I am so happy to find this group... I'm just learning my way around the site, and I guess my original post was in the wrong spot (blogs).
Here is my (daughter's) story...
My 15 year old daughter (active club soccer player) woke up one morning last year and could not walk due to severe pain in her left lower back. This followed no injury or anything unusual that we can think of. After a four day hospital stay and antimflammatory drugs she was diagnosed with sacroillitis. A few months later she was diagnosed by our Rheum with Ankylosing Spondilitis. She is now on methotrexate and humira and getting steadily better, but still not back to her athletic self. I don't know if AS is considered Psoriatic Arth. but your group sounds informative and welcoming. This has been a long, confusing ride for the family-- she has no genetic marker for RA, and no one in the family does. I am troubled by the strong drugs daily.
I guess I (we-- husband, daughter) are in denial still. Why does a 15 year old girl with no genetic history have a typically elderly man's disease? There seem to be so many uncertainies when it comes to rheumatological conditions.
Here is my burning question... if she does have AS, will she be on these strong drugs (humira/methotrexate) for the rest of her life? Or, once the symptoms get better, may she taper back and ultimately not take them at all?
The problem with anything autoimmune is that nothing works for everyone. Some people respond great on low dosages of medication and other don't respond on high dosages of really strong medications. Add in the fact that at times you are in a great deal of pain and other times the pain seems to be reduced for no reason. It's frustrating as a patient but probably more so as a mom watching this all happen.
This isn't an old man disease. It can strike anyone at any time. You might want to do a google search for support groups dealing specifically with AS. I know there's a facebook group that's very supportative. Your rheumie might also be helpful in getting you information but unfortunately it's not a one size fits all disease.
Welcome concerned Parent ! I'm so sorry your daughter is having rheumy problems so young. My family has no history of Psoriatic Arthrtis or Lupus and I have PsA and my sister has Lupus. My suggestion is to look for a support group/organization in your area that can provide you with up-to-date medical information, perhaps patient conferences. Lupus has a conference/information sessions for patients at least once a year. My Mother also goes and finds them very useful. You could start with the Arthritis Foundation. The Psoriasis.org has a mentor program that pairs newbies with veterans, maybe they have one for AS. My daughter goes to college with a girl that has arthritis - not sure which one. So, there are young arthritis patients and maybe your daughter could find a peer for support?
I hope something I wrote was helpful. Please keep us updated.
Spondilitis can be a symptom a lot of Psa sufferers endure. Ankylosing Spondilitis can happen to anyone at any age. Unfortunately, if your daughter is a soccer enthusiast she may have had unnecessary trauma to her lower back and/or spine. She may have been born with a genetic predisposition that has made her more susceptible to spinal disorders/injuries. For instance; my sister has had four back surgeries including prosthetic discs and two cages. She does not play sports, has two master degrees and has always had a low impact type career.
As far as being in "denial", you just can't be. It's not your problem to deny. If the both of you act like it's not happening your daughter will too.
The problem with Psa and Ankylosing Spondilitis alike and, I'm sure other similar diseases, is the drugs you take may make you feel better. Sometimes to a point where you think you don't need them anymore! That's what we all hope for. In reality that is not going to happen. You may go months or even years with no physical symptoms but, inside your body is still fighting for control....one day you get a sore back....one day your get tired for no reason...the next day you're at the Dr getting x-rays and being told your spine is fusing together and you either need to take drugs or need surgery. Not only can you not play soccer but, you can't bend over to put your socks on.
Your daughter can try different medication. Most Drs prefer enbrel over humira for instance. She may be able to get off MTX and just take Humira or Enbrel alone.
The biggest mistake I made was thinking I could do NOTHING different! Albert Einstein said; "the definition of insanity is doing the same thing over and over again and expecting different results."
