Hi,
I am 23 and I was recently diagnosed with Lupus. I have, apparently, no "lupus" symptoms but due a renal complication, my doctors found out that I have Lupus. They have prescribed my steroids (prednizone) and Mycophenolate. After reading the side effects of both meds I got scared to death. So, I'd like to know if you guys use or have used any of these meds and if yes, how have you reacted to them and the whole lupus disease at all.
Thanks!
I started at 80mg of Prednisolone 5 years ago & after a very slow taper am down to 5mg.
Initially I was treated with Plaquenil which put me in hospital, next Imuran & eventually Mycophenolate Mofitil 500mg x 4 a day.
I'm told Mycophenolate Mofitil is a very Kidney Friendly drug & is commonly used in Kidney Transplants.
Now classed as stable. Still operating at 60% of previously & now other stuff has 'caught up' as Lupus has aged me.
You won't be likely to get every possible drug reaction & side effect. Maybe not many at all or maybe even none. Keep a brief but regular diary of drugs dosages & any new symptoms if & as they appear.
Best Wishes to you.
Kaz xxxx
Welcome to LUpus Patients Understanding & Support (LUPUS) at HealthUnlocked.
I can understand you are feeling scared/anxious about lupus and these drugs. However, the other option is renal failure. It also does not mean that you will be on these drugs for ever.
The most important thing for you, is to stop the damage of your kidneys and to "make them better."
Mycophenolate is a disease-modifying anti-rheumatic drug (DMARD). Its full name is mycophenolate mofetil.
It is also known as "CellCept."
DMARDs dampen down the underlying disease process, rather than simply treat the symptoms. They reduce the activity of the body's defence system (immune system), which may be overactive in some inflammatory conditions.
Mycophenolate is used mainly to treat several different types of rheumatic conditions, including:
lupus and other rare connective tissue disorders including scleroderma
diseases in which there’s inflammation of blood vessels, for example vasculitis.
Mycophenolate may also be used after organ transplantation, for example in kidney transplants. This is to help stop the body rejecting the new organ.
Mycophenolate is usually taken as a capsule or tablet depending on the dose required, and is usually taken twice a day with food or water. They should be swallowed whole and not crushed or chewed.
Your doctor will advise you about the correct dose. Higher doses are usually taken as tablets rather than capsules.
Unless you have severe side-effects it's important to keep taking mycophenolate:
even if it doesn't seem to be working at first
even when your symptoms improve (as it will help to keep the disease under control).
How long does mycophenolate take to work?
Mycophenolate doesn't work immediately. It may be up to three months before you notice any benefit.
The most common side-effects of mycophenolate are nausea (feeling sick), diarrhoea, vomiting or stomach pain.
Mycophenolate can also affect your blood count (one of the effects is that fewer blood cells are made) and can make you more likely to develop infections.
You should tell your doctor or rheumatology nurse specialist straight away if you develop any of the following after starting mycophenolate:
a sore throat
a fever
any other symptoms of infection
unexplained bruising or bleeding
any other new symptoms or
anything else that concerns you.
If any of the symptoms listed above are severe, you should stop taking mycophenolate and see your doctor immediately. Generally, however, it's best to talk to your doctor before stopping or reducing mycophenolate.
Because mycophenolate can affect the blood count, and can sometimes cause liver or kidney problems, your doctor will arrange for you to have a blood test before you start treatment and regular blood checks while on mycophenolate. You may be asked to keep a record booklet with your blood test results, and you should bring this with you when you visit your GP or the hospital.
In other words, the doctor will keep an eye on you and ensure you will get better.
Don't take over-the-counter preparations or herbal remedies without discussing this first with your doctor, rheumatology nurse specialist or pharmacist.
Steroids (sometimes called corticosteroids) have a very powerful effect in reducing inflammation and although they don't cure the condition they will suppress it. They can be taken for a short term. They do have side-effects, as do all medication.
My advice to you is to write down all your questions and concerns and talk to your own doctor. Don't rely on what people tell you. Don't rely on the internet because many websites have wrong information and can scare you even more. There are many fraudulent websites, trying to make money from vulnerable people. If there is a cure - your doctor will know about it! If it costs a lot of money - it's a scam!
We also have another website called the LuPUS Message Board where you can also post questions and talk to other people. Registration is FREE and we offer free information and free online psychological support. We specialise in psychological support with our own counsellor/psychotherapist available.
By becoming a Member, you will have access to the private forums and because they are private, only Members have access and even bots and search engines are forbidden.
When you register, please use the following format for entering your date of birth: nn-nn-nnnn where n=number. Please use the "-" separator and not "/".
Finally, please go to: lupus-support.org/LuPUSMB and Sign Up.
I look forward to talking with you more!
Sometimes we need to talk to people who understand and who are not family or friends.
With good wishes!
Ros
Disclaimer: No attempt is made to diagnose or to make any medical judgement. You are advised to seek the advice from your own physician. LUpus Patients Understanding & Support (LUPUS) is not a substitute for your own doctor.
Hi 😊,
Though i am still not taking those meds, i want to tell you that you should not be worried of the side effects, however be observant about it and ask your consultant about the side effects that you may encounter 😊
Hello. I have SLE and have been on MMF since last July. I built up from 1g to 3g over 4 weeks. I'm still on 3g now. I know what you mean about reading the scary side effects, but to be honest I was more relieved that the doctors were willing to help me. I'd been on 2 x 200mg of hydroxy since November 2013 and it was not controlling my symptoms at all. I was struggling to hold everything together, being a mum to 3 children and a wife and running a home. I gave my notice in at work, as it was all too much. So when I was offered an immune suppressant, I was over the moon. I had 2 courses of steroids to tide me over during the time the MMF got working. bith courses were the same. 5 weeks in total. 2 weeks @ 20mg, 1 week @ 15mg, 1 week @ 10mg and 1 week @ 5mg. These made me feel human again. I had energy and could be the old me. I think really the MMF took until January this year to really kick in - so about 6 months. So I am currently on 2 x 200mg hydroxy, 3g of MMF and have steroids on my repeat to help me deal with any flares. I am also adding some Mepacrine into the mix, after seeing a new lupus specialist in April. Ultimately, lupus must be well managed with medication and life style etc, as the consequences of it not being under control can be extremely serious. Have you talked to your GP / Consultant about these drugs and your concerns? Can you speak to a partner or family members about it? If you Consultant thinks your symptoms warrant MMF and you have renal complications I would think it is necessary, to prevent further damage. If the MMF does not agree with you for whatever reason, there are other immune suppressants to consider. If you use the search facility on this site, you will undoubtedly find other posts on MMF and other such medications. I know it's a lot to take in when you are first diagnosed and it can seem overwhelming, but you will find your way and using this site for info and support will help you a lot too. My best wishes. Wendy
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