autoimmune diagnosis - concerns over side effects of chemo tablets

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grom
grom Member Posts: 12
in Chat to our Helpline Team

Hi, I have just been diagnosed with an autoimmune disease - possibly RA but other ones being considered also and am due to start on a chemo tablet soon. I have read about side effects but was wondering if these apply with taking the meds at the level they are given for RA rather than for cancer such as sickness and hair loss. I am a single mum so trying to make plans for looking after the children on a day to day basis. Do you have any insight in to this aspect?

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  • alexander1
    alexander1 Member Posts: 70
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    If you are talking about methotrexate I am just two weeks in to taking it.

    it is no doubt a big heavy duty drug with all the warnings and many have side affects.

    If it is this drug then I believe that when used for chemo it is a massively increased dose than we take for the autoimmune issues.

    I was advised to take it once a week on Saturday night in case of symptoms but so far have only had side affects from the steroids they have me on

    Remember if they don’t work for you there are other options as well


    take care

  • helpline_team
    helpline_team Posts: 3,490
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    Hi @grom

    Thank you for posting on the forum.

    I am sorry to hear that you have been diagnosed with an autoimmune disease and are due to start on a chemo tablet soon. Being newly diagnosed can be quite challenging and daunting at times, you are very welcome to call our helpline: 0800 5200 520 (weekdays 9am-6pm) here we can take our time to talk things through in more detail, sharing can sometimes be helpful.

    Side effects by law must be written, though they can be quite scary to read. Everyone is different so a person may experience a couple of side effects or none. From what I understand the dosage given is different than it would be for something like cancer. Your rheumatologist would be keeping an eye on you, and if the medication were not agreeing with you, they can look at changing that.

    I hope that the post from Alexander is helpful to you, so worth bearing in mind there are other options for you.  

    It sounds like you have your hands full being a single mum and looking after your children, so once again please give us a ring to talk things through.

    If you have RA, you might also like to speak to National Rheumatoid Arthritis Society (NRAS) telephone: 0800 298 7650 who are purely for RA and a wonderful charity.

    I have given you a link to the medications you might be put on, and a link to our newly diagnosed page which too may be helpful.

    https://www.versusarthritis.org/about-arthritis/treatments/drugs/disease-modifying-anti-rheumatic-drugs-dmards/
    https://www.versusarthritis.org/about-arthritis/newly-diagnosed/

    Best wishes

    Lynda

    Helpline Team

  • grom
    grom Member Posts: 12
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    thank you that is all really helpful and I will look at the links also. x

  • grom
    grom Member Posts: 12
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    https://community.versusarthritis.org/discussion/comment/694176#Comment_694176

    Thank you that really helps to know. I have had a month of steroids now and other than my mild hair loss from it I am okay. I feel the best I have felt for years on them. I am sorry you have had side effects on them. Yes it is methotrexate that they are saying I will take. I hope you are beginning to feel better than you were originally.

  • stickywicket
    stickywicket Member Posts: 27,712
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    In addition to what the others have written and just in case it helps...

    I first took methotrexate unknowingly when i was on chemo after a mastectomy. That was about 40 years ago. I was amazed at how good my RA felt😉 I never lost my hair though i was quite nauseous towards the end of the treatment.

    Fast forward a little and I was prescribed methotrexate for my RA. I was on a high dose for some time: now just 10mgs weekly. Perhaps one or two hairs in the washbasin when I wash my air. Sometimes a day of fatigue either the day after I take it or the day after that. I have had a dodgy stomach since long before methotrexate thanks to NSAIDS and a hiatus hernia so I take a daily stomach-protecting med. That's it.

    I really wish I'd had methotrexate when my two were little. We're given folic acid to take to prevent any side effects. Some take it once a week. I've always been prescribed it two days per week. occasionally people have to take it every day except their methotrexate day.

    I hope you'll find it as helpful as I have - but do accept any help with those little ones😉

    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
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