yes im a whimp :(

so sorry to write again about same thing but im still unsure whether to start my new meds of AZATHIOPRIN ,i was given great advice from members on this site reguarding side effects ;the main one that worries me is that it can lower your W.B.C. but mine is ALWAYS low and then id have to come off it,wait and then go back on etc.

ive phoned GP surgery twice for my blood test result to see if i can tolerate new med but they waiting result yet had bloods taken same day i saw my consultant on 14th december?

i saw my lupus nurse and she had to get advice from my lupus specialist whom was on duty that day,she came back with " she cant believe your symtoms need more meds,but try these" im upset as i wouldnt lie, i often cry myself to sleep as my whole body aches,my skin stings and visual migraines etc etc are getting me down. my lupus has gotten slowly worse over the 7yrs and my flares last for months at a time.

ive given up going to my GP as not one of the GPs know enough about lupus to help and tell me to wait to see my lupus specialist; but she talks over me, tutts , and has said "some of my other patients are worse than you and i dont help them" and she has given me prescriptions before (anti-depressants) but ive googled them and chosen not to take them and shes said in a loud stern voice that ive wasted NHS time and money!! but i never "got" meds and i pay for my prescriptions!? she intimidates me.

im due to see her in febuary but in genuienly scared,i cant ask my hubby to come in with me as he is upset that im not any better in 7yrs and i know he would raise his voice in there.

at my last GP appt for my dodgey mole the GP had to pop out the room for a min and i took a quick look at the screen (it is MY info after all?- felt naughty doing it tho) and my lupus specialist said "she prefers to self medicate" !!!!!!!!! NO IM AFRAID TO PUT MORE DRUGS IN MY ALREADY KNACKERED BODY!! i have told her that, yeah im a whimp and prescriptions cost money that we dont have, we live hand to mouth now..............dont know what to do........wish i could go to sleep and never wake up.

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  • Darlin' don't think like that & don't ever let anybody make u feel that way. We all have different pain thresholds & we all react differently 2 medication. My Rheumy constantly gives me stacks as I refuse 2 take any meds 4 my lupus any more (I suffer with more problems when I take them than when I don't lol!) & prefer 2 'pain manage' instead. I am well aware that there will come a stage in my life when I WILL need 2 start treating the lupus but if I can tick along just dulling the pain till then, that'll do 4 now.

    When u have all sorts of symptoms coming at u from all angles it can really get on top of u & leave u an absolute wreck, physically, emotionally & mentally. Lupus is not a text book illness & affects us all differently & if u're Rheumy was any good at her job she'd know that, rather than having a whinge that some of her patients don't need half as many meds or have half as many problems as u do. Grrr, makes me mad. Can I punch her 4 u? Seriously think u should put in a complaint & find another rheumy. How dare she talk 2 u like u're some naughty disobedient child? Try & keep u're chin up honey x

  • I am so sorry that you are feeling this way, you aren't a wimp at all! Can you see someone else, would you be able to talk to your lupus nurse? Feeling intimidated by a specialist must be awfull. Please take care xx

  • Hello Canine Crazy,

    We all sometimes feel that we are at the end of our patience with both the disease and our doctors, and what yours said to you was unforgivable. I too prefer to try and sort things out myself, having had anaphylaxis, and I am also very wary of sticking any other medication into my body. Some of the very good doctors will listen to what you are trying to tell them and either agree with what you are saying or try and reason with you. However some have forgotten what they went into medicine for because the government has made them hit targets on so many things, that they no longer have the time to spend with patients with the more unusual chronic conditions like they used to and it is really dreadful for patients with such illnesses. All patients are different and all suffer from degrees of pain and cope with it in a variety of ways and if you need more help you should jolly well get it. You can get help with prescriptions through the low income support scheme if any savings and income are less than £16,000 per year. Please do not be intimidated by your consultant and if necessary ask to see someone else, it is your right. You are NOT a wimp, just worn out with it all. But Don't give up with trying to be treated the way you want, if you do not wish to take the medication there are other avenues to try. These days it is all meant to be about a patients involvement in their own care! Some GPs can offer an acupuncture service for pain which I gather has had some success and other things can be tried for depression. It is such a shame that some of us have to fight for them. You will find that we are all here to support you in whatever way we can. Take heart and take care, hope this helps in some small way big hugs.

