View Full Version : Treatment and symptoms. What do I do? Need advice please.

06-25-2007, 09:37 PM

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....

06-26-2007, 09:01 AM
Hello PIF :lol:
First, let me apologize for not being able to give you the answers that you want to hear. We cannot tell you what medications you should be taking. The best that we can do is to let you know what the medications might be for and what their side effects could be.
The weight gain and puffy face could very well be a side effect of the prednisone. Have you been tested for antiphospholipid syndrome? Patients with SLE and antiphospholipid syndrome are prone to lower limb edema (swelling). Also, lupus nephritis can cause edema of the hands and feet ankles and legs, and you mentioned that you were having kidney involvement with your Lupus. Again, These symptoms are also primarily treated with steroids! Since you are taking Coreg - this is a serious side effect of that medication and you should notify your doctor asap!
Coreg is in a group of drugs called beta-blockers. Beta-blockers affect the heart and circulation (blood flow through arteries and veins). Coreg is used to treat heart failure and hypertension (high blood pressure). It is also used to treat or prevent heart attack. The side effects that you should seek help for and/or get emergency medical help if you have are: hives; difficulty breathing; swelling of your face, lips, tongue, or throat.
You should call your doctor at once if you have any of these serious side effects: slow or uneven heartbeats; feeling light-headed, fainting; feeling short of breath, even with mild exertion; swelling of your ankles or feet;
nausea, stomach pain, low fever, loss of appetite, dark urine, clay-colored stools, jaundice (yellowing of the skin or eyes); depression; or cold feeling in your hands and feet.

The water around your heart is probably Pericarditis (inflammation of the lining of the heart). There are other ways that Lupus affects the heart and they are:
* Myocarditis: inflammation of the tissue of the heart
* Coronary vasculitis: inflammation of blood vessels in the heart
However, Pericarditis, or inflammation of the sac around the heart, is the most common heart involvement in people with lupus. This condition occurs when antigen-antibody complexes-also known as immune complexes-are made during active lupus and cause inflammation within the pericardium. Lupus pericarditis can be treated with anti-inflammatory drugs. If anti-inflammatory drug therapy is unsuccessful, corticosteroid treatment is usually used. But, if pericarditis is due to infection or kidney failure, the treatment is different than if it is due to lupus.

There is a wide range of pulmonary manifestations (symptoms) associated with lupus, and all of them need prompt evaluation and close monitoring. Pleuritis (pleurisy) is the most common pulmonary manifestation.
The pleura is a membrane that covers the outside of the lung and the inside of the chest cavity. It produces a small amount of fluid to lubricate the space between the lung and the chest wall. As lupus activity generates immune complexes, they initiate an inflammatory response at this membrane, a condition called pleuritis.
Sometimes an excessive amount of fluid builds up in the pleural space between the lung and the chest wall. This is called a pleural effusion and occurs less often then pleuritis.
These, too, are generally treated with steroids

With reference to your question: "Am I normal - do people suddenly have multiple organ attacks?" Men are affected with Lupus less often than women. However, when they are affected, their Lupus is generally more serious than women and multiple organ involvement is not uncommon. So, in a sense, you are normal considering the dynamics of this disease!

It might be beneficial for you to write down all of your medications, look them up and find their uses and side effects. In so doing, you will be able to make informed decisions, with your doctors, about which ones you feel you need and which ones may have to be modified or discontinued.

I am sorry that I am not able to give you direct answers. Please continue to work closely with your doctors and please educate yourself about your meds and how they affect you.

I wish you the very best
Peace and Blessings

06-26-2007, 09:37 AM
My Lupus has not been as awful to me as yours has been to you, creating havoc on your well being. I do not have any organ involvement. I also have Sjogren’s syndrome. I can relate more to the emotional aspect of it with you.

I don’t have any info on the medications, suggestions and knowledge of all your diagnoses. I have only been on a few drugs for Lupus but many pain and arthritic prescriptions prior to being diagnose.

Currently, Plaquenil which seems to be working for my joint, muscle pain, headaches and rashes. Still fatigued and weak at times but I have only been on it for 2 months. But my results so far seem promising and give much needed hope. Ultracet, aka Tramadol…which just makes me itchy. I chase it with an allergy capsules for that. For me, when I took predinose it gave me the moon pie face and an extra 25 unwanted pounds which I still tow around. I am working on that.

My hands and feet used to swell up periodically but since being on Plaquenil I haven’t seen it. Fingers and toes resembling a pack of Ball Park Franks. Grill size. Or like when you blow up a latex glove with air. Exactly.

