Hi all,
After an escalation in neurological Lupus symptoms and despite already having biological therapy and steroid infusions, I’m now going to be having chemotherapy. I’m a bit nervous to say the least. I’ve been told it’ll be over 6 weeks. Anyone else had this? What , if any, were the side effects?
I had 6 x intravenous doses of cyclophosphamide back in 2012 for stage iv nephritis. Or at least it was supposed to be 6. In the end I only had 5 of them - because they made my skin flare really badly. I vomited wildly after the first, but managed subsequent doses better, by taking an anti-emetic immediately after. I remember the nurse in the renal department telling me that there was no such thing as a standard reaction. She said one of her patients arrived on the bus and went home on the bus and claimed to feel fine after each dose. I felt horrid for a week after each, then slowly better until it was time for the next one. But the important thing is that it worked. The nephritis abated, and I got back quite a bit of my kidney function. That's the thing I focus on when I think back to how ill I felt. It was a means to an end. Hopefully it will work for you too. They wouldn't be doing it if they didn't think it would help. Good luck.
Thanks so much for sharing. I’m really nervous about it. I hate being sick… Did you lose hair ?
Annoyingly and hilariously I lost a lot of hair at the front of my head - which grew back curly (the rest of my hair is dead straight). It looked really stupid, but eventually it came back OK. I lost all my leg and underarm hair, which has never come back - but not bothered about that at all really. It's a means to an end. I'd rather be bald and functioning than hairy and ill.
Hello, totally understandable to be nervous about it.
I’ve had two cycles of cyclophosphamide, both for neurological lupus and this last one worked brilliantly (on bloods and brain!). The first was a success but I then got covid which made me flare.
The 4 worries are usually:
1, Being/ feeling sick 🤢. I’m a very sicky person but wasn’t actually sick. I felt sick after first two but got a very good suggestion to take anti sickness BEFORE the infusion. That helped a lot, Try ondanestron or even better, graniestron (an old one but very good) I don’t feel great for a few days after each one but not awful
2. Hair loss. Very few people lose their hair at the lower doses we have for lupus (they give much more for cancer). Mine did however go a funny texture and a bit curly and that seems to be forever now.
3. Bladder problems. They’ll give you a drug to protect your bladder (mesna) and make sure you drink loads before and after.
4. Fertility. Depends on age and sex of course. I’d had my children so OK for me but if you haven’t had children yet and are still young you need to discuss this with your doctors as they can freeze eggs. It put me into early menopause which has been fine.
Good luck with it. I’d have it again as was one of the most effective for me xx
Oh - yes - forgot about the bladder stuff. After the first one I followed the instructions and drank loads, but couldn't pee. Eventually had to go back to the hospital and get catheterised. It was a OK on the subsequent doses.
I’ve been weighing up whether I wanted to do this (but as WinterSwimmer said, my consultant is suggesting it because it’s needed and we are out of other options) However, I can’t carry on like I am. That isn’t an option. I can’t function.
Really helpful info. Thank you both so much.
Morning Mainlyconfused.I had cyclophosphamide Summer last year, six sessions. I have one thing to say - This treatment saved my life.
Side effects are very individual. I won't go into detail as the main thing is to think positively. I didn't have significant hair loss and I have mid length hair.😘
Follow the medical advice you are given and ensure you take the after meds at the right time to help the side effects - I set a timer so I could sleep as much as I could.
Sending you a big you can do it hug!
Do let us know how you get on.
🌻🤞
Hi, I had 6 doses of cyclophosphamide infusions in 2017 (one every 3 weeks) and it saved my life. I have SS with lung disease. I didn’t lose hair or be sick I just felt washed out for a few days. I did suffer with constipation but prune juice soon sorted it out (tip from the chemo nurse). I had steroid infusions the day before each treatment which gave me a very bad headache. I hope this helps you and best wishes 🌺
Thank you. I’m also having steroids at the time of treatment apparently. Hate steroids but they are a necessary evil 🥴 Really appreciate the info.
Thanks PositiveT . I’m starting to feel a little less freaked out, mainly due to the replies on here x
Hi MC- I'm curious what are your neurological symptoms that led you to this treatment?
I have peripheral neurological symptoms and diagnosed with lupus/Sjogrens. I have flare ups of neuropathy that feels like being poked with a pin, stings all over head to toe. Also it affects my brain stem according to my neurologist as I can see sharp lights in my imagination when having an attack. Recently I have felt it in my chest feels like bronchitis with sharp prickly pain.
But the attacks are infrequent and since I feel fairly good most of the time, my doctor and I agreed that I would not go for any heavy drugs yet. I am taking daily Plaquinil and supplement, Alpha Lipoic Acid. I use prednisone and albuterol inhaler for the attacks. Also using acupuncture which helps calm my nervous system. Good luck with your treatment!
Thank you. Hope your treatment continues to keep your symptoms under control. MC
my cousin had this to kill her immune system. She has been much better since. She returned to work and life is better.
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