Re: Canker Sores in Mouth / Tender Glands Under Jawbone / Dry Sinuses

[Guest guest]

i always have mouth sores im on folic acid daily and that anoying gland

under the jawbone pops out at least once every other week and last a few days

and

then leaves again but talk about painful you cant even touch it

[Guest guest]

Yes they could. I have seen several folks on this list that have

complained about them in the past. Welcome to the club of dry sinuses.

Mine started just around 2 years ago along with a sore throat. After it did

not go away with anti biotics of increasing strength they thought I might

just have some cancer back there in my nasopharynx and throat as I was a

smoker up until just before this started. A trip to an ENT doctor came

back negative for cancer but positive for things calcifying back there.

Some times it feels like continuing post nasal drip and can become

bothersome. That leads us to another member of this nice family of

diseases, Sjrogren's Disease (show grinz).

Now this is where my theory on this stuff comes in play. I am beginning to

feel that we all have one spondyloarthopathy syndrome, like the hydra of

Greek Mythology, it has many heads. All the members of the Spondy family

have so many things in common with each other, that I just toss my hands up.

To paraphrase what my doctor has often said, I have nothing wrong with me

that a total body transplant wouldn't cure. I am putting in bids on Govenor

Arnie.

Fr. Dave

[Guest guest]

Hi ..

My name is and I do not have Reiter's. I have AS. I have had problems

with the sores in my mouth. The ulcers....I was told, are caused when you use a

lot of NSAIDS. I have always used a lot of Indocin. My doctor tells me that

when I get the ulcers that I need to take Folic Acid. The Indocin depletes your

body of Folic Acid and that is what causes the ulcers for me..... Hope that this

helps.. I also hear that too much Vitamin C will cause the ulcers...

Good Luck,

in Cali.

[Guest guest]

Hey Paisano,

We all seem to have various symptoms. I imagine that out of our 600 or so

members there are a few who have the exact ones you listed and possibly a host

of others you have not listed.

I had mouth sores only once.

I do have that weird pain under the jawbone and also on my eye socket bones

....they seem to come at the same times...just for fun.

I have dry sinuses periodically. My sister brought me a nose spray product from

the UK called Sterimar. It is better than the Ocean spray because it is an

aerosol spray and really penetrates the nose. I thought is was gross at first

but it brings relief so now I kinda like it.

I hope this helps. Take care, , and stay in touch.

Love

from CA

P.S. I am writing in large print to help my eyes. Hope this is not a problem

with the archives. Let me know if it is.

[Guest guest]

Hil / Others:

Thanks. Despite my pain and symptoms, I still have not been labeled w/ RS or

AS!

I can not move this morning. Lower spine pain, heel pain, breatbone pain,

hip pain, dry crusty eyes, mouth sores, dry eyes / sinuses and swollen glands.

Starting to get sharp pains in right chest. Been to dozens of ID / Rheumie

doctors around the US. No on has said -- " Yeap it's Reiter's Syndrome " .

How much longer will I have to deal w/ this ? A life time? Will that be a

short life time? My work performance is suffering. My quality time is

limited to about an hour outside of my house. I'm in so much pain and can't see

to focus on anything but this pain / disease.

Fr. Dave: You've been very helpful over these past few months. Thoughts?

Drugs?

Best regards,

[Guest guest]

Hey Nicki.

Good to hear from ya! Hope all is well on your end.

I feel like I'm getting worse .. much worse. What bugs me most is the doctors

that have my medical records / tests / history / etc -- are not returning my

calls / request for appointments. Seems like they don't want to be bothered

w/ me -- " there's nothing wrong! "

Caio,

nicki jackson <njacksonbrown@...> wrote:

Hey Paisano,

We all seem to have various symptoms. I imagine that out of our 600 or so

members there are a few who have the exact ones you listed and possibly a host

of others you have not listed.

I had mouth sores only once.

I do have that weird pain under the jawbone and also on my eye socket bones

....they seem to come at the same times...just for fun.

I have dry sinuses periodically. My sister brought me a nose spray product from

the UK called Sterimar. It is better than the Ocean spray because it is an

aerosol spray and really penetrates the nose. I thought is was gross at first

but it brings relief so now I kinda like it.

I hope this helps. Take care, , and stay in touch.

Love

from CA

P.S. I am writing in large print to help my eyes. Hope this is not a problem

with the archives. Let me know if it is.

[Guest guest]

wrote " Despite my pain and symptoms, I still have not

been labeled w/ RS or AS! How much longer will I have to

deal w/ this ? "

Hi

Have you started on any drugs yet (e.g. methotrexate,

sulphasalzine or similar)? (You may well have and I am just

'out of the loop'.) Your best chance of improving is by

being on one of the 'disease modifying' drugs. And then it

often takes a few months to improve. Even without having

pinned down the exact type of inflammatory arthritis, if you

are suffering from one of these, the drug treatments are

pretty much all the same.

