View Full Version : Prednisone - love it and need advice. Help please.

04-21-2007, 11:23 PM

I have been on low dosage of prednisone for 3 years for another condition - sluggish adrenals. Anway, newly diagnosed SLE and Kidney troubles (neph )? I'm 'mild' from spinal tap and kidney tests with protein etc.

I declined 60mg of Prednisone from a bad experience 15 years ago - made me angry. Agreed to 30mg and then lowering.

To my SURPRISE I felt like a new person on 30mg of Prednisone. First time I sleep through the night in month's, no pain, less cranky and my whole family was really happy for me ( I'm a 40yr. male ).

Now I'm down to 15mg - back to peeing all night, can't drive - too tired and stiff among all the usual symptoms - I do have a 'trumping' disease of MSA - but that's too much to go into here. Life is really complicated health wise.

I need help understanding 'why' if Prednisone is helping me SO much, why does my doc want to lower my dose? I know all the side effects - most I don't have - I haven't ever gained a ton of weight becauase all the other health issues caused me anorexia - so I'm at my ideal weight according to the 'charts' - 170lbs. at 5 10. Worst thing is maybe stomach problems ( take nexium ) and lack of sleep ---but is chronic problem for me before Lupus.

Anyway, I'm new to the site and have read some on Prednisone and people seem to want off as soon as possible and I do not want off this medication at all - nothing has given me even close to a glimpse at having a quality of life that was this good.

I'm very torn over this and how hard to push my doc -- my other disease is terminal, which is a factor - yet the doc's don't want me getting a bunch of prednisone induced conditions b/c I could die from one of the them I suppose - more pass from infection - so to the extent exposes one to illness then I understand this concern.

However, I feel like I'm some drug junky by 'wanting' to stay on the higher dose? Am I? What do others do. It always seem like medication that works is seen as bad ' ie. Xanax things like that.

What other meds would anyone recommend?

I would need something to stop the peeing situation, pain, sleep, erectile dysfunction and fatigue.....Doesn't make sense to me go on all these other med's vs. staying on higher dose of prednisone -- I know the doc won't take me off prednisone because I cannot function at all on the lower dose- I use a walker to walk now - up from a wheelchair and I'm trying to keep out of that.

I have found no pain or anti-inflammotory med that doesn't make me sick to my stomach and not able to eat- except Toradol I think it is in the ER when I go there....cannot do Provigil -- doesn't do much but make my heart beat really weird so I cannot take....ED - again heart thing - no one will give me Viagra or anything....Sleep - ambien is fine - but I have a hangover, but it works ok.....I just don't want to get stuck on another med...and be hungover half the day...

I'm open to other med's - at least trying them, I just don't know what these would be?

Finally - sorry for the novel - I just am FRUSTRATED because I cannot believe I felt human for a week or so on the Prednisone and am back to feeling terrible again - and don't know if I'm being a 'bad patient' by liking this medication when the doc's aren't big on the higher dose and it seems like there is alot of folks wanting off the medication.

I just don't know what to do....Anyone who can offer any advice, experience feedback would be greatly appreciated...I don't know where else to go -- this seems like a great forum so I am hoping to get some advice on this and of course all the other stuff - I have doc appt this upcoming week and need to get this issue ironed out - I want a decent quality of life is the bottom line - i don't expect a miracle, just some relief would be great.....

Thanks much....

04-22-2007, 03:58 AM
I'm guessing you will get much more sage advice from some of our other forum experts. But let me say that I would count myself among those who find prednisone to be a miracle drug. It made all the difference in the treatment of my lupus symptoms. That being said, I now was OFF the drug! It DOES have long term side affects that can be damanging and even fatal (in extreme cases) so docs are understandably anxious about keeping patients on it longer than need be. But quality of life counts for a lot in my book. If your symptoms abate taking higher doses, and nothing else seems to make that kind of difference for you, then you need to be a vocal patient - be strong and be clear with your doctors. Talk to a pharmacist that you trust and get all of the facts about prednisone and how it may intereact with anything else you're taking. Sometimes a pharamacist will provde you great information that you can take back to your doctor. I think you'll find many of us on this forum are anxious to get off prednisone because of the common side affects (weight gain, insomnia, susceptibiliity to infection, etc.) My father in law died from long term steroid dependance (I'm talking 20 years or more of use here...) but without the drug, he would've had a painful existence. So who's to argue with that? You sound rationale and clear thinking to me - and you should have some say in your treatment plan. Go for it.


