Re: Nsaid Question from a Newbie

[Guest guest]

, No ? is stupid. Get another opinion as soon as posssible. I cant take

nsaids either. ( wreacks havoc on my innards) I have spondy's also so I

know what a _b@#$_ (mailto:b@#$) * it is.Your 9 yr old cant tell you that.

He knows somethings wrong & he's probly scared. I was scared to death at

first, then really pissed at all the medical doctors that had NO CLUE what I

was even talking about.You know your son....act accordingly. Marty

[Guest guest]

,

It saddens me to hear about your son but never think a question is not

welcome. 

I was a very fit Air Force officer when I deployed to Africa and that is when

my life changed.  when I was first diagnosed I sought natural remedies, some of

which provided relief.  However, this illness is devastating and at times seems

to adapt or more specifically progress.  initially I refused to take

prescription medication, that lasted two years now I have decided that I will

take what I need take so I can be more like I was prior to the illness.

Depression is normal when your life is not in phase.  This illness causes you

to rethink your life and what your future will be like.  Gone are the days of

running a half-marathon ad here are the days filled with shots, pain killers,

and other medication.

I do not want to depress you but i would recommend getting a second opinion and

ensuring you sons illness is properly managed.  No one knows him like you so

keep going until you feel his needs are satisfied.

God Bless

Maj. von Hacker III (ret) USAF

________________________________

From: lisamariemedin <lisamariemedin@...>

Sent: Wed, January 20, 2010 11:35:36 PM

Subject: Nsaid Question from a Newbie

 

I hesitate to ask a question in fear that it's asked a million times by newbies,

but I can't find any recent posts relating to my question. I have a 9yo son who

was recently diagnosed with spondyloarthropathy . So far he's been on naproxen

which caused heartburn, reflux and shortness of breath episodes after a month.

The doctor offered a prescription Prevacid, but it makes me nervous to give him

additional drugs. I'd rather see if there's something else that works better for

him.

Next she switched him to Indomethacin and we just took him off it after a week.

He progressively experienced depression symptoms through the week and last night

was sobbing uncontrollably and didn't know why.

The only option our pediatric rheum has given us is additional Nsaids. We are

going to seek an additional opinion.

In the meantime, have any other parents been in our position and what are some

other options? Perhaps I shouldn't be scared of the antacid but he has other

health issues and I want to keep his diet/intake as natural and non-taxing as

possible.

Thank you!

[Guest guest]

- From one mother with a spondy child to another, don't be afraid to

explore every option for your son.  Psoriatic spondylitis runs in my family so

I knew what was wrong with my daughter before any doc would " risk " such an

unusual diagnosis.  You have a diagnosis which is a definite plus. Take it and

get a second, third, fourth and fifth treatment opinion if necessary. I've been

on NSAIDs for over 20 years and am so glad there's so much available as stomach

protection.  I have tried several and they all prevent the ulcers like I had 20

years ago.  My dad used Indocin for years without stomach meds and eventually

it destroyed not only his stomach but also his kidneys so be careful with that

stuff.  My motivation for taking lmy daughter to an out-of-state doc for

treatment recommendations was my great response to Enbrel.  It stops the

relentless progression of this disease for us and I didn't want my daughter's

joints damaged because she has her

whole life ahead of her.  She's now in grad school pursuing research into

inflammatory arthritis.  She still has problems and must take extra care of

herself but she is following her dream thanks to effective meds. Finding a good

rheumy for your special needs is hard.  Not many pediatric rheumys I know, but

often an " adult " one is willing to look at child.   He's your son - fight for

him.

From: lisamariemedin <lisamariemedin@...>

Subject: Nsaid Question from a Newbie

Date: Wednesday, January 20, 2010, 11:35 PM

 

I hesitate to ask a question in fear that it's asked a million times by

newbies, but I can't find any recent posts relating to my question. I have a

9yo son who was recently diagnosed with spondyloarthropathy . So far he's been

on naproxen which caused heartburn, reflux and shortness of breath episodes

after a month. The doctor offered a prescription Prevacid, but it makes me

nervous to give him additional drugs. I'd rather see if there's something else

that works better for him.

Next she switched him to Indomethacin and we just took him off it after a week.

He progressively experienced depression symptoms through the week and last night

was sobbing uncontrollably and didn't know why.

