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02-13-2007, 11:34 AM   #1
ruthymg
 
Imuran - side effects

I'm not sure if this has been asked before so sorry if it has. I started taking Imuran again a week ago and since then I have had really achy legs, they feel like they need to be stretched all the time. The muscle ache is in my calves and the sides of my thighs and reaching as far up as my butt cheeks. I'm even uncomfortable at night time and can't seem to get comfy for ages because of my uncomfortable achy legs. I have increased my dosage from 50mg today to 100mg and wondered if anyone knows whether this is down to taking Imuran and if so, now I have increased my dosage, should I expect it to get worse?. I didn't have this bad a problem before I started it again, so I think it has to have something to do with Imuran.Does anyone have any ideas on remedies, herbal or medicines, I'll try any.

Also I have noticed that over the last couple of months, I have been having quite a few hot flushes, usually when I have only done a little, or not enough to warrant a hot flush through doing too much if you know what I mean. I wondered if anyone else has problems with these, is it just my crohns playing up? or not?

Any experiences or advice would be greatly appreciated.


Ruth
02-13-2007, 01:48 PM   #2
katiesue1506
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Hey Ruth! I'm on 150 mg of Imuran and have been for a couple months. More than likely its not the Imuran... because Imuran can take a while to kick in. But i do have achy legs and joints and my arthritis doctor called it arthalgia... and basically its just crohn's related. He just said to take Tylenol and ice the legs when they get swollen... he also suggested cortisone injections for when they are really bad.

I have hot flashes all the time... which I know mine come from spiking fevers which is also crohn's related. But those are just my symptoms.
02-13-2007, 03:53 PM   #3
ruthymg
 
mmm, maybe these symptoms of mine are just down to the crohns then. Tylenol??? sorry I haven't heard of this, is it a muscle relaxant?

Ruth
02-13-2007, 07:46 PM   #4
katiesue1506
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Wow... I've never met anyone who didn't know what Tylenol was... but I bet you aren't from the US... Tylenol is kinda like Aspirin only its processed in the liver instead of the stomach... I think... one of them is in the liver and the other is in the stomach, but I think the reason Crohn's patients can't have aspirin or Ibuprofen is because its processed in the stomach and can cause stomach ulcers. I could be COMPLETELY off though LOL so don't quote me on this
02-14-2007, 05:16 PM   #5
JUNE
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ruth I have had those same problems with asacol. and the doc to told me it was just the crohns. but I threw my pills away and all my pain and hot flashes went away. So yes it could be the pills.
Listen to your body. the doc is not right all the times. They are just giving you the pills you have to listen to your body.
JUNE
02-14-2007, 07:06 PM   #6
DanSJVDavis
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Tylenol is Acetaminophen. I've noticed the folks on the isles use the actual Latin derived names for the meds so you might know that one.

It's just a mild pain reliever/fever reducer and is supposedly the only safe over the counter pain pill Crohn's patients are supposed to take.
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02-15-2007, 06:34 AM   #7
Mazen
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Tylenol has paracetamol. I think in the UK it's called Panadol...

As for Imuran at a dose of 150 mg, it caused me liver toxicity and made me very sick. When the dose was lowered to 50 mg (which I take now), I felt good again. the only thing is I still have somewhat elevated bilirubin (1.4).
02-18-2007, 06:01 PM   #8
ruthymg
 
I've heard of Panadol but not Tylenol or Acetaminophen???. We generally get paracetamol or paracetamol and codeine over the counter here for pain relief in crohns or colitis. Its bugging me this now, gonna have a look on Wikipedia!!!


Ruth
02-18-2007, 06:12 PM   #9
ruthymg
 
Tylenol is a popular American brand of drugs for relieving pain, reducing fever, and relieving the symptoms of allergies, cold, cough, flu, sold by Johnson & Johnson. The name is derived from N-aceTYL-p-aminophENOL (APAP). Its original, flagship product, acetaminophen (called paracetamol outside of North America), is marketed for headaches, fever, muscle and body pain, arthritis, and joint pain. It is available without prescription ("over the counter") and has few side effects which is why most hospitals in the U.S. choose it over Ibuprofen or other mild pain killers/fever reducers. It is also benign in the sense that in reacts with very few medications. In addition to products related to allergies and cold, Tylenol also sells a stronger pain reliever containing codeine. (Taken from Wikipedia)
So its Paracetamol then, now I know what it is lol. . . . . .


