Cyclophosphamide

[Billpayer1958]

Anyone taken Prednisone (60 mg) with cyclophosphamide (100 mg) for 6 months, then mycophenolate?

I expect to lose my hair but wonder if it will return when I stop the prednisone and cyclo. and go on the mycophenolate? How bad were the side effects?

[Hidden]

I didn't have cyclo in tablet form so I am not sure how it will be for you. I had IV cyclophosphamide (6 x monthly doses) and lost some hair (like a receding hairline and got thin all over). I have now been on mycophenolate for 6 months. My hair is coming back. It looks pretty stupid at the front while it is so short - but hopefully that is temporary.

Cyclophosphamide IV was horrid (though I know some people coped better than me). Mycophenolate is fine apart from insomnia - but the really good news is that I am LOADS better!

Good luck with yours.

[Hidden]

Should also say I had prednisolone throughout (high doses reducing to 15mg). I am tapering now and am on 2mg!!

[Cobbers]

Hello! I finished 6 cylco treatments in Jan 2012 by IV and have been on pred for over 6 yrs and mychophenalate for 3. I didn't have many side effacts from the cyclo and hardly lost any hair. I am still on pred and mychophen. but feel so much better than I have done for 7 yrs. It was, without a doubt, worth it

Good luck with it all x

[chucch]

Hi Billpayer1958,

I had Cyclo last year, and for me I think it was the best treatment I had for my Lupus.

I had Retuximab a month before & my doc recommenced to have Cyclo as I wasn't getting along with Cellcept (really bad abdominal pain) and I was on around 20mg of prednisolone at the time when I had the Cyclo (I think)

I didn't have any bad side effects, if any thing I felt really refreshed and had loads of energy after each treatment.(Infact i felt Normal again, I don't think people believed me when I told them I was having Low Dosage Chemo!)

I did have a bit of hairloss and like MaggieS starting to have what looks like babyhair growing back (app this is a good sign) but does feel odd.

Hope it will agree with you,

Best Of Luck x

[vonnyrad]

Hello, I have had treatment with all of those drugs in various forms over the years, thought I would share my experiences as regards side-effects etc.I started on I.V.Pred 30 years ago, changing to oral 30m.g. which reduced over 18 months to 5m.g. along with Azathioprine , then, because my kidneys were failing, I had to go back up to 30 m/g.for about 2 years, reducing to around 7 while on dialysis.My hair did thin slightly, think more due to the Aza at this point, only real problem was initial fluid retention with high doses,(a kilo a day!!!) but soon lost that, didn't have weight problem otherwise,( in fact, went a bit thin, under 8 stone by the time I was on dialysis) and of course, the dreaded moon face, which has never really left me all these years regardless of dose.I went on to have a transplant, then two babies in quick succession, and unfortunately a massive flare-up which was not treated until it was life-threatening, at which point, everything was thrown at me - : I.V. Pred, I.V. Cyclo,and plasma exchange. After a couple of weeks of this, I was sent home from hospital on 100 m.g. Cyclo, 30 m.g. Pred and Aza, plus anti-rejection drug Cyclosporin. Initially felt very well, no problems with I.V. drugs, but after several months of oral Cyclo, it was apparent I was going to lose my hair(of which I had loads, waist length and very thick, so it took about 18 months all together)and I went through a premature menopause, which was quite dreadful, physically and psychologically.My hair did eventually grow back, despite still being on 50 m.g Cyclo. which I ended up being on for 9 years, but it was very different to my original hair.A couple of times since I have tried swapping Azathioprine for Mycophenelate, so that I could take Allopurinol(for gout) but it always upset my stomach, so changed back.I still take Pred and Aza, only 7m.g. Pred, I will never be able to stop the Pred, my body needs the steroids and I've had a couple of occasions when I've not been able to take them(having to fast for tests ) and I've been really ill with withdrawal symptoms.I does seem now that drugs are given at lower doses for shorter periods to minimise side effects and dependency, so you should aim to try to get to the lowest effective dose as soon as possible.I personally feel that I was over-medicated, and kept on drugs that were unnecessarily high dosage for far too long and did more harm than good.I would hope 6 months on Cyclo should be enough to help you without being too severe as regards side-effects, and maybe you can reduce your steroids over that time before you start MMF. Incidentally, I know of lots of transplant patients who have taken MMF successfully with no problems at all.Hope it all goes well.x

[Hidden in reply to vonnyrad]

Do you mean a gram? Surely not a kilo? What does a kilo of prednisolone even look like!

