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CATZZ
Regular Member


Date Joined Apr 2007
Total Posts : 39
   Posted 6/5/2009 2:53 PM (GMT -6)   
Hello Everyone,
I have a question about Imuran.  I'm supposed to be starting it soon and I was wondering what I might expect.  I researched it online and it sounds kind of scary.  If you have taken it how long did it take to show an improvement? What were the most common side effects? Did everyone have hair loss? I already have such a huge problem with hair loss it's freaking me out. Thanks for any information; I'm trying to brace myself :)
 
Dx:  Lupus, Hashimotos Thyroiditis, Peripheral & Autonomic Neuropathy, Fibromyalgia, Arthritis, Erythromelalgia, GERD, B12 & D deficiency
Rx:  Plaquenil, Levoxyl, Lyrica, Flexeril, Tramadol, Hydrocodone, Lasix, Lunesta, Ativan, Pepcid, B12 injections , Vit D


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 6/5/2009 3:29 PM (GMT -6)   
Hi CATZZ, Imuran helps me immensely! I started out on 50mg a day with little to no side effects and over the last 4 years my dose has increased to 125mg (2 1/2 tabs). Just make sure you take it with food, plenty of food or you may have some nausea. Your rheumy should also monitor your CBC and liver function very closely. I had mine checked every 2 weeks for 6 weeks and then every 2 months after that. I don't know how well it works for my joint pain as it mostly helps with my GI issues caused by lupus.

I hope it works well for you! Let us know how it goes and if you have any more questions.
Stacie
Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Lupus, Sjogrens, Raynaud's, Hashimoto's and Celiac Disease
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Vitamin D-50,000 IU, Tramadol (as needed) and magic mouthwash (for mouth sores)


aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1434
   Posted 6/5/2009 4:49 PM (GMT -6)   
Hey Catzz! I took Imuran for almost a year! I had no physical side effects. Didnt even have the nausesness. The only thing it did for me was slightly lower my blood count. I started at 50 mg and over the year moved up to 150 mg. At that time I had my blood work checked every 2-3 months. One thing your doctor should have told you is it might take awhile for you to start noticing an improvement. Hopefully it will help you lots :)

Amy

 

21 years old...Systemic Lupus , lupus nephritis , raynoids , Carpal Tunnel

Ultram, Prednisone, Cell-Cept, Lisinopril,  Ambien, Flexeril, Darvocet, Ferrious Sulfade, Calcium, Vitamin B12, Aspirin 81 mg, Vitamin C


Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 6796
   Posted 6/5/2009 8:14 PM (GMT -6)   
I've been on Imuran for 5 years, originally prescribed for my Crohn's disease. Recently my rheumy upped my Imuran dosage to help the lupus. The only issue I have with Imuran is nausea if I don't take it with enough food. Lots of people with CD take Imuran and some experience fatigue/tiredness feelings. They have found taking it in the evening circumvents that issue.

The blood checks in the beginning are inportant to make sure your white count and liver levels are ok. Hope it works well for you.
Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, lupus, small fiber peripheral neuropathy, avascular necrosis, peripheral artery disease, degenerative disc disease, and a host of other medical problems.
 


omega
Veteran Member


Date Joined Jan 2007
Total Posts : 602
   Posted 6/6/2009 4:02 AM (GMT -6)   
I am one of the rare case that allergic to Imuran. It happened I think a few days after I started Imuran (maybe less than that, couldn't remember exactly). I lost all my hair, and my WBC dropped to almost none. My platelet count was pretty bad also. I had bad mouth ulcer and was hospitalized for 10 days. I looked like a person who had been through chemo. Again, the doc said I am one of the rare cases. The doc told me that most people can tolerate the drug.
DX SLE 1988; APS (Antiphospholipid Syndrome) Pred 10mg, Verapmil 40 mg bd (for migraine headaches), Cellcept 1000 mg;Omerprazole 40 mg; Warfarin; Calcium + Vitamin D 1200mg, Folic Acid 5 mg; Iron; Simvastin; pregablin 75 mg


