SLE Medication! Side effects?

I was diagnosed with SLE 3 weeks ago after 6 years of fatigue after a fairly active 50 years. My symptoms over the first 6 months of this year began suddenly after a flu like virus at Christmas and made the use of my forearms, hands and knees almost impossible every evening! Although these symptoms have, more or less,been in remission since August I am due to start on Methotrexate and Hydroxychloroquine treatment next Monday.

I have some reservations about the Methotrexate as it seems to have very unpleasant side effects with some people.

Has anyone had any experience of this immune suppressant drug, good or bad, so that I can be prepared?

6 Replies

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  • Hi, and I'm sorry to have to welcome you to this club but welcome anyway. I've been on methotrexate (MTX) for 10 years now so I have a lot of experience with this drug. I'm going to couch everything I say with the previso that not everyone will suffer the same side effects or to the same degree because everyone's Lupus is different and everyone responds differently to the drugs. Now. my experience of side effects with MTX have been relatively low grade by all accounts; hair loss, nausea and fatigue. The hair loss worsens at higher doses but right now it's not too bad (on 15mg per week). My nausea comes and goes with it; most weeks I'll be fine or have low grade nausea the next day and sometimes it knocks me for six for 2 days. I still haven't worked out why this happens. The fatigue is rare but it does happen. I will say the side effects worsened when I was on the injections (same dose, 15mg) so I stopped those but often you will find people for whom the opposite is true. I'm sorry I can't give you a clear answer but unfortunately that goes with this very murky territory we find ourselves in. I hope the MTX works for you with little to no side effects. Good luck!

  • Hi, thanks for the info. I will be starting on 15mgs pw and folic acid 5 mg 6 days a week to offset some side effects. As I am diabetic too some meds used for lupus I am unable to take, such as steroids, but MTX is ok. The reason I have reservations about it are largely due to my late wife being given it for severe rheumatoid arthritis and it resulted in 2 bouts of septcaemia!

  • Oh wow, how did it result in that (if you don't mind my asking)?

  • Apparently, her immune system was very suppressed by her meds and a combination of cellulitis and gram negative bacteria resulted in septcaemia and pneumonia. She survived both infections although she was in ICU for 3 months with the first and developed the second 2 years later whilst on a plane to Canada. She came off the aircraft and straight into ICU in the local hospital! 5 weeks in a Canadian hospital with a huge insurance bill. They reckon that infection was caused by a residual lung infection being activated by the low cabin pressure of the aircraft!

  • Welcome to LUpus Patients Understanding & Support (LUPUS) at HealthUnlocked!

    MTX has a proven track record for those with lupus and rheumatoid arthritis. Looking at all drugs, there will be a long list of "side effects" which can lead to having understandable reservations. Like many immunosuppressants and cytotoxic drugs, they were developed for treating certain forms of cancer, but are used at significantly lower doses, for conditions such as SLE and RA.

    It is important to remember that not every patient will have side-effects or even the same side-effects. Nausea is one of the main difficulties especially when taking orally. There are 2 good reasons for the weekly injection. First, it significantly reduces nausea and sickness and; second, there is some clinical evidence that it is better tolerated and works better than orally (although I do note what IrishLupie has said which shows how no two people will be the same!) Taking folic acid every day EXCEPT on the day you take MTX is recommended.

    We also have another website called the LuPUS Message Board where you can also post questions and talk to other people. Registration is FREE and we offer free information and free online psychological support. We specialise in psychological support with our own counsellor/psychotherapist available.

    By becoming a Member, you will have access to the private forums and because they are private, only Members have access and even bots and search engines are forbidden.

    When you register, please use the following format for entering your date of birth: nn-nn-nnnn where n=number. Please use the "-" separator and not "/".

    Finally, please go to: lupus-support.org/LuPUSMB and Sign Up.

    With good wishes,

    Ros

  • I have been on it for two years with no side effects.I my self found it's made a difference to my sle I still get tired a lot but the joint pain is a lot more bearable. hope this helps .i to thought long and hard after reading the booklet a bout it I wish you all the luck

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