Advice for Better Living Archives

I have been taking Enbrel to treat my rheumatoid arthritis for two years with great success. I have been able to work fulltime again, and as a solo practitioner of Marriage and Family Therapy, I now have a large client load and many people depending on me as their therapist. Last week I was notified both by my pharmacy and by Immunex that Enbrel would be unavailable for an unspecified time, somewhere between a few days and 12 weeks. I was stunned and appalled. I have severe RA, and would never have taken on as many clients as I have unless I could successfully manage the disease. No one could give a satisfactory explanation for the unavailability of Enbrel, except that the demand exceeds the supply. In December 2000, I was notified that Enbrel was in limited supply, but if I went through the "enrollment process" I would be assured that sufficient supplies would be available to those in the enrollment problem. I'm wondering if you have heard this from others, and what ideas people have about dealing with this very serious issue. Thanks for your attention

I have my own personal theory about the availability of Enbrel.

More and more people are using mail in pharmacies for their medications, including myself. Before, I was getting my Enbrel, one month at a time. Now I get it 3 months at a time. And I think that translates into a roller coaster effect for the Enbrel supply. And because of limited supplies of Enbrel, when I get 3 months supply in one month, that means that 2 other peoples Enbrel is sitting in my refrigerator, having been allocated to me. And wrecks havoc on the available supply of Enbrel.

Just my theory.

Char

So Enbrel Maniacs, any thoughts?

I have just gone to the Rhuemotologist for the 1st time, although I have been complaining to my family doctor for months. The family Dr.'s answer was, 'well your blood work looks good so'... I thought, that's nice it still hurts. I have joint pain in hips, knees, ankles, wrists and lower back. I also have some eye involvement according to my eye doctor, who sent me on the quest to start with. Blood work came back ok, but ANA was 1.8 so I had more tests, all negative. Hematologist ordering x-rays and more blood work, but is not really sure what I have. Has anyone out there had similar problems? What did you do?

Well, here's my .02. :)

When I was 26, I started having pain in hands, wrists, shoulders, and
hips.... I had trouble opening jars, stupid stuff like that.

I'm an MRI Technologist, and that was before MRI, so I x-rayed my
hands. They looked fine. I ended up x-raying them about 10 times, and
never saw any bony damage.

That's because I have *Lupus*, which hits the soft stuff. <sigh>

My epiphany? I came in on call one night at 2am and the ER doc saw me
physically bending my fingers back into shape <they would stick shut
when I drove. He felt my hands, told me I had some kind of arthritis,
told me that I was too young for osteo, so it must be Rheumatoid or
Lupus. Then he made me promise to go see a Rheumatologist. My blood
work was wonky too - sometimes positive, sometimes not so positive.... I
went through 5 Rheumatologists before I found one who would LISTEN.

My disease was mild for many years, but, when it actively tried to kill
me, I was really glad I had spent that time slogging through docs to
find one that fit.

I hope this helps a little.

Smooches,
Laura

Please go to a rheumatoligist. Before you go ,look up all the symtoms. I was so frustasted with my doctor of 15 years,I started yelling at him at Christmas. The weird thing was that my hands swelled up tremendously, as if on cue. Another thing I did was bring my rings and some shoes with me. I told him I KNEW it takes a few years to show up on blood or film tests. Also , mt maternal grandfather and youger female couisn have it- so I knew I did just from the areas it was affecting on me - my feet (grew 1 and 1/2 sizes in a year) ankles,knees,,hips,whole spine,elbows, and knuckles ,and wrists and elbows. These are all PRIME areas of rheumatoid. I also have iritis in left eye. SO,he sent me for 1 more blood work and thank GOD , my c-reactive protein was elevated. I start my dose of Remicade infusion tomorrow ,April 5. Good luck to you and remember to read all about the differant arthritis symtoms and go with knowledge to back you up. GOD Bless,Michele 

I too had eye involvement in the beginning, iritis actually. My joint pain and swelling came about 4 months later and progressed from there. By that time my RF was high. Be patient is hard to hear and I was in your shoes a year ago so I know real well. Hang in the there for the correct diagnosis, it sometimes takes time. The good thing is that the eye problems might give you an earlier diagnosis than you would have had otherwise. Good luck! -Shelley

To answer one question for someone who is trying to get some answers about there aches and pains. My mother (Phyllis Acres) went through this, but she had 2 doctors disagreeing with each other to what types of arthritis she has. One said that is was Rheumatoid and the other one said Osteoarthritis, but they were both right. My mother is 88 yrs of age and crippled with arthritis and spends her time in bed, recliner chair or her wheelchair. She lives with us, and that being her only daughter, husband and granddaughter. She is unable to do all they things that she loved to do. She has been living with us for a year now, and we have made some changes to the house for her. Our most recent project is converting the bathroom and laundry room to allow us a wheelchair shower for her. It will be completely wheelchair accessible when it is completed. We are lucky enough to have a bedroom downstairs, as our home is 2 floors. One of the other arthritis that she has is in her eyes, and that was the first thing that was diagnosed, before the onset of the other two. She has had various surgery's to make improvements but that didn't last long or give her any great relief.
She is presently taking Plaquenil twice daily, Prednisone one a day, and Methotrexate once a week. She was misdiagnosed as having Parkinson's but it was a great relief to find out that she has Familial Benign Tremors that several of my brothers and I have. However in her case her shaking has caused her hands to shake a lot and made it difficult to do things such as crosswords, writing letters, and a simple things such as eating. We have tried one medicine but the side effects caused to sleep during the day and awake at night. At the present time she is not taking anything for the shaking.

I hope that will be some help.
from her daughter Kathy Maitland

Boy, I can sure relate to the frustration of doctors not knowing what the heck is wrong with you. I was 9 when I was diagnosed with JRA. It took a full year of mis diagnosis, "growing Pains", and the doctor wanting to send me for experimental treatment (experimental treatment for what?He had no diagnosis!) I went to a new doctor to finally get a diagnosis. Has your doctor taken x-rays? If there is any damage to your joints, it will show up in an x-ray. The new doctor took x-rays, urine and bloodwork. Arthritis showed in all 3, which gives me the conclusion that I had arthritis for quite a while before I was finally diagnosed.

It is so frustrating not knowing what is wrong with you, but at the same time you know something is definitely wrong. My best suggestion is-keep going to these different doctors, and don't stop until someone can find what is wrong. Keep a log of your "hurts". What I mean by this is get you a notepad, best bet is to get one that you can carry with you. That way, everytime you hurt, even if it's away from home, write it down. Write down what you did the day before, and even write down what you eat. Sometimes certain foods can trigger pains-examples are oranje juice, and ketchup. Citrus acid contributes a great deal, and tomatoes are acidy, too. If you have a list of times, dates, where you are hurting(what joints, I mean), and what activities you participate in that might cause you pain, this could possibly help your doctor in determining what is wrong or give him an idea of what tests to run. It could also benefit you if you know which things cause you pain, you know what to avoid or what to limit youself on. (for example, I love spaghetti, but I eat it in moderation because I know it will cause a flair.) I wish you ggod luck- and remember- do not quit going to different doctors until someone finds something. You know your body best, and you know when something is wrong. Best of luck to You!!  -Tammy