Re: BECKY__ Sjogren's Syndrome

[Guest guest]

Hi Becky,

I'm Helen, from NW Ohio. I don't have SS, but I do take Plaquenil for SLE. Plaquenil is a harse drug. It took my system almost 6 months to adjust to it. The nausea and vomiting were the worse for me. I still have some of the minor side affects but that you learn to live with when its actually helping. My SLE is in remission at this time and it has also seemed to have helped the fibro and CFS. I have been on it for over 4/5 years. I do have to have my eyes checked every six months as it is known to cause blindness, since I only have one eye they keep a close watch on that. The plaquenil doesn't work right away, it took over 3 months before I finally noticed a difference. I was able to walk better and was able to stay out of my wheelchair permantly by the 4th month. I almost stopped the med several times as it made me so sick, but the doc kept encouraging me to go on and I'm so glad I did. I still live in pain daily, as you can see by my ailments, but its all acceptable pain to me. I have built up a high tolerance to pain as I won't take pain killers, ( my heads loopy enough, I don't need narcotics to help it )) Hope this helps somewhat.

((( Happy Hugs )))

Helen

(angelbear)

..

My Ailments:1 Mitral Valve Prolapse2 Hyperthyroid/Graves Disease3 Hyatal Hernia4 Acid Reflux5 Fibromyalgia6 Chronic Fatigue Syndrome7 Systematic Lupus Erythematosis8 Migraines9 Poly Neuropathy10 Osteoporosis11 Idiopathic Edema12 Hypertension13 Degenerative Arthritis14 Restless Leg Syndrome15 Arrhythmia's, different kinds16 Emphysema17 Myofacial Pain Syndrome18 Temporo Mandibular Joint Disorder19 Hypoglycymia20 Irritable Bowel Syndrome21 Poly Myalgia22 Corneal Leukoma23 Chronic Sinusiis24 Paroxysmal Supra Ventricular Tachycardia25 Cataracts

Greetings...I have a friend with SS and she is struggling with the pain. She was given a medication called Hydroxychloroquine (Plaquenil). Due to the severe side effects her Rheumy reduced the dosage to half. As more time goes by she feels much more fatigued than before her Dx. He then had her take it twice a day and she got the bad side-effects back. She is back to taking half dose once a day. He also just Rx'd Salagen for the dry mouth. Does anyone relate? Any sharing is appreciated.Becky

[Guest guest]

Hi Helen,

Thank you so much! I really feel bad for you with the 25 aliments/diseases. I thought my friend had a lot of medical problems. This will sure make her feel less alone in all this. She will be 60 in Nov. She got rectal bleeding from the plaquenil so if she stays on it she'll need to stay a a half dose amount.

Besides SS She also has:

1) Graves Disease (Had Graves in her 20s and 30s)

2) Hypothyroidism (Possible Hashimoto's although no antibodies but a tiny thyroid so her Endo just calls it hypothyroidism.)

3) Hiatal Hernia

4) Acid Reflux

5) Fibromyalgia

6) Chronic Fatigue Syndrome

7) Hypertension

8) Hypoglycemia

9) Irritable Bowel Syndrome

10) Cataracts

11) Asthma

12) Many allergies that cause hives

Also, she has swollen lymph nodes in her head and neck. It is difficult for her to chew and swallow. Her one ear hurts constantly. She also has thyroid tissue outside her gland that no one cares about. Her doctors tell her there is nothing they can do.

I told her to ask for Castleman's Disease testing after researching it. The lymph nodes have been swollen for almost two years giving her headaches, too. She has had biopsies of the lymph nodes and thyroid tissue, both was benign.

SLE has been ruled out by several Rheumy's.

We live near Spokane WA, she went to an Otolaryngology surgeon in Seattle, and he said she has a stealth infection. None of her doctors can find a hidden infection.

I found scientific research that correlates that too little T3 can cause asthma. She's trying to get her Endo to increase her Cytomel. She's only had the asthma the last two years.

Also, I told her to ask for further Lyme's testing as her CD57 count is low at 45 (60-360). Her doctors say it is not that low. I question that. Good Grief!

I think her largest drawback is finding competent help.

Again, thanks for your time.

(((Hugs to you)))