The only option our pediatric rheum has given us is additional Nsaids. We are

going to seek an additional opinion.

In the meantime, have any other parents been in our position and what are some

other options? Perhaps I shouldn't be scared of the antacid but he has other

health issues and I want to keep his diet/intake as natural and non-taxing as

possible.

Thank you!

[Guest guest]

Yes, check out any possibility for a drug-withdrawal reaction, but then also

remember that sometimes the symptoms pile up and seem so overwhelming that

one does become despondent and weep and worry that you will always have this

kind of pain. Been there, done that, many times.

Ray Neal in Washington State

[Guest guest]

My heart goes out to the 9 year old boy who has to deal with this for no fault

of his or anyone's. I agree with everyone that we have to take the matters in

our hands and the monster by its head. The medical community is far behind in

knowing what this illness is about and how to treat it. Those of us who suffer

have to find ways to deal with it and share our collective knowledge to help

each other.

I know Juvenile Rheumatoid Arthritis is a condition that is being looked at

seriously. Even though your son may not have JRA, he may benefit from some of

the drugs used for JRA. See if any of the DMARD class of drugs will help. Find a

good pediatric rheum who is aware of the developments in the area. Also, do not

be shy to suggest new treatment approaches that make sense. Good luck to you and

your son. Our prayers are with him and I hope he finds relief soon.

________________________________

From: Carol Lee Dunn <carolleedunn@...>

Sent: Thu, January 21, 2010 11:05:32 AM

Subject: Nsaid Question from a Newbie

 

Hi ,

You said, " He progressively experienced depression symptoms through the week and

last night was sobbing uncontrollably and didn't know why. " I'm no expert but

this sounds like a withdrawal response to being taken off a medication. I did a

quick check on Indomethacin and found that it can cause nervousness. Again, I'm

no expert but this sounds to me like this drug can have an impact on brain

function, so the question is to what extent can it affect some people and can it

cause withdrawals? I would ask your pharmacist about this possibility. What I

can tell you is that we are not always given full information about the drugs we

take. There is an entire online community of thousands of people

(www.paxilprogress. org) who were prescribed SSRI antidepressants and have to

take years to taper off of them because of the severe withdrawals. (Not saying

this is the fate of your son; first it's not the same kind of drug and second,

even with SSRI's if you only took

them for a few days, the best thing to do is stop cold turkey and wait it out.)

They have been fighting for withdrawal warnings from the FDA and no one will

listen. It has gotten to the point that some doctors and pharmacists are

becoming aware of the problem through patient reports but the medical journals

and the FDA are still turning a blind eye to it. Bottom line, not everyone

responds to medications the same way - some are more sensitive than others and

we are not given enough information about this. If your son is going through

withdrawals, he needs to know that is what is going on so he can come to terms

with it. The reason I know about all of this is because my son has been tapering

from Paxil for over a year now. A psychiatrist diagnosed him with a mood

disorder and prescribed it for him because of self harm behaviors. I have since

learned that self harm behaviors are not uncommon in children with disabilities

- it is a coping mechanism that

should have been treated with counseling.

I have learned that any time a doctor wants to prescribe a new medication, find

out the name before you pick it up at the pharmacy and research, research,

research. This lesson was reinforced for me last summer when my allergist

prescribed Levaquin when I didn't respond to his first choice antibiotic and

because he knew I am on immunosuppressants. When I picked up the prescription,

it came with two extra pages of warnings and strongly advised against taking if

you have joint problems. I looked it up on the internet and found out there is a

class action lawsuit against it for causing spontaneous tendon ruptures!

Luckily, the FDA was taking action on this one because I would have never

thought to check into an antibiotic before taking it.

You might want to post what state you live in and see if anyone can recommend a

good rheumatologist. Finding a good one is hard. I struggled with Spondylitis

for four years before I found a rheumy who could even diagnose me. I lost track

of how many doctors (including rheumatologists) I went to looking for answers

and the diagnosis should have been easy considering my history of UC. If my son

started having problems, I would take him to my doc w/o hesitation unless he

could refer me to a pediatric rheumatologist he trusted.

Good luck !

Carol Lee

[Guest guest]

Thank you everyone, for your encouragement. It's such a relief to hear that

it's OK for us to want to persue other avenues to relieve his pain. Our doctor

is acting like we're nuts for questioning her treatment plan. We are looking

for a second opinion. Thank you again, I'm so glad to have found this group.

