Bin the medication????

Had so much, for so long, for so many reasons that i no longer know what benefit i'm getting from anything i'm taking. Has anyone been brave enough or daft enough to take the step of starting over with their meds. I no longer know what pain is caused by what condition and fear i may have built up a tolerance to meds and they are no longer of any benefit and may even be doing more harm than good. I have an appointment with someone at some hospital every week and as no-one in the nhs talks to eachother they each only have interest in their bit of me. If they won't treat me as a complete person i will. I need to take control of my life or i'll lose control of my mind.

7 Replies

I can understand how you feel, its been 4 years now since my diagnosis and they keep giving me more and more meds, to try to help with different things, but I wonder sometimes, whether I am having one med to counter the side effects of another etc etc. Very difficult, but too scared to come off everything.,


Whoa - this is so interesting, I have just had this conversation with my husband (who, incidentally is in the pharmaceutical industry). I reckon Plaquenil has sorted me but since then I have been on anti-depressants and think that I would be better off without the side effects. Good luck and let me know how you go.


Yes! Great discussion oing here

I was on high dose nexium and domperidone for 6 years recently. Got fed up, told gp wanted to see if could manage without. She was unsure, but I went head. My goodness did I find out I felt even better off: yes! And that was ome thing like 6 years go now. But boy have I been lifestyle manageing how I eat, and at least I know I can always use those meds again if upper GI probs start up badly

Over the years gps etc have thought about antidepressants for me, and for a few months way back in the early 80s when my first marriage crashed I did take them and they helped. But like you guys said, the side effects made me want to get off and stay off. When my lupus got really bad in the early 90s and the medical establishment was looking only at secondary problems (pleurisy, joint pain, possible MS whatever) I got badly depressed again. Instead of antidepressants I went for counselling (I was lucky, my long time Alexander technique teacher is also a psychosynthesis therapist, so at least I knew she was likely o be a good therapist, and that we were likely to click). Anyway, she has helped me learn to manage my depressive tendency so much more effectively. I have a feeling I will never be tempted to take antidepressant meds again. And I know others with big depressive probs who have also found they can manage through counselling or therapy. I know I am lucky and that for some the antidepressant meds are really important, but like you're all saying: we have to take so many meds for lupus etc, that any meds we can avoid, or at least try coming off, gotta try do it. My feeling is: when i do try to come off, also try to have my gp & rheumy & co on board first


hi... I gave up most of my meds after my kidney transplant. came off all but anti rejection drugs ( x 2) - have to take them!!! steriods (5mg of prednisolone) which I increase when I need to and re come down after a flare, alpha calcidol and blood pressure tablets.. I do have oral morph for emergancies but after 10 years of dealing with this basterd of a disease, I changed my diet, meditate, rest and listen to my body. After having everything from gabapentin to cyclophospamide (yep, Lost every hair on my body!! FUN!!) I decided enough was enough. It was not brave it was a choice after 10 years of crap. The first month to 6 weeks were hell, but it got easier. I still have meds for flares, anti biotics and extra steriod intraveniously when I have to go to the hospital, but I will not go back to being a guinea pig for doctors who do not really know how to treat me, especially as I react to all meds quite severly. It is not a choice for everyone and you need to seek advice from many people, and you will be given conflicting advice, but ultimately it it YOUR CHOICE. what you want not what other people expect. I treat myself as a whole not as bits, I have never had to take anti-depressents, never had to have councelling or therapy. I try and maintain a positive outlook and keep my mind active and alert, my body might be useless but my mind is not. I still have bad days, still scream, cry and swear but its not the be all and end all. Hope this helps. PS I am doing ok without them.

Best of luck


Thank you for all your replies, just knowng I'm not alone in my thinking has helped me to rationalise my thoughts on this subject. I have an appointment with rheumy tom and feel much stronger and calmer with about discussing this with them now.

I have not been on less than 10mg of prednisone for 13 years, the main side effect is that I now have osteoporosis, a fractured pelvis getting out of bed and a fractured foot walking up the stairs, both last year taking months rather than weeks to heal. This might not be reversible but, I don't want to wait and see what else will go wrong due to side-effects from long-term use of medication.

I have been through so many meds, tried counselling and therapy, useless for me, had the anti-depressants, the crap relationship, been forced out of work, retired at 32! Crutches, bath aids, cot sides on my bed, hoists, ...etc. No hair, bloated, fat, thin, had my skin scale and peel off head to toe...and much more.

I had a good spell a couple of years ago and decided I didn't want to spend my life alone, I thought I'm finally managing this, I'll be ok. I was lucky and have met and fell in love with a lovely man, but this isn't what either of us wanted from life. We'll be ok, but people really do under-estimate how destructive auto-immune illnesses can be.

I wish treatments like the Alexander technique and many other therapies were available on nhs, heard great things about it from so many people including many doctors, but I can't afford it.

I tell people I'm a practising geriatric, I'll be the happiest person in the nursing home i'll be so used to being old and decrepit before I get there...LOL!!!

I turn 40 this year, I have felt 90 for so long it really doesn't bother me, in fact I want a party and to celebrate the fact that I'm still fighting and I want to feel good when I celebrate.

I go to four hospitals as bits of me are treated in by different teams so rheumy is just my first port of call, I just wish someone would take ownership of my health records and treat me as a whole person and I wish everyone would stop trying to prescribe anti-depressants and instead get to the route of the pain that is causing me to be depressed...arrrghhh. My body might be ready for the scrap heap but my mind is ready for battle!

I'll update this tom and let you know what rheumy say.

I wonder if together we could use forums like this to push for better treatment of lupus patients in fact anyone affected by an auto-immune disorder as I bet that would cover a high percentage of the population! The amount of people who have said the are treated by gps only and seem to be dished out anti-depressants like a gagging facility is really pi**ing me off!

We are people not just cases. If ever I can make this body more relaible believe me I'll put all my energy into kicking arses left, right and centre. Yes I can be the consumate professional in dealing with matters however, right now the frustration I feel would probably be more effectively taken out on one of my nephews PS3 games...

Thanks again, i'll make my update a little briefer than this posting...promise!!!


Just want to say good luck for tomorrow. I hope you get the answers your looking for. I have a rhumy apt tomorrow too :) x


Well i won't be binning the meds any time soon, though broaching this subject was so wothwhile. Doc went thru everything in detail, why, what, when and has given me a really clear picture and peace of mind that what i am taking is what is best for me. Weighed up the pros and cons of each of my meds and discussed what changes would be required in me to change the meds. Have also done the biggest range of blood tests i can ever recall to see if any hint of any of those changes.

Wish i could write a better post, but it's been a long day and as my veins decide to play hide and seek my arms look like black and blue pin cushions and they're killing me, the swelling is unreal. Still, at least it won't require another!


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