Ruth
02-20-2007, 08:38 PM   #10
wildewinde
 
Hi,
Sorry to hear about your leg problems.. I know how painful legs can get.. I was getting severe cramps in my legs and feet, every time I took methotrexate.. I finally asked my doctor about them.. He prescribed quinine tablets.. I have found that if I take 1 tablet of quinine on the day I take the methotrexate, and 1 on the day after.. I don't get the cramps anymore..Also, one of the things I did for quick relief, when I got these cramps was to try to walk or rub them out, and then I would apply FLEXAL to my legs, and feet, and wrap them in ace bandage and keep my feet elevated.at night. This also helped to take the edge off, so I could sleep. Hope this will help..
02-21-2007, 02:17 PM   #11
ruthymg
 
Thanks for the advice Wildewinde. I worry about not moving my legs about enough, only yesterday my toes were a little swollen, think that was due to lying down and sleeping so much after the anaesthetic on Monday.

Ruth
02-23-2007, 05:34 AM   #12
andilynn09
 
I do have some leg pain, more joint pain though...knees, ankles, wrists and hands. These things can be caused by Imuran, but it does take several weeks (if not months) for it to really take effect in your body. I have been on Imuran for over 6 months now, and the pain seems to come and go. I think more than anything it is probably a side effect of the disease itself, but the meds can play a small part in it also.
02-23-2007, 01:37 PM   #13
ruthymg
 
You see my theory is that I probably won't need a long time for my body to get used to Imuran as I was taking it before for a few years and I only stopped taking it for about 3 months then started it back up again, so I'm sure its still in my system from last time and its that thats causing the lag aches. I ached before and then didn't for the 3 months I wasn't taking it, too much of a coincidence if you ask me.


Ruth
02-25-2007, 05:14 AM   #14
Brando
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if you want to try an herbal way out, try some probiotics. they changed my life. Primal Defense by Garden of Life is what i use (vitaminshoppe.com has them) although i would talk with your doctor about using them first if you are on immunosuppressant meds. usually isn't a problem anyways but i would at least call them and ask. if they work well enough, you may not need imuran anymore!
02-25-2007, 11:43 AM   #15
ruthymg
 
Hi Brando, welcome to the forum. Thanks for the advice, I keep meaning to try probiotics but they're quite expensive over here and as I understand you need to have 2-3 pots aday of say activia for it to have any effect. I will get around to trying them as everyone says they are really good.


Ruth
02-25-2007, 01:03 PM   #16
Brando
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i would not recommend activia as it kinda counteracts itself with all the sugar in the yogurt. try a true probiotic blend of some sort.. most health stores have something or another. some brands are more effective than others and the one i mentioned is pretty potent.

As for the expensive part, yes it costs a little bit of money but I would rather spend $20-30 USD on some probiotics that work than hundreds if not thousands on 6mp, remicade, steroids, etc.
02-25-2007, 01:12 PM   #17
ruthymg
 
mmm, know where you are coming from, and in your situation I totally agree. However, over here, we don't pay for our drugs directly as we pay more in taxes from our wages. My dilemma is that I'm only on basic sick pay at the mo and my hubby is earning just enough for us to run our home and look after our two kids so we have no spare cash. Having said that though, I have just saved myself the cost or a prepayment prescription charge certificate for my drugs as I am now exempt from paying and so I suppose I could get some with that. In fact I think I will.


Ruth
02-25-2007, 01:50 PM   #18
Brando
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ask your doc if probiotics will mess anything up before you take them if you are in fact taking immunosuppressant meds. usually it isn't a big deal but he will probably tell you they wont do anything.. but then again they aren't a drug he can perscribe to you
03-05-2007, 08:13 PM   #19
DarrylP_Ajax
 
I have been on 250mg/day for a couple months now, i have a little ache in my legs, however, i had that while i was on the prednisone as well, so i just associate it with the crohns. I find with the Imuran, i have little relapses every 5-6 weeks where i get gas/cramps back for a week or so ,then it goes back to normal, the relapses are annoying but i am trying to avoid prednisone as much as possible
03-06-2007, 05:27 AM   #20
Mazen
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You can have natural Activia which has no sugar in it. Or maybe look in natural food stores or supermarkets for natural yoghurt or Kefir which specifically states it has live cultures in it.

I once asked my doctor about probiotics, and he said eat yoghurt instead. since then I try to eat lots of natural yohgurt.

Now i'm trying to take some Acidiphilus capsules. But I'm seeing no effect yet.
03-06-2007, 04:24 PM   #21
ruthymg
 
Mazen, why did your doc say to eat yoghurt instead of probiotics???


Ruth
03-06-2007, 07:37 PM   #22
carolinajak
 
ruth, I had some similar leg pains when I got out of my first surgery. i couldn't get to sleep at night because they bothered me so much. i did a little research on supplements and ended up taking horse chestnut extract (HCE). its support to help "leg vein circulation". not sure if thats what did it for me, but once i started taking them my legs did fine in a couple days and started back some once i went of them. it could of been psychosomatic i suppose, but just throwing in my experience. i also read that HCE helps a lot with hemorrhoids over time.

good luck with the imuran.
03-07-2007, 04:14 AM   #23
Mazen
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I think my doctor doesn't like supplements that much. He also says that unless there is scientific evidence of their efficacy it's better not to use them. He only told me to take a multi with 100% RDA. He also accepted I take Omega 3 fish oil, because scientific evidence are their on it; but he just barely accepted it ......

I think each doctor is different, but most doctors are medically trained and they only trust synthetic medicines as per their education....

Have you asked your doctor about probiotics and what did he say? The main thing I'm concerned about is that I read a book on probiotics for IBD, and they say that if you take immunosuppressive medicine, like Imuran, you should be careful with probiotics, as in very rare cases even the good bacteria can infect you if you have a suppressed immune system !!!
03-08-2007, 04:34 PM   #24
ruthymg
 
I asked ages ago, and he was pretty much, well if you want to try them then go ahead sort of thing. I haven't asked whilst I've been on Imuran though, will have to ask again. I'm actually thinking about ringing him and asking to reduce my dosage of the Imuran because it makes me feel like shit all the time. I seem to pick up any little infection and its beginning to get me down. I'm also really tired all the time. The whole point of me taking 100mg of Imuran was to help with the final healing of my fistulas, but now they're healed so I would rather lower the dose or even stop taking it.


Ruth
04-02-2007, 02:48 AM   #25
Mazen
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Hi Ruth. I have been now suffering the same ache in the legs you mentioned before. It has been going now for about 2 weeks. Come to think of it, this same thing happened to me some 6 months back.

Did it go away for you? do you think it's the Imuran? I've read in some other thread that it may be B12 or potassium deficiency, have you tested for this?

This ache sometimes drives me crazy!!!!
04-02-2007, 03:22 PM   #26
ruthymg
 
Hi, yes mine has decreased significantly. I am sure its the Imuran though, I have been tested for potassium and B12 deficiencies and both were normal.


Ruth
04-12-2007, 06:46 AM   #27
Kev
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I am waiting to see if I have to start on Imuran, so this topic caught my eye.
Having never been, I can't offer any advice or words of wisdom gained from personal experience.. However, the whole 'natural' Vs 'synthetic' approach (or should that be debate?) issue with doctors is not just a battle of words.
Some folks just assume that a 'natural' source is better than a 'synthetic' one
and that natural products are safe and healthy. That's not always the case.
Poisons occur in nature, and many natural products can be toxic, either alone or in conjunction with other products. I think doctors tend to avoid natural or home/holistic remedies simply because these aren't regulated, tested and/or controlled the way prescription meds are. A person can't delve too deeply by accident into prescription meds thanks to the controls put in place by either governemt regs, the pharmaceutical industry, the pharmasists or our doctors.
There are no equivalent safeguards for natural, OTC pills, supplements, etc.. I am not saying steer clear of them.. but if you do take them, for gods sake do your homework. Pretty hard to sue your health food store if you OD, etc..
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