Hi all, been trying to tough it out by self, not winning! Confused, anxious, frustrated, lots of unanswered question. Anyone help please?

Currently in Hospital to try to deal with depressive side of the picture, having to deal with medication induced symptoms, drug interactions etc. Unable to work for last 5 weeks as in severe flare. Not managing pain or fatigue at all well. Trying to get all Medical supporters/Docs to work with other. Generally pretty yuck!!!

Had routine urine dip stick test on admission to hospital - showing high bilirubin levels, could this be from methotrexate/prednisolone or more potentially serious liver issues..? BP has gone from a 'normal' reading for me of 90/60 to 160/120 without any obvious trigger. Am now of ACE inhibitor to treat, however still reading high. Could this be due to Prednisolne? Been on these meds since Dec '13, why reaction now? Due to long history of depressive illness and associated meds have developed Tardive Dyskenesia, (involuntary facial, mouth, jaw movements) meaning a lot of otherwise helpful meds now off limits. Sleep extremely elusive. I know it's my body and ultimately I'm responsible for treatment etc but SOOO terribly tired of trying to coordinate the whole regime. Also had a physical on admission to psych hospital (routine) and was advised I needed to see neurologist due to impaired strength and sensation on right side of body. Oh goody-someone else to bring into the picture and pay for! I am really am quite lucky tho as still have private health insurance and am in well respected psych hospital with wonderful psychiatrist. Problem being it is exclusively psych hospital so have to try to arrange for other medical support outside of here.

Have been seeing rhuemy unfortunately not real helpful and am currently on waiting list for Lupus Clinic at Monash Hospital in Clayton so hopefully things may start to move forward in that area soon.

Thanks to those who responded to my venting re not being able to return to work in pharmacy due to lowered immune system and effect of meds on this. Still finding this hard to accept, although it's a joke really thinking that I could get to work or be effective there as I don't think I've even made a shower or got dressed for a week due to pain levels. Well I think that's enough negativity!!

Anyone who feels that they need to kick me into action or has some words of wisdom they'd like to share I'd love to hear from you. Thanks to everyone for caring and sharing, sending positive vibes to you all.

2 Replies

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  • Welcome to LUpus Patients Understanding & Support (LUPUS) at HealthUnlocked.

    I am sorry that you have had to endure both bad health, along with depression. I do have one suggestion.

    We also have another website called the LuPUS Message Board where you can also post questions and talk to other people. Registration is FREE and we offer free information and free online psychological support. We specialise in psychological support with our own counsellor/psychotherapist available.

    By becoming a Member, you will have access to the private forums and because they are private, only Members have access and even bots and search engines are forbidden.

    When you register, please use the following format for entering your date of birth: nn-nn-nnnn where n=number. Please use the "-" separator and not "/".

    Finally, please go to: lupus-support.org/LuPUSMB and Sign Up.

    I look forward to talking with you more!

    Sometimes we need to talk to people who understand and who are not family or friends.

    Be well!

    Ros

  • Hi hopefulcc, sorry to hear you are in hospital at the moment feeling poorly. When you've got aches and pains everywhere its hard to be all upbeat and jolly all the time, so allow yourself a bit of self indulgence ...lol

    I hope they manage to patch you up and make you feel a bit more human in yourself and i wish you good luck and hope you get out soon xx

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