Good morning all. I started imuran about 3 weeks ago. Rheumy said we will start “low and slow” because I seem to have a reaction to everything. I’m up to 75 mg at night now. It seemed ok with just nausea. Ok that’s annoying but I’ll stick it out. But now, I’m having stomach pain when I eat. I know it can cause acute pancreatitis and I don’t think it’s that. It’s not severe but it’s really uncomfortable. I’m trying to stick with it. I don’t know if I should tell my rheumy or not. I’m afraid of running out of medication options honestly. I’ve gone from plaquenil, to chloroquine, to cellcept and now imuran. Will this pass as my body adjusts? I told him about the episcleritis in my eye and he said that’s going to be a reason to increase the imuran next week when I follow up in the office. Obviously, my body is still in a flare and still attacking itself. I’m so tired and thoroughly drained with no energy. Everything is overwhelming…like someone’s post about showering…I get it! It seems like a major exhausting process. I don’t know what to do. I’m so tired of feeling like this and feeling betrayed by my body. I’m tired of complaining at home but everything thinks I’m fine and I’m soooo not fine and no one gets it!
When I started Imuran I had the same problems. My Rheumy gave me Losec ; she said I had stomach ulcers. This could be the issues. I’d definitely suggest bringing it up. If it is a stomach ulcer you’d definitely want to get it treated sooner rather than later. I hope you find some relief soon.
Ask the doc to give you Dexilant to take in the morning…your tummy will be protected all day!
I took Imuran for a while last year. I really didn't have any noticeable side affects, but it didn't help my problem (critically low white cells). They don't know what else to do...I still wake up every morning and take each day as it's dished out.
Good luck.
What I take is Zantac (ranitidine) 300 mg 2 times a day. There's other acid controllers Prilosec, Pepsid, Tegamet (?). Although these drugs are OTC, you should check with your doctor for dosage and if he/she wants you to take it.
If I don't take the drug am and pm, my stomach hurts, I mean really hurts. Take the pills along with a meal or just after.
You got to hold on.
I totally get it!! I feel the same way! I love when family and friends call and I’m sleeping at noon and they say “OMG …are you STILL sleeping?” They all know I have Lupus and that I normally don’t sleep that long, but when I’m in a flare or tired, they act so shocked. When I’m feeling better and out doing something they tell me I should rest. Seriously, I really think people who don’t have immune issues may never truly understand. It’s just something I think we have to live with, but all the books that say we can live a long full life, which leads all my loved ones to believe it’s not that serious. It’s frustrating because as patients we all know how serious it really is and feels!
Best of luck on Imuran! I have not been there yet so I’m no help there. I am starting to believe that the best thing we can do is go on the strictest diet of no gluten,grains, organic free, very lean meats, no dairy, etc. Sounds horrible but everyone I spoke with, who has done this, say it’s a life changer! Nothing else worked. Not one person said it didn’t make a drastic difference. I just need to bite the bullet and try!! Best of luck! OllieVy
Hello. Im Margaret. I havnt posted anything for a long while. I ws positively diag w/SLE 20 yrs this month. Ive been on so many medications. Atypical starter meds, including Plaquinil, muscle relaxers, codein for pain. Plus meds for Colitis of my GI track. I hd/still hv daily painful migrains. But in 1997, (Incidently, Im a nurse so Im a rerrible patient), I developed life threatening Cerebritis.I had a stroke @ age 36. Hospitalized on very high steroid drip for approx 5 days. The steroids saved my life. But now since Ive needed to be on prednisone as a maintence med the steroids hv fast become a bigger problem then my origional lupus problems. It has become a nightmare knowing the only treatment to control /eliminate life threatning crises/flare situations are the friggen steroids. So I decided to try the widly used steroid sparing meds. All the biologics (including Cell Cept, Lyrica & Imuran). In fact those 3 are now on my “Allergy” list. Since Imuran is the topic, I will stick to that subject. Imuran gave me terrible anemia,severe bruising, abnormal EKGs due to interferience of my T-wave flow activity. Eventually w/severe exhaustion came muscle atrophy. Im talking ab all my muscles