I wish I had an answer for you..... AS can and often is a seperate disease. Its is also the result of PsA in some cases. Either disease has been known after it originally rears its ugly head in young people to go into remission sometimes for years. There is a site for AS with forums including one for teens at: http://www.spondylitis.org/main.aspx
I would recommend YOU go their first. The educational materials are good but stay AWAY - FAR AWAY from the forums (the teen one isn't to bad) and especially keep your daughter away. The boards are full of bitter self centered self pitying folks whos day is spent one upping each others misery. Many have not been DFx'd at all and have self diagnosed thinking "it fits" many are opiad dependent and spend great deals of energy justifing it. only mention this because your daughter will find it.......
She may or may not be able to take a drug holiday at some point. Current thinking is to hit this disease hard and consistently early so as to prevent permanent damage.
I'm sure you are a "mess" who wouldn't be? I don't need to share my history now. but I know where you are at with having a kid with a potential life changing disease. As hard as it can and will be, you need to acknowledge it and move on. Push daughter to do the most all the time (in short as much as you want to hold her in your lap and rocker he and comfort her like she was three with a boo boo, you cant) With AS what doesn't move - rusts. BTW AS is not an old mans disease. It used to be called Young white mans disease. (seriously) You mentioned no genetic markers? I assume then she is HLA B27 negative? There are a large body of seronegative spondlyarothopies. Some come from a previous infection and actually with treatment in young active folk resolve themselves for years and years because of their ability to fight them.
If there is one piece of practical advice I could give you As hard as it is to be a club soccer parent there are worse sport. Swimming and Tennis come to mind. I say this because the most CRITICAL thing you can do is keep her active and moving. I know she loves soccer or she wouldn't be playing at the club level BUT she needs to develop a love for a lifetime sport that can keep those joints moving. (the is a saying with spondys what doesn't hurt doesn't work) But if you can get her in the pool, it would be wonderful (good conditioning for soccer anyway) she can keep it up for years and it will move and keep loose every joint in her body with very low impact. When she is not "doing well" acknowledge it but as painful as it is for you, kick her in the rear and get her moving anyway (you will learn to hide your tears) SHE MUST learn to fight through it. AS can defeat you and you can fight back. And while be natural for some women to be a nag (thats a joke) you need to be one. Posture is critical.
For her well being don't haul her to a lot of doctors the words may change but the treatment will not. The meds you mentioned are "state of the art" treatment is always individual anyway. They keep trying until they get a combo that works. I have worked with a young man who has been taking rermicade infusions since he was 9. He just signed a letter of intent for a top FCS football program. This disease is not an end just the begining of a new. BTW these kids they are better at this stuff than we old folks. They adapt way better than we do.
These diseases, like AS, are chronic and they are life long. The disease itself will never just go away. The symptoms can be controlled or managed to different levels of success depending on the patient. It is impossible to know how it will be for your daughter and the uncertainty is one of the worst parts of these diseases. Yes, she will most likely be on some sort of medication the rest of her life. It may not be humira and methotrexate because even those can stop working at some point, but thats a whole other story. If her symptoms are controlled at one point she may go into a sort of remission and have times where she is feeling better, there will also be times when she feels worse and needs to take more medications. No one knows what is going to happen. But you cannot stay in denial!!! This is real, it is happening to your little girl, and she needs you. You cant be in denial because that is not going to help her. It takes getting used to but you and her can still have a happy life. I was diagnosed 2 yrs ago at age 23. I asked my doctor what would happen to me when I got older or how I would deal with psoriatic arthritis the rest of my life. She told me: "honey, by the time you are 60 there could be a cure for all we know." and that could be true, so keep some faith and be strong for your daughter.
Thanks for the info-- yes, the uncertainty is the frustrating part. I will check out the AS facebook group.
Milo's my dog said:
The problem with anything autoimmune is that nothing works for everyone. Some people respond great on low dosages of medication and other don't respond on high dosages of really strong medications. Add in the fact that at times you are in a great deal of pain and other times the pain seems to be reduced for no reason. It's frustrating as a patient but probably more so as a mom watching this all happen.
