immune system questions

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aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1469
   Posted 7/10/2009 12:06 PM (GMT -7)   
So I am about to go out of my mind. I had another cold and noticed it was getting worse. I went to the doctors and had an abnormal sound in my right lung, got an xray and it showed walking pneumonia. I have been home almost all week and I am about to go crazy. I can't stand being still for long. Even when I am at a pain rate of 10 I am hobeling/crawling around. Well I was told to get lots of rest...the bad thing i can't sleep due to my joint/muscle pain. They put me on  clarithromcin, cough syrups, nose sprays and some other decongestants.
 
Yesterday I decided to take a hot bath to if it would help with the pain and about 5 min after I got in the tub I started getting really dizzy, fast heartbeat, and shaky. So I got out, today I got a hot shower and the same thing happened...has anyone had this happen before? it is such a weird feeling. Any ideas?
 
I think my immune system is to supressed. I have had bacterial infections more in the last month than I have ever had...and no i am not exagerating. I was never sick as a child, maybe got a good cold once a year. My question, do you think I should let my rhuemy know how much I am getting sick since my increase of cellcept or is this just something I am gonna have to deal with. Luckily my nephrologist, rhuemy, and primary doctors are in the same system and can see each other's records in the computer. Any advice on what I can do for my immune system?
 
I finally got the courage to mention my stool problems that I had mentioned a few months ago...(mucas, sometimes green and yellow colors). Doc ordered stool sample and everything came back negative...thats a relief but i still want to know why that happens...oh well, maybe one day I will get an answer for that! Thanks everyone for taking the time to read this!!!

Amy

 

21 years old...Systemic Lupus , lupus nephritis , raynoids , Carpal Tunnel

Ultram, Prednisone, Cell-Cept, Lisinopril,  Ambien, Flexeril, Darvocet, Ferrious Sulfade, Calcium, Vitamin B12, Aspirin 81 mg, Vitamin C

The Old Normal is no more so I and we have to find a New Normal...

 


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 7/10/2009 2:17 PM (GMT -7)   
Oh Amy, what a stinker!  I had walking penumonia a year before my diagnosis.  The year or two before the diagnosis came I was sick with everything all the time.  After starting medication and giving it a good chance to work, I hardly ever get sick now.  last week with that gastroenteritis was the first time I have had something like that in about 8 years!
 
Remember that our immune systems are over active which can also make us sick and suseptable to a lot of things.  Of course we have to be careful about being too suppressed (which I know you're concerned about).  What's important is seeing the big picture with you.  Full CBC blood work, have your compliment levels checked (C3, C4.  These are dynamite indicators of active disease).  Don't bother getting your ANA checked.  That test is such a shot in the dark.  And also go on how you feel.  YOu have a lot of pain right now which means your Lupus is active.  Active Lupus = infections, pain, etc.  Definitely let your concerns be known to your rheumy.
 
I often have problems with feeling like crap and dizziness after hot baths or showers.  Our temperature control mechanism doesn't work properly.  I tend to stick with luke warm instead.  If you're having a lot of pain and can't tolerate a bath, try just using a hot water bottle or something like that where you can stick it on certain areas, not immerse yourself in it. 
 
Oh the poops...  That is one thing I have had issues with for probably over a decade.  It's all chalked up to inflammation in the bowels and intestines.  For me anyway.  and the stool samples always come back negative for me too.  Do you notice if yours get worse with certain foods?  Or stress?
 
Amy I'm so sorry you're having a terrible time.  It sounds to me like your Lupus is not in good control.  Maybe talk to your rheumy about trying another med other than Cellcept?  Maybe it's not the right med for you?  Were you better before the Cellcept was started?
 
Keep us posted okay,
 
Many blessings,
Ginny
 
 
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in to be content.Phillipians4:11-13
35 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety, Chinook migraines. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus
 Co-Moderator for the Lupus and Fibromyalgia forums


aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1469
   Posted 7/10/2009 3:17 PM (GMT -7)   
Hey Ginny! I usually get my CBC checked on a montly basis...sometimes every 2 weeks. about 3 weeks ago I had all the "Lupus" blood tests minus the ANA...Rhuemy said since I have already had a high positive, she isnt worried about checking that. I know the last time my labs were done, they were a bit low, but they fluctuate all the time.
 
