Page 1 of 3 123 LastLast
Results 1 to 10 of 24

Thread: At a loss..What next? Any ideas..at the end of road.

  1. #1
    Join Date
    Apr 2007
    Posts
    28
    Thanks
    0
    Thanked 0 Times in 0 Posts

    Default At a loss..What next? Any ideas..at the end of road.

    Hi.

    Its been a bit since I've been around - sorry. I've gotten out of the hospital recently from my second round of Imuran - both times trying this medication have put me in the hospital - which is rare for me. I vomit and have diahrrea to the extreme, along with fevers on this medication.

    Anyway, I have a few things that I don't know what to do about and others to just vent.

    First, I have NO clue what medication to take for SLE Nephritis. My nephritis stuff isn't horrible at the moment so I'm not overly concerned.

    I cannot take plaquenil or imuran at all - vomit city. Methotrexate - makes me nausea everyday - but no vomit - not sure what is worse - did this for a month. It also made me super tired..

    My doc in the hospital talked about injections of MTX or Cellcept. I take Prednisone as well which helps with some of the symptoms of Lupus. However not all. My joint pain and swelling is becoming more of a problem.

    Any ideas for me and my sensitive stomach? My stomach is super sensitive and I seem to have the 'rare' reactions to most of the meds.

    I'm so fed up with the treatment options i'm just beside myself...i don't know what to do..part of me just wants to take prednisone and be done with it.

    As some may remember I have MSA - which is terminal anyway. The 'bummer' part is that Lupus makes me super tired and its hard for me to walk for alot of reasons so not sure how much lupus is impacting this..I'm 40 years old so this just sucks...however, i'm to the point where i'm tired of being sick and tired of fighting...i don't mean to whine...i've thought long and hard about it...i have been trying to make sure all loose ends are taken care of - and i pray God takes me soon...i wanted to live for as long as i could - but throwing up is not a good thing for me for alot of reasons not to mention mentally.

    Honestly, Lupus has and still is seriously kicking my butt. I can't seem to control it - and i'd like some quality of life if possible...i understand its hard because i have so many conditions...diabetes has been out of control a bit..but i'm learning..

    I'm just really tired of being sick and wish there was some magic pill that could make this go away but i know that isn't going to happen. If there is medication that can make my quality of life better that would be nice..

    I apologize for being a 'downer' and bringing up a topic that might upset people. I haven't really found a place where they talk about dying and what the end stages of conditions are like...

    Anyway, if anyone has suggestions for medication I'd appreciate it..I see the doc on Friday - however, I think my cardio is going to conflict with the Rheumy because of the Cardio impacts...so hard to figure out....

    Take care to all...and all my thoughts are prayers are with you all as I know this disease and being sick is not anyone's idea of what life is or was supposed to be. Todd.

  2. #2
    Join Date
    Sep 2006
    Location
    Minnesota
    Posts
    1,368
    Thanks
    0
    Thanked 0 Times in 0 Posts

    Default

    Hi, Todd. Good to see your post - I've thought about you often. I'm so sorry the road is so rough for you. I'm not clear if you're taking meds via injection or not. I know that's a solution for many people when they can't tolerate drugs like methotrexate orally. It 'by-passes' the stomach and usually eliminates the nausea stuff. I expect that might be the case with other injectable drugs as well. I'd sure give that some thought. I was on methotrexate and imuran; now I'm on cellcept. It seems to be working...finally. Cellcept is sometimes used for lupus nephritis - and high doses of prednisone. Maybe your rheumatologist will refer you to a kidney doctor for that.

    You know, I don't think I've ever seen anyone talk about 'end stage' things on this forum, but I'm sure it's something many of us think about. It's a hard topic to face, but one that we all have to make our peace with at some time. I'm sorry that you have to face that reality so young, Todd, and I pray that you find a way to cope; to have that quality of life you're looking for. I'm wondering if you might find someone locally, maybe through your area hospice program?

    Glad you are able to log on again. I hope you'll stay with us when you can. There are a lot of caring people here, and a lot of collected wisdom. You may find some answers; you will certainly find someone who listens. Take care, my friend.

