PDA

View Full Version : At a loss..What next? Any ideas..at the end of road.



payitforward
01-02-2008, 09:44 PM
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.

mnjodette
01-03-2008, 01:26 AM
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

Saysusie
01-03-2008, 12:16 PM
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

joakris
01-03-2008, 02:55 PM
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. :o

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

ethanandrew
01-03-2008, 04:16 PM
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

payitforward
01-03-2008, 07:00 PM
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

Faith
01-03-2008, 10:27 PM
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)

Faith
01-03-2008, 10:53 PM
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)

payitforward
01-04-2008, 04:31 PM
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

Numpty
01-04-2008, 04:44 PM
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

payitforward
01-05-2008, 11:04 PM
hi....thanks much...i'll take all the hugs i can get! i'll let you know...pharmacy doesn't have all my medication...i'm going to be taking folic acid too so we'll see how that goes.....thanks much for your thoughts and hugs back at ya! take care....todd.

Saysusie
01-06-2008, 02:28 PM
Since you are open to hugs of understanding, comfort and support....let me send you a big warm one. I, too, hope that the injections work for you and that the folic acid helps!

BIG HUGS!!!

Saysusie

payitforward
01-06-2008, 11:46 PM
hi ss....nice to hear from you...! thanks for your support...i'm fairly nervous about it as time goes on...waiting for the medication...i'm praying i don't get super sick...i am really not good with vomitting and high fevers...hopefully this will help some...what a nightmare though....not alot of choices out there for medications....sigh...hopefully some advances will be made someday :) talk to you soon....take care...hope things are well with you...todd.

sick n tired
01-07-2008, 12:00 AM
Hey Todd,

Is the cancer that the doc wants you to check out adeno carcinoma? or Barretts esophogus? My dad died of that last year and I have been told that I have the beginnings of it. Can't do anything but take nexxium. Oh well.....

I am praying for you and your kids,

Karen

Oluwa
01-07-2008, 11:32 AM
Squeeze...I remember you PIF...

A new year, new thoughts can be trying. Thinking another year of this, egads. Me, I took up dreaming, denial for Oh-eight. The unknown, beyond is a scary thought regardless if we have faith and knowing it will happen because of a cause instead of it just being the process of a life lived.

I too wish there was a magic pill..sometimes our mind can be that magic. Tuck us away in a safe mental spot and filling us up with the things we can do. Enjoying and savoring the tiny moments. It works then we fall in a hole again. Dang hole, eh?

Awhile back you mentioned being on Xanax worked for your mood, feeling wonderful but feared addiction. Being at a stage of terminal fear not of addiction. Addiction to me means when one starts to lose control of their life, it's spiraling out of control, damaging a quality life but I wouldn't think that in your case. Being terminally ill coupled with many diseases it isn't really a quality life is it? A life worth living despite the lack of optimal quality, oh yes indeed. If, it keeps you level, not sedated or comatose why not? If it can bring you enjoyment and some fulfilment, hey why not. Consult your doctor. No one should be in mental anguish and pain.

I remember when I came out of surgery, hours later my pain was seeping through...pressing the nurse light, them coming in, I requesting pain pills and hearing them say it wasn't time. With a stern look, and flat toned I uttered. Time? Is the pill not named pain. Or is the pill in pain? No pain, no pills..I am in pain and I want my pills. Usually I am a good patient, in the end I received my magic pill.

I've dosed with every kind of pain pill from asprin to morphine and being aware of possible addiction I knew the signs...and you will too because you question and worry of a possible addiction. I never became an addict in the sense we are taking about. I never used it for a high, if you cross the line and it is used soley for a high then it becomes a true addiction. As with anxiety pills, if they treat the anxiety then addiction (high) shouldn't surface. Stop the medicine there will be withdrawals as with any mind, CNS altering drug. It's a given. Am I babbling or sounding coherent?

Gosh I hope I don't sound like a pill pusher...

Put that hot poker down...or put some marshmallows on it. Being a diabetic, you do get your eyes checked regularly, eh? Any bleeders behind the eyes? Affects the vision. My father does and has them cauterized with laser treament. I thought to cut off my legs when they hurt something awful at night, hack, whack with an axe. Off with my legs and not my head.

If you lived in the UP, Upper Michigan..motto "Someplace special'..or do you? I'd asked my brother to come and take you snowmobiling, ATVing. Bundle you up in a snowsuit and sorrels and blaze through our 40's. Wheeeeeeeeeee. Toss ya on a saucer and pull you through the drifts of snow too.

Hope the new meds is doing its purpose...and there is another mile in your road.