04-22-2007, 08:29 AM
I realize you're in a more complicated situation because of the MSA, obviously your doctors want to prolong your life as long as possible. Unfortunately, some of the most dangerous side effects of prednisone are the ones you don't see in your physical appearance - loss of bone density and mass, early onset cardiovascular disease, decreased resistance to infection, increased risk of blood clots, slow wound healing times. Where this might be a real problem is if your coordination problems cause you to fall or get injured, if you've had any loss of bone density from the prednisone, you could suffer a major injury. So this may be part of your doctors' concern. That being said - there are ways to manage or minimize the side effects of the prednisone. And if it makes a major difference in the quality of your life, then I think by all means you should push to stay on the dosage that makes a difference for you. Clearly your doctors have been upfront with you about the long term prognosis of MSA. I think if you are frank with them about how much the prednisone helps, explain to them that you understand the risks and feel the benefits are worth it, and that you are making an informed decision about your treatment - that they will be willing to keep you on the higher dose. Just be very proactive in managing the side effects, especially the potential bone loss. Calcium supplements and vitamin D will help. A heart healthy diet will help reduce the cardiovascular impact. I would also recommend a book called "Coping with Prednisone" that has other suggestions for managing the potential side effects.

Good luck in discussing this situation with your doctor. Please don't feel like you're a "drug junkie" - prednisone can make a huge difference in many people's symptoms - who wouldn't want to feel halfway normal again! You don't want the drug to get high, you need it to feel human - that's a big difference.

04-22-2007, 02:01 PM
I am very grateful to both of your posts. I know we're all sick and feel terrible now or at some point so I appreciate your time.

All comments made me feel better. I am completely down again today - can't move actually. For me, besides fatigue my heart rate is around 13-150 in a recliner - which isn't normal - and I have the sweats - which is when the lupus is acting up.

My wife is really upset about all this and I think is going to go to the doc with me because she's tired of seeing me suffer - I was supposed to go to family barbeque but couldn't go.

Thanks for the info and the book info on Prednisone. I think I'm going to 'push on' - if I cannot get out of the recliner what is the point of being on a low dose of the medication - that is no quality of life and I have 2 boys that get really upset seeing me sick - I have a soon to be graduated teen and a 9 year old and my being sick has put the oldest on anti-depressant - is causing him to want to stay with me and not go to college - granted has alot to do with MSA - although I'm naturally trying to push him to go and live life - we're all going to die at some point - I just want as many 'good' days as I can get.

I feel much less like a drug addict by liking prednisone - which I never thought i would say - I refused the higher dose because the last time - many years ago it had a different effect on me -- now its calming and doesn't make me angry -- think its the different circumstances....

Anyway, I appreciate and was looking forward to feedback, help and any connection. So thank you so much.

I look forward to becoming a more active member as I am new to the forum and to Lupus. I'm still trying to understand the whole kidney thing - I should learn more about it. All I know is more prednisone less urine problems - sleep through the night and less urgency to go - don't have to go all the time...not sure what others with the kidney type are experiencing...oh, other than sex drive -- but I'm super hormanally challenged! For being a guy -- a bit tough - in the sense that I have these conditions that went undiagnosed because I'm a guy -- I'm Hypothyroid as well and have low testosterone ( its called something else I can't remember ) and now Lupus with kidney - smith antibodies -- apparently another more women get it and more ethnic - yet I have this...That part makes me mad sometimes- though now they are testing me for everything in the beginning my numbers were through the roof because even in the ER the didn't test me for 'women's' conditions as they called it -- its a long story but it put me in the hospital before I got diagnosed even with hypothyroid in 1995....

Anyway, I don't mean to ramble....Take care everyone and I look forward to anyone who responds and I think everyone here is an expert in a different way and as I mentioned anyone who takes the time to care and to respond matters to me, I appreciate it as it takes me hours to respond sometimes because of typing and I understand that others here are sick and it might not be easy to respond so I sincerely appreciate time.

Take care...

04-24-2007, 05:07 PM
I am a 25 yr. male, w/after transplant. I too was on Prednisone, Medrol, Prednisolone, and Solumedrol for seven years. I am now off of them, T/G. The after affects of steroids is brutal. I now have 'infarcts', which are basically dead bones. My teeth are falling out, and my ankle and knee have systs in them, and it's painful. Also called avascular necrosis. Talk to your doc man, before you like them too much, please.

04-24-2007, 09:09 PM
Brian...I appreciate your warning. Believe me I am concerned. I have been having a horrible week with heart and blood pressure problems. I don't think its due to going down on prednisone, but my other health condition.

Anyway, I can type now and hear your concern. Its ironic you mention the teeth issue - long before prednisone, but when I got sick all my teeth decalcified -- had tons of cavities and I wanted to have them all pulled though I have spends thousands on having a perfect smile - all was washed away when I got sick. At this point having them out is now more of a risk factor that isn't on the table - urggg...I should have done it while I had better health.

I feel so bad for you and what you are going through, a challenge to say the least.

Since I'm dying I can appreciate much of what you wrote. I live with pain everyday and refuse pain medication because pain medication makes me feel drunk and I have kids and want to spend non-drunk time with them - so far so good. I am considering the whole prednisone thing and how much I will take it and for how long - I am re-thinking things.