nvolved. Inluding chest wall (costachondritis), severe leg aches, to evential losing 50% loss of muscle strength in my arms/legs. Welcome to “Caneville”. So now what I feel is good rule of thumb…is to talk w/your Dr ab your new meds. If it makes you worse then better. Theres a reason for it. My anemia also Imuran related. I developed an ulcer, resulting in blood transfusion. I am now refusing any new biologics. And getting off steroids. Im dwn to 9 mg day. Once I made up my mind, its been less scary. The steroids hs given me severe bone density disease. I need back surgery for herniated discs. Im @ a point now, I will risk CNS lupus flare, if I can walk, post surgery w/out a cane. Wish me luck, as I will for u. Keep me posted. Thanx, Margaret
OllieVy said:
I totally get it!! I feel the same way! I love when family and friends call and I'm sleeping at noon and they say "OMG ...are you STILL sleeping?" They all know I have Lupus and that I normally don't sleep that long, but when I'm in a flare or tired, they act so shocked. When I'm feeling better and out doing something they tell me I should rest. Seriously, I really think people who don't have immune issues may never truly understand. It's just something I think we have to live with, but all the books that say we can live a long full life, which leads all my loved ones to believe it's not that serious. It's frustrating because as patients we all know how serious it really is and feels!
Best of luck on Imuran! I have not been there yet so I'm no help there. I am starting to believe that the best thing we can do is go on the strictest diet of no gluten,grains, organic free, very lean meats, no dairy, etc. Sounds horrible but everyone I spoke with, who has done this, say it's a life changer! Nothing else worked. Not one person said it didn't make a drastic difference. I just need to bite the bullet and try!! Best of luck! OllieVy
I was just talking to someone the other day about drastic diet changes. She suggested juicing. I have someone else I know who swears by the gluten free thing. I agree…I have to bite the bullet and just do it it!
MUGS said:
Hello. Im Margaret. I havnt posted anything for a long while. I ws positively diag w/SLE 20 yrs this month. Ive been on so many medications. Atypical starter meds, including Plaquinil, muscle relaxers, codein for pain. Plus meds for Colitis of my GI track. I hd/still hv daily painful migrains. But in 1997, (Incidently, Im a nurse so Im a rerrible patient), I developed life threatening Cerebritis.I had a stroke @ age 36. Hospitalized on very high steroid drip for approx 5 days. The steroids saved my life. But now since Ive needed to be on prednisone as a maintence med the steroids hv fast become a bigger problem then my origional lupus problems. It has become a nightmare knowing the only treatment to control /eliminate life threatning crises/flare situations are the friggen steroids. So I decided to try the widly used steroid sparing meds. All the biologics (including Cell Cept, Lyrica & Imuran). In fact those 3 are now on my "Allergy" list. Since Imuran is the topic, I will stick to that subject. Imuran gave me terrible anemia,severe bruising, abnormal EKGs due to interferience of my T-wave flow activity. Eventually w/severe exhaustion came muscle atrophy. Im talking ab all my muscles nvolved. Inluding chest wall (costachondritis), severe leg aches, to evential losing 50% loss of muscle strength in my arms/legs. Welcome to "Caneville". So now what I feel is good rule of thumb...is to talk w/your Dr ab your new meds. If it makes you worse then better. Theres a reason for it. My anemia also Imuran related. I developed an ulcer, resulting in blood transfusion. I am now refusing any new biologics. And getting off steroids. Im dwn to 9 mg day. Once I made up my mind, its been less scary. The steroids hs given me severe bone density disease. I need back surgery for herniated discs. Im @ a point now, I will risk CNS lupus flare, if I can walk, post surgery w/out a cane. Wish me luck, as I will for u. Keep me posted. Thanx, Margaret
Thank you for your reply Margaret. I feel like the preds are going to be the only thing that I can take too and we both know those are a double edged sword. I have back surgery and need a fusion which I’m putting off as long as I can walk. So, I totally get it. My back pain is out of control right now…everything hurts worse since the imuran. Hmmm…isn’t that what it’s supposed to help?
I understand, I go through those problems too. I cannot help with an answer to the medication, I have never taken it. Sorry.