A lot of people are scared of the word " chemo. .has anyone had it for lupus?

[Julietsmombless2015]

My doctor mentioned talking about this my next appointment that's in a couple weeks. Now all my other problems ate magnified because I'm scared of that conversation mostly because I don't know what to expect. And that's terrifying to me

[lupus-support1 Administrator]

Chemotherapy can be a frightening word because it is associated with cancer. Admittedly, they are toxic drugs, but in lupus they are used in much lower doses. Moreover, you are required to have regular blood tests and if necessary, the treatment is stopped before it can badly affect you.

What is the alternative? SLE causes inflammation and damage. It is essential to get this inflammation under control. What kind of drug will depend on where in your body you are being affected. If you don't have these drugs, the inflammation can do more damage. Therefore, you need to listen to your doctor - ask as many questions as you need (write them down before you see the doctor - and then make a decision. I have asked: If I were your wife or daughter, what would you tell me?

It is important you feel you are in control and therefore you need to talk to your doctor. If it is any help, I take these chemotherapy drugs.

With good wishes,

Ros

[Julietsmombless2015 in reply to lupus-support1]

You take the chemo pills?.I just watched my aunt die from it.It was terrible.

[lupus-support1 Administrator in reply to Julietsmombless2015]

Actually, I self-inject but you misunderstand. Chemotherapy for cancer is different. Lupus is not cancer. The drugs may be the same, but at a much LOWER dose.

It sounds as if your aunt was very ill, terminally ill. I am so very sorry for your loss and no wonder you are afraid.

IF, your doctor advises you to take a drug, ask as many questions as possible and try to talk to someone who is also taking the same drug.

However, we are entering a hypothetical situation. If your doctor tells you: take this drug because it will make you better and your lupus will be better controlled, then I strongly advise you to talk to your doctor.

Researchers have found that some cancer drugs work in patients with SLE and they do work! This is great news.

If you take them, you will be closely monitored by regular blood tests. The blood test will warn the doctor that they do not agree with you and the treatment will be stopped immediately.

You are understandably worried, but I think you are dealing with too much at one time.

I think you should ask your doctor if you can speak with a counsellor/therapist because of everything you are dealing with and it is easy for you to become overwhelmed. This why the therapist will help you take a step back and try to ease your anxiety by talking - not more drugs!

The Lupus Foundation of America website may help you find a support group near you: lupus.org

With good wishes,

Ros

[lonelyone]

I've been needing to swallow these 6pills for a week now along with the plaquinil and can not get myself too . I'm terrified. I'm just getting sicjer everyday. What's hardest is zero family support not even a call or text EVER. ALL ALONE.

[Julietsmombless2015 in reply to lonelyone]

I'm sorry you have no one. I feel alone in this even with people, because to me in the end I'm alone in this battle. And nobody can understand. That's why I like this community because everyone really knows how you feel. And I it's like you get real answers. Everyone in my family just gets sad if I tell them. Like chemotherapy I have known I have had to do this or discuss it at least for 4 months .I told my mom today because she is going with me.And it's shocking and it just makes everyone treat you like you are going to die and then you think you are too.Before telling them I guess I thought that too but I feel like I can handle my thoughts. I know on here sometime I seem to be freaking out but to the rest of the world they don't see this. So I take it out on you guys. But this is my only outlet

[Julietsmombless2015]

I just found out Selena Gomez has the same lupus as me and she had take chemo and she went into remission and feels great. She was just on the Ellen Show talking about it.

[justjan1944 in reply to Julietsmombless2015]

I read that she was called, attention seeking, by some idiot I felt sad that she had to endure name calling on top of the rest. Thanks, for the positive update.

[Lilly25]

Hey! I just finished my 6 doses of intrevenous chemotherapy to treat my lupus nephritis! I'm 19 and I was terrified. But I can honestly say the process was no where near as bad as you expect it to be when you hear the word "chemo". Goodluck!

[dianekaty]

I am new to the group and also have a question about chemo drugs, specifically methotrexate. I have been taking 6 pills per week for about 6 months, but my doctor recently bumped me up to 10. I had some side effects from 6, but 10 is really difficult to manage. Has anyone found a good solution for managing the day after feeling from the metho? I have been getting a bad migraine about a day after with some nausea, and a general achy tired feeling. It lasts about a day or two. I am already on prednisone and plaquenil to help control my symptoms. My labs and joint pain have been much improved on the methotrexate, so I have no doubt it isn't helping. But, 2 days of misery takes it toll. Our insurance won't cover the injections, so I am stuck with the pills unless I want to pay out of pocket.

[Julietsmombless2015 in reply to dianekaty]

This is a longtime response so sorry my daughter broke my computer and I was locked out.But I refused the chemo I was too scared myself .I ended up going into a partial remission which felt so good.I could not believe it for 2 whole months.It came back with a vengeance.So I never did the chemo but am thinking that they may try to get me to again.