My father and sister have Type II diabetes. Swelling is always prevalent in their lower extremities. They take a prescribed diuretic. Diabetes causes weight gain. Well, the insulin does and at times makes for an insatiable appetite. You too? I have read they have insulin you can inhale, that helps control the weight gain. Have you heard of it? I think the name is Exubera.

I am on a anti-inflammatory diet. No sugars, or substitutes. Exception Splenda. I add it to plain yogurt and some oil dressings. No preservatives or additives. No wheat or wheat by products. What’s left?! Fish, poultry, fresh veggies, dark fruits, olive oil, ground flax seed….I have many great recipes…interested? I also supplement with 2000mg of fish oil and a super B complex. I stretch everyday with a DVD 10 Minute Solutions. Seems to oxygenate my blood and gives me bursts of energy. Stretch in your recliner, whole body…or even a limb or just the hands helps. Showers, the moist warm heat helps me tremendously. If you can’t stand…they have great shower chairs. Some pivot you in and out…Sit and let the water massage your back, head and shoulders…wonderful. Or even just a plastic lawn chair would do. Tread cold water in the bottom of the tub. Fill it, oh a foot deep..walk in it. Helps alleviate the tight, burning feeling in the feet and ankle or just sit on the edge of the tub, feet under the faucet and alternate the running water, from warm to cold...

I take two Ultracet with the allergy pill, Chlor-timeton at bedtime. Helps with the morning stiffness. I use to feel like I was pushed into wet cement and while I slept it set; now it is easier to unfold.

Two months ago I couldn’t turn a door knob. I’d rather crawl than walk. I spent many days and nights in bed, a miracle I wasn’t full of bed sores. Unknowingly I must have flipped quite regularly.

The last time I was lost in my pain was almost two months ago. Feeling alone. Not the first time and no doubt it will not be the last. Though my symptoms are not as severe as yours I can relate to your feelings. I would feel I was closer to the dirt than I was to normalcy. I’d sob, get angry with myself, with my life, with my faith, with people, and feel sorry for myself. Mumbling profanities. Thinking why, why. Wanting to stop thinking and feeling.

We try to incite hope… someone always has it worst than I, but I think we can feel sorry for ourselves, cry for ourselves, cry out loud, and get angry. When I do that it is like a release, the flood gate opens…whoosh…When all of those emotions are purged with each snotty nose sniffling sob, swollen and blotchy face we can take on another day, another week…another month. It will slap us back down, I am sure…but we do the same and start anew.

Too, when I felt overwhelmed, anxieties I dosed with Xanax. I haven’t used any for about 5 plus weeks. My fears are in the distance. I was afraid of my life, being ill. At times it would paralyze me mentally. I’ve changed my lifestyle many times. Wondering what was left…but there is always something. Sometimes it is hard to see through the anguish, but through grace I always found my way. The last time I was guided to this place, wehavelupus.com.

Maybe this is the best it will get, but it is hope that keeps me trying and I see that in your post too. Hope. Not giving up. Vent, tell us, tell me.

Keep well Payitforward,

06-26-2007, 07:42 PM
wow - i've had one of those days that everything is just very challenging and though i don't drink - i think i could use one!

So, Lupus - my doc wants me on Plaquenil - off from Imuran which made me very sick. I have to get some opthamologist release in order to be on the medication which has proven to be a scheduling pain on their part.

Anyway, I don't know which of these to take - I've been on Imuran so I know what to expect - Plaquenil -no idea if it will do any good - can't remember if this works on organ attacking Lupus???

I'm SOOOOO confused I could scream. My doc said no patient has ever had both MSA and Lupus as severe as I do. So I'm the first person EVER to have both these conditions - hard to believe, but whatever - not sure what her point was?

She went on to say that she thought my symptoms were more MSA related and not so much Lupus....I don't know - she's a good doc and she may be right - I have no idea. It will suck if she is right because that would mean the progression is fast with MSA which is not good.

Bottom line = I have no idea which of these med's is better and will smack Lupus into remission?

Coreg - Jeez...I know this drug is a pain as I now know. I'm pretty ticked at the cardio about this one...I could swear this is what is causing my teeth problems but can't even test it out because I can't stop taking the medication - guess its dangerous or something. Right now they don't want me off this medication. Well see what tomorrow brings - I want a new medication - so I'll get it one way or another - its my body and eventually they will listen to me because I'm very pissed off and that's when the nurses shut down and get the doc which is fine by me - no doc scares me..

I understand prednisone may be the cause of many of the issues - doesn't make the most of sense, but prednisone seldom does....i've had the moon face 2 times in the last 4 years - no reason why - just because...

You gave me so much information to follow up on...and I will do that...need to check on a couple of conditions...thanks a lot though...

