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Daughter newly diagnosed: Many questions
#267033 06/09/14 09:25 PM
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My DD, now 21, started getting leg and knee pain three and half years ago, followed by back pain. During this time, she saw 49 different doctors as we looked for an answer to this while addressing other problems. I am sure it is not a surprise to those on this board that overwhelmingly the vibe we got from doctors was that it was all psychosomatic.

Last week we went for the first time to a rheumatologist and unexpectedly walked out with a diagnosis. He is 90% sure from her hx and his very thorough physical exam she has spondylarthritis, undifferentiated for now. He is testing her for HLA-B27 and she will have the pelvic Xray done before we see him again in two weeks. This diagnosis makes so much sense that one wonders why one of the many doctors before didn't suspect it or at least refer her to a rheumatologist.

In addition to leg, knee and back pain, she has a lot of stiffness in her back and neck. She has heel pain and has had plantar fascitis. She has recurring pain under her ribs, occasional shortness of breath, and frequently has night fevers and sweats. It is all much worse when she is sick or has a fever. At those times she can walk only with a cane and has very forward leaning posture.

We were so stunned to receive a diagnosis that we asked few questions of the doctor, who in any case spent an hour and a half with her.

So here are some of my questions. She has other symptoms and I am wondering to what extent they may reflect the SA. These include severe insomnia, high anxiety, and chronic nausea and vomiting. The latter began two years ago and has worsened though she takes Zofran three times a day. She has had an endoscopy and an MRI of her abdomen, which show nothing. Her GP has scheduled a gastric emptying test and a barium swallow, but I am wondering if these two also will show nothing if the nausea and vomiting are related to the SA. I'd appreciate any views on these symptoms as possibly related to SA.

My other big question is what to expect in the way of treatment. The rheumy gave her Celebrex and some tylenol and codeine to take until she sees him again. He also ordered PT. I am leery about the codeine owing to addiction concerns, but everything I've read is that is indeed painful and some relief is called for in at least the very short run. Can I expect the rheumy to talk to us about immediately starting the biologics? Even if the Celebrex and tylenol with codeine bring some relief, they would not seem to alleviate the progression as biologics would.

When I read about these treatments I can't find criteria for first using them. If they do help stop progression, it would seem to me one would get on them as soon as possible. But perhaps you have to reach a degree a certain level of dysfunction first; I am not sure what degree of dysfunction compared to others with this disease my description conveys. Perhaps it is also pertinent that the rheumy is very confident in his dx without having done a single test.

My DD has not been able to go to college or get a job as it is difficult for her to walk for any length of time and she is often exhausted--I'd thought from the insomnia, but I am sure now the illness plays a role as well. It is her dream to go to college in the fall, and if biologics could get her there I'd want to get on them as soon as possible.

Thank you for any insights you can provide.

Re: Daughter newly diagnosed: Many questions
SAMum #267036 06/09/14 10:03 PM
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There is a form of spondy, called enteropathic arthritis, that ties in with IBD (inflammatory bowel disease, such as Crohn's disease and ulcerative colitis). You will also find that sometimes we spondies have IBS (irritable bowel syndrome) along with the spondy. Stress and anxiety can cause GI issues too, and I would imagine your daughter is dealing with a good bit of stress related to the pain itself, not knowing what is going on, and not being taken seriously.

While the Tylenol with codeine is strictly for pain relief, the Celebrex is an anti-inflammatory and will actually help with the inflammation in her body. NSAIDs such as Celebrex are often the first treatment offered by a rheumy. I can't speak for other countries, but assuming you are in the US, there is no set protocol for which medications are offered first. It depends on the rheumy and what he thinks will work best for a particular patient.

There is a very specific criteria that must be met to be diagnosed with ankylosing spondylitis (AS). I can't rattle it off the top of my head, but you can do a search to find it. The pelvic x-ray will tell the rheumy the condition of the sacroiliac joints, which is part of the criteria. You haven't mentioned psoriasis or psoriatic arthritis (PsA) so I assume your rheumy is not considering that as a diagnosis. In some countries you do not qualify for biologics with a diagnosis of undifferentiated. In the US, the doctors can usually get a biologic approved for most any form of SpA.

