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View Full Version : Dr. just added 100 mg. of Imuran for my 13year old !!



mommymc
10-08-2005, 06:35 PM
I got a call from Children's Hospital on Thursday. The rheumatologists and the medical team have added 50mg. daily of IMURAN to my 13 year old daughter's drug repatoir. I cried the entire day. She was diagnosed on 01 june 2005. She is also on 200mg.plaquenil, 25mg.predisone, 400IU Vitamin D, 1mg. Folic Acid, 81 mg. Aspirin, 1500mg. calcium and a multivitamin.

I feel totally helpless. The first risk on the print out of Imuran was that is causes cancerous and non cancerous growths. (The Dr.'s said that she will be on Imuran for 1 to 2 years. Wow!) These drugs appear as bad as, or worse than the disease itself. The ironic thing is that her spirits are up. She is better in the last month than she has been since June. She is tired at the end of the day, but who isn't. She is fast asleep now, and it is nearly 7:30 pm. Could anyone please give me some insight.

Thank you, a very upset Mommymc

TracyDawn
10-12-2005, 06:43 AM
Mommymc, I have NO clue about Imuran having never been on it. Hopefully someone else can give you more info on it soon. I just wanted to tell you I admire you and your daughter so much. I have a son who is seven and we are currently watching symptoms with him, all the while praying it doesn't come to be lupus in the future. We've been through a lot with him medically but nothing compared to the fight we would have with lupus I think. After seven years I just got diagnosed and started on plaquenil all in the last month and I wouldn't wish this on ANYone, especially a child. My heart goes out to you as I know how hard it is to wait for this test or that, this new med or that. And I am so sorry you are going through it. You are a very courageous woman, as is your daughter. {{{HUG}}}

mommymc
10-12-2005, 06:40 PM
TracyDawn:
Thank you for posting a reply, it means a lot to me right now!! It made me cry to hear that you are in the midst of a lot of things happening with your son. My positive thoughts and prayers are with you, really!! I do understand what you are feeling at this trying time in your family's life. As parents, we have been able to 'make it all better' with a hug, kiss and a little extra time. Sometimes we have to let others (doctors) try and 'fix' it while we sit next to our children. The people who have this disease are truly amazing!! Please take care of yourself and know that all of us at this board are only a click away.

God Speed,
Mommymc :angel:

Amanda109
10-28-2005, 05:49 PM
Hey. I was diagonsed w/ lupus Jan. 2005. They put me on Imuran about 4 months ago. It helps w/ the prednisone and everything. It isnt a bad pill to take. Just another one to go w/ all of them.

mommymc
10-28-2005, 08:57 PM
Thanks for taking the time to reply. We were just at the hospital today for our monthly visit with the Rheumatologist, nutritionist and physiotherapist as well as lab work. The Dr.'s have put the Imuran up to 100mg/daily. Prednisone wasn't reduced, it is still at 25mg./daily. They also had to add Acylovir 800mg/b.i.d. for 5 days. They found what they think is herpes zoster on my daughter's neck. We were brought into the ER where they had to get a sample of them and send them to the Centre for Infection Control. My daughter lost it, and had a break down. My heart is just breaking for her!! I am feeling emotionally bankrupt these days. They had to sedate her with Ativan. The only good thing that happened is after that we had to go to the lab for blood work, and they got a vein on the first try on the top of her arm, near her elbow. It has been months since the techs have got it on the first try.!! I guess I have to be thankful for something.
I don't know how all of you can do it!! You are amazing, I wish you all a hug.
Mommymc

Saysusie
10-31-2005, 09:54 AM
Hi Mommymc:

Fungal infections are often seen in people with Lupus. An individual with lupus is more susceptible to infection than most people for two reasons:
Lupus directly affects a person's immune system and reduces his or her ability to prevent and fight infection. Lupus patients are at an unusually high risk for contracting salmonella, herpes zoster and candida (yeast) infections.

Many of the drugs used to treat lupus suppress the function of the immune system and leave the body more prone to infection. Cortisone-like drugs (prednisone) and cytotoxic drugs such as azathioprine (Imuran) and cyclophosphamide (Cytoxan) increase a person's susceptibility to infections because they suppress both normal and abnormal immune system function. However, controlling lupus is usually more important than the danger posed by a possible infection due to the use of immunosuppressive medications.

Infections that occur in people with lupus fall into two categories. The first category includes infections caused by organisms which can induce infection in persons with lupus and in the general population as well. This category includes organisms such as streptococcus (which causes strep throat) and staphylococcus (which causes staph infections).

The second category consists of "opportunistic" infections. Opportunistic infections are caused by organisms capable of inducing disease only when one's immune system is weakened. Most of the opportunistic infections are fungal, parasitic or protozoan. The most common infections that lupus patients contract involve the respiratory tract, skin and urinary tract and do not usually require hospitalization. Fortunately, only a few lupus patients will need aggressive hospital treatment for infections.
However, infections in lupus patients tend to last longer and require a longer course of treatment with antibiotics than infections in people who do not have lupus.

