I have been taking mycophenolate sodium (very similar to MMF) for nearly 6 weeks now and am at the full dose of 360 mg bd, currently tolerating the dose fine, but have had a lot of (seemingly random) fluctuations in my kidney function ranging from normal values of more than 90ml/min eGFR to 56 ml/min over the past few months. I am also currently on 20mg pred daily and had my first Rituximab treatment in mid october 2014 which has at the moment not had any or much perceivable effect. I was wondering if anyone else who has or is suffering from SLE has had similar treatment and issues with their kidneys and what sort of results they got from various treatments? Is it normal for eGFR values to fluctuate whilst in the early stages of taking Mycophenolate sodium or MMF ? How long does it take for kidney function to stabilise if ever with Mycophenolate? I am nearly 22 now this has been my only flare since my first flare at diagnosis at 17 in 2010 my initial treatment involved IV pred and then a combination of MMF and oral pred which helped the lupus nephritis very quickly. Treatment has not proved so effective with this flare and so was wondering about other peoples experiences?
Thank you!
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marni04
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Sorry to hear about your kidney function issues. Was wondering if you'd ever had a kidney biopsy? This is usually the starting point for indicating any scarring/inflammation in the kidneys along with 24hr urine sample to see if kidneys are leaking protein.
In my time with SLE I suffered with nephritis and had a kidney biopsy in 1999 aged 17 then again in 2005. I was put on MMF in 2005 but it didn't agree with me. I eventually was administered rituximab which gave me a good 4 years without any severe flares. Unfortunately in 2009 my kidney function began to deteriorate quite quickly and the renal specialist had no idea why. They tried me again with rituximab but it didn't have the desired effect as it did back in 2005.
By November of 2009 I had a kidney function of 15% and had to become a pre - dialysis patient which was my worst nightmare.
By March 2010 I was told I had end stage renal failure and began to be worked up for starting dialysis.
I dialysed for just over 3 years and last year 2014, 7 days before Christmas I was successfully transplanted. Things are going well with the new kidney but the road to full recovery is somewhat more difficult.
I'd be interested to know the answers to the questions I asked earlier in my reply regarding biopsy and urine samples.
Thank you so much for your response - I have regular urine tests all of which show a huge amount of leaking protein although my kidney function in my blood tests is generally normal although it has fluctuated on and off dipping a little at times. I have never had a biopsy and my renal specialist suggested that if my urine still shows as much protein in the next month the next step will be to have a biopsy - I am surprised they haven't requested this previously.
How long did it take you to respond to the rituximab? I am loosing faith a little as I am at about week 12 now although I have read if you are to respond it can take up to 16 weeks ?! Also have you ever been treated with cyclophosphamide as they have suggested this as a potential route if things deteriorate or don't improve over the next coming months but no it can have some pretty awful side effects so am very anxious about this as an alternative ?
I am sorry to hear about your dialysis but glad to hear things are improving since your transplant! Thanks again for your response this is very helpful as in my 5 years since diagnosis I have never actually met anyone else with SLE and so have only ever discussed things with my rheumatologists and renal specialists!
Firstly I'm glad to hear that a possible biopsy is on the cards as I feel this will give you definitive answers. It can be very frustrating seeking for answers to our ailments but I guess this is the nature of SLE, such a complex condition.
The first time I had rituximab in 2005 I cannot recall how long it took to respond. But around this time I experienced a massive flare and was hospitalised for 5 months, due to a rare blood clotting disorder called TTP. Eventually I was given rituximab. I remember describing to people that I feel like I've had a body transplant. During my 4 years of remission following this drug I did my teacher training and became a Qualified Teacher. Unfortunately my career didn't really take off because the year I graduated and started my first teaching job, is when my kidney function began to deteriorate.
In response to cyclophosimide, I've had it both orally and intravenously. Rituximab and cyclophosimde are chemotherapies and are highly toxic so the side effects aren't pleasant. I think with chemo you can feel awful when having it but I suppose you have to go through the worst to get better. I've suffered with hair loss and have 3 distinct bald patches and experienced nausea and diahorrea.
If you haven't met anyone with SLE might I suggest you find out if there are any support groups in your area or becoming a member of Lupus UK. There are telephone contacts around the country then can offer help, support and advice. Also they hold Annual General meetings where specialist doctors do presentations and its an opportunity to rub shoulders with other lupus patients.
Yes I have been told by my Rheumatologist that sometimes the most beneficial effects of Rituximab appear following the second infusion after 6 months - which I would have in April. Although I am hoping it will kick in before then as with the Mycophenolate, if not then my renal specialist seems keen to use Cyclophosphamide. I am much more concerned about the side effects of this than I was with Rituximab as with the implications of infertility I have been told of, due to this I am desperately hoping it doesn't come to that!
I did experience alopecia and lost about 50% of my hair with this most recent flare, although at the moment its not particularly noticeable as it has begun to grown back and I had an unnaturally thick head of head beforehand, however I have heard the hairless with Cylo is particularly extreme.
During your 4 years remission did you continue to have Rituximab biannually or less often? I have also had to put my degree in English on hold due to this flare but fingers crossed will be able to return in october.
Thank you so much for your advice it really is very helpful! I am going to enquire with my Dr about local support groups and becoming a member of Lupus UK I think discussing these issues would be very helpful!
I've only ever had rituximab twice and i had both infusions within my hospital stays never months apart.
I really do hope you can get back to your degree. Going to university and working made me feel so normal. Unfortunately during flares this can get taken away. Due to my kidney problems I haven't worked since 2009 and this has been the longest time out of the workplace since diagnosis.
However I have kept myself busy doing voluntary work and tutoring which was very important to me.
I don't know what part of the country you're from but maybe if you create a post and see if there are any groups in your area, somebody maybe able to help you. All the best
I've only ever had rituximab twice and i had both infusions within my hospital stays never months apart.
I really do hope you can get back to your degree. Going to university and working made me feel so normal. Unfortunately during flares this can get taken away. Due to my kidney problems I haven't worked since 2009 and this has been the longest time out of the workplace since diagnosis.
However I have kept myself busy doing voluntary work and tutoring which was very important to me.
I don't know what part of the country you're from but maybe if you create a post and see if there are any groups in your area, somebody maybe able to help you. All the best
Yes I also find keeping busy, even with very small menial tasks really help you to remain sane! Thank you yes fingers crossed I will be able to return in september! I have spoken to my rheumatologist and she has given me the details of a local support group at the hospital which is very near to my house so is ideal!
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