~Becky

>> Hi Becky,> I'm Helen, from NW Ohio. I don't have SS, but I do take Plaquenil for > SLE. Plaquenil is a harse drug. It took my system almost 6 months to > adjust to it. The nausea and vomiting were the worse for me. I still have some > of the minor side affects but that you learn to live with when its > actually helping. My SLE is in remission at this time and it has also seemed to > have helped the fibro and CFS. I have been on it for over 4/5 years. I do > have to have my eyes checked every six months as it is known to cause > blindness, since I only have one eye they keep a close watch on that. The > plaquenil doesn't work right away, it took over 3 months before I finally > noticed a difference. I was able to walk better and was able to stay out of my > wheelchair permantly by the 4th month. I almost stopped the med several > times as it made me so sick, but the doc kept encouraging me to go on and I'm > so glad I did. I still live in pain daily, as you can see by my ailments, > but its all acceptable pain to me. I have built up a high tolerance to > pain as I won't take pain killers, ( my heads loopy enough, I don't need > narcotics to help it )) Hope this helps somewhat.> ((( Happy Hugs )))> Helen> (angelbear)> > > .> > > > > My Ailments:> > 1 Mitral Valve Prolapse> 2 Hyperthyroid/Graves Disease> 3 Hyatal Hernia> 4 Acid Reflux> 5 Fibromyalgia> 6 Chronic Fatigue Syndrome> 7 Systematic Lupus Erythematosis> 8 Migraines> 9 Poly Neuropathy> 10 Osteoporosis> 11 Idiopathic Edema> 12 Hypertension> 13 Degenerative Arthritis> 14 Restless Leg Syndrome> 15 Arrhythmia's, different kinds> 16 Emphysema> 17 Myofacial Pain Syndrome> 18 Temporo Mandibular Joint Disorder> 19 Hypoglycymia> 20 Irritable Bowel Syndrome> 21 Poly Myalgia> 22 Corneal Leukoma> 23 Chronic Sinusiis> 24 Paroxysmal Supra Ventricular Tachycardia> 25 Cataracts> > > Greetings...> > I have a friend with SS and she is struggling with the pain. She was given > a medication called Hydroxychloroquine (Plaquenil). Due to the severe side > effects her Rheumy reduced the dosage to half. As more time goes by she > feels much more fatigued than before her Dx. He then had her take it twice a > day and she got the bad side-effects back. She is back to taking half dose > once a day. He also just Rx'd Salagen for the dry mouth. > > Does anyone relate? Any sharing is appreciated.> > Becky>

[Guest guest]

Thanks, Helen.

Yes, I will keep encouraging her to seek out competent help. The five Rheumys

she has already seen tell her she definitely doesn't have Lupus. Her ANA tests

are always negative. The only test that was positive (but just slightly

elevated) is the SSB/LA. She has done about 10 lab pages full of tests, many

were antibody tests. What tests confirmed your SLE/Lupus Dx?

My hubby told her to not to get hung up on what it is called but to push her

doctors to get it under control.

To wellness!

(((Hugs to you)))

~Becky

> >

> > Hi Becky,

> > I'm Helen, from NW Ohio. I don't have SS, but I do take Plaquenil for

> > SLE. Plaquenil is a harse drug. It took my system almost 6 months to

> > adjust to it. The nausea and vomiting were the worse for me. I still

> have some

> > of the minor side affects but that you learn to live with when its

> > actually helping. My SLE is in remission at this time and it has also

> seemed to

> > have helped the fibro and CFS. I have been on it for over 4/5 years. I

> do

> > have to have my eyes checked every six months as it is known to cause

> > blindness, since I only have one eye they keep a close watch on that.

> The

> > plaquenil doesn't work right away, it took over 3 months before I

> finally

> > noticed a difference. I was able to walk better and was able to stay out

> of my

> > wheelchair permantly by the 4th month. I almost stopped the med several

> > times as it made me so sick, but the doc kept encouraging me to go on

> and I'm

> > so glad I did. I still live in pain daily, as you can see by my

> ailments,

> > but its all acceptable pain to me. I have built up a high tolerance to

> > pain as I won't take pain killers, ( my heads loopy enough, I don't need

> > narcotics to help it )) Hope this helps somewhat.

> > ((( Happy Hugs )))

> > Helen

> > (angelbear)

> >

> >

> > .

> >

> >

> >

> >

> > My Ailments:

> >

> > 1 Mitral Valve Prolapse

> > 2 Hyperthyroid/Graves Disease

> > 3 Hyatal Hernia

> > 4 Acid Reflux

> > 5 Fibromyalgia

> > 6 Chronic Fatigue Syndrome

> > 7 Systematic Lupus Erythematosis

> > 8 Migraines

> > 9 Poly Neuropathy

> > 10 Osteoporosis

> > 11 Idiopathic Edema

> > 12 Hypertension

> > 13 Degenerative Arthritis

> > 14 Restless Leg Syndrome

> > 15 Arrhythmia's, diff erent kinds

> > 16 Emphysema

> > 17 Myofacial Pain Syndrome

> > 18 Temporo Mandibular Joint Disorder

> > 19 Hypoglycymia

> > 20 Irritable Bowel Syndrome

> > 21 Poly Myalgia

> > 22 Corneal Leukoma

> > 23 Chronic Sinusiis

> > 24 Paroxysmal Supra Ventricular Tachycardia

> > 25 Cataracts

> >

> >

> > Greetings...

> >

> > I have a friend with SS and she is struggling with the pain. She was

> given

> > a medication called Hydroxychloroquine (Plaquenil). Due to the severe

> side

> > effects her Rheumy reduced the dosage to half. As more time goes by she

> > feels much more fatigued than before her Dx. He then had her take it

> twice a

> > day and she got the bad side-effects back. She is back to taking half

> dose

> > once a day. He also just Rx'd Salagen for the dry mouth.

> >

> > Does anyone relate? Any sharing is appreciated.

> >

> > Becky

> >

>