    Jody
    "If you trust Google more than you trust your doctor than maybe it's time to switch doctors."

  3. #3
    Saysusie's Avatar
    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
    Join Date
    Nov 2001
    Location
    Victorville, California
    Posts
    7,765
    Blog Entries
    10
    Thanks
    1,624
    Thanked 934 Times in 593 Posts

    Default

    Hi Todd;
    Mnjodette has given you some excellent advice regarding the end stages of life. There is not much that I can add at this moment except to say that we will help you in any way that we can in this area, whenever you feel that you need it.
    Also, her advice about taking you medications as injections was exactly what I was going to suggest. Please let us know what you and your doctors decide and let us know if there is any way that we can help you further.
    We truly understand your frustration, your feelings of "enough is enough". It is hard to fight when even the things that you are doing to help you feel better have side-effects that are almost worse than the symptoms they are supposed to be working on. You have every right to want to have some form of quality of life, and suffering from medications and their side-effects does not provide that for you. Contacting your local Hospice program might be a good place to start. I've found them to be more than willing to give support, information, talk about alternatives and how to work towards some form of quality of life.
    In the meantime, we are all here for you. You are never alone!!

    Peace and Blessings
    Saysusie
    Look For The Good and Praise It!

  4. #4
    Join Date
    Dec 2007
    Location
    minnesota
    Posts
    78
    Thanks
    0
    Thanked 0 Times in 0 Posts

    Default

    Hey todd!

    Just wanted to let ya know you will be in my prayers...

    They more i read on this forum the more things I learn and sometimes it scares me to really think that could be me!? but i do know that life is about living, and right now you have that.... hold on to the moments that made you smile and think of those times.. who knows god may bless you with many more years.

    I am used to having this conversation with my clients. I ask them these tough questions like " what would you do if your husband was no longer here? would you want the kids to go to college? would you want to be able to take time off of work ect..." NO body likes talking about exit stratigies but what kind of planner doesnt plan for the end? or the what if's? this is my problem i think wayyyyyyy to much about the what if's.

    Peace of mind is what your looking for.... I cant offer that, neither can some magic pill... I wish there was something I could do, it makes me sad to hear such pain coming form you..
    Take care and GOD bless

  5. #5
    Join Date
    Nov 2007
    Posts
    43
    Thanks
    0
    Thanked 0 Times in 0 Posts

    Default

    Hi Todd

    Iam sorry to hear of your pain and med problems. My doc wants to put me on imran Iam on cellcet and its working really good with praqinal(cant spell) cellcept messes to much with the liver i have auto immune hept. so they want me to switch. my brother inlaw was in the hosp. because he was so sick on imuan. i dont want to switch i fell like crap all the time i dont need to be sick on a med change. if you cant take cellcept i would try it there is hardly if any side effects i hope things look up for you

  6. #6
    Join Date
    Apr 2007
    Posts
    28
    Thanks
    0
    Thanked 0 Times in 0 Posts

    Default

    Hi ALL!

    Holy Cow! I have missed you guys - nice to hear from you Jody and Susie - long time no talk.

    Ok, I'm going to 'think' about this injection stuff. It makes sense it it bybass' my stomach - I seriously don't think I could handle many more days of throwing up...Maybe I'll do the Cellcept - I hope this in injection form - my kidney doc says my kidney's aren't bad..lol, little protein little sugar...not horrible like some..my heart has been acting very strange lately, beating really odd...i c cardio tomorrow so we'll talk about that....

    Thank you all for your support and great advice...I was seriously just giving up on the Lupus Meds - its sucks there isn't more choices...need some options for folks like me who are the king of side effects...

    Yes, hospice will be involved once I get closer...right now I'm trying to get everything settled down to the smallest of details...its so much to think about...anyway, i have alot to do and i would like some darn energy to do it...i feel like jabba the hut -- getting fatter by sitting here all the time...not to mention i have sores on my back now - and its not like i don't move around - i do..around the house...heck i had 5 boys over last night for a sleepover with my youngest son...