The important thing for me is quality of life - my bones aren't as bad as our by any means - but I realize it could happen. For me I have serious heart and blood pressure issues from the other condition and now compounded by Lupus.

The hard thing is feeling like dying and not being able to get out of a chair which is where I'm at now. If not prednisone something else has to be offered - I need to have as much quality time with my family as I can - to leave them with good and positive memories -- even if it means prednisone creates havoc in my body - so far it hasn't put am aware it can.

If there is other medication I'm all ears if you or anyone has a suggestion. I'd like to be able to not go to the bathroom all night long, sleep and being without pain would be nice...prednisone gave me a week or so of this and it was like being re-born or something.

Its very hard for me as I've had a miserable lupus week and all my other issues that have really gotten to me physically and some emotionally.

I will talk to the doc's - I intend on being very aggressive - I cannot take feeling so dead before I need to feel that way. I think they will put me on nitro and if they can't offer an alternative to Prednisone then there is going to be a problem.

I don't know how long I have left - I am year 6 of an average 7 year or so life span condition - though I am young and the younger folks tend to live longer so I am hopeful - however I am very tired of fighting illness everyday and if I didn't have a younger child I don't know that I would fight so hard - I wouldn't care about prednisone...However I am fighting for my family and trying to stay around as long as I can...it is what makes my situation different than others perhaps -- in the end the quality of life trumps side effects for me....though I would be a liar if I wasn't worried about all the side effects of Prednisone...It concerns me... for many reasons - I would certainly become anorexic again among many other things...I wish there was a safer drug - I can't seem to find one...

Thanks for the note and for all the reading I've done on the forum to educate myself....best wishes and I do hope you feel better....take care.....tc...

04-25-2007, 05:07 AM
I always made jokes about my illness... that I was a 25 year-old w/an 80 yr. old's body. That helped me through 'dead' times. Or that my pills were my dessert after dinner. Or when I was feeling ok, I'd say I feel more normal today. What I'm trying to say is, you should find a way to cope w/ur illness. Something to always keep your mind busy.
This site here should help you out perty good w/unknown feelings, and ways to deal w/'em. Just remember: after every dark night is a bright day. U gotta keep your head up.

04-25-2007, 08:31 AM
Payitforward, I think you are in a unique situation from most of the rest of us, while we all know lupus can kill us, and some of us have friends or relatives who have died from lupus, you are living with a condition that you know will eventually kill you. I wish I could be tactful and talk around your situation, but I feel like maybe it would help you more to have a forum where you can be 100% honest about what you are facing. You know what you are dealing with, and you live that pain everyday - in this situation, you are really the only one you can decide what is best for you. I hope that your doctors understand and respect your wish to have the best quality of life you can.

I'm a little hesitant about suggesting this, but if you live in a medical marijuana state, that is something that might help with your anorexia and nausea without some of the potential side effects or prednisone. There is also a synthetic version of marijuana, called Marisol, which might be an alternative if you don't live in a medical marijuana state. It might also help your pain.

As far as the situation with having to go to the bathroom all night long, do your doctors think this is due to a prostate problem, or something neurogenic related to the MSA? If the problem is with the bladder itself, then an antispasmodic to reduce bladder contractions might be helpful. If the problem is related to the prostate, then medication to shrink or reduce the prostate might be an option. This is a situation where a consultation with a urologist might be helpful.

There is an amino acid supplement called D-LPA which can be helpful in treating chronic pain without the grogginess and other side effects of narcotic pain medications. It works by encouraging the brain's own production of endorphins. So this might be an option to ask your doctor about. If you have access to an accupuncture specialist, this is another non-narcotic treatment which might help with your pain. If you have not already done so, I would really encourage you to be evaluated by a pain management specialist or a pain clinic. There are a lot of treatment options that might reduce your pain without putting you into a fog. Some of the opiod pain medicines are available in a patch form that delivers a tiny dose of the medication continuously, so you are still able to function normally. If there is a particular area that is causing pain, then a nerve block might also be an option. Biofeedback, hypnosis, and other complementary therapies are also used by many pain management specialists. Pain management is a very specialized area and most doctors don't have a lot of background in dealing with chronic pain. So a pain management specialist might be able to offer more options that would improve your pain.

Obviously, we don't know anything about MSA, but please don't feel like lupus is the only thing you can discuss in this forum. As you may see from some of the posts, a lot of us have other conditions besides lupus, and we all talk about them, even if just to vent. So please feel free to talk about any of your concerns. Sometimes there are things we don't want to burden our families with, but really need to talk about. I think most of us have been there at some point.

04-25-2007, 08:06 PM

Thanks for such a well thought out reply with sincerity and honesty. I really appreciated it and have spent time re-reading it to digest it.

