First Post :) Cyclophosphamide to treat CNS Lupus/ Kidneys- Advice please?!

Wondered if anyone could help by sharing there experiences with Cyclophosphamide?

I have SLE and now Lupus Nephritis, I have had bad illness this year first sign of organ involvement in May when bloods showed my Kidneys were leaking protein (biopsy in september showed stage 3 verging 4 damage). my methotrexate was increased to 20mg weekly, in July I saw my rheumatologist after getting migraines/nausea/sun sensitivity I have literally been confused since then! after admitted to hospital in September my mouth went numb and brain shortly shut down MRI scan showed inflammation in my brain treated with 45mg prednisolone a day with 750mg MMF (a previous higher dose of MMF was affecting my liver). my brain is functioning better since September but last week numbness in my mouth again and slurring speech new areas of inflammation showed on MRI scan. scared that I could have a stroke at any time.

now on 60mg prednisolone and Drs want to change MMF to a stronger treatment- IV cyclophosphamide fortnightly for 6 months reducing the steroids over time. Drs have informed me that this drug can make you infertile I am only 25 and have not had children they recommended that I freeze my ovaries (new drug not sure of name yet) its all a lot to take in.

any advice at all would be much appreciated

17 Replies

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  • Hi , I have stage 3 lupus nephritis, after a really bad flare which put me in hospital I was given intravenous cyclophosphamide for 3 months . They wanted to give it for 6 months but I said no because a girl in the next bed said after 4 to 5 months you start to lose your hair . They will also try to give it initially without any anti sickness tablet prior to the infusion to see how you react to it , again the girl told me that after her first one she was very sick but after the others she was ok because she had been given the anti sickness tablet prior to infusion . Because of her advice I insisted they gave me anti sickness medication before the infusion and I was fine and I insisted i would only have it for 3 months . They also give you a very large tablet to take and casually tell you that's because there is a risk of bladder cancer from the cyclophosphamide . Because of that I refused cyclophosphamide when it was offered to me again a couple of years later . Thats my experience but you could need it , I did not have the brain swelling although I did have a brain tumour years later and a mini stroke caused by a blood clot in my brain following the surgery but that was a different thing altogether if you had anything like that it would have showed up on your MRI scan . What have they said about your brain inflammation and stroke symptoms? Are they testing you for anything else ? Have you ever had a blood clot ? With regard to infertility issues I was older when I had cyclophosphamide, they asked me if I planned having anymore children and I said no . It's a difficult decision for you these things are so risky , I would definitely ask if there are other options I know some people on here have talked about azathioprine instead of methotrexate or Mycophenolate because it doesn't cause problems with pregnancy etc . I am sure you will get lots of replies on here , my advice is based on my experience others may have had different experiences with it which I am sure they will share with you , take care and I hope you are feeling better soon x

  • Hello,

    I will definitely ask them about the sickness tablet I was aware of the possible hair loss, I have had some hair loss already from the drugs I have been on in the past few months, had you lost much after finishing at 3 months?

    Dr didn't say I had a blood clot but have referred to my episode as a 'mini stroke' they say there is is inflammation showing restricted blood/oxygen going to my brain.

    I will also look into azathioprine I don't want to risk my fertility if this isn't a root a need to take. But have been assured this is the right drug for me and getting better now is my priority.

    Thank you for much for sharing your experience xx

  • I didn't get any hair loss at all I have been lucky with my hair have not had that symptom I get quite a lot in my hair brush and little strands drop out but that's it , I have always had very thick hair which has helped . My lupus nephritis has been stable on Mycophenolate now for years and I am now down to just 5mg prednisolone a day , I take extra if I have a flare . I was on much higher dose of prednisolone originally , I have had lupus for 15 years now . I hope they find the right combination of medication to improve your conditions soon x

  • Hi,

    Have they considered something like Rituximab at all? Do you go to a Lupus centre of Excellence and have you seen a nephrologist?

  • Hello, thanks for the questions- I do not go to a Lupus Centre of Excellence.

    I was diagnosed with SLE in 2012 by my rheumatologist when referred by my GP and seen him ever since Rheumatologist referred me to a nephrologist in July- who has good knowledge of lupus and was going to try Rituximab next if I had anymore problems with the MMF affecting my liver. It is the rheumatologists that have suggested cyclophosphamide after my most recent hospital admission (I saw a neurologist who appeared to have little understanding of lupus). I am due to see the nephrologist on Monday she will be speaking to my rheumatologist before my appointment to discuss the drug change, I will definitely ask her again on Monday if she is agrees cyclophosphamide is the more suitable option for my condition than Rituximab?