You mention that your daughter is often exhausted. Fatigue is a major symptom for many spondies. Fatigue can come from not being able to sleep well because of pain, but it can also come from the inflammation itself. Hopefully once the rheumy has established a treatment plan for her and the inflammation is brought under better control, the fatigue will lessen.

If it is decided that her insomnia is not coming from the pain and fatigue, her doctors may decide at some point to do a sleep study. It's possible she could have sleep apnea.

I know it's a lot to have thrown at you all at once, and you and she are probably feeling pretty overwhelmed right now. Just know that things are moving in the right direction and that things will not always be as bad as they are right now.


Ginny - 58 year old female
Dx with USpA in March 2013; changed to AS in July 2015
Iritis and Scleritis, both currently in remission
unicompartmental knee replacements: right-June 2014, left-Aug 2018
MTX, Humira, Cyclobenzaprine, plus Celebrex as needed
Supplements: Folic Acid, Vitamin A, Vitamin D, Calcium, Fish Oil, Culturelle probiotic, Melatonin (as needed)
Re: Daughter newly diagnosed: Many questions
SAMum #267040 06/09/14 10:56 PM
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Hi,

I can't provide much information as I am learning from Spondylitis and AS myself. I know it's not easy to see our daughters struggle through the pain this condition brings. I have an 18 year old daughter that struggled with pain since the age of 15 and we didn't get answers. She cried and got frustrated because the doctors didn't seem to believe her. But I didn't give up and saw her pain and we insisted she was sent to a Rheumatologist in Seattle. Being that said they gave me the referral probably because I already had the condition and it could be hereditary. With just a one visit and having revised all her records from previous doctors the Rheumatologist diagnosed her with Juvenile Ideopathic Arthritis. She turned 18 in December and her diagnosed has been changed to spondylitis. She has been on Humira since she was 16 and it has helped her a lot, She also uses Plaquenil and some other inflammatory medication. I really admire her determination to not let this condition stop her. She is an active sports person. I wish I had her determination to do exercise like she does. I'm in so much pain I can barely clean the house. She also has completed her first year of college. It wasn't peaches an creme but she made it with good grades.

All I can say as a mother and as a patient is that you being by her side as you are will be your best medicine for her. I wish you both the best in this new journey. It wont be easy but just to have an answer and know that your condition is real does take some weight of our shoulders. It will take a little time but the important thing is to never give up. I really hope Remicade works for her and that she can be in College sooner than expected and achieve all her dreams so that you can enjoy by her side those wonderful moments.

Kind regards.


Rosa Sanchez 50 yrs - I was diagnosed with Spondylitis (AS)Jan.2011 and HLA-B27+, Acid Reflux, high blood pressure, Meniers Disease,Fibromyalgia, Pre-diabetic. (Allergic Ultram(Tramadol), Indocin, Toradol, Topomax, Oxy,Diluadid, Remicade, Aspirin and NSAIDS not a choice for me)I have failed ,Embrel, Simponi, Remicade Humira (Once)But just started again on a weekely basis with a new doctor.(Lets hope it helps)
Re: Daughter newly diagnosed: Many questions
SAMum #267041 06/09/14 11:05 PM
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Thank you for your reply.

We are in the US, so we will not be bound by a set protocol, but rather by what the rheumy thinks is best. You are right--no psoriasis. She's been to a GI for the nausea and vomiting but the GI doctor didn't think she had anything like IBS. (She has a cousin with Crohn's, however.)

She's had a sleep study and came out with central (not obstructive) sleep apnea--the sleep doctor wasn't sure why, saying older chronic pain people like those with fibromylagia sometimes get that result. We said she did have chronic pain and he looked at her then 20 year old self with great skepticism. At some point the study may need to be redone. I have been trying to limit these tests as much as possible as just getting her to the doctor is exhausting; so often she just doesn't feel well and wants to cancel.

I am very eager, as is she, to just get on with it now that we know what it is. Her life has been stalled for over three years at this point, which is a very long time for someone her age!

Re: Daughter newly diagnosed: Many questions
SAMum #267042 06/09/14 11:29 PM
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Even in the US there is a treatment protocol unless of course you are paying out of pocket. Step therapy has been the rule for many years now. There are three steps. You are in step one. The next step will add a DMARD medication, that will be about a 3 month trial. Depending on the results there she will either have a biologic added to the regime or go strictly with a biologic and no concurrent DMARD. As biologic treatment knocks the door at 40 grand a year, it very rare to get around the step procedure,. and frankly its not necessarily the worst thing.