Most of my doctor's are pretty understanding and willing to experiment with different treatments that would not do with a regular patient, which is nice. LOL - can get complicated in my own family because just for regular flu and cold stuff I get very aggressive treatment and they don't, so that sometimes creates some frustration.

I'm not sure if I live in a marijuana state or not to be honest. I might use this as a very last resort. Not because I don't think it might help - it might. Unfortunately I have some really bad memories regarding the use of this drug from my past. I don't think I could take all the 'trigger's' that would be created from using it. It would be hard. However, I appreciate the suggestion and maybe it might be an option one day. I wouldn't totally exclude anything as I'm not sure how I will pass - most with my condition pass from an infection like pneumonia or something. However my heart has been a mess so perhaps that is the way I will end up going.

Bathroom is related to MSA - many folks have to cathertize themselves - something I am not looking forward to that is for sure...sigh its not a pretty disease by any stretch of the imagination. Doesn't mean your points aren't valid - since MSA is a Multiple System Atrophy disease its possible to have prostrate problems. I think what is a bit confusing for the doc's is that the medication for Lupus - in this case prednisone provided relief - which is confusing because I have all this Neurological stuff going on and then the kidney thing - I think I get my protein checked on Friday so we'll see where I'm at. I think that will tell alot. You are correct I need to see a urologist...sigh...I have more specialist than is thinkable..it can get a bit crazy to manage and overwhelming. However thanks for the reminder that I need to get there. LOL just haven't been in a hurry.....

Its bad enough I have a gastroentinologist - haven't been examined like that in decades when I first saw that guy - and the next step is for me to have botex in the anal area. Naturally I looked at the guy like it had been smoking crack - but he said its a common procedure and promised it wouldn't hurt too bad....I said I'll pass for now and use laxatives until things get worse...

Thanks for the amino acid information - I'm going to read up on this - I'm all about natural anything - and especially when it comes to pain management as I just cannot tolerate those medicaitons - everyone one of them makes me nauseated, so then I need another drug to take that away and by that time I'm a lump on the couch.

I have thought often about accupuncture...not sure how I would afford it as I don't think medicare covers it...but I've been to a chiropracter - which I normally don't believe in - but have gone with severe back pain. The question or problem here is I would get sick as a dog -- apparently the twisting and what not releases all kinds of chemicals and hiding bacteria into the body. My personal concern that I would need to learn about is whether or not accupuncture releases 'stuff' into the body. I don't know - but if medicare covers I would definately look into it for sure..

Pain - hmmm...a complicated issue. I have the perph nerve pain - hands and feet - and I have arthritis in my spine - in a T pattern - they call this the coathanger effect for MSA. Other than I have the arthritis in the spine which causes me all kinds of stuff. However in general, my neck is a sore spot...my legs become enflamed - joints is a given - my hands cripple up -- curl up I guess is the best way to describe -- the pain wakes me everyday..along with the bathroom thing - which is why I never get a real nights sleep...I awake at different times from these 2 areas...however the pain is usually in the morning...or its worse then I should say....lower back pain is also an issue...Anyway, I think the covers the main parts - I don't mean to complain...there are many others who have it worse than me...

I appreciate your kind words about me talking freely here -- very thougtful and kind of you. I will certainly post more and vent as needed - LOL...Its hard as you know -- it does seem like when your chronically ill you become a magnet for other conditions - be it the disease a person has or the medication - one can be sure that something else might be heading their direction. Nothing surprises me at this point.

Thanks again so much for your post which I appreciated so much. I know I've said it before - but for me -- I've spent 2 hours easy reading and then typing a response - typing is hard for me because of my hand situation ( I'm going to get a voice typing software thing yet ) - just being cheap! However, I just wanted you to know that I am sincere in my gratitude. Since its so difficult for me to respond sometimes I try to ensure that I'm appreciatative of others time as it could be just as hard for you or someone else to type or are facing other challenges...

Thanks again...TC

04-26-2007, 04:28 PM
I can understand the frustration in dealing with so many "ists" - medical care is so specialized now that you need a different doctor to treat everything. I go to doctors in three different states, so it can be a little difficult to explain to an employer when you need two days off just for a doctor's appointment. In case it makes you feel more comfortable talking about certain things, I'm in a wheelchair due to nerve damage to my spine, and a couple of other members are also in wheelchairs, including a guy named Brent (screen name Ganesha) who's a paraplegic. So we totally "get" the fact that "normal" bodily functions aren't always normal for us. So please don't feel embarrassed when issues like that come up - we've been there, with all the frustration and fear. And I'm sure if you want to locate a post from Brent and send him a private message, he would be happy to talk with you about things from the male point of view.

