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Question about ASO titer and arthritis

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Posted 4/23/2006 6:07 PM (GMT 0)
Hi everyone.  I have a question about my 8 yr old son.  about 1 1/2 yrs ago my son got really sick with ebv/mono.  Even after he recovered from that he continued to have pain in his ankles, feet and lower back.  His pediatrician is great and she has been running labs on him every few months.  His sed rate is always elevated (it runs between 32 and 40), his ANA is mildly positive (1:40) and his ASO titer is unbelievably high (900). 

There are no pediatric rheumies anywhere close to where we live, but about a year ago, his pediatrician wanted him to see a rheumy so I took him to the same office where I go.  My rheumy doesn't see kids so another rheumy saw him.  This guy was not thorough at all and basically said that some kids get tired and that there is nothing wrong with my son.

So, the pain, fatigue and abnormal labs continue, so about 2 mo ago the pediatrician made a referral to a ped rheumy in the next state.  It turns out there are all kinds of problems in my poor son's body.  He has very limitted mobility in most of his joints from the hips down.  He's taking a prescription strength napoxen and is getting physical therapy - both of which are helping a lot.  We still don't have a diagnosis but at least a doc who acknowledges that something is definitely wrong.

I am very familiar with sed rate and ANA because of my health problems, but I don't know how the elevated ASO plays into this.  I know it's related to strep, but is it also related to arthritis?  I did an online search, but didn't come up with much.

Thanks for any info that you can give me.  If anyone has any thoughts about my son's case or any opinions about what you think might be going on, I would be really interested to hear it.

Posted 4/23/2006 6:52 PM (GMT 0)
Hey there hippimom2 - :-)

 

good to see you on the Arthritis forum!  Sorry to hear about your son.  sad I just recently found out that my daughter (she is 9) may have some auto-immune issues like me.. and I feel so bad for her.. Genetics can be cruel sometimes!  mad

Anyhoo--- I googled "elevated ASO titer strep" and I found this website.  Did your son get strep along with the mono?  From what I read, if strep goes untreated, it can turn into rheumatic fever and joint pain goes along with that... I am by no means a nurse or doctor though, so I could be WAY WAY off...

 

However, Erin should be along here shortly and she is so much more knowledgable than I about this stuff... Hang in ther and I hope you get some answer soon!

 

Duck

Posted 4/23/2006 11:51 PM (GMT 0)
Thanks Ducky for doing a search for me. I've read about rheumatic fever and I suppose it's possible that he developed that sometime. Even with his chronic health problems it is hard to tell when he is sick, so it's possible he had strep at one time and we didn't know it so it went untreated. I'm also wondering if he's a strep carrier and I'm going to bring that up with his pediatrician.

I'm sorry about your daughter. Do you have any idea what her doctor suspects might be going on? I'm guessing with my son it might be a while before we know for sure, because, as you know, these darn diseases are all so similar and can be so hard to diagnose. I do feel guilty for passing on these rotten health genes - both lupus and RA run in my side of the family.

Thanks again and take care
Posted 4/23/2006 11:58 PM (GMT 0)
When does your son go back to the pediatic rheumy? Could he have maybe JRA? The doc isn't sure what is wrong with my daughter either, she has been complaining of her legs hurting and her knees bothering her.... right now she has strep and is on antibiotics for it, so once that is gone, he is going to run some tests to find out if she is HLA-B27 positive (since I am)...

Good lock to you and your son, keep us posted on his progress! Rest easy - Duck
Posted 4/24/2006 4:08 AM (GMT 0)
Hi there, not to worry you both - but I was dx w/JRA at 11. Before then, I often (according to my mom) complained about legs and knees hurting. It took many years of doctors before someone suggested I get checked for JRA. I also had a run-in with strep for many years as a child - to the extent I was on antibiotics for what felt like 7 months straight one year.

From what I understand, it is scarlet fever (which really is strep throat with a high fever and rash) that can cause rheumatic fever, lung problems, etc. I believe, strep itself, can come and go. There is a lot out there on the internet that can tell you about strep and scarlet fever, being a carrier, etc.

I theorized that my arthritis is the result of having the german measles (rubella) as a child, but it never dawned on me that my issues with strep could have been the cause of it instead....hmmm. I wonder if I had the other at one point. I was sick so darn much as a child (which, by the way toned down greatly after I got my tonsil's taken out at 15 until I had my 2nd child 15 years later.)

Either way, keep on your doctors about this. Also, keep on your kids to stay active as much as they can - because I had such problems with my knee pain and swelling as a teen, I stopped taking gym class, though a great benefit for what eventually became my career due to the extra class I was able to take, it was a terrible for my health and exercise outlook. ANother girl at our school with JRA also DID continue to take gym and was given the clearance to WALK not RUN and bow out of any activities if she was in a flare.