I don't mean to sound discouraging but its going to take some time as even with successful medications they take time to work. Most of them take several months. Even the stage she is at now can take a week or two to kick in fully. There are bridge medications to make things go easier until the regular therapies kick in.

If she has AS, PT will make a huge difference (less so with some of the other autoimmune arthrises)Not only with her movemant but fatigue, sleep, and even attitude(s).

Re: Daughter newly diagnosed: Many questions
SAMum #267043 06/10/14 12:27 AM
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Welcome to the forum and as a parent, I can only imagine how difficult this has been for you. NSAIDs can be difficult on the gi system, but some people tolerate them well and that's all they need for their spondylitis. Fatigue is an issue for a lot of us. Easier said than done, but for me getting the right amount of sleep, reducing stress and keeping active (I spin, yoga, light weights, etc) makes a huge difference in my pain level. Also a good diet helps, especially for my gi issues. these forums are great. you also can call the SAA 800-777-8189 and meet others in person at an Education/Support Group. I bet once she finds a treatment plan (which probably includes meds & exercise) then she will be off to college and managing to have a great life. Hang in there. She's blessed to have empathetic parents. oh, p.s. sign up for the eSUN on this site to stay current on spondylitis.


AS, U C, Iritis, migraines. HLA-B27neg. Yoga (instructor) & spin. No meds at this time. Dx 1989. SAA member/donor since 1993. All my posts are personal opinion/feelings and do not represent the SAA. Help find a cure & support others by donating to the SAA.
Re: Daughter newly diagnosed: Many questions
SAMum #267044 06/10/14 01:18 AM
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I will chime in where others left off, particularly with the gastric emptying. I was diagnosed with IBS as a teenager and struggled for 20 years with the associated diarrhea/constipation cycle. After having constant problems with little relief, my gastroenterologist ordered a gastric emptying test last August. I simply abstained from food for 12 hours (overnight), and went to the clinic and ate a prepared breakfast of eggs and toast. The usual breakfast is beef stew, but I am a vegetarian, hence the other meal. At timed increments, usually every 10 minutes, an X-ray was taken of my stomach to see if the contents were progressing through my stomach into my intestines. Sadly, after 4 hours, the food was still mostly in my stomach! I am now told to be on a very liquid heavy diet. If I eat more than a few bites of anything, I often feel sick to my stomach, sometimes to the point of vomiting. I try to eat very two hours, not a lot mind you, but enough so that food will not sit for too long in my gut. I hope this bit helps you and your daughter. Best wishes!


Iritis/uveitis
GERD
Ankylosing Spondylitis
Condochondritis
Skin Rash
Arthritis in distal appendages
Enthesitis
Gastroparesis

Meds-
Remicade infusions
Tramodol
Hydorcodone
Cyclobenzaprine
Re: Daughter newly diagnosed: Many questions
Mama_Wicks #267048 06/10/14 03:05 AM
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Thank you for all the kind replies and encouragement.

I am particularly appreciative of the explanation of the steps. I am so new to this, I thought DMARDs were a type of biologic!

So it looks like the next step is a DMARD, assuming that the NSAIDs don't help much. I am arranging for PT, which I think will be very helpful. The rheumy said part of what he saw was from lack of movement--he kindly added that he totally understand that moving caused pain so she wasn't moving much but it was making her muscles contract, worsening the pain.

A couple of doctors previously wrote scrips for physical therapy with no specification. Basically a sop for what they saw as a psychosomatic illness. I didn't follow up because PT is a hassle and difficult and I knew would be hard to motivate her. But the new doctor wrote a highly specific scrip and explained just how PT would help so she's looking forward to it.

Re: Daughter newly diagnosed: Many questions
SAMum #267050 06/10/14 04:42 AM
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"These include severe insomnia, high anxiety, and chronic nausea and vomiting"

-Insomnia: I not so fondly call my insomnia "painsomnia", because it is usually pain that keeps me up. When you're in pain, it's difficult to fall asleep, difficult to stay asleep, and difficult to get restful sleep. Insomnia surely plays some role in her fatigue, but inflammation likely does too.

-Anxiety: There's a correlation between chronic pain and anxiety and/or depression. Nothing specific to the spondyloarthropothies so much as to what frequent or constant pain signals do to your brain.