There are some options other than narcotic pain meds to help with neuropathy pain. Neurontin (gabapentin), an antiseizure medication, can also be very helpful for neuropathy pain. An antidepressant called cymbalta is also used in treating neuropathy. I have neuropathy wirh spasms, so one of the things my neurologist prescribes is a topical cream that combines elavil for the nerve pain and baclofen for the spasms. Since it's used directly on the skin, it avoids a lot of the side effects of the oral meds. I also take a vitamin b complex and extra magnesium to help with the neuropathic pain. There is also an over the counter medication called Zostrix-HP, which contains capsacin. With regular use, it can be very effective in helping neuropathy pain in the feet. It can be very irritating to the skin, so you have to be very careful not to get it near the eyes, and to only use a small amount at first.

I don't think that medicare covers accupuncture yet, although a bill is pending in Congress to allow it. But many practioners are willing to make financial arrangements for patients.

Has your doctor arranged for you to have an adjustable hospital bed, which is covered by medicare? I ask because sometimes with back pain and neuropathy, being able to adjust your position to take pressure off your back and legs can be helpful in relieving pain. I honestly don't think I could sleep in a totally flat bed anymore.

I know you are facing some very difficult times - please know that all of us are here to help and support you in any way we can.

04-26-2007, 06:50 PM
I don't have any suggestions or advice to give here, but rather a welcome to our site and a great admiration for your courage and tenacity in dealing with your Lupus and other illnesses.

Please know I am thinking of you.

04-26-2007, 11:20 PM

I go to the doc tomorrow so I think I will find out a good amount of information - other than the stuff I can't because I have to wait for test results. Jeez - can I just say that it takes a long time to type a note - need to add Alzheimer's to my list I think or senility :)

Brian - I'm actually really good on the attitude side. I'm highly motivated by my 9 year old son, which may be cancelled about by soon to be 18 year old who has been digging my grave for the last few months! :)

They seriously need to devlope a pill to deal with teenagers..or maybe they have and its illegal - :).....Anyway, for the most part I'm pretty good on the coping side - I have a good relationship with God, though I wouldn't say I'm a Bible thumper ( no offense to anyone ) - but I find it very helpful to stay grounded. I'm actually very ok talking about dying and that kind of thing which my family is not - but it took awhile and whole lot of tears.

No one knows when their last day is going to be - heck I could get killed in a car accident tomorrow...so best to live each day as if its the last in my book and make sure those that you love know it because many people pass suddenly and are not given the opportunity to have closure or help provide closure with those they love and love them.

Hope this helps - I do think the site is great and am actually shocked at the number of folks responding - its a good feeling to know there are people out there that care and can understand.

Lupus is new to me and it is kicking my butt all over the place...I could probably type a list of at least 20 different 'complaints' of how I can't function or something that interferes with my life...that part is tiring...fatigue and pain are some of the worst for me...but there are many - others due to my other stuff though..

I do wonder what the doc will say about the prednisone - if not that, then what? Something needs to put the Lupus in remission and I'm not that familiar at all with what drugs are used to fight it off -- and stop it from attacking my kidney's?

Honestly, I don't even know if it can move or at the same time attack my heart or other organs? I've been having lots of heart issues this week and am wondering if 'maybe' Lupus has something to do with this? I don't know...

Missy - thanks for the note...very kind of you to reach out....I appreciate it and if there is anything I can do for you just let me know. Since I can't do very much - I do like to help people - when able I'm on the computer alot - not a huge TV watcher so I read alot or LOL look at cars because we need a new one..so I research stuff to death!

Mary - I'm so sorry to hear your in a wheelchair. I was lucky to rehab my way out of that for awhile, but I'll be joining you again soon...I don't like it so much - bought all the cushions for the back and butt and still that thing was so uncomfortable - I hope yours is better -- I needed the lazy boy wheelchair - then we'd be talking!

Do you still work? I can't imagine what that would be like - I haven't worked in about 3-4 years now...spending time with family has been good...doc's in other states - been there too...it is hard and I can't imagine having to do that while working - though they should be understanding for sure...not like your getting any benefit from being ill.

I've heard of the medication you mention - but need to some research. They have tried to give me some med's before for the pain - but its so complicated because of the cocktail I'm on already and it seems many impact the blood pressure which is a huge problem for me.

I did get a magnesium, potassium calcium supplement to counter act prednisone...though honestly i've had 2 bone density tests and I'm fine...did the baseline and then follow up after being on prednisone and no troubles there..

I do have some blood sugar problems - however it runs in my family my aunt and grandfather both died from diabetes - my aunt about 6 month's ago in her 60's and my grandfather 2 years prior in his 70's.

In my mind I picture that the action prednisone has on my body is being very thoroughly used up and that is why I don't have all the complications many do -- because normally I am the king of side effects and paradoxical effects for that matter -- lol, besides the fact that I'm allergic to Florinef - which I cannot live without literally....makes your eyes want to cross I know...LOL :)

Everyone seems very supportive here and there is much for me to learn. I have alot to read which I look forward too. Thanks for the info on the other folks maybe I will try and contact them.

