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Re: FOR sheryl re your message of july 7th

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Jill,

Thank you for sharing with me.

I want to make sure that everyone understands that I am researching

this for my husband. I'm trying to find out all I can for him. We

read the emails we get, and I type back any responses.

Having explained that, I would like to share more information about " US " .

It is true that we are wondering how he got this.

We have been married for 31 years and were both virgins when we did get married.

I know neither one of us have had a STD/VD infection.

We are aware that it can be caused from food poisoning. We just don't

have an actual incidence we can say " this is what caused this " .

We feel for certain that this has been going on for about 4 years.

Preston (my husband) being the " tough " man he is, has had small flare

ups, but just thought he had little cases of the flu. He never

considered anything else wrong.

It wasn't until late April this year that he started to have one of

his bouts with the flu, when on the 3 day of having just aches and

pains he came down with a severe case of diarrhea, stomach cramping

etc. This went on for 10 days. Our kids and grandkids had mild cases

of the same thing, but it only lasted for about 5 days.

During this bout of the flu, the aching started do get worse that

usual. By week 3 it was very obvious something was different. He had

severe pain in his right knee, and his left shoulder. He couldn't

sleep, and he moved like an 80 year old.

There were no other symptoms.

Blood test show he is HLA B27Pos.

He started on Lodine late June while waiting for a DX. It has given

him a little relief. Before a complete DX was made, he also went on a

6 day course of predisone. That helped immediately. The doctor then

made his DX at the end of the predisone course, reactive arthritis,

and said he would not keep him on it because of all the side effects.

He was going to put him on Humira immediately.

He had his first shot a week ago today.

I don't know why he doesn't have conjunctivitis or urethritis. He can

only recall one time back in early April of have a slight burning

sensation. It only lasted for a few days. Again, it is hard to know

when he ever felt bad, because he NEVER complains. That is why I know

something really bad was going on when he did start to say he didn't

feel good.

I hope this isn't to rambling on. It is hard to put all of our

thoughts together and write about it.

Right or wrong, this is what has happened up to today.

He is feeling slightly better since the shot. His knees don't hurt

very much, and the shoulder pain is easing up some. His biggest

problem is lack of sleep. He usually wakes up around 1 or 2 having

pain in his shoulders and doesn't sleep much the rest of the night.

Any comments on this would be appreciated. We want to be educated about this.

Thanks again for sharing with us.

Sheryl

On 7/17/07, spiderisfab <spiderisfab@...> wrote:

> I Have Reiters, and admittedly I had the three things that made the

> docs test me for it....1. Conjuctivitis 2. Sever joint swelling

> and pain. 3. Urethritis.

>

> I also have HLA b27Pos which is a marker for Reiters, However, you

> mention that If a person has Urethritis that its from an STD( or VD as

> you stated) I have never had STD/VD and Ive been told by my specialist

> that you can get Reiters from Food poisining(which happened to me) I

> also know i never got an STD because myself and my husband were both

> virgins..... Reason why I am letting you know this, is I believe that

> you will be worrrying how u got the problem..... I wonder if others of

> the group have mentioned this to you(havnt had time to read all

> messages) I hope this helps you in some way but I do beleive you have

> been slightly misguided in how someone can get Urethritis.... I am

> assuming of course that you have Reiters disease??

>

> Jill UK

>

>

>

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Sheryl, any number of germs could have caused ReA. It does not have to start

with an UTI or STD infection.

<<Reactive arthritis usually develops 2-4 weeks after a genitourinary or

gastrointestinal infection. Recent evidence indicates that a preceding

respiratory infection with Chlamydia may also trigger the disease. About 10% of

patients do not have a preceding symptomatic infection.>>

The above snip-it mentions a " bout with flu " can trigger it. Seems that

might have happened with your husband.

I wish for him to have good results with the Humira. I was on it for about 2

1/2 years. The first years was the best for me...pain levels went down at

least 80%...felt better than I did for many years. It had a very good side

effect for me....lowered my BP. If it isn't Reiter's syndrome, he might have

another one of the Spondy diseases....some are surprised when the inflammation

starts in the shoulder or knee, but it can be common before it hits the SI

joints in Ankylosing Spondylitis. It seems most men start in the SI joints, but

there are others who don't. It could also be what they call undifferentiated

spondy. The treatments is very much alike. Those with the UTI problems are

given antibiotics for the initial germ...if it is given within a certain length

of time. Hope he has great results. Best wishes, Connie

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Well, I now see that the respiratory infections was from an STD...but the

article went on to mention several other triggers that aren't STD related.