>

> From: lisamariemedin <lisamariemedin@...>

> Subject: Nsaid Question from a Newbie

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> Date: Wednesday, January 20, 2010, 11:35 PM

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> I hesitate to ask a question in fear that it's asked a million times by

newbies, but I can't find any recent posts relating to my question. I have a

9yo son who was recently diagnosed with spondyloarthropathy . So far he's been

on naproxen which caused heartburn, reflux and shortness of breath episodes

after a month. The doctor offered a prescription Prevacid, but it makes me

nervous to give him additional drugs. I'd rather see if there's something else

that works better for him.

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> Next she switched him to Indomethacin and we just took him off it after a

week. He progressively experienced depression symptoms through the week and

last night was sobbing uncontrollably and didn't know why.

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> The only option our pediatric rheum has given us is additional Nsaids. We are

going to seek an additional opinion.

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> In the meantime, have any other parents been in our position and what are some

other options? Perhaps I shouldn't be scared of the antacid but he has other

health issues and I want to keep his diet/intake as natural and non-taxing as

possible.

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> Thank you!

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[Guest guest]

When a doctor doesn't want you doing your own investigating, that's a sign of a

doctor you should be running from. A good doctor will take the time to discuss

things you have found on your own and explain why they do or do not agree with

them. Unfortunately, those good doctors can be few and far between. There

seems to be alot of ego in the medical community.

Your situation also reminds me of my situation with my old primary. I kept

telling him about the pain I was experiencing and he would just say, " come back

in six months and we'll see how you are doing. " Eventually he started trying

different medications. He finally told me that arthritic conditions can go hand

in hand with Ulcerative Colitis. And that was it. Basically, an attitude of

" I've tried every pill I can try, deal with it. " I was prescribed alot of

drugs I didn't need to be prescribed and they all either made me sick as a dog,

just didn't work or worked for a short time and then I built up a tolerance for

them. I finally found my hero rheumatologist who diagnosed me with a quick

blood test and x-rays and immediately started treating me with the correct

medications for my condition. But again, not just any rheumatologist will be

the answer. I went through a few of them, and one of them I know provides the

same treatments I get because I knew a girl on his staff, yet he still missed

the diagnosis. My mother told her rheumatologist about my situation when I

finally was diagnosed (He had been my primary years ago, before my insurance

changed.) and he said that he hated the idea of anyone being on those

medications because of the risk of contracting tuberculosis. I can't help but

wonder if that was the concern of my old primary and that is why he didn't send

me to someone who could help me. If that is the case, it's not his body and

he's not the one who has to deal with the pain and it wasn't right for him to

make that decision for me. When I finally found my Rheumatologist, he said my

C-Reactive Protein was as high as his most severe cases. I wonder if my old

primary even ran that blood test.

How is your son doing?

Carol Lee

[Guest guest]

Thank you so much for taking time to give me your history and try to impart some

hope! I am so sorry for all of your struggles, sometimes it's so hard to

understand the whys.

>

> Hi and

>

> I have lived with Ankylosing Spondylitis and Rheumatoid Arthritis for roughly

37 years and like you folks, I did not want a pile of drugs to weigh me down at

the time. I was finally properly diagnosed in 1984 by a Medical Review Board at

Worker's Comp. The Board consisted of a General Practitioner, Rheumatologist,

and gave me the news. I was devastated, as a Radiological Technologist I knew

what the diseases were and really even in 1984, there was not a lot of treatment

options and I knew the prognosis for the rest of my life. I went into a deep

funk and thought my life was over. I was medically retired that day no if ands

or buts about it, Dr. Baker, who was also a good personal friend, he knew that I

knew what the prognosis was and it wasn't good.

>

> I started off on NSAIDS and Tylenol #1's, but after a few months my stomach

was killing me so my doc ordered an Upper GI. Then a day or two later my doc

called and told my that my surgeon was waiting at the ER for me and as he got to

the end of that he said, " We think you have a malignancy in your stomach. The

got me admitted then and there so I spent 7 days in the hospital and had my

stomach checked out with the scope three times. While doing them they took

samples for biopsy and my surgeon le t me look at the pictures of my stomach and

it sure looked malignant to me. It looked like some of the british during the

bombing in WW 2.

>