I have to figure out the PM thing - no idea how it works -- think maybe it goes to my email - not sure.. I don't have any messenger or anything cause I would get virus' and stuff from it -- and I don't allow my teenager on any instant message program so I don't have it installed... I know I'm a parent from the 60's - can't help it....being in IT and then not working I've fixed many teenager's pc's at the request of their parents-- probably who regretted that after I showed them all their messenger conversations or websites they were going too...for me its a good thing because my kids are scared to death to do anything dumb on the pc because they know i can find it -- if you type it i can read it - for that matter the other person too - think it helps keep them in line - some anyway...

Thanks for being so open...and providing some relaxing confidence about posting about all the crummy personal type stuff...guess I won't worry about talking about bowel movement troubles here!

Anyway, I will check into the Neuro stuff - sounds interesting...once this whole heart and bp thing for me get under control I can do more research...just tryiing to stay afloat at the moment...I can completely relate to those that say they can't even get out of the chair....its so me....and though its not great that others are afflicted this way, it is good to not be or feel alone.

Thanks again for all the great feedback. I'm going to the doc armed with some information and we'll see how it goes from there... take care all....


04-27-2007, 06:15 AM
Payitforward, I just wanted to tell you how much I admire your attitude. You've got so much to deal with, but you seem to be handling it all with a lot of grace (not always a term applied to men, but it seems to fit here.) I hope this forum can act as a place that you can release what you're feeling, escape a little, vent a lot, and look for support. We're all in different places, medically and in lots of other ways, too. But, we all have one thing in common: illness has entered our lives and changed them forever. Your experience IS different, as Marycain points out. You know the eventual outcome of your illness, while most of us don't know where this disease will take us. Your strength in the face of that is really inspiring.

I love your comments about your teenaged son. I have two sons (all grown up now, and one with a child of his own) but I remember sooooo well the teenage years. (Sometimes I wish I could forget them. :lol: ) There's something pretty scary about the transformation from sweet, inquisitive, fun loving little boy to sulking, moody, disgruntled teenaged kid! Seems most survive it, though, so there's hope. (And I do LOVE watching my oldest son deal with his daughter's moods, as she gets older. There is justice! :wink:

What did you do in IT? My husband is just retiring from his job as CIO of a small university. We're both kind of techno-geeky so I'm always interested in that kind of thing. Being homebound, you must enjoy the boundless world of the Internet. I think it may be one of the best things to happen to those who have limited mobility and who have to spend a lot of time alone. It's not a substitute for friends and family (sounds like you have than covered, too!) but it's a nice diversion.

I hope your docs find the right 'cocktail' for you to deal with the Lupus. You have plenty of other issues with MSA, and it would be nice if they can get a handle on the Lupus symptoms quickly. It's not an easy disease to manage, even by itself - and many have multiple diagnoses. Marycain has a wealth of information, and in reading her posts I see that she's shared some great ideas. I hope they're going to make a difference for you.

Stay in touch. Many of us are checking posts often, and you'll always get a reply or two (or three...or four...or) I'm send good thoughts your way --- wishing for strength and peace for you, Payitforward! You're an added blessing to our group!


05-01-2007, 06:53 AM
Hi. Thanks for such a nice note! I am so sorry its taken so long for me to get back.

On Friday the doc put me on 60mg of prednisone a day - which is good I guess. Its brought my heart rate down to normal for the first time in awhile. Then I am starting Imuran today - and we went over all the possible side effects and I have to say I'm nervous - I hope I don't throw up, I hate that. I not usually nervous about medication, but this one I am - we talked about some other one - but she said it was strong and I said lets start with 'chemo -lite' -- so she said Imuran was pretty lite - because I'm a guy and a 'wuss' when it comes to throwing up. I don't make a good patient that way - I sweat and feel like I'm gonna die when I get sick -- I think it has to do with my blood pressure because it goes whacky - usually very low.....so if anyone has any experience with Imuran please share...little nervous here..

Ah my son - the parental killer....I swear the child walks around with a shovel in his hand...you devote your life to your child, your hopes, your dreams and then slam - the alien arrives and your left scratching your head wondering how this happening.

The same day I got my new cocktail - my son had ditched school during the week, then on Friday he was supposed to go to the doctor - which he blew off for the 5th time - for his girlfriend - costing me 150.00 - which he knew was going to be the place he just didn't care. So I was really 'hot' and let him have it - so he left - called in sick to work -- didn't tell us and was gone into the evening - just before 10:00 --- he's not allowed to drive anymore so he hung out with his girlfriend and one my friends called and invited us to the movies and I told them we couldn't go because my wife had to pick up my son -- and they laughed and said he was at the movies....finally my wife had had enougH ( usually its I'm to hard on the kid ) -- but she really laid into him and then we had a long discusion about his decision and where they were taking him for his future.

I took his cell phone away permanently - giving it to a friend who brings my other son from school...they have 5 kids and lord knows they could use the cell phone and they'll appreciate it... So because of a GIRL and his DECISIONS he's lost his car priviledges and his cell phone....I cannot believe he so wrapped up in a 16 year old no less...but sigh he is -- she won't even call my house after friday - so her cell number comes up and a guy asks for my son -- so he was out of school yesterday sick and they were calling non-stop - all day -- then when my son awoke he wanted to go see her play soccer - LOL, I told him if he couldn't go to school he couldn't go to a game..and if he had free time and felt good he could at least pick up after himself around the house...unfortunatley he is going to have to marry someone who doesn't mind catering after his lazy butt. Though he'll do all the 'manly' work inside and outside the house - but nothing else -- and even then he needs a big shove....lol, anyway, another topic I think. It could be worse.....though I've threatened to send him to Canada if he gets this girl pregnant.... :)

Hmm...I did alot in IT - I ended up as an Executive - but I started more toward the bottom with Project Management -very minimal programming - some file-aid, sar, delphi ( hated it ), cognos, mainframe (love), java ( hate)....I managed around 200 people so I had my hands in alot of stuff....I'm completly old school - I love the mainframe -- its stable and is more reliable -- the darn Java GUI's are so problematic and everyone wants them to do everything but turn their car on! Nervermind the entire methodology which makes my head hit the table! LOL - what is your background.....If you want to send me a message if you think it will bore everyone that is fine - I have no idea yet how to do that- my mind has been so busy and tired....

I do love all the posts and hope to talk to you and others - I enjoy the support and interesting comments and discussion.

At the moment I'm a chicken about the imuran...I have such a weird body chemistry - sometimes I have the paradoxical effect of the medication in general nevermind the side effecs -- so its just a who knows.....

Anyway, thanks so much for your comments and feedback...I forget if you typed it in - but is it ok to ask what medications are working for other people?

Thanks and take care


05-02-2007, 03:56 AM
Hi! Actually, I'm on Imuran as well. My worst experience was that I got shingles almost immediately after going on the stuff. NOT a fun experience. I still have scars from it. However, you'll be happy to know I did NOT throw up. :lol: I'm a 'wuss' about that as well - I can't stand the feeling. (Can anyone?!) I have had some liver function test abnormalities with Imuran, so my doc has had to reduce the dose. So far, it still seems to be working, but she checks me once a month. I'm tapering prednisone (down to 12.5 mg now) and am on Colchicine (to combat recurrent pericarditis.) I'm also on Plaquenil for the general fatigue and soreness; am on Neurontin for a stubborn neuropathy, as well as a lidocain patch to work directly on the nerve pain. Let's see...anything else? I also have some 'scrips the doc gave me for my Raynaud's and Sjogren's symptoms, but I'm not taking them currently - just had enough meds and those symptoms aren't so bad right now (I could be sorry later - but that's the risk you take I guess! :roll: ) I have other meds not directly related to the lupus and I take some supplements. So, 21 pills a day, plus some eye drops. Yuk....sounds dreadful when I put it all down. Bet you've got quite a list, too.

My interest in technology happened by osmosis I think. (Living in close proximity to my husband all these years.) Sounds like you've had a lot of responsibility. I'm just a hobbiest and love the bells and whistles of new technology. I work for a non-profit. I was the program director for a long, long time. But when I got sick I couldn't do the 50 or 60 hours a week and the travel anymore, so they let me become a 'special project coordinator' and work 24 hours a week. Sometimes from home, God bless the Internet! I write grants, coordinate quality assurance...all that 'right brain' stuff. My husband is very 'left brain' (math, computer technology...and even music) so we're a good balance.

We went through a similar rough patch with our oldest son. I'd like to tell you that he grew out of it, but the truth is he's 35 years old and is still struggling in many ways. Divorced, 'underemployed' and has a low self esteem problem that just keeps tripping him up. But, he's a great guy in a lot of ways. You can raise 'em, but you can't guarantee the outcome! To me, it sounds like you and your wife are doing all the right stuff. It's gotta' be tough to deal with a headstrong kid when you need to spend so much energy on your own well-being. Stress is no friend to those with lupus, so DO try to find a way to keep your stress level down (easier said than done, right?) It will only aggrevate your symptoms.

Glad you're able to stay in touch. I'll keep you and your family in my prayers. Take care.


05-02-2007, 10:05 AM

Wow - what a note. I'm running for the hills as we speak! Yeah I carry around my own bag, but I see you have yours as well. That is alot of medication. I've heard of folks taking many of those med's before - so thanks for that - its helpful.