  • Hi Hannah,

    I don't have Lupus but another complex auto immune disease. I get Infliximab infusions which are another biologic drug slightly different to Rituximab.

    I know from experience that it's important to get the most experienced Consultant you can involved. I know the name of a great Neuro in London who has experience in auto immune disease if you want the name.

  • Hi HannahLupus,

    Hopefully you’ll get some helpful comments from members with their experiences of cyclophosphamide.

    You can also read more about people’s experiences by looking at some of the older posts on this forum too - healthunlocked.com/search/c...

    We have a booklet about lupus and the kidneys which you may find helpful. You can read and download it at lupusuk.org.uk/wp-content/u...

    We also have a factsheet about lupus and the brain at lupusuk.org.uk/wp-content/u...

    It is definitely worth discussing your concerns about the course of treatment and any potential side effects there may be.

    Your consultant wouldn’t be likely to recommend this route if there were safer/more effective options for your case, but they may be able to help put your mind at ease about why this treatment has been presented to you as an option and how they will try to limit any potential adverse effects.

  • Hi my daughter 15yrs old diagnosed Sept SLE mild then 3 weeks later in hospital as gone to brain, she was told 6 cyclophosphamide infusions over 3 months, but only needed the 3, she had anti sickness prior to infusions, also only had small doses, first 1000mg then 2 x 500mg, she felt fine has little bit hair loss and now just started mycophenolate drug. we were told because it was such a small dose it should not affect her fertility and as she is so young and hopefully she won't have to have these again all should be fine.

    Do you know the dose they are planning for you?

    I know it's all scary but I also know this has helped save her life.

    I wish you all the best

  • Thank you, that's really helpful I definitely feel more positive about the cyclophosphamide after feedback and research I have been told they will be in small dosages but will have all details tomorrow. I hope your daughter is feeling better and her brain has recovered well? Thanks again for sharing :)

  • Hi Hannah,

    I have class 3 and 5 Lupus Nephritis.

    I'm 48 now, but when I was 15 I was blasted with cylophosphomyde and 60mg of predinisolone. Cant remember the cyclo dose - but I did end up with very little hair from it. To be honest I had more trouble with the Prednisolone. At the time I was told I was one month off renal failure.

    I remained fertile - except for a small patch where I temporarily stopped ovulating.

    It was also thought at the time that I had some neurological involvement. No MRI's back then - but in hindsight I definitely lost a few neuron's. Many grew back however ! Neuro - plasticity is real. Managed to go to University. Bit harder for me - not so good at maths - and some mild annoying memory stuff - but for me it was worth pushing the crumpled brain back into action. Younger brains are good at this. Normal life - eventually.

    YES - Neurologists are a bit dim when it comes to Cerebral Lupus. But remember - 'ANY' immunosuppression is the thing to resolve SLE neuro problems - and to a very good extent too. Neuro Inflammation does not necessarily mean permanent damage ! Prednisolone is (in my humble opinion) still the very best drug to control SLE inflammation generally. At 60mg's the Neuro stuff will dampen down very quickly.

    I'm assuming you've been tested for Anitphospholipid syndrome ? Kinda comes with the territory. Mines treated with 100mg of asprin. I dare say its already been checked for you.

    YES ! 'DEFINITELY' get your eggs frozen and get the full on treatment. (Prednisolone & Micophenolate aren't exactly helpful when it comes to fertility and reproduction either) When you do want to have a baby - with kidney & medication thingi's - it might even be better to have a surrogate ? Any excuse really - Much easier for anybody of sound mind ! Those little baby pathogens can suck the calcium right out of your teeth and bones and make you constantly nauseous - and that's when you're perfectly healthy.

    : )

    YES !!! Plunge into high doses of everything. Its the only way to be well again. But please don't loose sight of being well again. You will be. It's hard to imagine when your in the state you're in - but don't loose hope.

    Recently I had a 'preventable' renal flare (Unlucky with dodgy specialist - so please don't worry about a second renal flare - it shouldn't happen) My eGFR was barely 50. With Micophenolate and a high dose of Prednisolone again - the kidney GFR function is now about 78.

    Aggressive treatment was the only way. When I started to have digestive and (very minor liver) problems with the mico - I was switched to Myfortic. (Micophenolate sodium) easier on the digestive system. But if the Myfortic didn't work my only option was Clylophosphomide - which was fine with me - I'm pretty sure I was way worse off kidney wise when I was 15 - and it worked perfectly back then. Afterwards my Kidney function was near enough to normal for 32 years.

    Also no bladder problems ! Please don't worry about obscure cancers the med's might cause. They have to mention it on drug information leaflets because of the one in a 10 million chance of getting it.

