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#277061 - 01/13/17 12:28 PM New diagnosis for my daughter and terrified
Basicallyamy Offline
Registered Visitor

Registered: 10/06/16
Posts: 2
Loc: California
My daughter was very recently diagnosed withe peripheral spondylarthritis. The more I read, the more terrified I am for her and the disease seems to be progressing at an alarming rate. At her initial diagnosis in late September, she had some stiffness and pain in her right elbow and had just had minor surgery on her right knee. She now has total right side involvement, has started experiencing symptoms in her left side as well as some lower back and pain in both hips. There are days she can't even get out of bed until she applies heat to both her elbow and leg for an hour or so. The doctor she was seeing tried to sell a dual diagnosis of this AND RA and we are currently seeking a second opinion. She was initially treated with steroids and methotrexate oral but was switched to injections for the chemo when the oral had no effect.

My question is, is her symptom progression typical or should I be alarmed at how fast it's moving? I have yet to find any real information on a prognosis based on her symptom progression. If anybody could point me at some comprehensive information I would be very grateful.

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#277078 - 01/16/17 08:36 PM Re: New diagnosis for my daughter and terrified [Re: Basicallyamy]
WhiteCell Offline
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Registered: 05/31/10
Posts: 1319
Loc: Whidbey Island WA
I imagine that you have her seeing a pediatric rheumatologist so it's key to ask these questions to that doctor. Sorry she (and you) are suffering. There are excellent resources in California. Are you located near a city?
_________________________
Since 18 years old - began as Reiter's Syndrome. Diagnosed with Ank Spon 2001. Remicade since 2002 - 5mg/kg every 7 weeks. 8 hour Tylenol and hot tubs for pain.

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Trabeculectomy/lens replacement 2006.
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#277087 - 01/17/17 12:28 PM Re: New diagnosis for my daughter and terrified [Re: Basicallyamy]
Ericsmom Offline
Registered Visitor

Registered: 10/28/07
Posts: 235
Loc: Ventura County, CA
Sorry your family is dealing with this @basicallyamy! It is scary when your child first receives a diagnosis.

You are lucky she has been diagnosed as this is a disease that often goes years before a doctor recognizes it. We feel like we are lucky in a way that our son had a major flare with visible swelling as it forced his doctor to recognize that something was wrong and send him to a Children's Hospital. He had been having painful heels for a couple of years which the doctor attributed to over-use in sports. Turned out it was one of the first symptoms of his AS (enthesitis). So when he was first diagnosed, he was having a major flare like your daughter.

Like your daughter, he was also given methotrexate (MTX) as a first try along with an oral NSAID. The MTX had no effect, which is not unusual in kids with AS, but at least in our case, our insurance required that he try it prior to moving on to other meds. In his case, he was finally put on a biologic, TNF-blocker injectable drug (Enbrel). We were worried about this class of drugs and did a lot of research before he started, but in the end came to the conclusion that the inflammation he was experiencing would eventually cause joint damage if it wasn't brought under control.

Enbrel (and the Humira he later switched to and still uses) turned out to be miracle drugs. He went from having difficulty walking to being able to take part fully in the sports he loves. He has been on anti-TNF drugs for 10 years now and has had no side effects to date. He has regular blood tests to monitor any side effects. Of course he has days where he is stiff and achy, but as long as he incorporates a lot of stretching into his morning routine, he is functional.

Each case is different and only your rheumy can tell you if your daughter's case is progressing at a high rate. If you are not already seeing a pediatric rheumy, try to get into a children's hospital for a consult. Children with AS are often treated differently than adults and may even be given stronger doses of meds than adults as their bodies metabolized the meds differently. While many areas don't have pediatric rheumies, you should have access to one if you live near a major city in Calif. Most of the major areas here have at least one.

Best wishes and hopes for a speedy diagnosis!

