October 8, 2012

OK - Went to the Expert yesterday.  Surprise my inflammation marker is higher than it has ever been.
In case you can't read this, C-Reactive Protein Quant was as follows:

     7/13/2011  15.7
   10/05/2011  10.1
     1/09/2012   7.2
    4/09/2012    3.1
    7/15/2012  29.4

So he did a TB test and now recommends Enbrel.  He said in his experience that no one has gotten cancer from the drug although he has had patients who have had to go off Enbrel because it interfered with cancer treatment and their RA got worse.  He has never seen liver damage.  He said my liver tests are "perfect".  He has never seen anyone get MS from Enbrel.  He has seen people go from a weekly injection to 1 every three weeks.  He has seen some irritation initially at the injection site but this generally goes away after taking the medication for awhile.  He recommends you move the injection site around.  I would need to continue to take all the other meds along with the Enbrel and eventually start to go off them altogether.

So, I have to go back Weds for the result of the TB test.  They will pre-approve me for Enbrel (lord only knows what that would cost) and I will find out the result of my blood test on Weds or Thurs.  I want to know what the Lefludemide did, if anything and what my current inflammation levels are. 

Today, I will start taking 50,000 IU of vitamin D and 1000mcg of Vitamin K.  The Doc was really convincing yesterday and I am now wavering in my resolve. 

 

http://healthyliving.msn.com/diseases/rheumatoid-arthritis/10-household-tools-for-people-in-pain

 

the following is from the site above....(thank you Mr. H)

 

"The link between vitamin D and RA is tricky.

Research suggests women in the northeastern U.S. are at greater risk of RA than those in sunnier regions. Lack of sun can cause vitamin D deficiency. And vitamin D deficiency has been linked with other autoimmune diseases.

"Vitamin D has a lot of interesting immune effects and metabolic effects and is critical to bone health," Dr. Goodman says. "Whether taking vitamin D will delay the onset or prevent it seems less clear-cut, but it is an important part of overall bone health."

 

 

 

While I didn't base my treatment on this, I did read "The Miraculouse Results of of Exteremely High Doses of Vitamin D3  a Year Long Experiment with Huge Doses of the Sunshine Hormone from 25,000 to 100,00 IU/day by Jeff T. Bowles. 

 

 

So, here we go...

 

I

 

 

Preparing for my Human Trial - Rheumatoid Arthritis

My name is Peggy. I am in my late 50's and diagnosed with RA (Rheumatoid Arthritis) about 15 months ago. It came on so fast I didn't know what hit me. First some stiffness in my toes. Even the skin on my toes could not tolerate sheets if I lay on my back. Then, my hands started hurting in the mornings and eventually, I had issues in holding on to things (can you say broken coffee pot?). Pain and stiffness is a daily occurrence.  At my job I type at a desk computer, use the phone, read reports and the like. My hands throbbed continuously. I could not sleep. I had issues opening the door in the morning to let my dog out and generally felt like crap. I would have serious pain after holding my new granddaughter - I was afraid I would drop her.  

You have to understand that this came on the heels of a full 18 months remodeling a home, 4 hours from where I live (each way).  I carried concrete boards, pallets of tile (one box at a time) and loaded and unloaded trucks and trucks full of repair supplies up a flight of stairs. This was an 18 month “weekend project”.  Needless to say, I considered myself in good shape.  

Back to my experience. I went to my internal medicine doctor who drew blood. He said I had the "markings for RA". He also said the good thing was that he could make me feel better right away and gave me a week’s sample of Celebrex and a referral to a RA specialist. He assured me that the drugs available today prevent the usual deformities and control the pain and inflammation associated with RA. 

Celebrex was not a miracle and did nothing for me. The pain in my joints seemed to intensify daily. I could not get my rings over my knuckles and the wrinkles at my joints, particularly in my middle fingers, seemed to be non-existent. I could only bend my fingers to my palms by pressing them down with my opposite hand. My fingers click down and back – like they are stuck.  