Should have just put the article up for you all to read.

<<Enteric infections can be the triggering event for reactive arthritis.

Pathogens include Salmonella, Shigella, Yersinia, and Campylobacter species.

The

frequency >>

_eMedicine - Reactive Arthritis : Article by J Lozada_

(http://www.emedicine.com/med/topic1998.htm)

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Hi Sheryl

Your husbands history is really typical of the occurrence of ReA and other

spondyloarthropathies. I know that my AS progress was much the same. There was

never a solid hint as to what was happening for the first 10 to 12 years of my

going without a diagnosis. Your husband is lucky that he can get Humira this

quickly. Most of us never had that type of opportunity as the drugs in that

drug classification were just not available then. In fact, Naprosyn was a new

drug when my AS was diagnosed.

As for the sleep problems, join the club. I have been on various sleep aids

over the last 35 years and not one of them helped much and a couple caused some

major problems with sleep walking. I have found that if I stick to my

medication regimen properly I do not need the Zopiclone that my doc put me on.

I will only take some about once a month usually when my sleep pattern gets way

out of whack. I have found that if I take my daily dose of Prozac (40 mgm) and

my daily dose of Elavil (50 mgm) before I go to bed, things work out ok. Those

drugs along with OxyContin are part of a Chronic Pain drug protocol and it, the

protocol, works very well most days.

Blessings

Fr. Dave

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Re: 50 year old with shoulder pain

You know, when my mother had rheumatic fever as a child, her father came down

with a terrible case of arthritis. The doctor gave him penicillin and it

cleared up overnight. Rheumatic fever seems to be a case of problems with strep

bacteria.

I wonder if your husband might have this kind of problem. He just doesn't sound

like a Reiter's sufferer.

Schembre

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Hi Sheryl,

My thoughts are with you and your husband--it is certainly a scary time when

you are recently diagnosed and don't know what to expect. My own experience

with Reiter's has taught me that this is a disease that just doesn't go " by the

book " . It is very frustrating to have seemingly weird symptoms that you know

have to be part of whatever the heck is going on, and be told that, no, this or

that has nothing to do with your Reiter's. It's also frustrating when the doc

keeps asking you things like why don't your heels hurt or why aren't your hands

and feet red and peeling... I have come to believe that the answer is that not

all of us ever have all the textbook symptoms of whichever spondy we have, and

the intensity of the symptoms we do get vary from person to person. I didn't get

the whole " triad " of primary symptoms at the same time; I had a stomach virus,

flu-type illness and about two weeks later, began to run a low-grade fever and

have abdominal pain. The next day, I

woke up with iritis. Cystitis followed months later, and it took 2 years for my

joint and tendon pain to start. During that time, I had other indications that

my immune system was running amok, like a sudden onset of dozens of warts on my

hands, most over my finger joints. It was a very strange time; I wasn't

diagnosed until after the arthritis started, although I knew I had some kind of

immune response disease because the iritis was chronic (and for me, continues to

be what I call my " controlling " Reiter's component.) I am often told I don't

have a " classic " case of Reiter's...when my rheumy is very exasperated, he says

I have the weirdest case he's ever seen of a very weird disease...

The bottom line is that Reiter's is a crazy disease that never read a medical

textbook. To the extent that you can, don't worry too much about what each new

symptom means. I'm glad that your husband is being taken seriously and is

getting started on an anti TNF drug. I hope his doctor will work with him to

prescribe something to help him get restful sleep; lack of sleep just makes

everything that hurts feel worse. Probably almost everyone on this list is

taking something to help with sleep so he shouldn't be shy about asking for help

with that.

Good luck--keep us posted on how both of you are doing!

Pat

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-Sheryl, I have been diagnosed with Reiters since the early '70's.

Brought on by Ulcerative Colitis. I was 21, and only hurt when the

colitis was active. I have since had Toxic Mega Colon, and had all of

my colon removed. But the infection had spread everywhere. The

Reiters use to go in remission for about 2 or 3 years at a time. Now

I am 58, and have had many health problems brought on by the

infection left by the colitis. I have permanant pain everywhere.

Going blind, and use an electric wheelchair. Need lots of rest, and

no stress. Over the years I have had my spleen removed, all of my

female organs, my left kidney, and my right one is going out on me.

