To Debra in NY

[Guest guest]

,

I'm glad we can share info because it seems we have similar symptoms with

this awful disease. Most people don't seem to experience the mouth problems like

we do. It's bad enough to have arthritis but to have it in your mouth makes it

100 times worse in my opinion.

I did some snow cleaning activities over the weekend and I am paying for it

big time. I feel like I'll drop dead anytime today. Exercise is brutal for me,

even if I only do a little. I did manage to get to work though, and I'm going

to nap after this and finish my work later. I work half days at home.

I am just curious as to whether reiters caused your heart problems. I seem to

get palpitations and heart area pain when I get flares. It feels kinda weird.

Have you ever experienced this? If I get a really severe flare and they don't

give me a depo-medrol shot, my heartbeat gets faster and faster and I get

extremely fatigued. They haven't found anything wrong with my heart, although I

haven't had special testing done. THey did those blood works ups, like

Cardio-CRP, etc. and all were normal and I've got 203 cholesterol. What clues

did you

have when your heart started giving trouble?

I've only had reiters (diagnosed) for about 7 years, so I wonder what shape

I'll be in in a few more years. How long have you had this disease? The last

year has seen a significant worsening for me, especially with all the bone/joint

pain I get now....and overall fatigue if I do anything out of the ordinary,

even vacuuming can be trouble at times. I seem to get never-ending flares. I am

desperate for a new treatment. Someone told me you can get minocin online

without a scrip, so if worse comes to worse, I may give it a try. Celebrex is

definitely becoming worthless for me.

I will look into the MSM. Does that react with other drugs that you know of?

I take Valtrex too. I am always concerned about taking herbal stuff as I know

someone who got very sick from one of them. I only take a multi vitamin and

the chelated iron supplements. My hemoglobin went really low after they took 14

vials of blood a week ago, maybe that's why I feel so awful after doing the

snow work. It depresses me to think I could spend the rest of my life feeling

like this all the time.

My prayers to you too...seems you are onto a good drug combination.

Debra!

[Guest guest]

Debra-

Have you been diagnosed with pleurisy before? Does the pain worsen

when you breathe in or breathe out? I have had chest pains on and

off for several years. Every time I would have them, I would go see

my cardiologist (I have pulmonic stenosis and mitral valve prolapse)

but, after doing the EKG/ECHO/Stress test, I was always told the

pain I was experiencing was not heart-related. Finally, I was told

in ER that perhaps I had pleurisy. My pain usually worsens when I

breathe out so I would practically pass out from taking such shallow

breaths. I saw a pulmonary specialist to rule out specific

disease/injury but it all came down to pleurisy. NSAIDs were very

effective at first, but after several years, they just didn't help

as much. Maybe you should talk to your doctor about it if you are

sure it isn't your heart.

Annette

[Guest guest]

Hi Deb!

I am back from my trip. Last question you had for me before I left was if I were

a scientist. No! I don't consider myself a scientist. My degree is in analytical

engineering, and since I have never done

research in any field, I could not be part of a Scientific Society. This however

may change,due to my illness (RS) and my retirement last year. I have been doing

a lots of research, and have joined

over the internet Harvard post-graduate studies.

It has always puzzled me, why if this medications that our Rheumys recommend and

put us on don't do their job. Considering that all medicine are combination of

chemicals, are we not poisoning our

system specially when they don't help, or help only minutely? I am making this

the main theme of my studies.

On the personal note, my mouth sores are still under control (for which at

present I take no meds)

and everything else (diabetes, heart problem etc.) is OK. In the last 10 years I

have not felt as good as now. I am still a strong believer in supplements. Best

wishes and good health.........john

[Guest guest]

Dear ,

Thanks for thinking of me...I am still not better... on pred...12mg/day and

celebrex and valtrex....and still get lesions in my mouth, throat and maybe

even my gut. I've lot 20 lbs and am having some hard time eating to survive.

My rheumy quit on me and was quite nasty to me on the phone. HOwever, he let

me come in for a visit today and he's trying to get me an appt with someone

else. I saw an oral patho who first said they were apthous ulcers and then

decided it is geographic tongue. Well then, why does it only occur when I get RS

attacks? And down my throat and in my belly too?

I may have geo tongue but for some reason RS attacks make it sore. I am in

hell to say the least, just trying to get thru each day. My rheuym would not

give me stronger meds or change them until someone tells him these sores are

from

RS. Well, he's been treating them for 7 years as such, and they always went

away, except this time, it took so long to treat that I lost all this weight,

probably making it more difficult to get well. I need a strong

anti-inflammatory to get rid of this. Pred gives me tons of side effects,

including weakness

and tremors and I think it makes my mouth more acidic for some reason.

Anyways, I am praying to get an appt with another doctor soon. They told me 4

mos but I talked to them and they are trying to get me one sooner.

Glad you trip went well and that you are feeling well. Please pray for me.

Your friend...Debra

[Guest guest]

Dear Debra!

You poor kid. You really are in Hell. Your rheumy is lucky that he is not my

doctor. I am sure I would not put up with his arrogance and dare I say

stupidity.

You are a very brave and courageous person. God will bless you for your

patience and your suffering. You are always in my prayers.

Your friend..........john

Re: To Debra in NY