Hi
This is my 1st post. Was diagnosed with RA in 1994 when I was 28 with 2 small children. Have had a very "bumpy" journey over the yrs. Trouble with consultants etc. Diagnosed with SLE and sjogrens syndrome in 2004. Had tried many treatments. Have been on hydroxychloroquine for many yrs with Azathioprine. Recently had trouble with low white cells so have stopped Azathioprine and started mycophenolate. I have lupus nephritis. Suffering at the moment with the change over of medication. Thanks x
Welcome Mogcat! Nice to have you, albeit under unfortunate circumstances. I hope the mycophenolate agrees with you and provides relief. ❤️xx
HiThanks for the reply. I'm struggling with the side effects of mycophenolate at moment but only been on it about 7 weeks so am persevering. I was told it would take 12 wks to get into my system. Xx
I’m on MMF 2G/day and was effective with me after about a week. Plus HCQ, one 200mg tab/day and 5mg Prednisolone every two days.
Kidneys affected by lupus nephritis stage 5 calmed down, proteinuria subsided, no frothy urine. But photosensitivity persists and some red rashes refuse to disappear.
HiFor some reason I have never been told what stage I am at with the lupus nephritis?? Not sure why. I haven't had as many issues with it as you are suffering. But so glad its helping with your symptoms. Hopefully once I have been on this medication for 12 wks + my pains will subside again xx
Wondering if your pains are due to SLE lupus inflammation of joints? Rather than drug side effects?Perhaps systemic steroids are required?
I was once on 40mg Pred 5 years ago but now as above and have sporadic joint pain particularly at night before next dose of MMF🧐
I just assumed it was more the medication as I had to stop Azathioprine on the Fri and start mycophenolate the next but only 1 tablet and build up. But as you say could well be part of a flare up. I don't really have great back up from rheumatologist so I usually end up getting on with things myself and putting up with pain, side effects etc . But thanks for that thought - good to look at things from all angles xx
I didn’t want to share this right away as to not take away hope, but I had to stop azathioprine too because of toxicity. I thought it helped a lot. I went on mycophenolate and did not do well with that either. Started getting mouth ulcers, high BP, blurred vision, very nauseous so had to stop that too. I do not have lupus nephritis but do have renal dysfunction eGFR 50-60 and we don’t know why. It’s stabilized so we just continue to keep check. I do hope your tolerance increases with time. I’ve heard the side effects get better with time.
HiThanks for being compassionate. It's hard isn't it to try to stay positive for someone else when your own experiences of a drug aren't good. I was the same in the past with methotrexate- really made me poorly but for others it's good. Just shows how individual we all are. I'm going to preserve for a while and see how I cope with the side effects. All very draining though xx
Wow your story is almost identical to mine, except that I am still on the azathioprine and a very low white cell count.
Please feel free to message me if you need to chat.
HiThanks for replying.
I struggled from beginning of 2021 with low WBC so had to stop the azathioprine and never really got back up to a full dose. I'm struggling with the side effects of the mycophenolate at the moment but am persevering as reading some of the replies here it will be worth it in the end. My kidney specialist has said that mycophenolate is the preferred drug over azathioprine especially for anyone with kidney involvement. It's hard going isn't it - feels like a constant battle sometimes. Take care xx
Hello, I don’t have Lupus but Still’s Disease which manifests as RA in my case with associated AI conditions Lichen Sclerosis and Interstitial Cystitis. I was diagnosed at 17 late 70s now nearly 60.I hope you find this site as much comfort as I have 😀
HiThanks for replying.
Gosh there are so many different types of immune disorders under 1 umbrella. But all linking slightly with overlap of symptoms. Are you on lots of medications? I have had to retire early as just wasn't able to work full time. I have run my own child care business for 30 yrs
With a business partner but she bought me out a yr ago . So had to come to terms with not being able to work as well as Covid and being unwell. So been a tough 2 yrs - as it has for everyone . Take care xx
Hi, sorry to hear you can’t work, you must miss it ?At diagnosis aged 17 the consultant told my parents the joint damage would be so severe I would be wheelchair bound. I am 60 this year and only just started using a stick and that’s due to a leg injury the RA has colonised rather than the RA itself. I use compression bandages and pain relief only and steroid cream for LS, I managed to come off all the hard stuff within 5 years but I’m oestroporotic (?) and restrict my physical lifestyle severely to protect my joints.
A good outcome from initial prognosis.
😃wishing you well
HiWow you certainly didn't let that negative diagnosis hold you back. Good for you. Keep battling xxx
WelcomeSorry you have such a bumpy ride. I think this is unfortunately the Lupus ride. However you have come to a great place for support and friendship. The last 22 months have been difficult i have found this forum , its support and chat invaluable .
I was misdiagnosed with OA and took 17 years to get a diagnosis . I have had Methotrexate, Azothiaprine and am now on Mycophenolate. I am on 1500mg a day. Supposed to be 2 in morning one at night but i find that gives nausea so i have settled on 1 three times a day. I had an unsettled gut for about 6 weeks when i started which was uncomfortable and i was very gassy . I have found taking omeprazole in the morning and occasional oil of primrose capsules help my stomach. It does settle down . 18 months down the line i actually feel this is one of the better treatments and personally i prefer it .
♥️🤗 Good luck M x
HiThanks for replying.
