My Story

Polymyositis

Pulmonary Fibrosis

My Health Update

My Drugs & Herbs

My Diet & Nutrition

My Healthy Home

My Perscriptions

Prednisone | Methotexate | Imuran | IVIg | Remicade | Zoloft | Cytoxan |Rituximab|

Prednisone

Prednisone is a steroid used to treat inflammatory conditions of the body, such as Polymyositis. Prednisone, suppress the immune system and It relieves inflammation. When you take it, it’s like a miracle drug however it isn’t with out its side effects. I’ve listed just some of them:

Some side effects from Prednisone:

• acne
• anxiety
• depression
• dizziness
• Easy bruising
• headache
• increased hair growth
• insomnia
• irregular or absent menstrual periods
• restlessness
• skin rash
• stomach irritation
• swollen face, lower legs, or ankles
• vision problems (cataracts)
• vomiting
• cold or infection that lasts a long time
• muscle weakness

Here's some important information I found out about getting off of prednisone.

Normally the adrenal glands release about 7½ mgs of cortisol into the blood stream, more if you're stressed. Cortisol, also known as cortisone, is a steroid that your adrenal gland produces naturally. The brain monitors this amount and regulates the adrenal function. However it can't tell the difference between its own natural cortisone or the prednisone your taking. So when someone has been taking high doses of steroids over a long period of time (six years for me) the brain may decrease or stop producing cortisol altogether. If that happens it called adrenal suppression. That's why it's so important to taper off slowly to allow the adrenal gland to recover and produce cortisol at a normal level again. Everyone is different so I have to pay close attention to my body when I get below 7 ½ mgs. If I taper down too fast before my adrenal gland kicks in, I could have a flare up. If the production of cortisol is permanently suppressed as a result of taking prednisone for so many years, then I'll need to continue to take small doses of prednisone for life.

Methotrexate

Methotrexate, a disease-modifying anti-rheumatic drug, is considered the standard treatment for rheumatoid arthritis. It works as a cytotoxic drug and as an immunosuppressant. Some side effects:

The most common side effects from Methotrexate::

• upset stomach
• nausea
• vomiting
• loss of appetite
• diarrhea
• mouth sores

Some long-term side effects from Methotrexate:

• lung damage ( I was on Methotrexate when I developed Pulmonary Fibrosis)
• liver damage (Methotrexate may also cause liver damage, although this is rare. Blood tests will are done on a regular basis to monitor your liver and bone marrow for changes.)

Imuran

Imuran is an immunosuppressive drug used to treat autoimmune disorders such as Polymyositis. Imuran is less potent and less effective than Cytoxan, but it also has far fewer side effects - That’s one reason why I am trying to stay on it. Like Cytoxan, is well tolerated by most individuals.

Its use can cause the white blood cell count, platelet count, or red blood cell count to decrease, and it might increase the risk of developing lymphoma (a cancer involving the lymph glands, liver and spleen).

My research strongly suggests that patients taking Imuran should undergo regular blood tests to monitor their white blood cell, platelet and red blood cell count so that adjustments in dosage can be made if tests indicate a serious change in the blood count.

IVIg

IVIg (Intravenous immunoglobulin) is made from blood plasma from donors. IVIg is standard treatment for MS. The only two side effects that I know of are headache or flu like symptoms.

I was taking IVIg intravenously each month. A nurse would come to my house and hook me up to an IV drip. Each treatment lasted about four hours a day, for three days. It’s a very expensive treatment and it was hard for me to get it approved from my Insurance Company.

IVIg worked great for me in the beginning. My energy level and muscle strength improved. I was able to come down on the Prednisone from 40mgs to 5mgs. It gave me my life back. It worked for about twelve months but as my body started to get used to it , it was no longer as effective as it had been. I would start to feel bad two weeks before my next treatment. My cough came back and that’s when the Doctors decided I should try Remicade.

Remicade

Remicade is an anti-TNF drug used for the treatment of Rheumatoid Arthritis. It’s given by intravenous injection under medical supervision and often prescribed in combination with methotrexate – as was my experience. It can reduce symptoms such as inflammation, stiffness and joint pain.