Good luck. I'm so sorry your kids are going through this. That is one thing I'm so worried about with mine as well.

***

Posted 4/24/2006 11:34 AM (GMT 0)

Hippiemom2, my nephew had strep throat last year that evolved into rheumatic fever.  Had a heck of a time getting a diagnosis because a lot of doctors don't recognize rheumatic fever these days.  His symptoms were of course related to strep throat at first, but then all of his larger joints (ankles, knees, elbows, etc...) started swelling badly.  Later, he developed a rash over, I think, the lower portion of his body.  He was put on penicillin and an NSAID for the joint swelling, and referred to a pediatric rheumatologist, whom he still currently sees.  He now has to take penicillin, or the equivalent, for the rest of his life.  If he gets strep again, there's a good chance it will go straight to his heart.  He did have a consult with a pediatric cardiologist last year after this happened, but he's just fine in that department.  He's only 8 years old.

In your son's case, if he has a high ASO titre, and that is related to strep, I would strongly consider mentioning this to your pediatrician, and certainly to the pediatric rheumatologist once you get your son there.  My nephew was very fortunate in that the doctor on call when he was taken to the ER was a pediatric rheumatologist who specialized in rheumatic fever.  Evidently, rheumatic fever is making a comeback in this country.  Not sure if it is related to future rheumatoid disease later in life or not. 

I hope your son is feeling better soon,

Elcamino

Posted 4/24/2006 12:49 PM (GMT 0)
THanks so much for all of the information. He had another ASO done a week ago - before he got his last round of strep, so hopefully I'll hear the results of that today.

CaMama, I do think there was a chance that my son had scarlet fever before all of this really started. My son developed a rash that started to spread. It got bad enough and he felt sick, so my hubby took him to out local ER since it was the weekend and the ER doc thought it could be scarlet fever, so gave him antibiotics. The problem is that I'm not sure if they did any tests in the ER to confirm this. Hmmmm...I wonder if this is what could have started it all. Regarding exercise, I am so fortunate that my son loves to be active and for the most part he still does everything he enjoys despite pain he has. He is still able to play all of the sports he wants to - he just can't run as fast as the other kids.

Elcamino, that is really scary about your nephew. I don't know if there is a way to find out if my son had rheumatic fever or not - we might never know. My son sees the ped rheumy next month, so in the meantime we see his pediatrician if something is wrong - she has been really great through all of this.

Thanks again for responding.
Posted 4/24/2006 11:54 PM (GMT 0)
Just note that an ASO can remain very high for a very long time after strep. Even a year after! What we want to see is the ASO either remaining the same or decreasing, but either way it does not indicate an active strep after the strep has been treated. Throat culures are the only way. The ASO just remains as a titer (like the chicken pox) in the blood.
After reading this all, I would really pursue the ruling out of JRA. Honestly, that doesn't fly with me "kids sometimes get tired it's normal" crap...kids are honest & they WANT to go, go, go...so if something is limiting his mobility, causing pain...that's serious. I just hate the thought of an MD brushing a serious matter aside (happenned to myself, and my heart would absolutely break in half if another child went through agony).
So, I would bring up to the PCP about having JRA panels run. I mean an ANA showing up?...that's a lead.
Oh Lord, I wil pray for you both! What's the next step?
Take good care.
Posted 4/24/2006 11:55 PM (GMT 0)
Also, forgot to mention that it could be possible for a reactive arthritis. Caused by infection such as strep/staph/....
Posted 4/25/2006 1:51 PM (GMT 0)
THanks erin. Hubby and I didn't care for the rheumy who told us that kids get tired, so of course we didn't go back to him. We just recently saw a peds rheumy who is about 3 hrs away in the next state. He is the one who recognizes that there is something going on and that he has limmited mobility. I'm not sure what direction he is leaning - he talked about possible Reiter's Syndrome, so I've been looking up info about that. We have another appointment with him next month. He is the one who prescribed the anti inflammatory and physical therapy - both these things are working really well.

Thanks for thi info on ASO. I didn't know it could stay elevated for that long.
Posted 4/27/2006 10:42 PM (GMT 0)
a-hah!  just what i posted!  reactive arthritis is also called Reiter's!

sounds like  a smart doc.