This isn't an old man disease. It can strike anyone at any time. You might want to do a google search for support groups dealing specifically with AS. I know there's a facebook group that's very supportative. Your rheumie might also be helpful in getting you information but unfortunately it's not a one size fits all disease.
Welcome concerned Parent ! I'm so sorry your daughter is having rheumy problems so young. My family has no history of Psoriatic Arthrtis or Lupus and I have PsA and my sister has Lupus. My suggestion is to look for a support group/organization in your area that can provide you with up-to-date medical information, perhaps patient conferences. Lupus has a conference/information sessions for patients at least once a year. My Mother also goes and finds them very useful. You could start with the Arthritis Foundation. The Psoriasis.org has a mentor program that pairs newbies with veterans, maybe they have one for AS. My daughter goes to college with a girl that has arthritis - not sure which one. So, there are young arthritis patients and maybe your daughter could find a peer for support?
I hope something I wrote was helpful. Please keep us updated.
Thanks for your advice. You are absolutely right... it is not our problem to deny. Those words really ring true.
Robert said:
Hey Concern P,
Spondilitis can be a symptom a lot of Psa sufferers endure. Ankylosing Spondilitis can happen to anyone at any age. Unfortunately, if your daughter is a soccer enthusiast she may have had unnecessary trauma to her lower back and/or spine. She may have been born with a genetic predisposition that has made her more susceptible to spinal disorders/injuries. For instance; my sister has had four back surgeries including prosthetic discs and two cages. She does not play sports, has two master degrees and has always had a low impact type career.
As far as being in "denial", you just can't be. It's not your problem to deny. If the both of you act like it's not happening your daughter will too.
The problem with Psa and Ankylosing Spondilitis alike and, I'm sure other similar diseases, is the drugs you take may make you feel better. Sometimes to a point where you think you don't need them anymore! That's what we all hope for. In reality that is not going to happen. You may go months or even years with no physical symptoms but, inside your body is still fighting for control....one day you get a sore back....one day your get tired for no reason...the next day you're at the Dr getting x-rays and being told your spine is fusing together and you either need to take drugs or need surgery. Not only can you not play soccer but, you can't bend over to put your socks on.
Your daughter can try different medication. Most Drs prefer enbrel over humira for instance. She may be able to get off MTX and just take Humira or Enbrel alone.
The biggest mistake I made was thinking I could do NOTHING different! Albert Einstein said; "the definition of insanity is doing the same thing over and over again and expecting different results."
Thanks for the great advice. Our inclination (and my daughter's) has been to keep her moving and active within reason, so it was really nice to hear that someone concurs.
Yes, those message boards sound like a mess and we will steer clear. I actually found some of them, and that was what attracted me to this one... it was so upbeat and supportive, and not a wallow.
Yes, she is HLA B27 negative. That's why it has been so hard to swallow. What exactly are seronegative spondlyarthropathies?
Your advice on swimming is a good one-- she is naturally active and athletic and knows it is important to keep active. Unfortunately her passion is competitive, highly physical, aggressive soccer (and no, this is not the soccer mom speaking. She truly owns it.), and she is not ready to let it go. Here's my question.... the other day she announced that she was just going to "push through the pain" and get back out on the field and work herself back into it. Is this dangerous? Obviously, at some point excruciating pain will slow her down, but if she can "push through it," is that ok?
Most of all, your best advice was not to drag her to a bunch of Drs. My mama lion instinct wants to take her to every Dr. in town until we hear what we want to. She told me enough was enough after 2 diagnoses (same-- A.S.). Now you said it. We'll stop, and deal with it.