With reference to Imuran - While some of the side effects of Imuran (azathioprine), Cytoxan (cyclophosphamide) and other immunosuppressive and cytotoxic drugs are severe, they are generally reversible by either reducing the dosage or stopping the medication. Although immunosuppressive drugs can have serious side effects, they can be of greater value in treatment. They can help to prolong life, preserve function, reduce symptoms, and sometimes may serve to put the disease into remission.
Imuran is less potent and less effective than Cytoxan, but it has far fewer side effects. Its use may cause the white blood cell count, platelet count, or red blood cell count to decrease, and it might slightly increase the risk of developing lymphoma (a cancer involving the lymph glands, liver and spleen). However, it is well tolerated in most cases. Blood tests determine the white blood cell, platelet and red blood cell count should be taken regularly in patients receiving Imuran. Adjustments in dosage are made if the tests indicate a serious decrease in the blood count.

I hope that I have answered some of your questions - Let me know if you need more information! I wish you and your daughter the very best!!

Peace and Blessings
Saysusie

mommymc
10-31-2005, 05:23 PM
Saysusie:
Thanks for sending some information my way. Lab work came back today, and my daughters' CK have gone WAY UP ! From 2433 to 3273 !(normal being 185 or less)! Her platelet count took another dive too, from 253,000 to 140,000. The Dr. want to try the 100mg or Imuran for another 4 weeks, then up to 150mg. I pray that it works !! Otherwise, i fear Cytoxan will be the next step. She has only been dx for 5 months, I still can't get over the shock of Lupus. Days like we have been having for the last week make me think that our entire lives are falling apart. My other child feels paranoid, worried and ripped off, my marriage is falling apart... How do you cope?
Claire

Missy
10-31-2005, 05:50 PM
Coping is not easy - but remember to take care of yourself, so that you are available for the others that need you in your life. My husband and I ended up in counseling, which was helpful. Think of how you have dealt with other stressful things in your life? What helped? What hindered? Take time to spend with your other child/children. When I was little and my brother was diagnose with diabetes, all the attention went in that direction, and understandably so. Spend time with your husband and comfort each other. Realize that you are both doing the best that you can.

Good luck,

Ariel
11-01-2005, 05:25 AM
My other child feels paranoid, worried and ripped off,
Claire

I was very young when my sister was diagnosed with diabetes. (I was diagnosed at 14.)

They didn't know what was wrong with her at first. She had bruising all over her body and they feared leukemia among other things. It was a rough time for everyone and I felt neglected and unimportant.

My parents apparently caught on and made a point of doing things with me individually. My Dad drove me into San Fran (we lived in CA at the time) and took me to a baseball game.

I will NEVER forget sharing those hours with my Dad, eating peanuts, and watching the boys of summer play ball.

I guess what I'm saying is, sometimes it's the little things that leave the biggest imprint on your life - both for your children and your husband.

Throw an "Unbirthday Party" (Alice Through the Looking Glass) on the calendar opposite of a birthday. Do a backwards dinner and eat dessert first. Make sure your healthy child gets undivided attention from one parent even if the other has to tend to the sibling. Even sharing a quiet moment, reading aloud together or watching a nature show on tv, or playing a board game, can take on special meaning because what is important is that those moments are SHARED.

mommymc
11-03-2005, 08:41 PM
Thanks for the encouragement. It is just so many things happening it seems in such a short period in time. Both my children have the same sperm donor. He left when my daughter was almost 16 months, and I was 2 months pregnant with my son. That was 11 years ago.(I only heard from him when he was $25,000.00 in arrears in child support)
My current husband and I adopted my birth children in February 2002. We are both 37, and he has no other children except for our 2. My husband and I were married in August 2002. Our kids asked to be adopted, and have called him Dad about 6 months after we started dating. He is the only daddy they have known. They even say they look like him. Ha Ha!
I feel as though I have 'ripped him off' in a sense that her has a sick girl. He is in his second year of his apprentiship and works 14 hours, 6 days a week so that we can put food on the table and pay the rent, as we don't have any medical or dental. I go to school full time during the week. We have major financial difficulties.
Sorry, about that rant. Blah, Blah.
We just can't seem to get a break.
Love

mommymc
12-02-2005, 11:41 PM
Well, my daughter isn't getting better . Her CK is now up to 4055. Pred. is still at 25mg. and Imuran 100mg. Plaquenil is 200mg. Mon-Fri, 400mg Sat and Sun. Now not only is she losing clumps upon clumps of hair, she is developing acne, and light sensitivity from the florescent lights in high school, she uses 50 SPF with UVA and UVB protection. She had an unexplained nose bleed this week, a huge purple bruise 2" X 2" on the inside of her elbow with a hard lump. Went to Dr. figures a blood vessel twisted and caused the hematoma.
I am so tired and angry!!!! Will there be one day, just one day where she can be relaxed and enjoy being 13? I don't want to bury her beside her best friend who passed away 4.5 years ago.