Help with Medication Queries? New to this board!

Back on steroids at 20mg per day for 7 days then to be reduced to 5mg gradually over the next 3 weeks. However, I am also on immune suppressants - Cellcept at 500mg twice per day. I HATE steroids as they scare me to be honest, my Consultant has advised that many dislike prescribing them, but as I had had a little blip I may need to go on them for a further 6 months. He mentioned that once I have been on 5mg for a couple of months and if my immune system has calmed or gone back into remission, that my Cellcept will be increased by a further 500mg for a further couple of weeks/months. I am concerned again with regards to the side affects that these also have, but i DON'T have much choice this moment in time. My Consultant advised that once the increase in Cellcept, (which can take a few weeks), is in my system that I will be taken off this and put onto another immune suppressant which is normally used for women who are trying for babies who have Lupus. He said that this drug is known to have less side affects, especially over long term use, as I will most probably be on them for life. For the life of me, because it was such a lot of information in such a short period of time, I cannot remember the name of the drug. Does anyone know what this is called? Are any Lupies currently taking this medication and how do they feel about this? Also whats the length of time that a Lupie has been on steroids for as I am concerned about any long term affects of being on this drug. Any advice or feedback would be greatly appreciated.

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  • Cellcept is also called Mycophenolate Mofetil and I have been on 500mg twice a day for 6 months and a few days ago increased the dose to 500mg three times a day. All is going well and I feel so much better on it. I have also been on low dose steroids for 18 years and am aiming to cut the prednisolone down very slowly (half a mg every 2 weeks) until I get down to 5 mg. Fingers crossed!

    I don't really know which other drug you are referring to which is safer for pregnancy. Azathiaprine? All the drugs have unwanted effects on the body but what can we do? I think that we just have to accept it and not worry about it.

    Good luck.

  • Hi Jude!

    Lol! I call it Cellcept - can't get my teeth around the full medical name. I have battled with many medic's over the past 11 yrs with regards to my conditions, as I knew it was Lupus. They diagnosed me with Sjogrens Syndrome, (which I still have). Unfortunately, I took very seriously ill 26th Oct 2010 and was admitted into intensive care - I was one of the fortunate ones and due to the dedication, professionalism and caring staff I am still, (just about lol!), here. They diagnosed me with Lupus! I was discharged after 5 and half weeks and was on approx 27 tablets per day. I take 500mg Cell Cept twice a day, along with Ramipril 2-5mg twice a day for my heart - which was affected. Whilst in the hospital i was on 120 intra venous steroids and discharged on 60mg per day. Gradually this was decreased and finally taken off them wef 15th Oct 2011. However, it was very clear within weeks of stopping the steroids that my health slowly started to decline. Resulting in a viral chest infection, (23rd Dec 2011), which then went onto a Kidney Infection. Consequently I was admitted back into the hospital just over a week ago with suspected mild Lupus Flare. Thankfully the test came back negative - so the Cell Cept is doing the job and my Consultant thinks that it was a flare of the SS. This meant that I had to go back on steroids at 20mg last Tuesday and slowly decreasing by 5mg each week. My Consultant wants to increase my Cell Cept by 500mg approx March as it will take a few weeks to get into my system, before I come off the steroid. He said that it has always been his intention for me to then go onto the Aziathaprine as this has fewer side affects than the Cell Cept, (which I - if my system agree's with this new drug for life). He said that women are giving this with Lupus if they want or become pregnant!

    My first cousin has Chrohns and secondary SS - and she has been off and on steroids for the past 20yrs and she has worried me with the long term affects that this can have on the body, whilst I have no choice at present, it does scare me the amount of medication's that I take each day.

    I have been told that I am pre menopausal and that the Lupus can be hormone related and I have been reading that after the menopause in some women the Lupus, whilst always present, can go into remission. Have you heard of this?

    Where you diagnosed with Lupus 18yrs ago? and if so why have you only commenced Cell Cept now? Is this to assist you off the steroids?

    Finally there is to be a report on Granda ITN News tonight at 10 - with regards to a break through via scientists and stem cell research. They stated that this they feel with help in treating certain illnesses - I don't know if Lupus will be one of them, but it maybe worth having a luck. Thanks!