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#277113 - 01/22/17 03:10 AM Re: New diagnosis for my daughter and terrified [Re: Basicallyamy]
Basicallyamy Offline
Registered Visitor

Registered: 10/06/16
Posts: 2
Loc: California
Sorry I should have been a little more in depth with the background I provided. My daughter is 18 and 2,500 miles away from me. My oldest has Down syndrome and I relocared to California after he graduated high school so he could take advantage of the wonderful programs out here. She chose to stay behind in Ohio with her father. The area we are from is extremely rural and there just aren't many RA doctors in the immediate area. It's been an uphill battle just getting her to agree with going to a larger university hospital a couple hours away for a second opinion. Her father has zero interest in helping her through this and she is still dead set on staying in Ohio so my hands are tied. She's 18 therefore I have zero say in her medical decisions anymore.

I've been reading about biologic but am not encouraged because of the potential side effects. I realize though that she needs to get thsee symptoms under control before her joints are permanently damaged. It's just all so frustrating and scary!

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#277143 - 01/25/17 05:58 PM Re: New diagnosis for my daughter and terrified [Re: Basicallyamy]
Ericsmom Offline
Registered Visitor

Registered: 10/28/07
Posts: 235
Loc: Ventura County, CA
This has to be very frustrating for you to watch from a distance! 18 is a tough age because, like you said, you have no control over her medical decisions. The process of taking control of AS can be time consuming - seeing doctors a lot at first until a good treatment plan is agreed on, etc.- and most 18 year olds are not willing to deal with it. Add her location and the lack of rheumys to the mix and it is even worse! There is probably not too much you can do unless she decides that she wants to pursue treatment more aggressively.

I will say that my son has been using biologics now for 10 years- he started at age 11 and is 21 now- and has had virtually no side effects. I know everyone is different, but he has regular blood tests and is monitored by his rheumy. His ankles were so swollen when he was diagnosed that he couldn't walk with out them hitting each other. He plays soccer and was on hold because he couldn't pivot his hips to kick. Enbrel and Humira have worked well for him and if you didn't know him, you would not know he has anything wrong. He still has stiffness in the mornings and after any inactivity, and he has had minor flare-ups, but in general he is doing very well. It sounds like you will have to wait for your daughter to decide that her condition is painful and inconvenient enough for her to want to seek more treatment. Best wishes to you!

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#278610 - 07/20/17 12:59 AM Re: New diagnosis for my daughter and terrified [Re: Basicallyamy]
scaredmom Offline
Registered Visitor

Registered: 07/21/13
Posts: 37
Getting to the point of a diagnosis is slow of AS or other spondylosis can be a long process. Part of the reason for this is that response to treatment is part of the diagnostic process. But the range of treatments are similar regardless of the name put on it. I hope in the months that have passed you have gotten more information. A dual diagnosis is not uncommon because people with autoimmune disorders often have more than one, but it may be that the doctor is simply saying more than one possibility she is considering. Getting a young female diagnosed and treated is a gift. I would be hesitant to turn my back on the first doctor. The next might discount her symptoms. If she has rheumatoid factors in her blood RA is a simple diagnosis, but AS has no such blood tests.

As far as the disease "progressing at an alarming rate" that may not be the case. It sounds like your daughter is have a severe flair. From week to week or day to day her symptoms may vary considerably. Additionally, your daughter has probably suffered for years silently. Now that her pain has been validated she may be sharing more, without the pain being that much more significant than past episodes. I know my daughter seemed worse but reported being better. When I challenged this she explained that she is just telling me more but hurting less.

BTW my daughter first started symptoms at 11 or 12. I remember she could not bend over for her 5th grade scoliosis test. I brought her back to doctor several times. He discounted her symptoms time and time again. So she stopped complaining not hurting. At age 17 I discovered how much Aleve she was taking and insisted on a Rheumatologist referral. I really thought she had fibromyalgia. We left that first appointment with three or four possibilities, but treatment for all was the same. And I should mention our pediatrician continued to say nothing was wrong with her rejecting the diagnosis. I thank God that he led us to this rheumatologist who did not immediately have all the answers but started treatment. My daughter is now 21 and in her second year of grad school. Her symptoms are managed well, but ever present to some degree. The last few months have been awesome, but at Christmas she could not button her own dress. That is AS. But as my daughter says, "I have AS it does not have me. It will never be who I am."

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