Worried

Got appointment on the 4th with Rheumy . I stopped taking my injections because I had exams and it was hurting my legs . I really can't be bothered to start taking them again. Before I take them I get my self worked up something silly . Then I become all panicky . The injections don't make no difference to me . I don't even understand what it's meant to be doing . I know when I go to the Rheumy she won't understand why I stopped and won't listen to me like she normally doesn't

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  • Hi LouLamb, you should try to discuss with your rheumy or GP before stopping any meds, as stopping the meds can cause a flare up of symptoms. If you feel the medication isn't working for you there are other meds your doctors can recommend, or you might need a higher dose. Also, some medications take several months for the full benefits to be felt. If the clinic you visit has a lupus nurse you can also try contacting her.

  • I can't take tablets anymore . I was fine taking them . But only can with milk . Now it makes sick every time I take tablets . So there isn't anything else for me I don't think

  • Do you mean the methotrextate tablets make you sick? There are alternative medications besides methotraxate that might not cause stomach problems. Many of us on this forum have tried a few different medications before we have found one that works for us with minimal side effects.

    Regarding the injections, I have never used methotrexate injections but could you speak to the chemist or doctor about the pain in your leg that is causes? Is there a better place to do the injection?

  • It only caused pain a few times . I think it may be because I wasn't relaxed enough .

  • When you see your rheumy be sure to let her know how long you have been off the methotraxate. She can only evaluate your response to the meds if she knows how much you have taken and for how long. Tell her if your pain has improved or stayed the same since starting the methotrexate, and if you have side effects you cannot manage. She may have advice for making the injections easier, or if she thinks the methotrexate is not working she can prescribe a different medication to try, so please don't give up!

  • LouLamb, you must discuss how you are feeling with your GP and/or your Rheumy at this appt. Do you have a family member that understands how you feel, that could attend your appt with you for moral support? Maybe get a GP appt before your Rheumy appt to see if they have any suggestions? How long have you been off your medication now? Are you supposed to be on methotrexate injections? What tablets do you take with milk? Concerned for you. Keep us posted.

  • I use to make methotrexate and folic acid with tablets . They put me on injections and I didn't take the folic acid tablets . I haven't had an injection for weeks now at least 3 I think

  • When were you diagnosed? Do you have a family member who you have discussed thus with? I want to help and understand but obviously we don't know all of your personal circumstances and lupus symptoms etc. Who do you confide in?

  • I was diagnosed September 2015 . No body in my family understands . Know one had even heard of it before . My mum and brothers get fed up of me keep complaining about what hurts . Just get told to get on with it

  • I know what that feels like! I was diagnosed Oct / Nov 2013 and has never heard of it before! None of us had. My husband worked it out initially after watching a documentary on a drugs company who had just launched a new drug for lupus. I was extremely low at that point. When I told my mum and brother, crying as I was so down, my mum stayed the other side of the kitchen, and said, "you'll have to pay for things to be done around your house if you're that bad." End of conversation. No hug. No supportive words. But I bought lots of books from Lupus UK, as I wanted to understand it myself and then let my mum borrow them for a couple of months. She's much better now and said she didn't understand what it meant for me in the beginning. My sister has fibro - so I do feel for my mum. It can't be nice for her. I'm lucky my husband is great, he understands and is very supportive. I guess what I'm saying is, it's early days for you and your family. Get some info for your mum to read. Show her the Lupus UK website. Maybe get her to read some posts on here. She's your mum and she'll be there for you I'm sure. Now get a GP appt and have a chat about your symptoms, meds and side effects. Lupus won't go away on its own. Take care of yourself.

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