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Avatar universal

help with diagnosis for LUPUS

Hi,
My son is now 16 years old.  About 2 years ago he was diagnosed with hypothyroid.  On aug 3 07, he was diagnosed with ITP.  We have been battling the ITP with the low platelets and using IVIG to raise his counts. In March 08, he was diagnosed with Morphea (autoimmune to his skin), we also thought, based on his stool and blood tests that he had Ulcerative colitis.  He has very sore joints as well as sore everything on his body...very hard to sleep at night and get out of bed in the morning.  He also woke up on monday with lots of blisters/sores on his tongue and roof of his mouth.   I contacted the Doctor and she gave me his blood results and said that he has LUPUS.  He is autoimmune to many parts of his body.  But, he has not had any fevers, no protien, kidneys check out good.  
Can anyone offer any info to help?    They put him on 60 mg of Prednesone and just after 1 day, he is feeling great...but I"m not comfortable with the steroids...especially if this is not LUPUS.  
Any help or comments would be great.  Thank You!!
5 Responses
484098 tn?1259531132
Even if it is not Lupus, the Prednisone is going to help what ailes him.  But, remember the Prednisone is only temporary.  It will stop what's currently happening, they will take him off after a short time- then he will need many other medications, depending on what his body is in need of....such as an arthritis med like Celebrex, and a medication for his colitis.  He may be put on Plaquanel (anti-malaria drug) which will help his body stop fighting itself.  Nothing will be perfect, but it will help immensely.  Keep him out of the sun!  Not all Lupus sufferers have trouble with the sun, but most do.  Go to www.****.org and read up on the symptoms.  You'll be amazed at what is covered under lupus diagnosis.  Also, remember that one autoimmune disease is usually accompanied/overlapped with other autoimmune diseases.  I have positive blood tests for 4 different types of ANA tests (Anti-DNA Double stranded, ANA IFA Speckled, ANA AB EIA and the positive Ro/SS-A, and a positive test for Sjogrens syndrome, but negative RF (rheumatoid factor)--yet I have x-rays to prove I have arthritis.  3 doctors say I have Lupus, but the Rheumatologist says I don't.  Go Figure!?  I have sore joints, can't bend my knees or walk without pain, I have shooting pains throughout my body the minute I lie down in bed at night, and I get muscle spasms throughout my body, including around my heart.  If I spend time in the sun, I sleep for a day or two or three, without the ability to wake up at all.  Yet the Rheumie refuses to see me due to his impression that I don't have Lupus.  thanks, you're a real winner Dr.!  As you can see, your son may be in for a hell of a roller coaster ride.  MAY BE!  He may get lucky and have a doc that is very astute and will give him what he needs right away and he would coast through this disease for the rest of his life with very little aggravation.  If the sun does affect him, get him a 45 SPF sun screen (try going to ****.com) that he can put all over his body, including his face.  He'll need to reapply every couple of hours, even in the winter and inside offices with Flourescent lighting (schools?).  Some don't have trouble with the sunshine, so he may luck out there.  If the sun truly is a problem, he'll want to start wearing hats with wider brims on them, and sun glasses that keep out the UV rays.  If the lighting bothers his eyes, such as causing intense pain BEHIND the eye ball (I had that for about a year), then he would want to get special sunglasses that are super dark, with padding, like what motorcyclists wear to keep the wind out of their eyes while riding.  They even have some now that have the pads, are super dark, have 100% UV protection, and also have a MP3 player built right in.  He'd love that, I'm sure.  It sounds to me like he has an awesome doctor!  Between my current doc, this web site, and the ****.org site, I'm pretty happy with the way things are going for me now.  Eventually, you'll be able to get his symptoms under control and he will accept his illness and live happily no matter what.  We don't truly have a choice, do we?  Find all the happy things you can in life to fill his days up.  If he's tired, by all means, make sure he gets his rest.  Teachers and principals will hellp with home tutoring, if necessary.  Good luck and let us know what happens from here.  Give him a gentle squeeze from us.  Tell him to get on here and read as much as he can. The SPRING 2008 LUPUS NOW magazine that came out was about teenagers that have lupus and how they deal with it.    Very good magazine!  You can subscribe to it via the website of www.****.org.  GOOD LUCK!
484098 tn?1259531132
Well I see that this site blocks out the websites I put in here.  One is Lupus dot org and one is lupus foundation of america dot org.  The sunscreen one is totalblock *******.  Kind of expensive, if you ask me.  But I have sensitive skin on my face, and I wear this on my face and it doesn't give me pimples.  It even has tints in it that can make it lighter or darker, depending on your own skin tone.  !!!!  


