of amino acids serves to anchor the prohormone in lipid bilayers.[5] Both the mature protein and a partially processed form of the hormone can be secreted after cleavage of the propeptide. Unfortunately, you note the mention of hormones/prohormone, I have been concerned about my Estrogen level for some time,(based on symptoms)and am concerned I have Estrogen dominance. Could be age related, my weight (I could lose 15 pounds), or related to my RA drugs. I have an appointment tomorrow with an Endocrinologist, will see if he is willing to test and treat me.

Friday, January 6, 2012

Well, picked up the Enbrel samples yesterday morning. I reviewed the directions, and gave myself the first shot, no problem. I still have some contraction in my L middle finger, but the cortisone injection seems to be working, it still is slightly bent and stiff/painful, but improving. Its only been 24 hours since the first injection, so I won't know for a while if it will help or not. It is suggested that onset of benefits takes 3 weeks to 2 months. Checked online for info, Enbrel has a 9> year history. Found this article: Enbrel first biologic with up to 9 years rheumatoid arthritis safety, sustained efficacy data THOUSAND OAKS, Calif., November 12, 2006 -- Amgen (NASDAQ: AMGN) today announced that Enbrel? (etanercept) is the first biologic with published data to show improvements in multiple measures of efficacy that were sustained in rheumatoid arthritis (RA) patients completing up to nine years of therapy. These new data are being presented at the American College of Rheumatology (ACR) Scientific Meeting in Washington, D.C. "The current data in Rheumatoid Arthritis suggest that Enbrel is both effective and safe in long-term use," said Mark Genovese, M.D., Stanford University Medical Center, Palo Alto, California. "These findings are significant because they provide a degree of reassurance to both the patient and the physician that unexpected safety concerns do not appear to be developing after nine years of use." ENBREL continues to have a strong safety profile for extended periods of use. In the studies presented at ACR, rates of serious adverse events and serious infections remained low and were consistent with controlled portions from the double-blind phases of the studies. The overall number of observed malignancies (excluding nonmelanoma skin cancers) were similar in type and number to what would be expected in the general population. Additionally, data showed that 77 early rheumatoid arthritis (ERA) and 280 long-standing rheumatoid arthritis (LRA) patients who completed ENBREL treatment for up to eight years experienced substantial improvements in their ACR scores. Additionally, 73 LRA patients who completed ENBREL treatment for up to nine years experienced similar improvements. ACR scores are a composite measure of improvement in RA symptoms, including joint swelling and tenderness, pain, level of disability, overall patient and physician assessment, and an objective marker of inflammation, such as erythrocyte sedimentation rate. Data being presented at ACR showed that ENBREL provided sustained improvement in the signs and symptoms of RA, in those patients who continued in the study, regardless of duration of disease. Following eight years of ENBREL therapy: 75 percent of ERA patients and 76 percent of LRA patients achieved ACR 20; 60 percent of ERA patients and 52 percent of LRA patients achieved ACR 50; 35 percent of ERA patients and 26 percent of LRA patients achieved ACR 70. Further, for those patients with LRA who received ENBREL treatment for nine years, 74 percent achieved ACR 20, 41 percent achieved ACR 50, and 22 percent achieved ACR 70. The ability to perform daily activities is an important goal for many people with RA, and data presented at ACR showed that treatment with ENBREL may help them achieve this goal. Through eight years of treatment with ENBREL, data showed that 73 to 85 percent of patients with ERA and 53 to 72 percent of patients with LRA achieved a clinically significant improvement in the Health Assessment Questionnaire (HAQ) score, a patient questionnaire that measures disability. A clinically significant improvement in HAQ was defined as at least a 0.22 improvement from baseline. "Before I was diagnosed with RA, the pain, stiffness and fatigue stopped me from doing many of the activities I enjoyed," said Gloria Treece, a participant in the study. "Since starting ENBREL treatment approximately nine years ago, I'm now able to take part in many activities with my family." These studies were designed to assess the safety and long-term efficacy of ENBREL in adult LRA patients who have failed to respond to at least one disease-modifying antirheumatic drug, and adult patients with ERA (defined as less than or equal to three years of disease duration). Patients with RA who participated in controlled clinical trials of ENBREL were eligible to enroll in open-label extension studies (LRA, N=644; ERA, N=207). makes me feel better to not be in an experimental group. Will see how it goes, I will be out of work for at least thru end of January.

Wednesday, January 4, 2012

Changes coming

Saw the Rheumy today, my finger remains contracted, gave me a cortisone shot in the joint. After checking me over, I am starting the next RA step, I will pick up Enbrel tommorow morning. Hopefully this will help, and I can start decreasing the Methotrexate soon.

Monday, January 2, 2012

Not over yet

Things have gone from bad to worse, fortunately my cold/flu/bug is mostly resolved. I had to take a medical leave from work last week,my hands have gotten much worse. Morning stiffness has become, at times, all day stiffness. Also my left hand middle finger at times is contracted, I can grasp, but I can't straighten out my fingers completely on my left hand.I have been on the phone with my Rheumatologist a few times, and have another appointment this wed.
I continue with the Systemic Enzymes, and have started a GI reflorastation, using Inulin, cream of Tartar, and probiotics.

Wednesday, December 14, 2011

2 month flare up

I have been under the weather recently, thought it was pneumonia, but just a cold I guess. I saw my Rheum. and had labs and a chest xray. The chest xray showed no infiltrates, so no pneumonia, or some type of atypical pneumonia, which is what I had been guessing all along. However, we need to go back to the beginning almost 2 months ago, I started a flare, used prednisone x 1 month with no relief, so finally just quit, didn't notice any diffence when I stopped, so it was a wise move. MD increased the Methotrexate to 20mg (8tabs weekly), Arava the same. (3 x week)
I thought the lungs were unrelated, but now I think I picked up a bug from a patient, and started an inflamatory cycle, increased pain and fatigue. My sed rate last week was 35, not really like it was back at the bigging of my RA, then >75 was common.
I am not sure how it will pan out, but restarted on systemic enzymes again, I also am going to try inulin for GI yeast control.