OMG - family is home and won't stop talking to me while typing this - I've typed this over a few times now .....i'll be ordering that drink now... :)

Thanks for the great information. I do look up the side effects of my medications - however most often they say very similar things....I mean I'm hypothyroid and if I followed those rules I'd be calling the doctor before taking nyquil - much of what is listed is for protection of the manufacturer in my opinion...However, I have slacked a bit and not paid as close attention to some of these new meds - though I certainly did look up both Imuran and Plaquenil...doc says not to worry about side effects on Plaquenil almost no one has any eye trouble...so who knows...

I'd like to feel better...so tired....and so sorry i have to go....my house is chaos at the moment.....lol, i had typed this long word doc response to your response - which i guess is good i'm not using as it was too long....

OH - doc says i can go up on prednisone....can be on whatever I want...after I just got down to 10mg....i said i needed to think about this...already diabetes so that's a done deal......just not sure...but i do feel much better on higher dose of prednisone....

Take care and talk to u soon...I'll be back online hopefully when they go to bed!

06-26-2007, 07:55 PM
Thanks for your heartfelt reply. I could feel it in your note. I'm sorry you have had to go through so much as I know its not easy going through the things you discussed.

A long time ago I was on xanax and loved it bigtime - but didn't stay on it long - it was back when they worried so much about addiction even though i was on a low dose.

It is good to have this place - to talk to people in similar situations. No worries - I've had a long time to deal with dying and everytime I think I'm all good to go - and something happens where I have to really worry about it - I'm not ready! Go figure! Its hard to deal with all this stuff - and when faced with reality it can be even worse. I wish I could say I'll be ok with it - but only to a point - I'm going to miss my 9 year old - no matter my relationship with God or not - I am going to miss him and that makes me super sad. I want to enjoy life with him - but most of his life I've been sick so that hasn't exactly worked out and lord knows what's in store for me...

I will try and keep my spirits UP and I hope you do the same. Its very hard - struggling pretty bad right now - everytime I turn around something else in me is breaking.....a bit overwhelming at the moment...Ah I should stop....probably over lapping with MSA stuff....

Take care....

06-28-2007, 10:34 AM

I know..I dislike it when every which you turn something is toppling over. Whoa, let me catch my breath from the last one feeling. But when it seems like there is no end insight. No more can be heaped it comes to a calm and relief is in sight. I hope you feel a pause, relief soon and you find the right prescription combo to tame the wild beasts that run rampant inside you.

Did you have that cocktail after all?

Hope today was good to you. Tomorrow just might be even better. I can't wait.

Keep well,

06-28-2007, 01:30 PM

I have really tried to keep my spirits up - but am not doing a good job - ok I guess - no one knows how bad I really feel. Honestly I feel like death - I have so many problems I don't know what to do - have a specialist for this and that - its fairly crazy.

Cardiologist says my sensitive teeth are from prednisone - out of the blue but prednisone - after 4 years at this dose - but OK - my heart problems could be lupus or MSA - either way all they can do is try and keep my heart rate down with medication.

I've also developed an anal fissure from the constipation - one doc says surgery but no one is going to operate on me - cardio will never ok it - so I'm doing nitroglycerin and I think Botox as well - shots.....SIGH...

Diabetes not going away - apparently here to stay -- blood sugars are lower - but not stable by any means

MSA - good God I cannot believe its getting worse - but it is - need new medication - Sinement - but don't want any new meds until I'm under control.

Fatigue - Holy cow - seems like blinking causes me fatigue and out of breath - can't do much of anything to be honest. I sit.

Lupus - Another Holy Cow - haven't a clue. I'm torn between Plaquenil and Imuran. Already done Imuran and all I did was get sick - but am willing to go on it - doc says I can go back on it - but I don't know what to do. In order to go on Plaquenil I have to get opthalomologist signoff on vision...which is a problem because i already had an eye test earlier - but no dialation - they were running too far behind and I needed insulin..

I don't know..if I were to be completely honest - I'm actually scared - which is not like me at all...I really don't think I'm going to make it through the year - heck not even sure about this month - everytime the doc's think I'm going to have a heart attack I don't feel that terrible - but they hold me anyway - then when I do feel like massive crap I'm not at the office...

I'm rambling sorry - maybe no one will read this - I feel like I share too much sometimes - got really disappointed recently by a person for sharing too much information - not a huge deal just a let down - i've got to many issue to get caught up in drama...i would like to get better and hope this happens....just hard when u have so many comorbid conditions like myself....SIGH..

Now, I do hope you and anyone who reads this is on the road to feeling better - i know its never perfect but maybe better :)

Thanks for listening Oluwa and anyone else out there - if nothing else I typed out my feelings :) Now here's hoping I catch a break!

06-28-2007, 02:48 PM

I would do what Saysusie suggested. List your medicines, research side effects and go from there.

