Side effects for imuran

Hi, I am a 35 year old woman and a mother of two. I was diagnosed with an autoimmune hemolytic anemia 15 years ago. I was fine until Feb. 2004 that's when all hell broke loose. My hemogloebin dropped to 40 and I was hospitalized for over a month and had two blood transfusions. I was put on 250 ml of prednisone everyday for 6 months.They redused the pred slowly over the past two years. My body blew up till I couldn't recongnize myself anymore. It's been a rollacoster since. In and out of the hospital transfusions and even had my spleen removed. Nothing has helped. The wrost thing of all is that the doctors have no answers to my disease. They say it is very rare and they do not know much about it or how to treat it. It is a guessing game. I started on the imuran and pred combo to see if it would help. I am finally down on the pred to only 10 mls a day but is still on 200mls of imuran daily. My face and body is still pretty swollen and my blood pressure is still pretty high, even though I am on blood pressure medicine. I am also on 6 mls of warfin because I developed blood clots in my lungs. The clots have seemed to clear up now, but I am still on the blood thinners. I have started to get this skin irritations on different areas of my body. It's like a red circle with really flaky skin in the middle on my stomach. Then I have a big red patch under my breast that gets very sore. And I also have dry flaky skin in both of my ears. Is this a side effect from the imuran or is this something else? How long can you be on 200mls of imuran until it starts to effect your body?

[Maari]

Hi  I have AIH and am on 100mg of Imuran. I have been taking Imuran for 2 1/2 years. I have not had any major side effects, I have some hair loss. I was on a combo of predn and Imuran, did not like all the side effects from predn. Some of the folks on other forums have not been able to take Imuran because it made them ill, or affect their wbc or rbc or gave them pancreatitis.  No one has mentioned skin rashes. But skin rashes are listed as a lessor side effect.  I have regular blood work to keep tract of my rbc and wbc. There are other drug avaliable for those who can't take imuran. Cellcept, MP6 were some of the names. There is even a blood test that can predict who will not be able to take Imuran.

I am sorry to hear about you difficulities.  What kind of Dr's are you seeing?  I see a GP, Gastro and a Liver specialtist. If I can answer any question please ask. I keep a journal on myself, that way I can be accurate about symptoms.  It seems when you have a rare disease, you as the patient need to be informed and bring things to the Dr's attentions. I feel I am paying them , so I feel free to ask lots of questions. My docs have been open to this. I like knowledge, and knowledge is power. Learn as much as you can about you disease.

Take care and hang in there
Maari

Maari

[Meddu]

Thank you so much for your kind words Scott.
God Bless!
Meddu

[hava]

Doctors are still trying to diagnose you.It is time you looked an alternative. Have a open mind and do the breathing exercises regularly and over time you will need less of the steroids and other medication.You will notice benefits in days/weeks, but only by doing it.
Suggested daily pranayam(breathing):The Yoga Pranayam (breathing exercises) are:

Bhastrika - Take a long deep breath into the lungs(chest not tummy) via the nose and then completely breathe out through the nose.Duration upto 5 minutes.

Kapalbhati -(Do it before eating) Push air forcefully out through the nose about once per second. Stomach will itself go in(contract in). The breathing in will happen automatically. Establish a rhythm and do for maximum of 30 minutes. Not for pregnant women. Seriously ill people do it gently.

Anulom Vilom - Deep Breath-in through left nostril keeping right nostril closed
then - Breath-out through right nostril keeping left nostril closed
then -Deep Breath-in through right nostril keeping left nostril closed
then - Breath-out through left nostril keeping right nostril closed
and repeat this cycle for 30 minutes maximum.

Tips : Breathe into lungs not into stomach. Do not hurry. Do it slowly. Rest whenever needed (in any pranayam).Can be done in sitting position, standing or lying in bed(if bed-bound).Keep tissues handy, as a lot of mucous from lungs will be coming through the nose.Monitor test results to see the improvement.
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After you have started pranayam, I will answer any questions. Print this and read again several times during the first few weeks to get the breathing right.Also let the doctor know about pranayam and give him a copy.