I started mycophenolate on Dec 5th
1st 1 per day for a week
Then 2 per day for a wk
Then 3 per day for a week
Then 4 per day for a week
Been on 4 per day for about 2 wks - 2000mg but am really poorly with the side effects. Nausea, sickness, stomach cramps, wind , insomnia and all my joints and general pain levels a lot higher. I'm persevering at the moment as I was told it takes 12 wks to get into my system properly. Having bloods every 2 wks. How long did you give it on 4 tablets a day before you were told to reduce it ? This is so helpful for me to take to people who know how I am feeling so many thanks xxx
MorningI am sorry you do sound rough, yes I titrated up like you 1 tablet at a time but the side effects kept on coming . For the first 8 weeks I was taking additional medication for the side effects . I also went on the blandest diet to see if that helped. (It didn’t but I lost weight haha)I had to stay on 500mg three a day never got to 4 and I think things levelled off at 3 monthes. However I will say I find the mycophenolate is the one drug I have had side effects with.For the stomach cramp I took buscopan occasionally. For gas ,oil of primrose capsules , For the joint pain I ramped up my paracetamol to 8 a day and drank even more water than usual ( to flush my system )and it has got better. By the way mycoph. can not be taken if you are on antibiotics no one told me that one until recently ! I hope it works out for you as I feel better on it and hope you eventually will too. Maybe in the short term speak to your gp about some medication for the side effects just to get you through these initial weeks , take care ,
M x
So glad to hear that MMF works for you. I will certainly get buscapan and oil of evening primrose capsules. As I take a lot of other medications I take 3 x 20mg omeprazole in morning so that's probably protecting my tummy. But may ask GP for anti sickness tablets. I'm sure the side effects will calm down soon. Xx
Hi Mogcat welcome to this friendly, safe space.I am sure that the lovely people here can advise you xx
Ahhh thanks so much. I already feel like I have had such useful information in just a few days xx
Hi Mogcat,Welcome to the forum.
Our situation is very similar, I have had Lupus and nephritis for 24 years and my journey has been a rocky one to say the least.
Glad you have found us...jx
HiThanks for replying. So good to speak you people who know what I am going through. What medication are you on ? Xx
Hi Mogcat and welcome to the group - sorry you are suffering at the moment - sending hugs 🤗x
Hi hope all goes we well with you , I'm not doing to great at the moment myself. 😍
HiThanks for replying. Everyone is very friendly. Sorry to hear you aren't doing great at moment either. Hard going isn't it 😔. Xx
It is hard going, never ending but we do plod on 😌
Welcome Mogcat! Wonderful that you've decided to join and share your experience. It sounds like you have had difficult years. How are you coping with Mycophenolate (MMF)? I was diagnosed 20 years ago, I was on Azathioprine back then. And when I was diagnosed with lupus nephritis about 7 years ago, I was put on MMF (2000mg/day). It's been a miracle drug, after 3 months my kidneys improved, and didn't suffered from side effects. I had a quick break (2 years due to pregnancy) but then back to it and my stomach suffered a little, but after a month it all improved. Best is to take it every 12 hours, at the exact same time. I do 8AM/8PM. xx
Morning I was interested in your advice about taking mycophenolate 12 hours apart . Hope you don’t mind me asking is that to reduce side effects or is that what works best for you?
And so do you take 1000mg twice a day?
I was given no real advice 18 monthes ago when I started it and it has been a bumpy ride but it does work for me 😊 thankfully
Take care M x
Hi Maddy,
Thanks for getting in touch. I know it's difficult to take start taking a new medication and not having real advice about it. Lupus can be a very bumpy ride, but things almost always improve 
I learnt this advice from transplant patients who take the same medication for life. And it is for keeping the blood levels of mycophenolate the same. With or without food. It helped me as I needed it to really kick in and stop my lupus nephritis asap. Hope this helps x I also take 1000mg twice a day. xx
HiThat's really good advice about the 12 hr gap for MMF- I will certainly make a concerted effort with timings. I am up and down with the side effects at the moment. Unfortunately our rheumatology dept here isn't that helpful with advice like that. I think they are very under staffed etc. I have learnt more on here in last few days than from anywhere. For example it was through a kidney biopsy that I was diagnosed with SLE and lupus nephritis about 15 yrs ago and given Azathioprine but only changed to MMF on Dec 5th 2021 when I had a new kidney specialist who said about changing. So glad to hear you are really benefitting from MMF - so positive for me. I am just persevering with side effects at moment and will see how it goes. Thanks for the advice xx
Hi Mogcat, Yes, it can be difficult at times to get advice from the hospital, especially lately with the pandemic. Good that you're on MMF as it works really well with lupus nephritis. I've read that you're on Omeprazole too, hopefully you were advice when is best to take it without affecting MMF. Sometimes doctors reduce a little bit the MMF/day for a couple of weeks so the stomach can get used to it, and then back again to initial dose. But only doctors should advice this.
Fingers crossed it all works for you xx
Hi Mogcat!
Welcome! You will get great support and advice here. There is always someone with a similar issue.
Xx Kay
Welcome Mogcat! Thanks for sharing with us, you will find you have lots in common with the people here. I can relate to your difficulties with doctors, diagnoses and medications. Some meds take forever to kick in, don’t they?! Keep reaching out, there’s lots of support here.
Hi Mogcat
Welcome to the LUPUS UK HealthUnlocked Community. We offer a free information pack which you can download or request at:
lupusuk.org.uk/request-info...
I’m sorry to hear you are suffering at the moment. I have done a search of our blog, and found the below two articles, which I hope you will find useful:
lupusuk.org.uk/starting-a-n...
lupusuk.org.uk/coping-with-...
I hope you find these helpful, but if I can help further, do please let me know.
Kind regards
Alida
I am puzzled - immunosuppressants or not?
Hi there, I too am new to this site, and struggling to get a diagnosis.
Is it Lupus or am I imagining things?
I am new here having finally been diagnosed with Crohn’s Colitis having previously told it was Ulcerated Colitis
Am I stark, raving bonkers? 🤤