Thanks-- your words mean a lot.
tntlamb said:
I wish I had an answer for you..... AS can and often is a seperate disease. Its is also the result of PsA in some cases. Either disease has been known after it originally rears its ugly head in young people to go into remission sometimes for years. There is a site for AS with forums including one for teens at: http://www.spondylitis.org/main.aspx
I would recommend YOU go their first. The educational materials are good but stay AWAY - FAR AWAY from the forums (the teen one isn't to bad) and especially keep your daughter away. The boards are full of bitter self centered self pitying folks whos day is spent one upping each others misery. Many have not been DFx'd at all and have self diagnosed thinking "it fits" many are opiad dependent and spend great deals of energy justifing it. only mention this because your daughter will find it.......
She may or may not be able to take a drug holiday at some point. Current thinking is to hit this disease hard and consistently early so as to prevent permanent damage.
I'm sure you are a "mess" who wouldn't be? I don't need to share my history now. but I know where you are at with having a kid with a potential life changing disease. As hard as it can and will be, you need to acknowledge it and move on. Push daughter to do the most all the time (in short as much as you want to hold her in your lap and rocker he and comfort her like she was three with a boo boo, you cant) With AS what doesn't move - rusts. BTW AS is not an old mans disease. It used to be called Young white mans disease. (seriously) You mentioned no genetic markers? I assume then she is HLA B27 negative? There are a large body of seronegative spondlyarothopies. Some come from a previous infection and actually with treatment in young active folk resolve themselves for years and years because of their ability to fight them.
If there is one piece of practical advice I could give you As hard as it is to be a club soccer parent there are worse sport. Swimming and Tennis come to mind. I say this because the most CRITICAL thing you can do is keep her active and moving. I know she loves soccer or she wouldn't be playing at the club level BUT she needs to develop a love for a lifetime sport that can keep those joints moving. (the is a saying with spondys what doesn't hurt doesn't work) But if you can get her in the pool, it would be wonderful (good conditioning for soccer anyway) she can keep it up for years and it will move and keep loose every joint in her body with very low impact. When she is not "doing well" acknowledge it but as painful as it is for you, kick her in the rear and get her moving anyway (you will learn to hide your tears) SHE MUST learn to fight through it. AS can defeat you and you can fight back. And while be natural for some women to be a nag (thats a joke) you need to be one. Posture is critical.
For her well being don't haul her to a lot of doctors the words may change but the treatment will not. The meds you mentioned are "state of the art" treatment is always individual anyway. They keep trying until they get a combo that works. I have worked with a young man who has been taking rermicade infusions since he was 9. He just signed a letter of intent for a top FCS football program. This disease is not an end just the begining of a new. BTW these kids they are better at this stuff than we old folks. They adapt way better than we do.
Thanks-- your right, denial does not help anyone. I too had a similar chat with her rheum. wherein he told me that meds and managing arthritis conditions have progressed incredibly in the last 15 years. Let's hope progress continues on that pace, and that the long term affects of these medicines is not problematic (something to consider when the patient, like you and she, are so young.) Thanks for your concerns
xvanex said:
These diseases, like AS, are chronic and they are life long. The disease itself will never just go away. The symptoms can be controlled or managed to different levels of success depending on the patient. It is impossible to know how it will be for your daughter and the uncertainty is one of the worst parts of these diseases. Yes, she will most likely be on some sort of medication the rest of her life. It may not be humira and methotrexate because even those can stop working at some point, but thats a whole other story. If her symptoms are controlled at one point she may go into a sort of remission and have times where she is feeling better, there will also be times when she feels worse and needs to take more medications. No one knows what is going to happen. But you cannot stay in denial!!! This is real, it is happening to your little girl, and she needs you. You cant be in denial because that is not going to help her. It takes getting used to but you and her can still have a happy life. I was diagnosed 2 yrs ago at age 23. I asked my doctor what would happen to me when I got older or how I would deal with psoriatic arthritis the rest of my life. She told me: "honey, by the time you are 60 there could be a cure for all we know." and that could be true, so keep some faith and be strong for your daughter.