I did not know that our body temp mechanism doesnt work right. I had never had a problem, but now that you mention it...I am not supprised. I realize that anything is capable with Lupus. I will definatly try luke warm showers, kind of stinks cause I love and I mean LOVE hot showers but sounds like the dizzyness and weakness can be an easy fix.
 
LOL...the poops, the main reason I had the courage to bring it up is because I had to see a different doc than normal and figured I probably wouldnt see him again in awhile so it wasn't as embarresing. I know thats rediculous but I have a little problem about talking in person to to docs about my "poop problems" The last time I went to my rhuemy she was asking me about diarrhea, which I have had a problem with since Cellcept back in Jan and I could feel my face getting redder than a tomato and quickly changed the subject. I know, they are used to hearing stuff like that, but I am not used to sharing that info.
 
about the CellCept, I honestly don't think it is the drug for me but they don't want to do Methotrexate because of my kidney problems, Imuran did about the same thing cellcept is doing for me...NOTHING! Since my diagnosis, the only time my lupus got under control was on the high doses of pred, but I don't think I can do that to myself again. It's a pretty bad sign that I am on 15-20 mg daily and still struggeling... Everytime I go to my nephrologist he makes some type of comment about hoping the cellcept will work soon cause he really wants to stay away from Cytoxan. But my last few labs I am spilling more protein and blood so I am afraid my funtion might go down soon if things don't look better.
 
Does Cytoxan work with joint pain? I don't know much about the drug but it has some bad side effects, but don't most of our drugs do? I go back to the kidney doc on the 30th and will probably talk to him seriously about switching, if i don't email my rhuemy first.
 
Sorry this is so long, on Wed my S-I-L left for Costa Rica for 3 weeks and my brother is in Afganistan, so I guess with no work, and being stuck inside the house, i get kind of talkative.

Amy

 

21 years old...Systemic Lupus , lupus nephritis , raynoids , Carpal Tunnel

Ultram, Prednisone, Cell-Cept, Lisinopril,  Ambien, Flexeril, Darvocet, Ferrious Sulfade, Calcium, Vitamin B12, Aspirin 81 mg, Vitamin C

The Old Normal is no more so I and we have to find a New Normal...

 


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 7/10/2009 4:04 PM (GMT -7)   
I think any of the meds we take will help with the pain.  As long as the Lupus is quieted down, all of your symptoms should be much more mild.  It sounds to me like your kidneys are in worse shape with your Lupus than they would be on Methotrexate or Cytoxan.  Yes, those meds might be tough on your kidneys, but so is Lupus!!  If they can get your Lupus to be quiet, you've mastered half the battle.  What do you think?  It's a catch 22 isn't it.
 
Ah, prednisone.  We love to hate it, but it works like a dream.  I know the love/hate feelings you have for it too.  But what can you do?  If it works so well, do you live with the side effects?  I realize that is hard to think about but you have to do what is best for your Lupus.  I hope I haven't stepped out of bounds by saying that.  It's the same sentence my family says to me when I have to face this decision too.  It never gets easier to hear!
 
Blessings!
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in to be content.Phillipians4:11-13
35 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety, Chinook migraines. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus
 Co-Moderator for the Lupus and Fibromyalgia forums


suetoo
Regular Member


Date Joined Jan 2006
Total Posts : 395
   Posted 7/10/2009 4:27 PM (GMT -7)   
Hi! Hon,
Chatty is good, what we are here for. Wish I could type as fast as I can talk. tongue   1st, hot baths or showers shouldn't be taken alone! Tee Hee, but truly, those symptoms are scarey combinations of serious things; low blood pressure from the heat(vasodilation) and/or inflammed arteries that are common in systemic lupus, again resulting in vasodilation, which often results in fainting, impaired temperature regulating from inflammation in your head, and the high risk of hitting your head from falling or just simply slipping. My rule about family nearby and phone on stool in reach came about from an embarrassing reality of nearly passing out in the tub, and being, literally, unable to get out of it. I came really close to calling EMS. As much as I love heat, I have had to limit my hot baths and jacuzzi sits. I find I can sneak one in when my lupus isn't flaring so much, but take quick showers mostly. My muscle weakness, my noodle arms and legs, happens alot, too. Also, "plumbing" problems with diarrhea can have many reasons, stress, a diet change or food allergy, lack of adequate fiber to hold water, an expected side effect from any one of MANY drugs, or simply because of inflammation. Our intestines are lined with mucus, and have an amazing blood supply for the purpose of digestion and elimination. Poop can be green, like in an infection, bloody, like in a lupus flare or Crohn's Disease, watery brown from food poisoning, (think Aunt Tillie's potato salad left on the patio all night), or mucusy from any combination of the above. And in lupus, inflammation is the foundation for most all our misery! Which is why managing  a flare is so important. I know just what you mean about going stir crazy, but being too sick to do anything else! Hey, do you have any pets? My dog and 2 cats are such a comfort to me. My schnoodle will pick things up for me so I don't have to get up or bend over. I feel like I am losing my mind alot, and, I usually get an infection or pneumonia every 6-8 months, too.  Which happens to people with lupus alot, we are often on immunosuppressive meds to help, and our immune system is in hyperdrive normally, not differentiating our own tissue from invading viruses or bacteria, so we get sicker, oftener and worser! yeah hugs,
suetoo p.s. I wonder why my dog won't fetch me my mind whenever I lose it????? smhair

