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can anyone please help or even understand?

Posted , 2 users are following.

sophie92852
sophie92852

i have lupus and im currently having 6doses of cyclo. i recently developed a chest infection and have been on anti-biotics for 4week but they make me sick. unfortunatly my last dose of cyclo has been moved to a later date. bad timing as im doing exams atm. im also doing 12mls of imuglobilin(i dunno how you spell it) i have a fentynal patch of 37mg every 3days but this is just because im addicted and not for pain. my question is though why when i take pred at 60mg that my chest seems to clear up staight away and i stop coughing almost imeadiatly and why did iot take so long for this to be done. normaly i would put up the does myself before being told but i hate pred so much, im gurenteed not to sleep while on it and when i change my patches ie today i dont sleep. so now i look forward to 5nights of hardly any sleep during my exams. im so fed up. every time i start to get well and start my life again something happens. sorry im having a bit of a moan here but im really fed up. im a 27 yr old singal mom who has had serious lupus since 14 left school, had a stroke, intesive care for 6weeks another time and much much more. ive had countless treatments that have worked and then stopped. the patches piss me off the most but im paying for privet rehab during my summer holls its expensive but worth it, ive got no where with help from doctors. if anyone out there can help or just to take the time to read to this point and still be carring on that is much appreachiated. sorry about my spelling. hope to hear from someone soon. p.s im new and dont know whow the site works yet so please bare with me.

 

0 likes, 9 replies

9 Replies

  • marion64534
    marion64534 sophie92852

    Posted

    Poor you sounds like you've had and are still having a hard time, obviously I'm not a doctor, but it almost seems like u need to come off all meds and start again from the start, realise this can't happen, can't recommend anything I'm afraid, positive thinking works for me, but that's easier said then done at times, know that ur not alone out there,good luck, hope you feel better soon.
    • sophie92852
      sophie92852 marion64534

      Posted

      thank you this is all new to me after so many years im finally comming to term with my life. i have stopped all my meds apart from fentynal patches but i plan to get off them during the summer as i dont sleep. i think im very depressed and have been for a very long time . thank you for replyin its just nice to know there are other people out there. this is the first time ive ever looked up sle or looked at af orum after years off being told to by family friends and docs ive finally done it!!. 
  • marion64534
    marion64534 sophie92852

    Posted

    This is all new to me too, but it is good to know that there is somewhere to chat too other people, I don't know anyone with Lupus, apart from this site, so it's really nice to chat.
  • Florabunda
    Florabunda sophie92852

    Posted

    God that's tough! As a fellow lupie you have my very, very best.

    As I see it... Pred damps your immune system. Good news you don't attack yourself so much (the inflammation/pain/exhaustion thing); bad news, your immune system now can't jump on infections any more. I've had x3 lots of pneumonia on a lower dose than you - it's horrid.

    Pred also 'ups' the system. I'm sure you do this already but.. I always take my steroids early in the morning when I'm waking anyway. The earlier I can take them - the more sleep I get. I don't have caffeine after 3pm. Immunoglobulins are given for some symptoms of lupus but are not given commonly in the UK I think? Why did your docr=tors chhose these? Have they ever given you anti-malarials?

    I've never had  cyclosophomomide but.. Cyclophosphamide is a type of drug known as a disease-modifying anti-rheumatic drug (DMARD). These drugs have the effect of dampening down the immune system, rather than simply treating symptoms. Cyclophosphamide is a very powerful drug, so it’s always used with care and supervision. - See more at:

    https://patient.info/medicine/Cyclophosphamide

    Speaking as an ex counsellor.. I'd say you have to start being v v kind to yourself. That means explaining to the kids that they could be really great at helping you stay well thorugh the exams (I remember that well). So, try to eat well - don't diet or cut down - just take time to eat. The world won't end if the place is untidy or the ironing never gets done. If you can't sleep - please still try and rest. Have a glass of wine an hour or so before bed (easier said than done in some parts of the USA - I'm guessing that's where you are?). Or.. whisper this... buy some cheap anti histamine and take a couple before bed!

    Fentanyl is a powerful painkiller - and you really need pain relieff. Becoming dependant is nothing shameful - almost par for the course. Please make sure you have other pain relief ready as a replacement. I use tramadol (ultracet USA) and occasionally buprenorphine.

    Above all, don't start beating yourself up for being unwell - your immune system does that already! 

    All the very best. Let us know how you get on?

    Patient Moderator Note: I have removed an URL (a link) from this reply as it was unsuitable for inclusion (it was broken, unrecoverable) within these forums however I have provided a suitable replacement. Sorry for any inconvenience.

     

    • sophie92852
      sophie92852 Florabunda

      Posted

      i have replied but not sure if you can see it let me know im not used to this yet lol
  • sophie92852
    sophie92852

    Posted

    thank you, i am actually in the UK.i have phnamonia lots too im now bleeding into my lungs. ive got my last cyclo on the 20th at least for 4years before i have another 6. i do everything with regards to sleep already they wont give me sleeping tabs anymore because i od'd quite badly once...

    they are using immunogobulin because everything else failed. i have a top lupus doc and he doesnt even know what to do anymore. luckily he has known me for 15years and we have a good relationship. its just nice to know im not the only one who suffers. my course next year is all about addictions as this is what i want to progress into i used to want to be a councler for youths wityh long term illness but it was too close to the heart butnow im thinking so is this. reading stuff on line is so scarey ive had to stop. i honestly think im having a break down i knew i would sometime. 

    i missed my exam today i managed to over sleep for the first time as i havent slept for 4days im glad i did though, i can do it monday all being well. thanks agin for your support 

     

  • sophie92852
    sophie92852

    Posted

    yes i have had anti-melarias in the past with no joy. this is a very short version of everything thats happend since i was diagnosed as im sure you can guess. your info has been helpful thanx again
    • marion64534
      marion64534 sophie92852

      Posted

      All the best of luck with your exam, and what ever direction it takes you,
  • Florabunda
    Florabunda sophie92852

    Posted

    You have been through the wars!  Glad you have a good consultant. It's perfectly normal to feel depressed with this lot going on. Sorry I did the US thing - but several people on here are from the US - so now I try and refer to that.

    I think you need to book a long appointment with the consultant and take a friend. Just find out what they are thinking about managing your condition. Ask for a written summary - this is v helpful - I always forget something!

    Are you on blood pressure meds - just that lupus can cause [rare] increased local blood pressure/bleeding in the lungs. A friend with lupus has this too.

    Hang in there. But stopping all meds is really dangerous with lupus - so please talk to your GP? Tailing off meds is fine - maybe you did this?

     

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