    Thanks again for all your thoughts and prayers and its great to know that this great group exists...even the smallest of notes helps - makes me personally feel less alone...I'm as good as anyone can be with dying - but good Lord the slowness of the process is not fun....Anyway, I'm going to have alot of fun until that day comes let me tell you! I want to go snowmobiling darnit - I've never been and I want to go - an sledding with the kids...I hope I get to do this...

    Take care and feel free to email me...Todd

  7. #7
    Join Date
    Sep 2007
    Location
    California
    Posts
    684
    Thanks
    0
    Thanked 14 Times in 13 Posts

    Default

    Hi Todd,

    I am so sorry to hear about your kidneys. I have some friends who took injections and did very well. You are in my thoughts and prayers. Your children really need you and, of course, love you very much. You need to fight as long as you can; because their life will not be the same without their Dad.

    I read you have diabetes. My Mom had had it for 30+ years, has nueropathy in her feet and can't feel them anymore. She lost her sight completely due to hemorraging in her retinas. Do you have your eyes checked regularly?

    I am able to control it by limiting my carbs to 40 per meal, and taking 3-4 tablets of Garcinia Cambogia one hour, with a glass of water, prior to each meal. Garcinia Cambogia can be purchased through Swansons Vitamins online. I learned by reading an awesome book called "The Diabetes Cure" by Vern Cherewatenko, M.D. It can be found on Amazon or you can order it; it's not expensive. Your kidneys will love you and you will control the diabetes; naturally. It really works; I am proof of it and my labwork has been normal for the last four years. Hav eyou had the sores on your back checked??

    I am praying for you, and I hope you get this disease under control. We want to hear about the snowboarding. Please keep us updated.

    Take care,

    Faith 8)

  8. #8
    Join Date
    Sep 2007
    Location
    California
    Posts
    684
    Thanks
    0
    Thanked 14 Times in 13 Posts

    Default

    Hi Todd,

    I just thought of something else too. Do you have high blood pressure also? Most diabetics do is why I am asking. There is a high blood pressure med that protects your kidneys while lowering your blood pressure, it's called Lisinopril and is an ACE inhibitor. If you do have high blood pressure, it might be worth talking to your GP about it. The bonus, it protects your kidneys.

    Take care,

    Faith 8)

  9. #9
    Join Date
    Apr 2007
    Posts
    28
    Thanks
    0
    Thanked 0 Times in 0 Posts

    Default

    Hi:

    Ok - I got the injection stuff today...so stay tuned...sigh, my flipping doctor is annoying me - I'm going to try this but if it doesn't work- I can't believe I'm going to say this but I want to just go up on Prednisone. I already have Diabetes and Osteo from Prednisone so what's the big stuff that is left - nothing that I really know of....anyway, we'll see how it goes.

    Faith - thanks so much for your comments and thoughts. I have Prednisone enduced Diabetes - not sure what will happen - however between all my med's my Diabetes remains uncontrolled.

    Sigh - I need a brick at the moment -sorry...all this stuff is so much...so many things can impact my eyes, I'd be better off getting a hot poker and using it! Whew - I had them checked about 6 month's ago - and Diabetes was being used as the reason for a decline in my vision - I had Laser surgery about 7 years ago. Anyway, I don't know.

    Doc says I need to have my stomach checked by gastro...in part because I can't take the Osteo medication because of the side effects...she kept mentioning some cancer name that she wants me to bring up to the doc - well I already forgot! Good Lord she knows I have no memory....dunno...we'll see...

    Gotta run...have a nice weekend...I'll be around and see how things go....Todd

  10. #10
    Join Date
    Dec 2007
    Location
    Edinburgh, Scotland
    Posts
    144
    Blog Entries
    1
    Thanks
    4
    Thanked 5 Times in 5 Posts

    Default

    Heya Todd

    Just a note to say that I really hope that the injections work for you and don't make you sick! Will be thinking about you over the weekend! ~leaves a bundle of hugs for you if you need them~

    Take care

    Claire
    x
    Numpty:- (num-p-tee) dialect, chiefly Scot, ~n. 1. a bumbling fool: one who is intellectually challenged. 2. widely known in Scotland as an MSP (Member of Scottish Parliament).

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •