At this point I am feeling very uncomfortable with my Lupus treatment and feel very alone in regards as to what to do. I haven't been having any Lupus treatment over the last few weeks because my body is a train wreck at the moment ( long story )...
I was taking Imuran - which I thought was causing me a bunch of problems - turns out this wasn't the case - apparently it was prednisone and or diabetes ( sigh ).
I'm on 10mg Prednisone -maintenance dose - been on Prednisone for 4 years for other problems.
Here is where I'm at right now:
I am swollen like a puffer fish who's been attacked by jelly fish.
I have gained weight - assuming from high doses of prednisone, so I'm a bit forgiving on this though this has never happened before. Nevermind I don't fit in any of my clothes which ticks me off.
I cannot walk much at all - even with a walker -become even more swollen and so fatigued I cannot stand - basically bed or recliner bound.
I'm so frustrated I could just crawl in a corner and pretend this isn't happening...such a nightmare..
The pulmonologist says Lupus is attacking my lungs and there's nothing he can do - I can try a steroid inhaler, but other than that not much can be done at the moment - though its relatively minor at the moment.
The cardiologist says Lupus is causing the water around my heart and swelling..I've started Coreg for this. I have no idea if this is causing me problems with swelling - however I did try and stop it and my heart rate zoomed back up again.
Neurologist says Lupus is causing many of my problems - ie. Headache etc..more minor stuff. My MSA is getting worse but I can't even deal with it right now - he wanted to put me on different medication because of my inability to walk correctly - gait - whatever - but I can't do it right now. Its all too much for me.
Endocrinologist - diabetes is out of control still..going on 2 month's now...if this was or is caused by Prednisone then its not going away - no one said this to me - no one ever said I'd get diabetes forever - much less insulin dependent from using Prednisone. I always thought once you went lower or off Prednisone the diabetes would go away - apparently not because I'm not getting better in this area.
Rheumotologist - Since I refused to continue Imuran in the hospital and my blood work was a fun game of HIGH and LOW - thought it best to go with something more mild. Plaquenil was prescibed but I've had a nightmare of a problem getting into my eye doctor.
Besides - I have 2 medications that currently impact my eyes and am not so comfortable with Plaquenil. I'll go back on Imuran now that I know it wasn't causing my problems. I hate that medication too - but I have to do something.
SO - Any advice on medication? My kidneys are also impacted but aren't really bad off at the moment - actually seem stable - the shocking thing is the speed in which Lupus attacked my organs - to be honest its sorta freaking me out - its all happened so quick. Heck, I was going to the doctor for Allegra and walked out with Lupus - well sent to ER - but same end result.
I have to be honest, I can't help it. I find myself easy to cry - and I could really get going. I'm sad and frustrated. Each of these specialists concentrates on their area and isn't overly helpful to me - everything is either MSA or Lupus related.
I'm not sure if everyone feels this way or its just me - but I feel like death. If you ask me if I think I'll live through the year I'd say 'no'. Based on how I feel. I'm confined to the recliner - have no energy to do much - and the swelling thing is seriously ticking me off bigtime.
Will the swelling ever go away?
Am I normal - do people suddenly have multiple organ attacks?
My idea is to call the Rheumy and go back on Imuran - only thing I can think of. I am SO depressed over all this - I just cannot put into words. I have so many symptoms its fairly crazy - I don't think I have flairs, I think I'm an ongoing blazing fire - it has yet to settle down - will it?
Oh, and what about IVIG therapy - a long time ago a Neuro talked to me about this with MSA, but I was reading some folks do this for Lupus? I think I'll do just about anything to not feel this way - makes me very worried about my future.
More needs :
Sleep - I don't get much - I did a study and got 18minutes of REM. So they want to sedate me Anna Nicole Smith style with Xyrem - an 800.00 a month drug that must be taken lying down because it works so fast.
Anyway, I can't afford the stuff - and nothing else works good. Even Ambien - makes me groggy the next day - but I think I would have to take mega dose to go to sleep on this or Lunesta - I shock the doc's because I don't fall asleep.
However, Wellbutrin ( anti-depressant ) makes me tired - paradoxical effect - works for awhile and then it stops so I stop taking it - however since I'm depressed at the moment I figured it can't hurt to get the bonus of feeling a bit better - it actually makes me a bit cranky from what I hear from my wife - but in general I feel a bit more mellow - nothing major - biggest benefit by far is that it puts me to sleep.
Feet - Uh, maybe its diabetes ....tingling and cramps...cramps are very painful - not sure what this is about...but I don't like to take pain med -- everything makes me sick to my stomach - but doc gave me tramadol or something - I'll try it but don't have high hopes...I usually just take my migraine medicine for pain...
Hands - stiff - stuck - in the am...wakes me up....but its ok if Imuran will make it stop.
Will Imuran help?
I'm sorry this is long - I tried to be shorter as I know I have posted some long posts. I just don't know where to turn or what to do. My Neurologist looked at me like I was crazy when he asked if I was treating the Lupus and I said no- other then prednisone which I've been on anyway for years which he knows. I want to do something just not sure what.
I don't see alot of people talking about how they feel emotionally - but I'm sure there is plenty - I better not be alone! I just need some guidence, feedback etc. Even posting I still feel somewhat alone because I don't know anyone with Lupus or as severe as I have it - though there are much more severe cases for sure -- either way its just 'me' and this site - I think I need to be adopted! I have an MSA Mom who protects me and gives me lots of info and support LOL - So what if I'm 40 - can never have to much support Besides I haven't spoken to my parents in years - they don't even know I'm sick and won't which is fine. However, it would be nice to have that someone to tell you everything is going to be fine - even if its not! Denial at this point is not such a bad thing.....
Thanks to anyone who reads and responds. I appreciate it - your time and thoughts - I know I'm complicated...probably gonna give me some medication for that one of these days..! Take care to everyone and hope things are better for others.....PIF....