I'm really sorry to hear you're suffering so bad,

[Guest guest]

:

Thanks for your reply. I hope you're doing well.

I have not started on any drugs. I still have not be officially

diagnosed w/ anything - RS or AS. Though my rheumie did prescribe

Methotrexate w/ Folic Acid. I'm holding off a bit until someone can

tell me what's causing my symptoms.

I just had another PCR DNA test to see if I ever was exposed to

Chlamydia. That test was negative. Going to draw some fluids from

my knee next to see if there's any buggers hidding in my synovial

fluid. I hope to have that done by month end. In the meantime, I

feel like any day could be my last. I really mean it. I do not

mean to be so down / negative but that's the way I feel. Also, I'm

going to re-test for Enterococcus Faecalis this week to see if those

buggers are still living in my urinary tract / prostate. That's it

for now.

Have a good night!

Take care.

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[Guest guest]

Hi ,

I'll add my name to the canker sores list... I get them pretty frequently, and

have had them constantly since starting methotrexate 6 weeks ago, even though I

am taking folic acid every day. I get a new crop every week. Often they are on

my lips, which is pretty icky looking. Thankfully, I don't often get the really

bad ones. If you do get the large, extremely painful ones, you can ask your

dentist to paint them with silver nitrate. This can't be done routinely, though,

because it relieves the pain by killing the nerve endings underneath the sore.

Some dentists--and my allergist--also prescribe a mouthwash solution that the

pharmacy makes up for you. It has tetracycline in it and some other stuff to

coat the sore and reduce the pain.

My " sore glands " problem is in the parotid glands, usually the ones at earlobe

level. These are the glands you get mumps in.

I hope you feel better soon, . Take care--

Pat

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[Guest guest]

~

I have all of these symptoms and have experienced them for YEARS!

The canker sores are topically treatable with Gentian Violet (looks like

purple paint) or with Cure-A-Sore (Ether), both of which heal the sores

quickly and quite nicely. I've also had considerable success with

Valtrex. I first took it for shingles, but it worked so well on mouth

and nasal ulcers, I now keep it on hand to battle those break-outs.

The lymph nodes just under my jaw bone are always tender and most often

swollen. I've inquired about having the one on the right side removed

due to pain; however, the doctors don't want to do it. They've given me

no good explanation as to why they won't consider it and I am fearful it

will turn cancerous at some point. My father passed away last year with

chronic lymphocytic leukemia and his lymph nodes were enlarged and

painful in the same locations as mine. (Lymphatic drainage massage is

helpful once you get past the initial discomfort and a certified

aesthetician can do this for you in about 30 minutes.)

As for the dry sinuses, I experience those in conjunction with chronic

sinusitis and allergic rhinitis. Sounds like an oxymoron to have a

stuffy nose and dry sinuses, doesn't it? I've had to have my upper

sinuses drained (a TERRIBLE and painful procedure) and three sets of ear

tubes installed (due to fluid backing up in the Eustachian tubes)

beginning when I hit 30. Funny when you consider I never had trouble

with my ears as a child. I currently use a moisturizing nasal spray

and a decongestant which thins mucus and allows it to drain properly

without contributing to the drying of the sinus cavities. I also use

Neosporin on a Q-tip to moisturize around the nasal apertures. It helps

combat dryness and battle bacteria which, in turn, causes the dry

sinuses to itch and burn.

I get so frustrated that every time something goes wrong, the docs tend

to relate it back to the spondy; however, the fact is, it truly is

usually related in some fashion. This disease has so many symptoms and

manifestations we may never catalog them all! Good to know others out

there have similar experiences, not because we wish each other to suffer

~ far from it! ~ but because the commonality makes us feel less alone.

Take care and gentle hugs to all!

Blessed be!

(NC)

[Guest guest]

wrote:

> I get so frustrated that every time something goes wrong, the docs tend

> to relate it back to the spondy; however, the fact is, it truly is

> usually related in some fashion. This disease has so many symptoms and

> manifestations we may never catalog them all!

Well, after wondering for years what was causing our problems, once they get

a diagnosis in the Spondy family they will blame everything else on it. The

fact that 9 times out of 10 they are right does not sit well with us now

either. No doubt if I went in with an ingrown toe nail that would also be

chalked up to a spondy.

Well, I have decided to grow a full beard this year and now it is well

underway, finally looking something like one. But boy talk about zits from

ingrown whiskers. I thought they would never stop, and I had to get into a

couple of places and tweezer our a few of those really coarse black ones.

They tend to coil up just under the top level of skin and itch like crazy

and if you scratch them, " instant zit " . The beard looked a little,

no....... a lot ratty until this weekend, now it is beginning to look like a

beard and not like patches of fur seemingly not connected.

But if that is all I will have to complain about this winter, I will

celebrate.

This weekend has been wild as I have had problems getting enough sleep.

More later

Fr. Dave

[Guest guest]

Thanks Pat

Pat Long <kureouspat@...> wrote: Hi ,

I'll add my name to the canker sores list...