My Experience: I didn’t have any reaction to my first three Remicade treatments however, during the fourth treatment I went into anaphylaxis shock. I now premedicate the night before and the day of the treatment. The key for my treatment is to regulate the drip to 8 drops per minute for the first hour of treatment.

In addition to asking your doctor for more information regarding this treatment, I found www.remicade.com to be a good source of information.

Zoloft

Zoloft is a prescription medication that is used to treat depression, panic disorder, obsessive-compulsive disorder and posttraumatic stress disorder in adults. You can learn more about Zoloft by visiting www.zoloft.com.

My Experience: Depression is an awful thing to deal with on top of everything else. In March 2001 I started to get depressed after I found out I had Pulmonary Fibrosis.

March 2001 through February 2002 was the lowest time in my life. My body hit a wall and there was nothing I could do about it. I blamed myself for my illness, and for the first time I realized I had no control over what was happening to me. I was scared, lonely and had no one to talk to.

Work was my only saving grace.

I made the decision to start therapy. I had been to a therapist in the past and had great success with it, however my original therapist had retired and moved out of state. My new therapist didn’t work out since the only thing she seemed to be interested in was the billing. So I was on my own.

When I looked in the mirror I didn’t see myself, but someone else who was taking over my body. I hated getting my picture taken (as you can tell it’s not a problem now) I didn’t realize how upset I really was until I started the IVIg and went down on the Prednisone and Imuran. It’s a great feeling to over come depression. I’ve found for me, the most important thing is a positive outlook on life, and support from family and friends, remember it can always be worse. The Zoloft worked, but it didn’t solve my problems it just made it a little easier getting through the days.

I am happy to say since April 2002 Chris has been my angel and my support. I feel I may not have met him if I didn’t go through this, and he’s worth it. I appreciate everything he’s done for me and the support he gives me, he’s a retired-Marine so I know he’ll never give up on me.

I also have a group of wonderful friends that really understand what I’m going through. They have listened to me ramble on and on about new treatments and new things I’m trying. They’ve seen me at my best and at the worst and they have been by my side. They’ve been great!

So, a special thank you from the bottom of my heart for your love and support, you guys are the best!

Chris, Christie W, Kit N, Don F, Sue S, Tom & Cheryl, Pam F, Ellen R, Michael C., Cindy C, Jane G, Grady C. Jackie M, Vincent P, Tom M. Bob & Robin, Dominic C, Lewis & Emily, Anita V. Kay S. Alison M.

Cytoxan

Cytoxan is an immunosuppressive drug used to inhibit the growth of malignant cells. It may be used alone but is often administered with other anticancer medications. As with many immunosuppressive drugs, taking Cytoxan can result in serious side effects, but it is well tolerated by most.

Individuals taking Cytoxan have an increased risk of developing malignancies including leukemia, bladder cancer, and other tumors. It can also cause temporary or permanent sterility in both women and men and bleeding from the bladder (drinking, 3 – 4 liters of fluid a day can help prevent bladder problems. The extra fluid dilutes the urine and causes the individual to urinate frequently, minimizing the Cytoxan byproducts contact with the bladder).

Patients may develop shingles or hair loss. Like Imuran, the use of Cytoxan may predispose a patient to develop unusual infections, particularly when it is used in combination with high doses of steroids.

I feel it’s important to say again that I am not a medical professional nor do I have any medical training. This is only some of the information about Cytoxan that I came across during my own research and personal experience. There is much more to learn about this potent drug and in fact, all of the medicines and treatments listed on this web site. A good place to start a search for your own information might be through your doctor.

Rituxan

Rituximab, sold under the trade names Rituxan® and MabThera®, is a chimeric monoclonal antibody used in the treatment of B cell non-Hodgkin's lymphoma, B cell leukemia, and some autoimmune disorders such as Myositis and Lupus.

Rituxan is a powerful immunosuppressant that eliminates mature circulating B-cells for up to nine months. Rituxan is approved for CD20-positive, B-cell, non-Hodgkins lymphoma and for moderately-to severely-active rheumatoid arthritis when there has been inadequate response to other treatments. Rituxan is being studied for other indications, and is prescribed off-label for other serious diseases and conditions such as SLE. The sponsor estimates that approximately 10,000 patients with SLE have been treated with Rituxan. Rituxan is also being tested in Mysoits at the University of Pittsburgh.