mypearl
Regular Member


Date Joined Aug 2005
Total Posts : 215
   Posted 6/6/2009 7:28 PM (GMT -6)   
Catzz
This drug saved my life!!!!! I have been on literally everything. Arava (off due to hypertension reaction), Methotrexate (off due to pulmonitis reaction), Cellcept no response, and Im sure there is more but my mind doesnt want to think about it right now. I have been on it for 4 years now. Though I have some pretty bad ups and downs, I no longer have active interstitial lung disease or asthma due to this medication. It litterally has been cured. No Lie. I loose my hair in globs after I wash it but that has always been the case with me. My anti DNS DNA is still really active along with the low C3 C4 but Not have the active lung disease is wonderful. I still have the scarring though that will never go away but thats better than the life I was leading. I wish you all the luck with it. Other than the hair loss, I dont really think I have had any real problems with it.
pearl
sle 92, fibromyalgia 95, t4 fracture 06, hyperthyroid with nodules 05, pernisious anemia 04,
? lupus vasculitis lungs, osteoporosis, c3-4 t1 herniated disks 00, gerd, depression
APLS, hyperthyroid, thyroiditis, complex thyroid nodules, asthma, stiff heart with 4 valve regurg., hemolytic anemia, supraventricular tachycardia
meds:prednisone, plaquinil, imuran, hydrocodone, flexeril, ibprofen, asa, fosamax, prilosec,


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 6/6/2009 11:43 PM (GMT -6)   
I am on 200mg Imuran and have been on and off imuran for several years. It saved my life and I noticed almost immediate improvement but it can take some time. I have nausea so I take mine at night before bed. I have my liver checked every few months.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sj√∂gren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements, cozar


FW
Regular Member


Date Joined May 2007
Total Posts : 439
   Posted 6/8/2009 9:04 AM (GMT -6)   
I was on Imuran for 10 days. It took that long for me to react but the reaction was a doozy. Temp of 104, swelling along the spinal cord and intense head and body pain. Dr. said it was a"delayed severe reaction to the drug". Needless to say, I have no idea if it would have helped the lupus. I, too, was told it was rare to react like that, but anything is possible!
Good Luck!
Take care,
Fran

Dx: Lupus, sjogren's, celiac, severe allergies.
Daily Meds: Plaquenil, Zyrtec. Aciphex, Nasacort, Prozac, Ambien CR.
Daily Supplements: Calcium, B-100 Complex.
As Needed Meds: Epinephrine, Benadryl, Proventil, Xopenex, Tylenal, Darvocet, Prednisone.


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 5604
   Posted 6/8/2009 1:18 PM (GMT -6)   
Imuran is one of the "your mileage may vary" meds. I took it for 10 months, nothing good happened, nothing bad happened. Others have med reactions in 2-10 days. Then others have good results fairly immediately.

My thought is this: If the doctor feels its the next thing to try, he's the trained expert, give it a go!

Cheers,
Lynnwood, Co-Moderator: Lupus Forum
Life is far too important to be taken seriously. - Oscar Wilde, 1882


Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1207
   Posted 6/8/2009 4:38 PM (GMT -6)   
I have been on imuran for 4 years.  It has been around for AI diseases and transplants for decades and most patients tolerate it much better than prednisone.  Like all meds, some do not.  Doctors are very familiar with it problems and benefits.
 
My experience has been mostly good.  No side effects at all for 18 months then it hit my wbc, rbc and platelets.  After lowering the dose it has been fine....no problems.  Some patients experience an intolerance almost immediately and withdraw.
 
Personally, I would not hesitate to use it if my doctor wanted it.  It takes 4-6 months to become fully effective.
 
Bill
MCTD (lupus, scleroderma, polymyositis).  Diagnosed 2005.  Kidney, liver, GI tract, dysphagia, raynauds, Barretts esophagus, quadriplegic in 2005.  Recovered and now active in skiing, tai, chi, hiking, golf.  Meds: prednisone 2.5mg, imuran 50mg, amlodipine, benazapril, omeprazole, potassium, folic acid, vitamins, maxide and various supplements and vitamins.
 
Remain optimistic and you can overcome the odds.

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