I'm hoping that Imuran backs this Lupus jazz off my flipping kidney's but its too early. I regretfully have to say that I'm still having problems with my kidney's so I don't know where this is going to go. My heart rate is actually normal on the good side of things - I think I'm having a paradoxical reaction or something to prednisone - because when I was weening off - up went the heart rate -- up on prednisone down goes the heart rate..so this is good.

Imuran - still a mystery..a bit nauseated for sure..no appetite at all and headache -- which aren't huge deals for me all things considered - I'm not throwing up so I can tolerate the other jazz.

I've read somewhere that folks try to use Imuran instead of prednisone...and my doc says she doesn't want me on high doses for the long haul - but I'm wondering what's the big difference - they both have serious side effects...so we'll see where it all ends up to early to say.

OH - what time of day do you take Imuran...I took it in the afternoon as was sick about 4-6 hours later...sorta odd.. I was thinking of taking it before bed though I wonder if I'll be pulling an 'anna nicle smith' and run into some drug interaction thing..sigh - good lord these doc's and all these drugs...i have to make an appt with my internist to have them get all this by the reigns and monitor all this medication.

they also gave my xyrem - which is 'the date rape drug - its some seriously controlled substance that has to be delivered to my house - can't even get it at the pharmacy and you have to go through this little orientation thing...its weird....i'm SUPER nervous about taking this medication...talk about knocking a person out...i'm not sure if i will even take it -- i may try it once but if it causes anything weird - i'm done....i tried provigal for fatigue and that just caused me heart troubles so i stay off that - but i miss stage 2 of sleep and this drug is what they use...i'd never heard the actual 'real' name before...but its goofy i go instantly to sleep and then have to set alarm for 3 hours and take another dose...seems strange to me....but we'll see....lol, i'm such a chicken lately when it comes to medication....

one of the things i'm trying to avoid is the cocktail your on...we seem to have similar symptoms or problems - i think i could be on pretty much everything your on -- other than the fact that my other condition prevents one or two of them from my memory - can't remember which ones impact blood pressure...but if prednisone or even imuran takes care of the majority then i'll see what i can live with...i would like to talk more specially about each of those meds - but maybe i can search on them and see if there's anything on the forum...

thanks for all the feedback though..very helpful....we're all pill poppers here i see.....i don't know how you work...sometimes and most of the time its all i can do to get out of the chair....and naturally i've been not moving fast enough and have been cut a few times by the door closing to fast wanting to throw me into the house...lol, its possessed...nah, its just needs to be adjusted - think my son would do that - NO. Notices the blood on my feet and all the markings on my feet and legs for that matter..sigh...

speaking of that boy...we'll i appreciate your honest answer....i'm afraid my son may be in the same boat....its a nightmare for sure....not sure what to do about him....i just don't know how all this happened...wasn't what i imagined, what i gave up so much of my life and aspirations for - if I had known i would have went to law school - we had him in college so i didn't go - i wanted to be a good dad and be around my child -- uh, who knew that was going to be so productive! :) Now he's just so spoiled and self centered he makes me crazy - and he seems not to care at all that all the stress from his is not exactly very good for me - but doesn't seem to phase him...still breaks every rule he can...rebellious little ( or big actually ) bugger....

IT is fun in many ways and i think i'm more like you - i definitely get bored with code, though i always did like to troubleshoot it and find the problems - now that i like about coding...but taking the time to write the darn programs...unless they weren't huge...snoring time for me.....

I have to run but its been good talking to you....hope you are feeling well and look forward to hearing from you....curious to know if Imuran made a huge difference in how you feel or what did it do for you??


05-02-2007, 06:35 PM
Hi again. All of these medications have side affects - no doubt. And everyone's body is so different. And lupus is such a 'moving target' there's no telling what it may do next. Not to mention the fact that you have so much else going on. How these meds work for me will be quite different than how they work for you. Imuran seems to be helping me manage my symptoms (or something is working anyway - it's not always easy to know what it is!) The hope is that it will work well enough to allow me to taper down on the steroids. Steroids bad - imuran good (or at least better!) My hope is to get off a lot of these meds in the next year, but I'm just taking it as it comes. I have a good doctor who really listens to me and is willing to research new stuff if she thinks it'll help. I feel lucky. How are your docs? Are you satisfied with your care?

My husband loved the programming aspect of his job, but he really hasn't had a chance to do much of that for a really long time. Management of the shop didn't allow for much of that. He just retired, but he's going to do some consulting now and he's looking forward to the change. (He say's too young to just sit around - that would be OK by me, though...maybe he'd clean the garage!)

Don't write off your son yet - our son went through some really lousy stuff and I spent countless nights crying and walking the floor. I really thought we'd lose him - suicide, car crash, whatever. But, even though he still struggles, he's sooooooo much better. There is hope - there is ALWAYS hope.

Be good to yourself - find a way to relax and let the stress go. Yoga, meditation, a good book, a hot bath...whatever it takes. You've earned it and I'm guessing your body needs it.

Talk soon.