If you take chemo drugs for lupus, what type & what dose? Has it helped? Do you have bad side effects?

[Sopphie]

I was told this is a treatment for moderate SLE. How do you know when this becomes necessary? Is it a daily treatment? Has it improved your health?

[Oshgosh]

I wa# on Azatropine for SLE a few months had to Stop it due to side effects.

When I told my sister in law about going on the Azatropine,she asked me about the side effects.

My answer was that I feel so ill because of lupus that I have to take the Azatropine in the hope that I will get some benefit from it.whilst considering the side effects.

Now on Myclophenate for 2 weeks,am really hoping it will work for me.

Dose starts at 50 mg daily going up to 299 mg in 4 weeks.

AM sorry I haven’t got any more derailed information .

[overnighthearingloss]

My lupus medication was stepped up in the year before I had a renal crisis.

When I was taking the more powerful drugs I never felt well. Quite the opposite. But was assured that it takes time for the body to adjust.

I certainly was not personally aware of any kidney danger prior to my drug load being increased. I may have been at risk but I don't remember poor kidney function being discussed before they almost failed.

I was on azathioprine as well as plaquenil. But I think I reacted more to azathioprine.

I was eventually taken off azathioprine but can't remember the exact timeline of starting and stopping various drugs

I don't want to prevent you taking the treatment that is right for you at this time. But with any drug, be aware they can present side effects and be prepared to stand up for yourself and shout loudly if you believe they may not be doing you any good.

It's always difficult to tell whether you may be suffering from disease progression or side effects as the drug load increases.

[Oshgosh in reply to overnighthearingloss]

When I was on Azatropine,my appetite was nearly non existent,used to feel nauseous frequently.

But in other ways I felt quite a bit better after a few months.only getting up one a night to the toilet,bruising on legs disappeared and didn’t come back.

Had more energy.

Actually had a bit more energy.cleaned a few cupboards out even.

Stopped needing an afternoon nap.

Then the last bloods I was to have taken at hospital showed serious rise in liver enzymes.

Consultant rang me and said stop taking them.

She said the nausea continuing and no appetite meant that it didn’t suit me.

Rechallenged again after 3 weeks,liver enzymes shot up.

Bye bye Azatropine.

I know what you are saying about the drugs,but at the moment. I feel so ill, I have to give it a go.

As. I have NSIP - lungs,this complicates everything. Over the past month have been increasingly shot of breath. Pain around lungs and in chest increas8ngto the extent that it wakes me up.so getting tired.

My husband says I put a very brave face on .

My friend asked me today if we had booked a foreign holiday ( this with shortness of breath and pain plus.

I just said I need to better before I think about it.

I can’t believe that a bit of make up and a wig cover up my symptoms so well.

Perhaps. I should go out looking a mess

[Geordie-Y]

Sopphie,

I am a 68 year old man and am trying to forget how long I’ve been suffering from this terrible affliction. If you are referring to Cytoxin as the chemo treatment then as far as I’m led to believe by my consultant, it is only used when your white blood cell count gets to the dangerous level.

Does it work? Short answer is yes but only to bring the white blood cell count back to an acceptable level, it will not help with the joint pain or any of the hundred other symptoms of Lupus.

Are there side effects? Yes, massive as there would be with any type of chemo therapy.

If it has been suggested to you by your doctor or consultant then I would suggest that there is something wrong with your blood count and you should take it but if this is something that has come up through a discussion with another sufferer then I would say no do not take it.

Hope this helps.

[Cas70]

There is no cure for what we have. We can only rely on certain drugs giving us some relief from the many and varying symptoms. Why would you want to put the chemo drug into your body ? If there had been a break through with chemo we would see it in the headlines. I can’t help feeling they are experimenting with us. Look up the John Hopkins Hospital in the USA - so far advanced. They are in the dark ages here.

[Melba1]

Hi Sophie,

I think there is a lot of confusion sometimes with the word ‘chemo’ drugs. Most of the drugs we take for lupus are to stop our immune system attacking ourselves and there are several immunosuppressants also known as DMARDS (disease modifying anti rheumatic drugs). These are usually azathioprine, myclophenolate and methotrexate. Methotrexate is sometimes called mild chemotherapy. They all have pros and cons. There are biological drugs too if your lupus is severe or these DMARDS don’t work.

The only drug we are offered that is ‘proper’ chemotherapy is cyclophosphamide but it’s used in much lower safer doses than for cancer. There are still some side effects of course but not everyone gets them and if your lupus is severe and organ/ life threatening then the main side effects of nausea and hair loss may seem less important.

I’ve had 3 cycles of cyclophosphamide (after having biological, most DMARDS and lots of steroids) and it’s made me feel better than I have in years, energy like a normal person, pain gone, brain functioning well, rashes gone, kidneys improved. I was scared taking it but other than 3 days after it of feeling a bit sick and a bit of bladder issues the pros for me have far outweighed the cons. Although I have had a lot of infections from all these drugs reducing my immunity but I know I’ve needed them.

It depends how bad your lupus is I think but it might be one of the milder drugs that’s being suggested. I wouldn’t have accepted it before the lupus was at a stage that it needed the most aggressive treatment. Chemo’ is a scary word but it’s saved lots of lives in the cancer world and is saving lives in lupus patients and giving a better quality of life too.

Good luck whatever you decide x