  • thankyou to you all, made me cry xx

  • Aw.......it is so horrible you have been made to feel like that. I think professional people should act in an honest and upfront way and not write about us in such a way that is negative and not true. Would they write like this if you were there to see it.....this kind of old fashioned, writing style is really oppressive. Don't feel that you have to justify yourself all the time as you know what you are about......if people want to think or write things that are not true then it is their own issues they are dealing with or they are just trying to sound more important than they are. You know the truth and that is all that matters. I know too well that I have gone from a confident, assertive person before this condition to someone who has so many doubts. This condition seems to do that as it is invisible to others and symptoms flit about that at times I have felt like a hypocondriac. The reality is that we are trying to deal with a chronic illness in the best way that we can. Take no notice of the negatives opinions given. It may be the next time that when something like that is said by the rheumy nurse you can say "What does that mean" and bat the question straight back and leave them floundering and not you. Thinking of you xx

  • dear mstr, yes i too have lost my confidence, ive become someone who i dont know. i was a fiesty little thing,assertive but never rude. i have to plan my day incase i take on too much and use my spoons too quickly. im still having to remember that i cant do what i used to,but i find that so frustrating i could scream!! thankyou for listening,means alot xx

  • u need 2 find that person once again my lovely. Dig deep, she's still there ;0) x So many of these 'specialists' need a lesson in their bedside manner. At the end of the day they aint Gods & r no better than me or u. They'd do well 2 remember that they r there 2 provide a service x

  • We make an informed choice when it comes to taking medication, particually as some of the side affects of these drugs are horrible. When i said i didn't want to take azathioprin, the doctor looked quite hurt. As it turned out, i didn't really need to take it anyway.

    Like you, some of these drugs scare the pants off me. Take care. x

  • Hi, I hope you are feeling a bit better. The only advice I can offer you is around the support from your Drs. Having been in this exact same position where drs are very unhelpful and have little or no understanding of Lupus and its many problems, I decied to change all of my Drs!

    I changed Gp to a Dr I that has a special interest in chronic fatigue, at least he can understand that side of it.

    I insisted on a referral to a specialist lupus unit and was lucky enough to get in at St Thomas, but Manchester have a good unit as well.

    I then researched rhuematology consultants who have a speacial interest in Lupus and picked the most local one to me which was Liverpool.

    One thing I have learnt is do not mess around with Drs who dont understand or have little knowledge, the best chance you have of managing this is by surrounding yourself with people who know what they are doing. You can choose who you see, you just have to be forcefull.

    I wish I had done it sooner as I nearly died last year I was so bad.

    xx

  • Hi caninecrazy

    I'm so sorry to hear you have had such horrible experiences. I have had a lot of pain and illness associated with lupus but I have always been lucky enough to have good supportive medical practitioners around me. My GPs always talk things through with me and have, in the past, said that I know more about lupus than they do! ;) Together we work out what will be the best way forward for me.

    As far as azathioprine is concerned I can only tell you my experience. I was on a huge dose of steroids and it piled weight onto me. I quite literally doubled in size. Anyway, my specialist mentioned azathioprine as an alternative. He gave me time to think about whether I wanted to take it or not and gave me a leaflet telling me all about it. Then I had to wait for the all clear from the cancer unit because I had previously suffered from Non Hodkins Lymphoma. Even they felt that azathioprine would be beneficial even with the risk of a low white blood count. So I went ahead. That was almost 3 years ago and I can honestly say it has been the best thing I have done in years. It has made life so much easier for me. I am less depressed and more pain free that I have been in many years. I have even noticed that I get less mouth ulcers than I used to - and I hate them more than any amount of joint pain! I got my bloods tested every month and recently this has changed to every 3 months and everything has been fine. I cannot tell you to take this medication or not take this medication - that is a decision for you alone - but I did want you to know that it CAN be a positive experience.

    I really wish you all the best no matter which way you choose to go.

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