[MandaM]

Hi i had 5 months of IV cyclo back in 2000, the only effect i had was that i felt a bit weak. Since having a kidney transplant back in March 2006 i've had prednisolone tablets initially at high doses causing an increase of 20kgs in weight at the time, then i was tapered down to 5mg daily. I found that the high dose of pred made me a horrible person. I have been on/off with mycophenalate mofetil and am now on 250mg tablets twice a day plus tacrolimus 3mg in the morning and 2mg at night. I'm currently under investigations with a cardiologoist for a problem where i get dangerously high blood pressure and heart rates on exertion, this happens erratically but i can't excercise or dance etc. Just had a CT scan yesterday to check my heart and arteries, veins etc. I'm suspicious whether this is the mycophenalte or not, maybe just a new Lupus thing despite all my immune suppresants, who knows? I also sleep badly and when i do sleep this is ruined by 'far out' dreaming and I struggle to wake up most mornings, this can take me up to 5 hours to fully come to, i'm aware of my surroundings but can't seem to fully wake and have a head like a lead weight. I can no longer work a morning job, only an afternoon and evening which means a loss in wages into the house. Again i have no idea if I can contribute any health problems to the meds I'm taking or blame SLE?

[LloydE]

I was on Cyco 150mg and Pred 30mg for around a couple of years. I was already bald before, so no idea about the hair loss. I did find out that Cyclo can render one permantely infertile in the early stages of use. I have know idea how long "early stages" is supposed to be. My hair did return but i cannot remember if it was after i stopped taking Cylco or when my flare calmed down.

[zachery]

Hi Im sorry that you are poorly and waiting treatment, but hopefully my experience of this treatment might help you. I had a Lupus flare and kidney failure in 2000, and had this treatment for 6 months. I recall feeling anxious and concerned by the treatment ahead but personally I was very tolerant of the treatment. I expected my hair to fall out but instead my hair thinned and would come out as a covering on my hands when I washed it, but I never lost my hair completely and it was only apparent to myself that it thinned, I could still dry and have my hair styled how I always did. In time my hair returned to normal thickness post treatment. Post treatment I would feel nauseous, although I was never sick with the treatment. In the days following treatment I found it altered my smell and taste, sometimes disliking food I would normally enjoy! I would always have complete rest for 2 – 3 days after a treatment as I felt quite tired and out of sorts. After completing this treatment I continued with prednisolone, plaquinil and azathioprine. The positive side is I have never had a severe Lupus flare since and my kidney function is great, so although some days weren’t brilliant it was worth it for the outcome. My very best wishes to you.

[Hidden in reply to zachery]

The cyclophosphamide did that to me too - with the food! I went off some of my favourite foods and started liking some weird stuff. Before the second bout I went off and stocked up with smoothie which was one of the few things I could eat after the first one, only to find that it went off in the fridge because I didn't want it anymore. For a while I only liked sliced white bread, toasted with butter, and ham and tomato sandwiches, which was weird, because I don't usually eat meat.

[Maureenpearl]

I had 3 iv treatments of Cyclophosphamide and prednisolone in 2011 and my hair came out from the front and then thinned all over. I blew up with the extra steroid as I was also taking steroid by mouth 20mg. I just felt tired for a few days after and never felt the effect of the cyco for about three months after (it was given because the lupus has damaged my lungs).

I had another 3 doses of cyco between October and Jan this year and I am still feeling awful as this time I kept having awful side effect as I am having the cyco. I did not have the extra pred as I could not cope with the water retention and my face looking as if I am about to explode. I am still taking 10mg of prednisolone daily

The next time I visit the consultant I am hoping to try another drug for maintainance.

[abby1649]

I had IV Cyclo for 6 months Aug 2013 to January 2014. At the time was taking Prednisone 60mg daily. Lost about 1/2 my hair but bonus came back in curly ! Slow reduction of Prednisone until totally off by Christmas 2014 Went on Mycophenolate when Cyclo done in January 2014. So far so good so hoping we've beat this into stability. Still on Hydrochlorquinine, and Myco and feeling okay. Any side effects are mangeable. As long as I eat healthy, stay warm and get plenty of rest I seem ok. Have a monthly massage which helps pain and stiffness and havent had to take pain meds in nearly a year. Figuring out this awful Lupus one day at a time. Have a great Rheumy and GP which so helps. See my Rheumy for routine followup in a couple of week. Looking forward to summer