good luck

Posted 4/28/2006 12:45 AM (GMT 0)
Today I just got the results of another ASO, ANA, and sed rate. ASO was still elevated at 500, but down from the 900 it had been previously. However, the ANA was higher and the sed rate was higher. My son's pediatrician is getting quite concerned and she tried to call the peds rheumy but he's out of the country for a week. I'm really sad about this. On the bright side, my son takes all this in stride - think he's used to pain and he just deals with it and goes on with his life.
Posted 4/28/2006 4:15 AM (GMT 0)
one thing is for sure...we can all learn a good lesson on how to cope with disease from children.
as long as the docs keep on top of things...you'll do alright. he's a tough cookie and so is his family.
in my prayers,
erin
as soon as they devise a plan of action, please let us know.
Posted 4/28/2006 5:54 AM (GMT 0)
HI hippimom2. I have had an issue with this ASO test. Back in Jan of 05 i caught strep throat while in mexico. It was miserable. Fever of 103, a throat that looked like pizza...saw a docotor there. Got antibiotics was feeling tons better the next day..but about 3 months later started having intestinal issues, then achy joints (no swelling)weird vision things blah blah blah...had TONS of test ruled out tons of disease. I found a primary doctor who did an arthritis blood panel along with some other blood work back in October and under that panel is the aso test. mine was 899 but esr was was low rhumeatoid factor at like 10 (withing normal range) but anyways all other blood work normal ANA etc....so he put me on antibiotics because he said strep can hide anywhere in your body and tested me again 2 weeks later dropped to 790 and then 2 months later 723 and just last month it went back up about 20 points....he has spoke with a pathologist and an internist who both told him that aso is just a titer it is indicator that your body has produced an antibody to strep..not necessarly indicating you have a strep infection...so mine could be high forever I guess. All my other test are normal except for this one..So I have kind of just come to the conclusion that my aches and pains are a form of arthritis from the strep. The docotors don't think I had rhuematic fever. I never got a rash on my body anywhere. I was born with one kidney so that makes me wonder if that is why it is taking longer for the ASO to go down because I filter less! I've been tested for Lupus (the whole blood panel) I don't get rashes but i know I do feel achy after being in the sun.....I REALLY REALLY hope your son gets the best care. I have a 3 year old and my heart just aches for you to have to watch your son be in pain. It would kill me. Good luck and HUGGS HUGGS HUGGS and prayers for you and your son.
Posted 9/14/2007 2:26 PM (GMT 0)
  Hi Hippimom2

i was reading this thread and I realize its dated last yr but I was really really curious to how your son is doing now So if your still around could you pls post on how he is doing??? I just posted about my PSRA caused from strep

Here's praying your son has had a full recovery cuz no child should have to live in pain

Blessings

Leigh

Posted 12/6/2007 5:23 AM (GMT 0)
The symptoms & test results sound amazingly similar too mine, pain in feet mostly in the morning, severe pain in knees, achilles tendons, lower back, random fingers and toes off an on, no fever, no eye problems, no urinary problems, reynauds phenomenon. Had a quite severe but short lived bout of diarrhea for about 3 days a week before this. The worst of the pain lasted about a month then began to subside, and currently just at about 5 months later has nearly completely subsided. My sed rate was normal, RA factor normal, chlamydia negative, gonorrhea negative, blood chem normal, WBC normal, ANA was positive on the first test (generalized) then sent for further testing and was negative. I didn't really think about the diarrhea or sore throat ( a couple months before that i never treated) so i didn't mention to rheumy. With all the test he did, he couldn't diagnose me, but my symptoms were very consistent with that of ReA and magically hit me about a day or so after my 20th birthday! talk about waking up and feeling like an old man! . SO who knows. Hope your son is feeling better, I would really like to hear from more people about this disorder because it can be quite scary at times.
Posted 6/23/2015 8:33 PM (GMT 0)
I know this is an old conversation, but I stumbled across it and thought my story might be able to help someone else. It is comforting to know that I am not the only one going through this.

A little more than a year ago I had a really bad case of strep. A few weeks later I got a huge lump on my hand. It was the weekend so I went to Urgent Care. They thought it was a spider bite since I had been moving (even though there were no holes). Gave me a steroid shot and sent me on my way. A few days later I had those nodules all over my legs and could barely walk or stand up. Went to my regular doctor. They weren't exactly sure what it was so they put me on prednisone. After a while, they went away.

A few months later I got strep again. Three rounds of antibiotics to get rid of it. I missed a week of work.... A few weeks later, the nodules on my legs came back again. My body hurt so bad that I couldn't stand up all the way. They started prednisone again and I felt a lot better. This time they identified it as Erythema Nodosum. I tried to step down off the prednisone several times with no luck. They referred me to a Rhuematologist.

She did lots of tests and ultimately diagnosed me with inflammatory arthritis. I tried Imuran, but was allergic. I have finally stepped off of the prednisone by switching to Humira and Mobic, but I still have flares.

I am 37 and did not have any medical issues prior to this. It all started from a strep infection. It has been a miserable (and really expensive) year, but I'm glad we are to the part where we are adjusting meds instead of figuring out what I have.

Just as a background, they are testing:

Vectra DA - was 66 in March
Sed Rate - was 32 in March
ASO - which was very high in March

Post Edited (recentRA) : 6/23/2015 2:40:03 PM (GMT-6)

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