-Nausea & Vomiting: I would definitely go through with the gastric emptying & barium swallow, as it can rule in or out several possibilities. Also, I wasn't sure from your post above if you're aware that IBS and IBD are two different things. Your daughter's cousin with Crohn's has a form of IBD - inflammatory bowel disease. There is an increased incidence of IBD with spondyloarthropothies. IBS is irritable bowel syndrome, and is unrelated to IBD, though they often present similarly. IBD is more serious and can be life threatening when uncontrolled, because bleeds, blockages, and other serious situations can arise. IBS is not inflammatory or autoimmune in nature, and to my knowledge, doesn't have a relationship with SpA, though they can certainly occur simultaneously. I have IBS and Psoriatic Arthritis, for instance. Stress and lack of sleep cause both conditions to flare for me, so from that standpoint, they can seem linked to one another.


Mary, 25, happily married pro photographer, momma to 2 great danes.
Dx: Psoriatic Arthritis, Fibromyalgia, Psoriasis, Sjogren's, IBS, Hiatal Hernia, & possible Endometriosis.
Meds: Stelara, Methotrexate, Relafen, Omeprazole, Lyrica, Tizanidine, Voltaren Gel, Tramadol
Re: Daughter newly diagnosed: Many questions
SAMum #267052 06/10/14 01:58 PM
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The insomnia could be related to spondylitis. One characteristic of spondylitis is increased pain and stiffness at rest. It becomes a vicious cycle - you are exhausted and trying to sleep but the pain and stiffness keep you awake or waken you from sleep. At the same time, lack of sleep,can lead to increased perception of pain. Even if she is experiencing insomnia for some other reason, the sleep deprivation can increase her pain perception.

Anxiety is not a symptom of spondylitis per say. However, many people with chronic illnesses or unexplained medical issues experience increased anxiety. I know that she sees enough doctors already, but she may benefit from seeing a good psychologist - both for the anxiety and to deal with the significant life changes that chronic illness has on a young person's life. All three of my kids (all with some form of spondylitis) have benefited greatly from seeing a psychotherapist.

Nausea and vomiting is also not really a symptom of spondylitis. However some conditions related to spondylitis can cause nausea and vomiting. Others have mentioned IBD and IBS, and the differences between the two. Mama_Wicks mentioned delayed gastric emptying/gastroparesis. Your daughter's GP may have ordered the gastric emptying scan for that reason. The current thinking about gastroparesis is that there MAY be a relationship between GP and Spondylitis in pediatric patients. That same relationship has not been identified in adult patients. Although your daughter is 21, it sounds like her disease had been active since she was 17 or 18 which may give her some pediatric characteristics to the disease. Doctors Jolley & Islam at Shand's Hospital (University of FL) and Doctors DeLorenzo & Teich at Nationwide Children's (Ohio State) have done the most research on this issue. Even the best adult Rheumatologists and Gastroenterologists may not be aware of this relationship. I would suggest contacting her GI about this issue. GPs are great, but they are generalists. Yours may not be familiar enough with gastric emptying issues to make the best use of the results of the gastric emptying scan or even know enough about the protocols if the GES to know if it is done correctly - many GI doctors do not have this knowledge. (GI Motility sub specialists do.). By the way, the consensus "standard meal" for the gastric emptying scan is scrambled egg whites, toast, and jelly *with, of course, technetium-99. The gold standard scan is 4 hours. Some hospitals follow different protocols, but the bulk of the research - and thus the data - follows this standard.

tntlamb mentioned the standard treatment protocol for biologics. Your daughter's doctor may follow that protocol or may skip ahead to biologics. That decision will be based on many things including your daughter's lab and imaging results, response to medications, response to PT, severity of disease activity, the doctor's confidence with the diagnosis and comfort level with the biologics. Requirements of her insurance company will also be a factor in the decision. My daughter was offered Remicade at diagnosis. We opted to pursue other treatment options before moving on to Remicade 6 months later. Both of my sons were started on Humira immediately upon diagnosis. One thing to keep in mind is that all of these medications take some time to begin to show efficacy - weeks to months. It is tempting to try to rush through the process, but try not to. I have seen so many patients rush through the process looking for that magic medication - many hurt themselves in the end.


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