  • Hi there, I have been on steroids for a couple of years now, started off on a very high dose like you, then gradually reduced it and introduced the immuno-suppressants. I could not tolerate Methotrexate, azothioprine made me very sick, but cellcept didnt give me any side affects at all. The trouble was it didnt work, so my steroids can not yet be tapered off. I agree that steroids are not great to take, they can cause lots of side affects, but it seems as though your team are aware of this, and trying to get you off it as soon as they can. I am soon to try a more heavy duty IV treatment, so will see what happens there, but all I can say is be guided by your docs, and don't be afraid to ask them questions and tell them your fears. Take good care x

  • I have been on varying doses of steroid for about 25years with no long term side affects. I take calcium daily and an anti-osteoporosis drug for two weeks every three months. That seems to have kept my bones healthy. I was pretty well for years and down to about 4mgs - a maintenance dose according to my specialist. However about 18 months ago and post the menopause - sorry but I had heard this was unlikely too - I started to have a series of flares. I am currently on 15mgs of steroids and my doc is considering Azopriothin. What concerns me is I keep getting viral infections. I am in bed at the moment with a terrible sore throat, cold etc. it is the third time in 5 weeks. The infections have triggered flares in the past so I M very nervous about this. It is a bit of a vicious cycle. Infection lead to flare leads to more drugs which make you more vulnerable to infection. And so on. Anyone else share this experience ?

  • Hi - i was put on Azathioprine when I was first diagnosed 13 years ago and was doing okay with it until a couple of years ago I was rushed in with severe pain. Turns out the azathioprine had shrunk my pancreas and I now have to take a special creon tablet with every little/large thing I eat. On cellcept now.

    Have been on 5mg steroid for a few years now with this being increased either in tablet form or intravenous during a flare up. Any less than 5mg brings on a flare up. Was told to think long and hard about taking them by my rheumy. but the way I was then I was glad of anyhting to help. I have no regrets about starting them - they have allowed me to have some quality of life plus I have a fantastic rheumy. team at ninewells hospital that I know they keep a close eye on things. As the answer above says ask questions and be guided by the docs. and if still not sure read up, ask questions on this site and even get a second opinion if need be.

    I know what you mean about the vicious circle of infection/drugs/flares. I have problems with mouth ulcers and cold sores which need anti-biotics to clear then they bring on thrush!!!!!!!!!!!!!!

    take care - Irene x

  • Hi

    I had to have a kidney transplant because Lupus destroyed my own kidneys (Glomerulonephritis). I am on 5mg pednisolone daily, and 2mg Tacrolimus twice daily, also 250mg Mycophenalate twice daily. On such a low dose of steroids i have no problem but on higher doses, which i had to have at first after transplant and then for my scleritis eye flare ups (60mgs daily) well thats a whole different matter. I put on 20 kgs in weight in the blink of an eye, now mostly lost, and became a monster, feeling like a raging bull inside. Now i suffer the intolerable pain of any eye flare ups that sneak though the immune suppresion for about 8 weeks rather than up my steroid dose. Rather handfuls of paracetamol, (not allowed anti-imflammatories) than handfuls of steroids. I'm not allowed azathioprine for some reason. I can't say i've had any problems on my immune supressants but when a virus hits, it gets me good and proper, luckily not very often!

  • Thanks everyone for your very helpful, honest and informative posts! It has given me some food for thought. i am due to see my Consultant again wef 6th March - so I will discuss the above medicines in more detail with him. Even though I hate to admit it the steroids have 'done me proud' the last week - the mouth ulcers and blisters cleared up within a couple of days - thankfully i can now swallow, talk (or nag) as my other half says lol! and eat, eat and eat some more. I reduced the steroids to 15mg last night, this will be for a further 6 days, then reduce to 10mg then finally 5mg. The only gripe so far - is the lack of sleep due to the steroids - and us Lupies now how important getting enough sleep and rest is. Even a hot milk before bed and a good book doesn't seem to help. Also I am not as breathless! I will be weight lifting before you know it because of the steroids lol! I wish you all a speedy recovery from your recent/current lupus flares, you are in my prayers tonight! :)

  • Hi welcome have had lupus for 12 years never been off the steroids quite intolerant of the immunosurpressant was the on azothiaprine made me really ill . I am now on cellcept the drs call it mmf for short. Steroids have given me osteoporosis and insomnia at large doses. But have kept me alive brain &Heart stuff. Sometimes you have to suck iyherapief t and see with immunonsurpressant therapy to getting yherapief right one for you

  • In relation to the steroids, I was on low dose pred (5mg) for around 6 months. After a slight "hiccup" a DXA scan was ordered where I found out that my bone cells are not being replaced as quickly as they are being worn away (Osteopenia) particularly round my spine.

    I'm told this was a problem before I'd been on the steroids and that they had merely highlighted the problem, needless to say though, I'm now not allowed steroids at all... ever again... the irony is of course that they really helped whenever I was coming up to and during a flare.

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