My small intestines are almost worn out, and I have to eat soft or

liquid foods. I have skin staph infection, that never goes away, just

moves around. Like I said before, I am going blind, and have a lot of

pain in my eyes. My hair is falling out on top lately, and my

eyebrows are thinning too. I swell up with toxins and have to take

lasix, and yes I do have urethritis. Most of the medications to use

for Reiters I cannot take because of the kidney infections. I'm going

to try Methetrexate again, and pray it helps with the joint pain. My

little brother just started the pain in his back about 10 years ago,

and he's tried to commit suicide 4 times this year already. I told

him to thank God all his organs are not having to be removed too.

Hey,life is hard enough without continuous pain. I hope you get a

good doc, and agressive treatment before it takes over your life. It

will get to a point there is no more remission. God bless, and God

bless all of us with any of these immune diseases. It takes a strong

soul to continue on no matter what. I hope at the end of my life, 2

Tim. will be thought of, " She ran a good race to the end. "

son dlizabethf@...

-- In , " spiderisfab " <spiderisfab@...> wrote:

>

> I Have Reiters, and admittedly I had the three things that made the

> docs test me for it....1. Conjuctivitis 2. Sever joint

swelling

> and pain. 3. Urethritis.

>

> I also have HLA b27Pos which is a marker for Reiters, However, you

> mention that If a person has Urethritis that its from an STD( or VD

as

> you stated) I have never had STD/VD and Ive been told by my

specialist

> that you can get Reiters from Food poisining(which happened to me)

I

> also know i never got an STD because myself and my husband were

both

> virgins..... Reason why I am letting you know this, is I believe

that

> you will be worrrying how u got the problem..... I wonder if others

of

> the group have mentioned this to you(havnt had time to read all

> messages) I hope this helps you in some way but I do beleive you

have

> been slightly misguided in how someone can get Urethritis.... I am

> assuming of course that you have Reiters disease??

>

> Jill UK

>

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I'm not. Lance is.

dlizabethf <dlizabethf@...> wrote: -Sheryl, I have been

diagnosed with Reiters since the early '70's.

Brought on by Ulcerative Colitis. I was 21, and only hurt when the

colitis was active. I have since had Toxic Mega Colon, and had all of

my colon removed. But the infection had spread everywhere. The

Reiters use to go in remission for about 2 or 3 years at a time. Now

I am 58, and have had many health problems brought on by the

infection left by the colitis. I have permanant pain everywhere.

Going blind, and use an electric wheelchair. Need lots of rest, and

no stress. Over the years I have had my spleen removed, all of my

female organs, my left kidney, and my right one is going out on me.

My small intestines are almost worn out, and I have to eat soft or

liquid foods. I have skin staph infection, that never goes away, just

moves around. Like I said before, I am going blind, and have a lot of

pain in my eyes. My hair is falling out on top lately, and my

eyebrows are thinning too. I swell up with toxins and have to take

lasix, and yes I do have urethritis. Most of the medications to use

for Reiters I cannot take because of the kidney infections. I'm going

to try Methetrexate again, and pray it helps with the joint pain. My

little brother just started the pain in his back about 10 years ago,

and he's tried to commit suicide 4 times this year already. I told

him to thank God all his organs are not having to be removed too.

Hey,life is hard enough without continuous pain. I hope you get a

good doc, and agressive treatment before it takes over your life. It

will get to a point there is no more remission. God bless, and God

bless all of us with any of these immune diseases. It takes a strong

soul to continue on no matter what. I hope at the end of my life, 2

Tim. will be thought of, " She ran a good race to the end. "

son dlizabethf@...

-- In , " spiderisfab " <spiderisfab@...> wrote:

>

> I Have Reiters, and admittedly I had the three things that made the

> docs test me for it....1. Conjuctivitis 2. Sever joint

swelling

> and pain. 3. Urethritis.

>

> I also have HLA b27Pos which is a marker for Reiters, However, you

> mention that If a person has Urethritis that its from an STD( or VD

as

> you stated) I have never had STD/VD and Ive been told by my

specialist

> that you can get Reiters from Food poisining(which happened to me)

I

> also know i never got an STD because myself and my husband were

both

> virgins..... Reason why I am letting you know this, is I believe

that

> you will be worrrying how u got the problem..... I wonder if others

of

> the group have mentioned this to you(havnt had time to read all

> messages) I hope this helps you in some way but I do beleive you

have

> been slightly misguided in how someone can get Urethritis.... I am

> assuming of course that you have Reiters disease??

>

> Jill UK

>

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