Till laterz...hugs, a pinch and prayer.
Oluwa

payitforward
01-07-2008, 12:03 PM
Hi Karen:

Nice to hear from you. Its Barrett's is what they are thinking. I've been on nexium for a long time so not sure what the treatment would be....I don't know anything about this condition 'yet' - I will - but does it make you throw up alot...doc's are thinking that it has to be 'something' making me so sick all the time - because no one gets sick on plaquenil, imuran, methotrexate etc. - except me - lol....I've always been very sensitive to medications so I do think that is part of it - what the other problem is - who knows!

Everything is sorta overwhelming to be honest when it comes to Lupus. I'm still learning about 'flares' but I seem to be almost in a constant state of a flare..I get rashes on my face and hands - sometimes both sometimes one or the other...right now I have both...Its like this disease just doesn't give up...I remember some holistic site and it said to take something - I can't remember it right now - its poisoness though - and it would flush out the Lupus...sounded a little crazy to me - if it was so easy everyone would be doing it...

Anyway, I'm sorry to hear of your situation. How did you get diagnosed? Last time I had an endoscopy - before I was sick it was nearly an ER situation - my BP dropped to 40 over something I can barely remember I was passing out for hours...anyway, now with low BP I can only imagine what might happen....

Talk care and talk to you soon....Todd.

payitforward
01-07-2008, 12:11 PM
Oluwa...wow nice to hear from you....and how very thoughtful you are! Great imagery of being outdoors...I live near Chicago so its not too far from the UP! I'll be right up! :)

Anyway, I agree with your comments on addiction and enjoyed your story about getting your drugs...at this point I'm thinking of taking the doc up on some valium...my oldest son is determined to put me in my grave...i'm actually thinking of kicking him out and having him join the military he stresses me so much...i worry when he's out, when he's home doesn't do anything to help - but eat tons of food, fight with his brother and act like my wife and i are the worst parents in the world....mind you the poor thing is on his 2nd car we've bought - this current car being a BMW 325i - eyes rolling...i know mistake..i feel bad because i'm dying so i want to give my kids what they want...and a kick in the teeth is what i get back...my poor 10 year old does help alot...more than he should to be honest...can't get the older one to take out the trash...anyway, i need to be quiet and thankful.....and patient.....

he's up...gotta run...take care....todd.

Oluwa
01-07-2008, 06:24 PM
Todd,

Me being 46... at 18, when I was, you moved out onto higher education or a job. Never considered staying in the nest past 18 nor did we consider it as being kicked out..it just was. You left when you were 18, adulthood.... I have 7 sibling and we all flew at 18. In such a few short decades, wow how things have changed, eh?

I understand how you want to give your boys everything, material items..but ah times... some times a lesson on life is the ultimate gift. It's a gift that keeps giving back to the child even when they're 46.

Stress instigates Lupus..I hope a day will come soon for you when your son will communicate and present himself like a young man, a father's son and realize his father's time with him is not indefinite, but finite.

I am sorry your gestures of love have not been appreciated.

Do they rent snowmobiles there? Lots of snow in Chicago.

Are your back sores, pressure point sores, Todd or rash sores? I have a rash like on my hinder...days it like pea size sores, bleeds and others day like dry patches and poof another day smooth as a baby's. I suspect Lupus as I have a patch above my navel, malar facial rash and oh a patch of the crude on my upper back. All which come and go. I've scratched so hard in my sleep sometimes..it leaves streaks, spaces like the tongs of a rake bruising from my fingers clawing at it. I keep my nails clipped...

Have you been caring for the sores though, do they look like skin ulcers? Sometimes moisture with pressure can cause an ulcer even friction, constant rubbing. Have you had it checked out by a physican?

I can't wait till tomorrow...it could just get better for you, for me, for all of us...

Enjoy the night and sleep well,
Oluwa

payitforward
01-09-2008, 09:16 PM
hi...

usually a fair amount of snow here...however, usually have to go a bit up north to go snow mobiling...

thanks for your comments about my son...the aliens will bring the real one back one day... :)

i'm watching the sores...red spots i guess...never had this before...i will have them looked at....just behind scheduling appoinments...i think i'm actually burnt out on going to the doctor!

sorry...gotta run....its late...been a tough few days....talk to you soon....take care...todd.

sick n tired
01-10-2008, 12:08 AM
Hey Todd,

I get sick on plaquenil, prednisone and anything practically that I put in my mouth. I am burning and nausious right now.
I have been diagnosed with barretts. The good news is that it is slow moving and they think if I take nexxium and do not throw up or feel acidy then the barretts will be stopped.........Of course, at the time of that diagnosis the docs were unaware that I had lupus also.
I do hope that the nexxium helps with your nausia..I will pray for you on that one.
In the meantime please accept a big cyber hug....squeeze........