The  specialist said RA is an autoimmune disorder affecting the joints of the hands and feet and that pain in the back, neck etc., were due to osteoarthritis (both of my knees were replaced when I was 51 due to lack of cartilage). The doctor told me he was the authority on RA and that it can also affect a person’s heart and lungs. He gave me a shot of steroid and an RX for Meloxicam 15 mg tablets. I have to say, by the time I got home a mere 20 minutes later, I could bend my fingers without clicking! Steroids are the miracle drug for me. (more about steroids later) 

I filled the RX hoping by the time the steroid wore off, the Meloxicam would do it's thing; but, by the time the steroid wore off, the pain and stiffness came right back. So back at the Docs who put me on Arthotec 50mg twice a day. Still pain and inflammation were an issue for me. So, we went to Methotrexate 2.5 mg, 3 pills one time per week and Folic Acid 1MG tablets to help prevent damage to my liver. (more on Methotrexate later) This went on for about a year to a point where I was up to 6, 2.5mg tabs of Methotrexate.  According to my bloodwork, my inflammation levels are down but the physical symptoms were not much improved. (ya think?)  

I have some OK days and some really BAD days still. I had to go off the pills for 2 weeks last December for surgery and I admit this regimen of treatment did more than I had thought.  But I still wanted to find an alternative to all of these medications. 

I kept asking if there was an alternative drug to the Methotrexate and Arthotec. He said the Arthotec was a band aid and the Methotrexate was the real worker. He drew blood and made the usual 3 month appointment. He suggested we start the process for insurance approval of Enbrel and gave me the literature on this injectable.  It was then I started to really read about the Methotrexate.  What an eye opener.   

Here's what the Methotrexate says:

Severe allergic reactions (rash; hives; itching; difficulty breathing; tightness in the chest; swelling of the mouth, face, lips, or tongue); back pain; black or bloody stools; blood in the urine; bone pain; calf or leg pain, redness, swelling, or tenderness; change in amount of urine produced; chest pain; confusion; coughing up blood; diarrhea or vomiting; difficult or painful urination; dry cough;enlargement of the breasts (in males); fainting; fever, chills, or persistent sore throat; menstrual changes; mental or mood changes; mouth or tongue sores or swelling; muscle weakness; night sweats; one-sided weakness; red, swollen, blistered, or peeling skin; seizures; severe or persistent headache, drowsiness, dizziness, or light-headedness; shortness of breath; speech changes; swollen glands; symptoms of liver problems (eg, dark urine, pale stools, persistent loss of appetite, severe stomach pain, yellowing of the skin or eyes); symptoms of pancreas inflammation (eg, severe stomach pain with or without nausea or vomiting); unexplained weight loss; unusual bleeding or bruising; unusual pain and discoloration of the skin; unusual tiredness or weakness; vaginal discharge; vision loss or other vision changes (eg, blurred vision); vomit that looks like coffee grounds.


and Enbrel:

Safety Information about ENBREL
Serious infections have happened in patients taking ENBREL. These infections include tuberculosis (TB) and infections caused by viruses, fungi, or bacteria that have spread throughout the body. Some patients have died from these infections. Patients treated with ENBREL also may be at risk for other serious side effects including nervous system problems, such as multiple sclerosis, seizures, or inflammation of the nerves of the eyes; rare reports of serious blood problems (some fatal); heart failure, including new heart failure or worsening of heart failure you already have; new or worsening psoriasis; allergic reactions; immune reactions, including a lupus-like syndrome, lymphoma (a type of cancer) and other cancers.

And at last; Arthotec

CONTRAINDICATIONS AND WARNING

ARTHROTEC® (diclofenac sodium, misoprostol) CONTAINS DICLOFENAC SODIUM AND MISOPROSTOL. ADMINISTRATION OF MISOPROSTOL TO WOMEN WHO ARE PREGNANT CAN CAUSE ABORTION, PREMATURE BIRTH, OR BIRTH DEFECTS. UTERINE RUPTURE HAS BEEN REPORTED WHEN MISOPROSTOL WAS ADMINISTERED IN PREGNANT WOMEN TO INDUCE LABOR OR TO INDUCE ABORTION BEYOND THE EIGHTH WEEK OF PREGNANCY (see also PRECAUTIONS). ARTHROTEC SHOULD NOT BE TAKEN BY PREGNANT WOMEN (see CONTRAINDICATIONS, WARNINGS AND PRECAUTIONS).

PATIENTS MUST BE ADVISED OF THE ABORTIFACIENT PROPERTY AND WARNED NOT TO GIVE THE DRUG TO OTHERS.ARTHROTEC (diclofenac sodium, misoprostol) should not be used in women of childbearing potential unless the patient requires nonsteroidal antiinflammatory drug (NSAID) therapy and is at high risk of developing gastric or duodenal ulceration or for developing complications from gastric or duodenal ulcers associated with the use of the NSAID (see WARNINGS). In such patients, ARTHROTEC (diclofenac sodium, misoprostol) may be prescribed if the patient:

· has had a negative serum pregnancy test within 2 weeks prior to beginning therapy.

