Anyone ever heard of Cyclophosphamide?

I am researching new or new to me drugs to take instead of plaquenil, even though I am tolerating it well, my vision tests twice a year are perfect and no side effects in year two. The diminished immune system is too much to handle, if there is an option. I started researching on the web and came across this medication, that I was not told about from my doctor. Has anyone ever tried it? Any experiences are welcomed.

I’m currently taking it (IV). It’s a very strong medication so would be quite a step up from plaquenil. It would surpress your immune system more than plaquenil (i think). There are other less ‘toxic’ options. My experiences with it have been mixed. I’ve just had my 7th pulse and had next to no side effects for the first 4, but the last 3 have hit me hard. Just feeling completely wiped out and vomiting for days afterwards…

My i think you both should stop the medication.It only makes us sicker,I only take 800mgIbprofin 4times a day water pills potassium thyroid anidepressants but refuse that medicine that wipes out our immune system and just want to lay around all the from fatigue

Medicines such as this are designed to slow our immune systems down. In a normal body there are regular antibodies, the good ones that fight bacteria and viruses and other invaders, and there are autoimmune antibodies, the real bad ones that attack ourselves.

An allergist checked my antibody ratios. My autoimmune sysrem, even on immunosupressants, produces autoimmune antibodies a ratio of about 10:1. So, I'm on immuran (azathioprine) and plaquinel (hydroxycholoriquine) and prednisone. I hate what these drugs and what the do to my body. But, I'm alive.

Please work with your doctors to figure out what you need. It can kill you if you go off these meds yourselves. This is why the Benlysta is so great because you don't feel the side effects.

Isn't Benlysta on hold right now (heard this in my live support group)? Has anyone also researched or heard this?

I hope this is helpful.

As bad as suppressing your immune system might be, it was extremely successful for me… I had SLE with joint, lung, kidney, and skin involvement, and was treated with high dose corticosteroids, plaquenil, and cyclophosphamide- which is also called Cytoxan, and is a very powerful form of chemotherapy, which I was given once a month for 6 months, and every 3 months for about a year… I saw the Rheumatologists at Children’s hospital in Cincinnati (this was 15 years ago), and they explained to me that they were wiping out my immune system because it’s out of control, and the idea was to wipe it and force it to build back up slowly and hopefully not out of control- and for me, it was very, very effective… I’ve been in a full and complete remission for over around 15 years now… It was tough though- I was on Zofran during the chemo, which saved me from the vomiting, and I did end up in the hospital once for about 5 days for cellulitis that ended up spreading into my blood as septicemia/bactremia because of my weak immune system… I know I made my doctors crazy back then because I insisted on working (I worked at Taco Bell around people all the time). But it all worked out very well for me- you would hardly be able to tell now that I even was that sick back then, and my kidneys at one point had virtually stopped functioning and I was spilling massive amounts of protein in my urine… Good luck to you!

Plaquenil is not actually an immunosuppressant. It is an anti-malarial. It is considered one of the safest drugs used to treat Lupus and other AI disorders. Here's a link for some good information on different types of Lupus meds. Hope this helps.

http://www.lupus.org/webmodules/webarticlesnet/templates/new_learntreating.aspx?articleid=2246&zoneid=525

Sharon

Stick with the plaquenil! I have been on it for about 30 years. Do the 6 month checks and compared to side effects of other drugs....it is nothing. My eye doctor who i loved and trusted with my life...said that as long as i do 6 months checks and if anything should show up that it is completely reversible. Also go in if you have any eye pain etc....i am speaking about Eye Medical Doctor not optometrist.

I have had eye problems but it was not from plaquenil...inflammation in my eyes plus severe dry eyes.. Oh he did make me promise to never use contacts....just said it was playing with fire.

I have tried other drugs in combination with plaq...and did help with RA problems. But it was very hard on my body and increased fatigue. So i stayed with them a year...another only 6 months and few even less.

You could also speak with pharmacist and hear about side effects. But mainly speak with your team of doctors. I was lucky to have a great team and they did make my life a lot better. If you have that now...trust them...bring your questions and just really discuss pros and cons..if they are great doctors the encourage this and leave it up to you. Unless the drug you want is just a mistake at this time and place but they should explain why in detail.

So if you do not have great team of doctors..well i wish that for everyone!

Unshoreandscared,

I just returned from my new rhuemy who did actually mention it. As a last resort do to my lupus nephritis, as well as the scarring on my lungs. It is chemotherapy, and for all intents and purposes she told me it is a last choice option. If my kidneys start to go out or I get pnuemonia again, perhaps, but again it was presented as a last option as it is extremely toxic.

Just my 2 cents,

DeAnne

Thanks for all the advice... Love you guys. I need to look into my options more. Thanks group.

Plaquenil is so, so mild compared to cyclophosphamide. Please stick with if it’s working without side effects! It’s not an immune suppressant … It’s great if it is all you need as the other meds like cytoxan are so harsh and toxic.

Unshoreandscared,

So glad you are reconsidering. Anytime you suppress your immune system you are going to be susceptible to infection. I would hate to see you overdo and end up incredibly sick. I agree with RB if the Plaquenil is working, and controlling your symptoms, I would definitely stick with it.

Good for you,

DeAnne

Never heard of it. Plaquenil, caused my color blindness.
Keep me posted on this if you try this med. Thx

Both

redwingfan said:

Plaquenil is not actually an immunosuppressant. It is an anti-malarial. It is considered one of the safest drugs used to treat Lupus and other AI disorders. Here's a link for some good information on different types of Lupus meds. Hope this helps.

http://www.lupus.org/webmodules/webarticlesnet/templates/new_learnt...

Sharon

Unshore, I found this for you also. It's a fact sheet on Plaquenil, from the American College of Rheumatology. They state that Plaquenil "does not have a strong effect on the immune system". I thought you might like to add this in to your research. Knowledge gives you power over this disease. :)

http://www.rheumatology.org/practice/clinical/patients/medications/hydroxychloroquine.asp

Sharon

Hi im off all medications but i do have a pain patch and bp meds and a few others. I took plaquenil for 3 years then i went on cellcept which made me sicker. the drug your researching i never heard of it. I caution every one about the medication only because lupus is different for each one of us. I went on vitamins and since that time all my blood work has been good, however I have lots of flare up from chest pain to fatigue to pain in my body. I have seen some good dr. and some not so good. my health care is through kaiser and dr. come and go all the time so we must know our bodies and pray.I just caution you about the meds because they can help but they also can kill us. oh and plaquenil did affect my eyes and the surgery worked but i was told if i start taken it again this could happen again.be blessed