Tag Archive | Sjogren’s Syndrome

Rituxan #1

Apprehensive, that was me; you know how they say that nurses make the worst patients? Well. it’s true! Today was day one of Rituxan/Rituximab infusions and you’d think I’d never had an IV before! But, symptoms of lupus and Sjogren’s Syndrome had gotten too great to be controlled any longer with the Prednisone and Plaquenil I take.

My rheumatologist and neurologist decided that Rituxan® was the treatment that would benefit me the most and have the fewest side effects. Before starting the medication, the nurse drew blood, sent the results to my doctor and gave me two medications: Benadryl™ and a steroid. Both were intended to decrease the chances of a reaction:  So, that was the reason for increased restless leg syndrome twitching. IV benadryl was the culprit!

The first treatment was pretty smooth with only one disruption: the nurse needed to stop the infusion because my tongue became ‘tingly.’ That was an early sign of potential life-threatening reaction, so we decided to err on the side of caution and stop the infusion for a while. She resumed the infusion after about 20 minutes, but more slowly this time.

I spent the rest of the time; well, I had lots of things to do, but I slept-after I ate lunch at the infusion center. Yes, they delivered sandwiches to each large cubicle (@5′ x 10′), I sat in a reclining chair complete with television and heated blanket! I had brought books on tape, movies, Facebook, and twitter; but did I do any of those things? NO! I slept.

The next day, my skin was a little flushed, my doc said to observe it, but the flushing was gone by evening. So, all in all, day #1, no problems. I’m scheduled to have the infusions weekly x 4 then the doctor will reevaluate and determine how often in the future I’ll need them.

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Why is my mouth so dry that it is a speech impediment?

Why do I have a dry mouth? My mouth is so dry sometimes that it can become parched quickly and my speech isn’t always intelligible. There can be several possible reasons for a dry mouth, but it is more likely that you’ll have a dry mouth if you have an autoimmune disease. Swallowing and talking can be made more difficult if you have a severely dry mouth and if yours is a severely dry mouth, it is likely that you don’t leave the home without some form of liquid to drink. However, liquid doesn’t always relieve, or only relieves a dry mouth, temporarily.

1. Dry mouth (xerstomia) results from many things, including

  • medications
  • too much alcohol
  • the disease, itself: Remember that if there’s one autoimmune disease, there is very likely to be another. (Sjogren’s Syndrome) and lupus often go ‘hand in hand’ though it is not surprising for any of the autoimmune diseases to coexist.

If the cause of dry mouth is autoimmunity, the body’s immune system mounts an attack on itself, and in particular, on the exocrine glands. Exocrine glands are the mucous producing glands, the salivary glands or sweat glands.

There might be an attack on the salivary glands would effect and diminish salivary function and result in dry mouth: A dry mouth results in less saliva to bathe the teeth and this not being able to bathe teeth in saliva can cause the mouth to become a harbor for food and bacteria that form plaque. In turn, plaque can trap more food and bacteria until cavities form.

It is harder to understand how the decrease in the amount of saliva interferes with digestion. The digestive process begins in the mouth, very much aided by saliva, continues through the esophagus and stomach and intestines; aided in part by salivary glands.

These exocrine glands aren’t just involved with saliva production. The same is true of tear production. Many patients with dry mouth also have dry eyes due to lack of tears formed.

There is also decreased moisture so women might have painful intercourse.

Many people benefit from saliva substitutes or from medications. One medication which assists the body in creating more saliva is called Salagen®. A dietary assistant might be lemon drop lozenges that should be ALCOHOL-FREE AND SUGAR-FREE. They should be alcohol-free, because alcohol is drying and the lozenge should be sugar-free, because in a dry mouth, sugar can wreak more havoc than it normally does. Lemon drops are also tart and their tartness also serves to flush secretions from the salivary gland, thereby preventing stagnation of the fluid. In this way, saliva is consistently flushed out and painful infections (infectious parotitis) are prevented.

There are also chewing gums, gels and mouthwashes which sometimes give the feeling that there is more saliva, or some which cause the ‘salivary juices to flow.’

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An interview-WITH ME!