· is capable of complying with effective contraceptive measures.

· has received both oral and written warnings of the hazards of misoprostol, the risk of possible contraception failure, and the danger to other women of childbearing potential should the drug be taken by mistake.

· will begin ARTHROTEC (diclofenac sodium, misoprostol) only on the second or third day of the next normal menstrual period.

Cardiovascular Risk

NSAIDs may cause an increased risk of serious cardiovascular thrombotic events, myocardial infarction, and stroke, which can be fatal. This risk may increase with duration of use. Patients with cardiovascular disease or risk factors for cardiovascular disease may be at greater risk (see WARNINGS).

ARTHROTEC (diclofenac sodium, misoprostol) is contraindicated for treatment of peri-operative pain in the setting of coronary artery bypass graft (CABG) surgery (see WARNINGS).

Gastrointestinal Risk

NSAIDs cause an increased risk of serious gastrointestinal adverse events including bleeding, ulceration, and perforation of the stomach or intestines, which can be fatal. These events can occur at any time during use and without warning symptoms. Elderly patients are at greater risk for serious gastrointestinal events (see WARNINGS).

 
During my standard 3 month appointment this July, I expressed concern about the Enbrel?  He said have you read about Methotrexate?  I told him I had and asked again about alternatives.  I read something about Potassium and he pooh poohed me.  But he did change the Methotrexate to Leuflunomide 20 mg daily to see if this would work better for me but still thought the Methotrexate was still the best treatment short Enbrel. At this appointment I told him that my heart was racing a lot when I was not in motion (like laying in bed or sitting in a chair).  He ordered xrays of my chest and hands (as a baseline). These results will be discussed at my October appointment.   

Here’s what Leflunomide says:

Leflunomide may cause liver damage that can be life-threatening and even cause death. The risk for liver damage is greatest in people taking other medications known to cause liver damage, and in people who already have liver disease. Tell your doctor if you have or have ever had hepatitis or any other type of liver disease and if you if you drink or have ever drunk large amounts of alcohol. Tell your doctor and pharmacist if you are taking acetaminophen (Tylenol, in other over-the-counter products), aspirin and other nonsteroidal anti-inflammatory medications (NSAIDs such as ibuprofen [Advil, Motrin] and naproxen [Aleve, Naprosyn], cholesterol-lowering medications (statins), etanercept (Enbrel), hydroxychloroquine, iron products, isoniazid (INH, Nydrazid, in Rifamate), methotrexate (Rheumatrex), niacin (nicotinic acid), or rifampin (Rifadin, Rimactane, in Rifamate, in Rifater). If you experience any of the following symptoms, call your doctor immediately: nausea, extreme tiredness, unusual bleeding or bruising, lack of energy, loss of appetite, pain in the upper right part of the stomach, yellowing of the skin or eyes, dark-colored urine, or flu-like symptoms.

 

I have tried the standard treatment and still have terrible periods of inflammation and pain. Sleep is a mystery for sometimes weeks at a time. Shoes come in all sizes for swollen days and whether or not my toes can handle a "thong" or not. My watches come on all sizes too. Sometimes I can wear rings - sometimes not.  Of late I am feeling like an internal shaking - but on the outside I am not shaking. Who knows...

The only thing that makes me feel normal (but kinda bitchy and super-human) are steroids.  I got some in Mexico last year and when a special occasion comes up or my hands hurt really bad, I take them for a limited time.  I know this is not good for the long term because of health risks - but it is my salvation.  I wish the powers that be could figure out a way to make them without side affects because they are truly my miracle. 

I have asked about alternative medicines but the “Expert's” attitude is I should go along with his recommendations because he is the know all be all of RA. The only real relief I experience is with the miracle "steroids". I read about diet and potentially some vitamin supplements that may be what I am looking for. So, I am going to go for my doctor's appointment on October 8 to get a blood baseline. After that, I will do the vitamin thing on my own and track my progress. So, look for more as I begin my own human trial.

I welcome any additional comments and/or things anyone has tried short of all of the pharmaceuticals. 

I am not a doctor. I am searching for something that will work for me that does not include taking drugs with potentially serious side affects. I want to live the rest of my life to the best of my ability with quality.

Here’s my hands today, 10/4/2012