    Its a good drug !!!!! I've never suffered any nasty long term consequences from it and just because its an older drug - doesn't mean its not just as good as the newer ones.

    Also.......you are going though a hell of a lot.

    I thought I'd been left with some further neuro damage after this recent flare - but I found that once I was tapered off the drugs - my fears about deteriorating brain function lifted. I'm not denying your cerebral involvement - but - never underestimate the mind bending abilities of high dose medications. I actually went into a kind of delerium this time round - but it was temporary. Feeling like myself again. Thinking clearly & Communicating normally again.

    A lot of people become very very happy on 60mg of Prednisolone - but I wasn't one of them. This time round I was given some sedatives to remain sane.

    Also hoping you're on BP Meds with the protien leak ? My nephrologist has finally harangued me into taking Candesartin Cilexetil and it is 'actually' very slowly reducing my protenuria. (which is why he prescribed it - it has this quality) - my BP is fine so I initially objected - but he persisted. It took a few weeks to get used to the 'very mild' side effects. Now there is none. Brilliant drug. I thought he was having me on about its magical protein reducing effect.

    Anyway - I hope I haven't performed a 'too much information post'

    Please feel free to contact me any time you want. I know its scary.

    xoxoxoxoxoxox

  • Wow, Thank you so much for all of your information and your positivity! :)

    I have been on high doses of Prednisolone for a several months now, also not a fan of steroids but I know that they are the best solution for all that is happening in my body at the moment. BP has raised as a result and now been prescribed lisinopril and Indapamide so we will soon see how I get on with these. I am hoping once the cyclo is started (should be before christmas) the steroids can be be reduced 5mg fortnightly.

    I haven't been tested for Anitphospholipid syndrome! I will discuss this next time with my Dr's

    Thanks again for your help

    Hannah

    xxx

  • Hi Hannah,

    I have also just been offered this treatment, to start in the new year! I am 26 years old and am worried about the fertility side effects!

    I was diagnosed Last September and I have been battling with every medication under the sun, to find the right combo to make me feel like me and control this 😬 I've even had Rituximab but unfortunately I had a allergic reaction on the second infusion and it had no effect on my DNA levels 😬 So back to the drawing board as my Renal Consultant says....

    I am very lucky because my Renal Consultant is amazing, he is actually better than the Rhemy! He refered me to a obs and gynaecology specialist and when I went to see him, his advice was he was going to fight to get my eggs frozen due to me being so young and having such harsh treatment! He said that the NHS may not fund this and I may have to pay for it, if it's something I want!

    I have a appointment next week at a IVF clinic to talk about it ( well I think that's what's going to happen) - I'm such a panicky person when it comes to something new!

    It took me 2 months to build up the courage to have my kidney biopsy 🙈 (Which was painless)

    Good Luck with the treatment and let's pray that this is the right cocktail of drugs to induce us into remission after a long battle xxxx

  • Hi Sazzy, sorry to hear you've had bad luck with drugs since you were diagnosed, what dosage of steroids are you on at the moment? I'm due to start cyclophosphamide before xmas and will know more about the freezing of my eggs next week I can let you know the outcome

    Good luck to you too

    xxx

  • Morning Hannah,

    I am on 15mg of Prednisolone a day but I started on 60mg and have been slowly reducing them !

    Yes please that would be great! Good luck with the treatment and the appointment too

    Sara x

  • Definitely agree Renal Consultants are much better value than Rheumatologists - SLE people need Doctors interested in the internal organs.

  • Hey Hannah, I'm late on this one but agree with all the others. My experience was when I was 25 years and only did 4 cycles as was too sick after each dose which took longer and longer to recover from. They let me take a break and I kept improving to the point where I was off anything for 8 months after then then put me on a maintaining dose of Imuran which wasn't helpful prior the Cyclo. but it kept me stable after. I have been stable to the most part for 25 years and if I had to do it again I would because nothing else was working at the time and they tried for 2 years before deciding on the Cyclo. Good luck on your decision. Yes it is nasty, but when your feeling better you don't really care how you got there anymore.

    Prepare ahead if you want children, I wasn't able to due to the pills I was on prior and the rush to get my kidneys under control. I miscarried every-time I conceived after so it was too much on my body. Make sure you have a few supportive friends around as you need that shoulder to help you out those few days after the IV even though you don't want to burden anyone. You will recover quicker with support. They say you heal quicker when you have someone to share with.

    Take care.

  • Hi Roanna, thanks a lot for your advice! I have an appointment today so this is helpful for my last questions for the Dr's.. were you mainly nauseous from the infusion or have other sickness?

    Thanks

    Hannnah

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