I wish you both luck!  Please keep us updated!
Avatar universal
Thank You for the information.  I have been reading so many of these posts on Lupus.  I am learning alot from them.  I appreciate the info and the encouragement you have given.   I will def. subscribe to that magazine.    I am so very happy with his Reum. Dr.  She takes alot of time with us (we have only had to visit her about three times, but that was with in a month period of time.)   She seems very concerned.  She said that since he responded so well to the 60mg of prednesone, she said that we should decrease it to 50 mg on monday (that is 1 week)  and then if all is okay, to reduce it the next week to 40 mg, and so on. She has given me a referal to an opthamologist so she can prescribe the plaquanel.  she prescribed pepsid and calcium/D to take with the prednesone.
So it really seems as if she is doing all she can. We visited her today and she made us an appointment for next wed. to check on him and go over the blood tests she took today.    
My son, due to the loss of appetite, hardly ate anything for about two weeks prior to monday.(when he began the steroids.)   he was on the heavy side, but lost about 20 pounds over the last 2 months (10 of those 20 was in the last month.)  He is happy with the weight loss and looks great.  we are concerned with the possible weight gain due to the prednesone...we have changed out eating habbits to eliminate most of the preservatives in our diets...  he knows he has to eat well, and for the most part, he eats well, but hates veggies and most fruits.  we are trying to come up with new ways to get him to eat them.    I know that healthy eating is a must...but so is exercise.  He starting walking on the treadmill to enhance his immune system as well as try to keep his new shape...but he called me (i wasn't at home) and he told me that he was going to walk on the treadmill but that he didn't know how long he could go becuz he was tired.  After reading these posts, i found it is important to get your rest.  I told him to take a quick cat nap or rest for about a half of an hour or so.   Do YOU find that (not talking about the sun)  do you get more tired since you have had Lupus?  He is 16 and usually had enough energy for the day, but now he gets more tired...but he isn't going out in the sun.
I know this is kind of long, but I am just trying to figure out, from other peoples experience, the best way to deal with different things that come up.  It is alot to deal with, but I agree with you , that we have to make the best of what cards we are dealt.  There are many positives that we count our blessings for.  Some of those blessings are these posts by people such as yourself.  thank you!!
Avatar universal
You mentioned that you have tested positive for (4) ANA tests.  I'm not familiar with those tests...I will have to read about those that you mentioned. But the part about your joints and muscles...what medicine did you doctor prescribe?  The prednesone helped my son in 1 day.  I'm sorry that you are having to deal with that daily.  Can you change doctors..you know, his doctor said to me today, that it seems as if parents may be better to monitor their kids than the doctors...she meant that becuz we know what is normal and what is not...I am saying that to you, becuz you know yourself better than the doc..she/he needs to accept what you are saying as far as symptoms and pain you have. I know that pain you are in is aweful and I"m sorry to hear that.   Good luck to you on that.   Thanks again for all of your helpful info to me.
Again, good luck to you.
484098 tn?1259531132
My current doctor has me on Celebrex for the arthritis/joint pain.  I guess Celebrex isn't just an anti-inflammatory, but also a pain reliever.  I also take Methocarbomal for the muscle spasms that wreak havock on my body.  They get my heart to squeeze and I always think I'm having a heart attack.  The Methocarbamol keeps those down to a bearable minimum. (Methocarbomal is very safe.....I went a little haywire last March and attempted suicide by taking 12 of the 500mg Methocarbamol's, with 4 xanax and other pills.....the psych later told me that I could take millions of Methocarbomal and not die from it!!!----Now I'm on antidepressants!)    I also take Darvocette for pain.  I take 65 mg in the morning, 65 mg at noon and 130 mg at night before bed.  For some reason, I can go all day with feeling mild pain only, and the minute I lie down in bed, always thankful the pain isn't toooooo bad, and instantly start getting tons of pain.  My husband said it's cause I'm relaxed and am just now noticing it.  Possible.  I don't know.  

As for the fatigue, I am more tired than I used to be, but I'm 47.  I am more hyper than your typical 47 year old woman, but I've noticed I have to nap or sit still more often.  I have trouble deciding if that's the lupus or the age.   If I don't drink my 3 cups of coffee in the morning, and drink tea once in a while during the day, I fall off the cliff and have to have a nap.  I usually like to be in bed by 8:30 or 9 p.m., which upsets my husband to no end.  He can't understand the fatigue.  He'll get there soon enough.  

Your son may want to take up the RAW food diet.....even if he doesn't like fruits and vegies he may appreciate their flavors once he gets into it.  He will very definitely do very well on the raw food diet.  Look it up on the net.  I'm having truoble giving up my pasta and pizza, so I still haven't gone all out into the raw diet.  But I hear when you do that most of the Lupus pains and problems go away.  It would be cheaper than prescription meds, huh?  :)

Well, good luck to your son.  Have him start only 15 minutes on the treadmill in the a.m. and maybe 15 min at night.  Keep at that for a week then boost to 30 each time.  That may be the best way to get that started.  If they had internet connections on treadmills, I'd be on there all the time!  LOL!  

Let me know how he's doing in a couple months.  I do love this site.  It's helped me immensely.  
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