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[Guest guest]

Thanks

" , " <susansmith@...> wrote: ~

I have all of these symptoms and have experienced them for YEARS!

The canker sores are topically treatable with Gentian Violet

[Guest guest]

Hi

Me too. I have had Reiter's for 28 years, and the mouth thing started 5

years ago, when I was prescribed Methotrexate. I have been taking Remicade

for 6 months now (instead of MX), and the sores still continue. My life would

be a whole lot better if not for this. I have nice things to say about

Remicade. I have been suffering with Psoriatic symptoms along with the RS, real

gross stuff. Thank God for Prozac. I couldn't have handled this stuff without

it.

Immediately after my first infusion of Remicade ALL of it went away! I am

still in euphoria over this, changed my life completely. My wish is that the

rest

of you get a chance to try it. Stay strong, Harv in Michigan GO

TIGERS!!!!!

[Guest guest]

Hi

Sorry to hear that you are still feeling lousy.

Have you given any further thought to maybe going onto a course of drugs such as

Voltaren or Indocid - you may find like I did that they do take the edge off the

at times unbearable pain. You might find that you will have to try several

medications until one works for you..it is worth it believe me.

The type of pain that you are experiencing is not only harmful to your body but

your mind - it can, as Im sure you have worked out make you feel so depressed.

Try not to wait for a diagnosis before taking medication - it may never come.

You are possibly one of the unlucky ones whose condition cannot be clearly

defined.

Take care and please think about taking some medication to relieve your dreadful

pain.

Regards

[Guest guest]

Hi ,

I am so sorry you are having such a struggle. Please do not give up. I know it

can be so painful and terrifying to feel so bad. Moreover, it is " crazy making "

to not be taken seriously.

Keep in mind this disease does ebb and flow. There are many ways to work with

the symptoms without a diagnosis.

BTW, nowadays I try to get copies of my tests and other records before I leave

the MD's office so I don't have to count on the his/her office to send them to

any other MD's. I learned that lesson when a real *#@* of an MD never sent my

files on after 3 written requests.

It will take time but you will get better, . I see a professional counselor

(and I am a counselor myself) because I know for a fact (with me) that managing

my stress helps me to keep my inflammation down. Having an empathetic ear and

someone to help me plan a healing strategy really helps. Hang in there, .

Love,

in CA

[Guest guest]

Harv In Michigan:

Thanks. If you don't mind my asking, what's your age? You said

you've had RS for 28 years. What kind of work do you do? Did you

have to change careers?

I will look into Remicade / discuss w/ my rheumie.

Thanks again. I appreciate your insight.

in NY

(Go Yankees !!! Oh well - Go Mets.)

[Guest guest]

Nicki:

Thank you. Tonight was a BAD night. Lots of pain. Almost started to cry.

I really can't take this. I'm going to see my GI doctor tomorrow to see what

tests he can run on me that haven't bee run already.

Should I try the Methotrexate? I don't know.

Thanks,

[Guest guest]

Hi ,

My heart goes out to you. I am obviously not an MD. My words are only of a very

stubborn woman with ReA. I can only tell you of my personal experiences. My case

and symptoms may very different from yours. I have chosen to do other things

first to fight the inflammation for a few reasons:

1) Cancer runs in my family and I do not want to play with my immune system if I

can find other ways to get around it.

2) I am not disabled and can still get around.

3) I now seem to be able to control many symptoms with daily low doses of

NSAID's and steroid eye drops. My pain is tolerable and the inflammation is

under control.

4) I have been willing to pay the cost of and wait for the results from other

treatments/approaches to my disease such as acupuncture, Chinese herbs, fish

oils, high doses of Vit D, oral compounded micronized progesterone (not an

option for most men.) These things have seemed to have made a big difference in

my inflammation. But it took a least 3 months to just begin to see the results.

However, if I were to get another bad flare and was in dreadful constant pain

and/or my vision were at risk I would be less stubborn. If two well regarded RH

MD's recommended it, I would either bring out the " big guns " and experiment with

meds such as MTX, Humira Enbrel...what ever the RH MD's recommended first. Or I

might explore trying the 6 months of the double antibiotics but if in much pain,

I probably would not take a chance on getting the placebo in the formal study.

I sure hope this helps. Keep me posted.

My prayers are with you.

in CA

Re: Canker Sores in Mouth / Tender Glands Under Jawbone /

Dry Sinuses

Nicki:

Thank you. Tonight was a BAD night. Lots of pain. Almost started to cry. I

really can't take this. I'm going to see my GI doctor tomorrow to see what tests

he can run on me that haven't bee run already.

Should I try the Methotrexate? I don't know.

Thanks,

[Guest guest]

Nicki:

Thanks.

Glad you're feel OK. Keep the thoughts/ideas coming.

nicki jackson <njacksonbrown@...> wrote:

Hi ,

My heart goes out to you.