God knows, even if I don't....
CNS Lupus 2005, APS, Hashimoto's Thyroiditis
Meds: Plaquenil, Neurontin, Thyroid, Piroxicam, Aspirin, Atenolol and Norvasc, Prednisone 5mg daily and Paxil, Ambien every night.


nona43
Regular Member


Date Joined Jul 2009
Total Posts : 42
   Posted 7/11/2009 5:21 PM (GMT -7)   
HI Amy just thought i would share with you I am on cytoxan i have a infussion once every 4 weeks and i have done this for about a year and a half I hate t0 say it but i think this is the thing that has worked best so far you must give up abbout 1 week a month cuz you feel like you had chemo cuz that is what cytoxan is and it has all the same side effects i have tried methotrexate,cellcept,imuran,none of it has worked, I still have bad flares last one i had to be hospitalized the up side is usually for 3 weeks out of the month i feel pretty good i also take remicade for joint pain and damage plus a whole other list of meds for everything under the sun.
Have you been to a gastro doc?I had some of the same intestenal problems and it turned out to be my liver ,autoimmune hepititis
just something to maybe get checked out.I really hope you get some relief soon i will keep you in my thoughts and prayers.
nona43

aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1469
   Posted 7/12/2009 6:23 AM (GMT -7)   
Hey Ginny, Sue, and Nona! Thank you for responding. I def have quiet a few questions and comments for my Dr's.

Ginny, not out of line asking the question but my question for you is what about what is best for my body. How can the extrememe weight gain, muscle weakness, and know the drill be better than without prednsione. Once I say that I ask myself well how is constant inflammation good for my body. Yup, I agree its a catch 22! I just hope if it ever comes back to that I will make the right decesion.
 
Hey Suetoo, I am with you on wanting to type as fast as I talk...I am looking into one of those programs to type what I say especially when my swollen hands are having a time punching the right key. LOL. I have had to move in with my brother and SIL and they do not want any anyside animals. I love cats and they do make me feel better. When I am really struggeling, there is a place called Kitty City where there are kittens to Cats waiting to be adopted. Sometimes I will go up there and play with the cats and if I can't paly, I watch them play. It really does help me feel better!!! Also, thanks for the visual images like Aunt Tillie potatoe salad...Gave me a good laugh.
 
Hey Nona, thank you for sharing your experience with Cytoxan. I will gladly take a week of feeling like poop to have 3 weeks or even 2 weeks of feeling well. I have been looking into Remicade and Retuxan but my rhuemy doesnt seem to excited about them or maybe its just something I can't take with the other meds I am on...Not sure. I have not been to a gastro doc,  I know that will be coming down the road but am trying to delay any more doctors until absolutly needed.
 
Thank you again for all your advice, Well...I am going to go out for the first time since Wed and go to Church, IF i don't, I think I will re decorate the house and then be in even worse shape.LOL. Thanks again for listening. It honestly does help knowing people have been where I am and can give great advice.

Amy

 

21 years old...Systemic Lupus , lupus nephritis , raynoids , Carpal Tunnel

Ultram, Prednisone, Cell-Cept, Lisinopril,  Ambien, Flexeril, Darvocet, Ferrious Sulfade, Calcium, Vitamin B12, Aspirin 81 mg, Vitamin C

The Old Normal is no more so I and we have to find a New Normal...

 

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