It is hard trying to keep the files sorted in your head, memory...put it to paper and maybe you won't feel so mentally overwhelmed.

See if you can find home remedies to alleviate the side effects. Many ideas have been put out in the forum topics.

Mouth hygiene is very, very important with diabetes. Floss daily, after and inbetween meals, regular cleanings, check-ups. Have you tried Sensodyne? Or natural, Clove Oil?

Ensure fiber is in your diet for constipation. Prunes? Constipation is toxic on the whole system. From the prescriptions, depression and stress can create constipation. Don't push. Pushing will cause the crack to crack. Fissure.

It sucks, for a lack of better words, to be sick but what ya gonna do. Try to minimize the pain and etc. Have you sought out acupuncture therapy, reflexology? Changed your diet? I know in diabetes, diet plays a major role. Diabetes can cause great havoc on the body too. I know, I've seen it in my father and sister.

Sometimes medicine alone isn't enough PIF. To feel in control of you again I would search and research your diseases, beneficial foods, supplements and etc.

We can supplement our health with alternative healing which consists of food therapy, vitamin, minerals, herbs and/or bodywork. Alternative healing and modern medicine can do wonders together.

Make a plan of attack and like everything present it to your doctors to ensure it wouldn't have any adverse effects on your prescription therapy.

Plaquenil..I like the results it has given me thus far.

Since you are confined to your recliner...stay away from the news channels, all 187 of them and watch Planet Earth...something light. For me, news is a depressant. Even better go to the theater..have someone wheel ya there if need be. See Evan Almighty with your son..something fun.

Night PIF,

06-28-2007, 06:30 PM
Hi, PIF. I haven't been posting much lately, and was glad when I came on line to see your post. But, so sorry to read about the increase in your symptoms. Don't feel like you need to apologize for sharing too much. This is not a place where anyone will judge you and find that offensive. We all share whatever it is we need to share at that moment. Sometimes it's just the need to vent...we don't expect a real solution...just someone to 'listen.' We are listening...never doubt that.

Plaquenil could really help your fatigue, but it takes time to work - sometimes 3 months or more. It's not an instant solution. Imuran (as you learned) can have some nasty gastrointestinal side affects. But, it can also work wonders for some. It HAS made a difference for me (I think we posted back and forth about this before.)

Oluwa is right - do something to help you feel more in control of your own health. Research nutritional information - be careful about supplements, though. You're on a lot of meds, and you'll need to clear ANYTHING new with your docs. But, some foods are natural anti-inflammatories (among other attributes) and those foods might make a difference for you. I'm not a nutritional expert, but there are others here who may have some ideas, and there is a lot of info on-line.

Diabetes is so tricky. And, you're confined to a recliner which can complicate things. Take care to notice any changes in your extremeties: numbness, tingling, feeling unnaturally cold, discoloration. You'll want to let your docs know of anything like that, right away.

Oluwa is also right about what you watch. Being a news junkie these days can really be depressing. And the 'news' shows that have them yelling at one another can be so stressful to watch. DO try to find things that capture your interest and can take you away from yourself for a while. I absolutely LOVED the Planet Earth series that the Discovery Channel had on. If you can find repeats of that in your TV schedule, take it in. It's just breathtaking, and I'm guessing it'll give you some much need respite. Focusing only on your illness is a hardship in itself.

I don't know where you are spiritually, but whatever level of faith you have, this is the time to explore that faith and rely on a greater power to help you through this, whatever the result.

Lastly, know that you can always post here and find someone who will try to understand, try to offer you advice, and always always listen. I'll be thinking about you - and keeping you in my prayers. (Hope you're OK with that.)


06-28-2007, 07:43 PM

Thanks...duly noted about the med's and yes your correct about the discussion. I'm going to go back on Imuran and pray.....one of my doc's is calling this expert at Mayo Clinic so maybe they will have some idea..its hard for the doc's because i'm 40 this year - and i was 165-170 pounds - about 5 10' == not anymore...gained too much weight, which seems to be mostly in my face! Oh and belly - I have one now...point is i guess is that i 'look' like i should be healthy - and i'm not - my blood work is bad news....going to do some research myself tonight...

i did see some of planet earth and i have hd tv and it was awesome....very relaxing and beautiful.....nice advice..thank you..

yes i pray -- maybe not enough lately!

i'll let you know how things go .....i should have contact with 4 doc's tomorrow - going to be insane....its almost harder doing all this out of the hospital..but i don't want to go in...they'll admit me in a minute but i hate the hospital...LOL no laptop, tv, nothing...so boring... :)

thanks for the reassurance about venting and being honest....i appreciate it.....getting tired....take care of yourself....thanks