Fed up!!!!

[Mainshah]

Fed up of taking all the pill? Don't wona take them anymore going to talk to rheumy on Monday fed up and had enough of it all.;(

[zibiba]

Hi, I was like you, wanting to stop my steroids etc thinking why am I taking these pills so I cut my self off them, over a three month period as you should. After that I felt awful and I had lots of aches and pains no energy swollen feet and legs and cracks at the side of my mouth. I finally couldn't stand it any longer and went to see the Rheumatologist who sent me for blood test and the results showed I had a very low blood platelet count. I had to go into hospital for therapy which made me feel a lot better. Now I am back on the steroids so please don't do any thing silly like me because more serious things could happen to you. Take care.

[Mainshah]

I'm just fed up of take so many pills, I missed my dose once when I was newly diagnosed and I flear up, was in a lot of pain then. But then yesterday I missed my dose again because iv just totally had it can't be bothered any more. I felt fine I dint flear up I had no aches and pain, had a slight headake and few twitching of the musels wiles I was asleep but other then that I feel fine? What does this mean? Can I cum off the pills? I felt good I felt better without taking the pills then when I do take the pills?

[rlupus]

I know how your feeling i take over 26 different medications daily and i often question myself why do i need them when they don't seem to make me feel any better , but my GP told me not to stop them as i could end up with more problems i really don't want to addd to the list, I have anti phos lipids and chronic obstructive airways , lupus , diabetic, and many more problems but i have just had to learn to try and cope the best i can and keep fighting this awful illness. Please do not just stop your medication it may cause you more problems. Good luck take care x

[Mainshah]

I dint have a flear up yesterday am I in remission ? Ad if so can I stop medication ?

[Purpletop in reply to Mainshah]

If all of us would go in remission so easily, no one would still be on this forum. Remission is the Holy Grail - we all want to be cured but most of the times when people speak about remission, they mean absence of symptoms whilst taking medication. Focus on getting to a steady state with medication first, then discuss with your consultant whether to reduce the medication and ultimately come off them. It might take you 12-18 months at least.

Hang in there - you may be fed up taking the pills but without them you'll suffer in the long term. Don't be fooled into thinking that feeling good for one day after stopping pills means everything is hunky dory - you need to be patient.

[IMillar]

Like all lupies I have to take a lot of medication but I trust my consultant that he wouldn't be prescribing them unless I needed them. I know what each tablet is for and why I am taking them. it is reviewed each time I am at the clinic and I am lucky in that I am not suffering major side effects. Talk to your rheumy and understand why you take what you do. You don't say why you want to stop taking them, if you don't feel they are helping then you may need to try something else. Sometimes it can take a while to find the drug that suits but never stop meds suddenly. x

[Mainshah]

Hi Purpletop,

Went to see my rhumy 2day she said what u said I hant gone in to remission ad a year is to early for me to go init remission so I can't stop my pills, she has redused my steroids and wonts to refere me to leeds becouse I wona start a family soon. She also saiid I need to talk to sumone and refereing me to counciling. Becouse wilse I was there I kept saying I'm cured and she kept saying I put my hand in my heart ur not cured ad things will get bad if I stop taking the pills. She also thinks I'm not coping well,

I guess everything it hunky dory lol x thank you for ur reply

[Mainshah]

Imillar,

The reason y I wona stop is becouse I feel fine and feel like I don't have lupus, so if u feel fine then y should u take a dozen pills every day. But then again my rhumy tells me I'm not fine ad I have lupus ad my anti body are very high just not understandin.

Thanks for ur reply

[Butterflywings in reply to Mainshah]

Hi Mainshah,just read your post and wondered how you getting on it was like reading about myself. I feel just the same, I want to start a family but told my anti bodies too high, but I don't feel ill, haven't take a day off work sick for over 5 years (apart from having to when I had a missed miscarriage last May). Finding it hard to cope wonder if counselling would help but no one ever offers it. At my appointment today they suggested going on a more aggressive treatment (infusion) but this then adds to the waiting to start a family

[Mainshah]

Hay butterflywings

Thanks for ur reply i went to see my rhumy ad she told me I have to wait untill my appoitment in leeds still waiting a month later, she also said I wunt coping to well ad refurd my to a phycolagict with I see on the 13th of march tbh I'm truly and utterly fed up!!