I stopped taking my medication...: This is my first... - LUPUS UK

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I stopped taking my medication...

huba_naveed profile image
5 Replies

This is my first time posting here. I joined health unlocked about 2 years ago, just after my first diagnosis. Since then I have had IVF and have been on numerous medications. Recently, it's been a few months now, I stopped taking my medication. Just the thought of it made me nauseous. At first it seem like anything was happening but about a month ago some symptoms have started to return. I know I should be taking my meds but I just can't seem to do it. Any advice will be greatly appreciated.

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huba_naveed
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whisperit profile image
whisperit

Hello huba_naveed,

Sounds like you've had a hard time lately. There's only one piece of advice I can give - go and discuss this with your doctor as soon as you can. Take a friend if you need a bit of support. Good luck! X

Wendy39 profile image
Wendy39

Hello. I'm sorry to read that you have been struggling recently, with IVF, taking your daily meds and symptoms returning etc. What are you supposed to be taking daily? I would suggest that you speak to your GP or your Rheumatologist as soon as possible. You haven't said what symptoms you have with your lupus and I'm worried you could become seriously ill. I know feeling unwell, hurting and accepting this illness mentally can take its toll. Have you any family or good friends you could discuss how you are feeling with? I hope you find the strength to reach out to your doctors and loved ones. Please let us know how you move forward. Best wishes. Wendy

Hello. As a highly allergic and drug intolerant person myself I totally recognise the impulse to stop taking meds and then to feel unable to restart them.

However, if you are undergoing IVF then presumably your medical team is supporting you in your quest to have children and they will have thought hard about and discussed both your med regime and your Lupus with you?

For what it's worth, I recall that, during my much longed for first pregnancy - my chronic eczema became very severe and widespread. The dermatologist tried to persuade me to take steroids but I was adamant that I would not. However, once my son was born, slightly premature and very colicky, I regretted this decision. He went on to develop severe eczema himself and has Asperger's Syndrome - and I often wonder if I could have spared him these if I'd just agreed to take steroids as my doctors wanted me to. I know your situation is very different but I just thought I'd throw in my own story in case it helps. I have primary Sjögren's and hypothyroidism rather than Lupus - but I think I've probably had this combination going on for most of my life. Finding this out and being appropriately medicated when I was younger might have made life much better for me but who knows.

Dalilatm profile image
Dalilatm

Hi! Advice? Go back to the your specialist, check your levels, and retake your the treatment.

We may feel better, even 'cured' at times but we're not. Good luck!

Paul_Howard profile image
Paul_HowardPartnerLUPUS UK

Hi huba_naveed ,

I'd like to echo what the other members of the community have said and suggest that you get in touch with your rheumatologist and arrange an appointment. It is important to discuss your feelings about the medication; if you were experiencing side-effects that you couldn't tolerate any more, your consultant could look at other possible treatment options and you could discuss them together.

This is a common problem with lupus treatments because unfortunately some of them do potentially have nasty side-effects. It can sometimes take a while to find a treatment regimen that works for you as an individual.

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