In Him,

Karen

sick n tired
01-10-2008, 12:36 AM
Also, in answer to your question,( I guess I didn't read what you asked before writing you.) :lol: The doc did a scope on me. the first time I also had such low blood pressure that they had a problem bringing me back. Don't know what they did different the second time but that is when they found the barretts. The first time I had these little ulcers all up and down my esophagus...gross

I also have teenagers (7) and 3 young adults all but one are living here. Two will be moving out soon....I hope...(my fingers are crossed) so I understand what you are saying about your older one. Actually, I am waiting for the aliens to bring a few of my kids back, . :)
They do not realize that what we have might kill us. All they have known is when we their parents have always been there. Lupus is so long lasting and has so many tentacles that I guess they forget..and get caught up in their own stuff. when does the world stop revolving around them..I forget.....I know I was probably just like them...The only difference is like aluwa, I also moved out and never came back to live. this is a different generation for sure.
I also am very guilty of buying them what they want.

Oh well live and learn.

In Him,

Karen

Oluwa
01-20-2008, 12:29 AM
Hi Todd,

Did your son arrive on the recent UFO sigthing in Texas.....?

Rub a bit of Vermont's Bag Balm for cows chapped teats mixed with Cortizone-10 on you red spots...might help.

I dread being poked and prodded too. I have to get psyche upped. I haven't been able to myself either. Maybe this Monday.

Enjoy the rest of the weekend.

Over n out,
Oluwa

Suzique
01-20-2008, 03:29 PM
Todd,
I am pretty new, so I am just catching up on many of the things going back and forth. I have osteoporosis and borderline high sugar from the prednisone, and they have a rough time treating me, too. I had to be hospitalized last fall due to the extreme vomiting, and they finally put me on Reglan. It makes your stomach empty quicker, so there is less chance to vomit. I still "urp" a lot (you will understand that, I'm sure), but not the huge emesis as before.
Not only did I have trouble with all of those meds, plus the osteo meds, but I also couldn't take hardly any narcotics. Everything made me so sick, I would rather just curl up in bed and hurt. Talk about no quality of life! After the start of Reglan, I have been able to somewhat tolerate a few more things. There are lots of side effects with Reglan, too, so they don't rush to put people on it; but when you are out of your mind miserable, hey, ya gotta do something!
For stress, since I get sick on essentially all the drugs, I started an "under the tongue" pill called Risperdal. It dissolves under the tongue and helps so much with stress relief! Very little gets to the stomach to bother you.
Hope you are able to find some workable solutions, 'cause you are needed more than you know! Those children who don't seem to appreciate you now, would feel your loss profoundly, so don't let go too quickly.
I just love the saying, "Life is not about moments that make us breathless but about the ones that take our breath away..."

Susan

browneyedgirl53
01-20-2008, 04:08 PM
HI PIF,

I'm joining this conversation way late, but I wanted to let you know that I have lupus nephritis, and I'm near stage 4 in the shut down process...I have had to discontinue salt and drink tons and tons of water.

About Cellcept, I really believe it helped save my life when I was too sick to hold my head up or move out of bed; it seems to be the easiest to tolerate and is quite powerful without the side effects of methyltrexate. I would encourage you to ask your doctor about it....I had pretty high doses and was able to keep it down without the stomach problems of everything else.

I think we ALL serve such a mighty and powerful safety net for one another on this website. Saysusie had a dream bigger than I think she could have ever imagined when she started this. You have hearts and prayers holding you every minute of every day, you are not alone nor will we ever leave you alone. As human beings, our limits are tested with these trials and at times it feels like "I'm too tired in my soul to keep on keeping on", I know I have felt like that. Some days you just want to go to sleep and not wake up with pain.

Preparing for our departure from this life is difficult to think about much less to work out; but having worked in the medical field for over 20 years - and losing two brothers suddenly; I decided that I want to make it as uncomplicated as possible for my loved ones...they all know my preferences and that I want a "celebration of my life" occassion, I hate funerals...they're too sad and it's not my style. I want everyone to bring their memories and stories of our time together and be joyful of the opportunities that we had together. I'm sure this might freak some people out, but when I went to my first "celebration of life" party - it turned my whole thinking inside out and said to myself "what a great idea"...and it was truly an enjoyable day and we all discovered that we had much more in common with one another because of the love we shared that person. Does that make sense?

My prayer for you is that you will have the strength to endure...it need not be graceful; I pray that when you have those "small bursts" of pain free moments that you soak them up like a dry sponge and breathe deep the fresh air of love. You have so much to give to your family, and let them love you through this...we all need an anchor in our lives that makes us stay our course...and you have family and friends that are willing and I'm sure waiting for you to call and I hope you will....and let them be a blessing to you in your time of need. After all, it's what shows us how committed those relationships really are. Love is about giving and I'm sure you've done your share....now let others give to you the help and nurturing you need.

Cry when you need to, sleep when you want to, dream everyday...and remember how precious you are to so many in your life. You have added so much to our by sharing yourself with us. We honor you and hold you in our thoughts and prayers.

God Bless You, Todd.

Much love,
Browneyedgirl