My consultant wants to increase my MMF by a further 500mg for a few months whilst I am still on 5mg steroid. He is hoping that in the next few months for me to come off the steroids and then change to the other immune suppressant Azthorpine, (hope I have spelt this correctly). He has advised that this is sometimes given to women with Lupus during pregnancy due to this having less side affects. However, some of the posts that I have read on here the past few weeks - some people cannot tolerate this immune suppressant.
Could anyone advise why the side affects are less with this drug and if you have previously been on the MMF - which medication do you prefer. I know everyone's system is difference and some people tolerate certain medications. But any advice or info would be greatly appreciated. i am due to see my consultant on Tuesday to discuss the above - so I would like more information on these two medications to discuss further. I know the importance of the medications that I have to take - but it still scares me all the same.
Thanks in advance,Lulabelle x
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Lulabelle
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Hi lulabelle, I have been on steroids and hydroxychloroquine for over a year, and my rhumy started me Azathioprine 4 weeks ago, so l could reduce the steroids and hopefully get off them altogether, but from the very first tablet l started to feel unwell, thought it was the lupus, by the time l had been taking them for 2 weeks l started to get severe stomach pains, so bad l was unable to eat or drink for a week,l felt so sickly and the anti sickness tablets my doctor gave me did nothing at all, and strong pain killing drugs did not help either,. l have never been so ill, It finally fell in that it was the Azathioprine, l stopped them and phone my rhumy and he wanted me to go into hospital to go onto a drip as l had dehydrated and had lost over half a stone. He said it was the new drug, I did not go into hospital as l new after stopping the tablets l would soon feel better, and it took another week to return back to my normal self. I really thought l was dying as l have never known pain like it before . The problem now is my rhumy has ask me to read leaflet on two new drugs, Methotrexate,or Mycophenolate, as he wants me to soon start one of them, but the side effects read on both of them seem to be the same as the azathioprine, so l am dreading starting another drug for fear the same thing will happen again. I Hope this helps you it may be that it will not affect you the same as l know a lot of people take them with no problem. I hope you are one of those Good Luck, perhaps your let me know how you get on with the tablets, x x x x
Hi Lucy-May thanks for your post. I have great concerns with regards to the Azathioprine - as I have read similar posts the same as your's. I have been taking the Mycophenolate for the past 16 months and from the word go i have never experienced any side affects what so ever. That is why I am so reluctant to change to another immune sup present. I will be discussing this with my Consultant tomorrow and I will let you know hoe I get on. With all medications there are side affects, but some people tolerate more than others. it may be worthwhile considering any of the other two suppressants. Thanks, Lulabelle
i was put on azathioprine and was very ill so started me on mycophenolate, i thought hear we go again as they had same side affects as the azathioprine .
they started me on a small dose and built up to 2 500g twice a day been on this for a year and had no problems with it . it is hard to keep trying different medication but like you say everyone is different so hopefully you find the right one soon .xx
Thanks Charmaineholmes - i think that i will be giving the Azathioprine a miss lol! I think i will stay on the MMF, (Mycophenolate) as I have never had any problems whilst on this medication. i am happy that you have managed to find a medication that you are tolerating without any side affects - this Lupus and treatment is a minefield ! Thanks Lulabelle
I too suffered with azathioprine, very similar to lucy-may, I don't think I have ever felt that bad...ever, I also felt like I was dying.
I was on it for about 6 weeks, steadily going downhill, not knowing if it was the lupus or the medication.
The second to last time I took it, I felt worse than ever...and wondered how that was actually possible to feel that bad!, my breathing was bad, I was weak and exhausted head was spinning, I managed to get up the stairs to fall asleep and slept all day.
The following day (last time I took it) I thought I would take my steroids in the morning (7.5mg pred) and then take the Aza in the evening, so I knew better as to what was going on. Within the hour of taking, I couldn't breath, my throat had swollen and my skin peeled off the palms of my hands. I had awful heart palps that were far worse than previous and pains down my arm, my left eye drooped.
So it turned out to be anaphylactic shock reaction....however this is really rare apparently. I stopped the Aza, and then about 3 days later, I had some sort of kick back from it and during the night, my breathing was likened to the noise of a cat crying...my boyfriend could hear my from downstairs...but never thought that I should be woken, just that he would have to sleep away from me as I was keeping him awake!!! lol
So I don't want you to be put off taking it, as strong allergic reactions are apparently so rare they are documenting it for records, but just so you are aware that it is a very strong drug and can make you feel very poorly and not to ignore and get symptoms checked if you feel worse than before.
And having said all that I also know others who thrive on it.
I was also told that I must not fall pregnant on it....how far gone are you?
I think maybe, because you are expecting, you need to read up on the drug and decide for yourself and with your doctors advice regarding taking when pregnant. As it is not without risks.
Sometimes docs have to take all things into account and keep mum well and you would be very closely monitored, weekly bloods are a MUST for full blood count and liver function, all my blood (accept the first one) came back good.
But I do feel that if you were as informed as possible regarding pregnancy and taking Aza and possible risks while carrying, will help you come to the right informed decision for you. xx
Hi Missy - thanks for your honest post! What an awful and distressing time you have been through. I have been on MMF also known as Mycophenolate for the past 16 months with no problems. However, my Consultant wants over the next 6 months to wean me onto the azathioprine as he said that this has less side affects. However trhough reading other posts the last couple of months with regards to this drug - it sounds horrendous. I will be discussing this seriously with my Consultant as I feel if it isn't broke then don't fix it. I am currently taking 5mg of steroid per day as a maintenance medication - but my Consultant does not want me to be on these long term - in fact he wants me off them in 6 months. As he wants to first increase the MMF by a further 500mg - so i will be on 1500mg per day - i will be requesting that he decreases the steroid to 2.5mg as i hate taking all these medications. I also have to have my bloods tested every 4 weeks including my Myconphenalate levels - so they are monitoring me closely which is peace of mind. lol! no I am not pregnant - I think that would finish me off lol! Due to health problems I cannot have any more children. Let me know how you get on with your current medication and i hope your health improves! Thanks Lulabelle
Sorry, I thought cos you had mentioned being pregnant I thought that was why the change of meds...wasn't saying you put on weight or anything lol
And although mine and the others who have replied to you, might not be the most positive of replies regarding Aza, we are a very small section of people. I think when folks have had a bad reaction, we tend to see a post regarding it and think OMG I HATE that stuff!!!
You might prefer it and eventually you would probably be off of your steroids...This is why they tried me on it as sparing, to get me off the pred totally due to bone density.
So hopefully you might get a few positive replies soon for the benefits of it.
Good luck with everything and I hope if you do try it, it is good for you xx
Hi my Rheumy wants me to start this drug too not keen. looked at the side effects and thought do I need this? I am very sensitive to drugs which the docs are now recognizing this. It is so hard to decide what to do for the best I do feel for you. Still not sure what to do as the fear of another period of feeling bad due to drugs not the condition fills me with dread. I am going back to my homeopath I think before I even start to consider this option.
Hi Lulabelle, I have been on steroids (5mg) and hydroxychloroquine(400mg) for almost 14 years now and my rhumy keeps insisting with me to get of the steroids, but I have a lemma: "Nobody knows my body better than I do!!!" I know they are specialists but we all know that Lupus is still a very mysterious condition and that there are no two pacients alike, so they have to go round with there experiences, hoping for a positve reaction with a patient.
I just say to my rhumy if I'm capable of having a good day why should I choose to have a bad one.This medication is keeping my life to a moderate condition, obvious I've got my very bad days, but all in all very good days.
Have had a harder last 5 months, but only due to breaking my leg at my sons wedding, but back to normal now.
What ever you decide,remenber your the one going to go thought it. Wish you luck!!
I had an allergic reaction to Azathriaprine so could not take it but since I started Mycophenolate 9 months ago, slowly building up the dose, I have been fine and feel better than I have done for years. I have reduced my steroids from 8+ half to 6 and shall soon be down to 5.
Hi i am on 5mg Prednisolone, 500mg bd of Mycophenolate and 2mg Prograf bd. These have been given to keep my kidney transplant going after Lupus 'killed off' my own kidneys. To my knowledge i have no problems. Azathiaprine was a suggestion made by my dermatologist to take and the response from my renal consultant was a big NO WAY, bad thing to take! Hope you get sorted x
Hi, i am on 60 mg o preds per day and went on azathiropine 4x per day ... I had side affects but it was my liver count at 106 the reason they took me off them .... am now on mycophe 500mg 4 times a day an 60 mg preds ... i have t say it has its affects but am having a few gd days a week .... your choice the rd you go down but they way i saw it was I'll try anything to give my babies an i a better life .... i wish you all the best and be positive ... i know its hard trust me got... thinking o u sending hugs and kisses xx
Thanks for all your posts! I will give you a little update. Seen the Consultant on Tuesday, (also noticed a bald spot on the side of my head!) and mentioned this to him. He said that the symptoms that I have recently been having it would appear that the lupus is still active. They have increased my MMF by 500mg so now on 1500mg per day. When asked about any side affects due to the increase was told, sickness, diarrhea, heart palpitations and anxiety! lol something for me to look forward to! He said that this has to be started now as it will take 8 to 10 wks to get into my system. I am to go back in 10 weeks and he is to start reducing me off the steroids from 5mg to 2.5mg and then weaning me off. They will then see how I get on. I mentioned my grave concerns with regards to the Azthrioprine and he advised that we will discuss this at the next appointment. I will let you know how i get on!
I have been on both Azathioprine and MMF over the years (diagnosed 2004). I prefer MMF as it seems to address the lupus better. However, I also find azathioprine good now although in the past it was just not strong enough. I have not ever had side effects from the Azathioprine and I am reassured it's been around a lot longer than MMF - and the side effect profile (such as the long term potentially serious effects) are less.
I was on azathioprine for auto-immune hepatitis as well as the sle. I think there is a blood test which can be done to see if you are tolerant of it. It suited me very well, which helped both conditions and I was able to reduce the steroids a little to 5mg. I liked it very much and it made my thinking a lot clearer, so much so I managed a degree in history at the OU.
However, after about five or six years, it was discovered I had renal cancer, (unrelated to the meds). As an immune-suppressant I had to come off them to give my body chance to fight the cancer. All is well now on that front but the steroids have crept up to 7.5 - 10 mg daily.
Unfortunately my latest DEXA scan shows bone thinning, likely to have been caused by the steroids as I have been on them more than 10 years, so I am trying to reduce the dose, which is difficult as there is nothing else I can have to take up the slack.
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lol 
Weight - or lack of it
I have my 2nd appointment tomorrow with my GP with specialist interest in skin, first time since all this kurfuffle with officers at HB
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