By Maria Mongiardo
Annie is sixty-two and lives with her husband, Rey, in Colorado. Over the years, she was diagnosed with epilepsy, secondary Sjogren’s syndrome, fibromyalgia, lupus, and now complication of these. She has her own lupus blog called The Lupua Guru – Her blog is for people looking for information and advice on lupus and caregiving. She has been living an extraordinary life and shares her inspiring story with us.
How was your diagnosis made?
First, I was first diagnosed with epilepsy at age twelve, but like any kid, I did not think I was ‘different.’ In ways I didn’t know then, that was the first time my life changed. My Father and Mother saw to it that all of my growing needs were met; also, I grew up in a small town with understanding and extraordinary classmates.
Then, one eve in my junior year my life changed forever-again: I was leaning over the tub to wash my hair, had a seizure and hit my head on the unforgiving porcelain as I lost control and suffered major third degree burns. Rumor has it, that my Father, every bit the attorney, grilled the plastic surgeon about his abilities to save my life. At that time, people usually did not survive burns that I had. It was not long after that that my parents arranged tutoring for me, since I had to miss so much school because of reconstructive surgery. Despite my burn scars, I went to the junior prom with the ‘big man on campus,’ class president, and football star of any gal’s dream.
Then, my life changed again when my Father died quite early in life and quite unexpectedly. (how many times can a life change?). I was too young to absorb the meaning of the loss of my father, though I eventually felt the impact and it became one of the greatest losses of my life. I had grown accustomed to more attention from Mom and all of a sudden that attention was rightly divided as she had the responsibility of raising and putting all of us through college.
Then my life changed again.I was diagnosed with Sjogren’s Syndrome while in college, when I had mumps a bit too regularly; an astute clinic physician diagnosed parotitis, a hallmark of Sjogren’s syndrome and referred me to ENT which confirmed After a lip biopsy and other tests a diagnosis of Sjogren’s was made when I was about twenty.
Mom took charge again and saw to it that the medications for epilepsy were changed because my seizures were not controlled. She wanted me to have the life that she and her husband had envisioned for me. Seizures stopped as soon as med changes were made and, boom! I went to nursing school, moved to Chicago and began to LIVE!
My life changed yet again when I was diagnosed with lupus in 2002. With this diagnosis, my rheumatologist explained that it was a mixed connective tissue disease, which knows no bounds as far as the complications I could experience, I was granted a full disability in 2003. We then moved to Virginia for a better job opportunity for my husband and refinished an old house. No sooner did the final coat of paint dry, than Rey called me and told me that he had lost his job. But another job opportunity awaited us in Colorado.
What is your support system like?
For many years I have had tremendous support from my husband who at times has had difficulty understanding what I have had to go through. But for the most part he has always been there as have several very close friends and family. But, it’s hard, because everyone has his/her own life. Part of my issues have been how I emotionally have had to deal with what others have thought of me. As I have gotten older those feelings have not subsided. So my support comes in spades from my tremendous husband and all the wonderful friends I have made along this journey called life.
What do you do for work now?
I co-moderate an online support group for osteonecrosis (avascular necrosis). I edit and review books, was a freelance writer for eight years for national nursing magazines and I have my blog at http://lupusguru.com where I use my background in nursing to discuss topics related to lupus and put them in words that are decipherable to the many who have lupus or the caregivers for someone with an autoimmune disease.
Anyone with chronic illnesses knows that keeping ‘ologists appointments, having regular diagnostic testing, filling medications and all the pressures of this, the physical therapy that may go along with this-can take up too much time or sometimes be a full-time job, making you feel like a perennial patient; not a good feeling!
Do you take any supplements?
I tried acupuncture, Chiropractic was minimally effective, special diets and counseling to get over the many losses I would experience in my life. Counseling was most effective until I found out that the counselor did not HAVE A LICENSE TO PRACTICE! I just tried started to try some essential oils, researched carefully by a nurse friend who knows of my medical condition. Massage only felt good for a short amount of time, but had no long lasting effects, so I am back to only medications.
How do you stay so positive?
I have some wonderful friends; and what is to be gained by being negative, anyway? One of my friends said to me once; “it’s okay to get on your ‘pity pot,’ once in a while;” but “you need to give it a statue of limitations.”
Has lupus affected your marriage?
Other than the recent financial problems, it has strengthened our bond. I was a real active, type A personality and Rey was a type B personality. Before we married, it was agreed that I would slow down a bit and he would pick his tempo up a notch. ! My having lupus has forced him to become closer to the type A mode, because he does all the shopping, all the cooking, most of the cleaning, yard and heavy work around the house: I’ve given him the honorary type A title! Those things (shopping cooking, cleaning, etc.) are things that I would normally do, that I used to be able to do, and would love to be able to do; and now, because I can only do them on a very good day. I feel less a woman, less of a wife. Men, please realize and understand that your wives may feel this, too.
Any advice for people who are married?
The advice I have is for couples who are considering marriage; think about those vows BEFORE you marry, and think how you would react if the ***t were to hit the fan. Really think about the “for better, for worse, in sickness and in health, forsaking all others, till death do us part” part. What if your caregiver got sick? What if you found yourself in the same boat as Rey and me? Claws can come out. During your marriage, something will, maybe not lupus, but something else, possibly more tragic or probably less tragic can happen. If you are not 100% sure that you’ll stick around, do not take the vows. It is not right, nor is it fair, nor is the LOVE real. Remember, it could be you who gets sick and needs help.
Do you have any advice for people with an autoimmune disease?
My advice for people who have an autoimmune disease is to hook up early with a good rheumatologist as soon as you can and learn as much as you can about autoimmunity. This does not need to be all-consuming, but can I suggest a few good reads? “The Lupus Book” A Guide for Patients and Their Families, “ “The Lupus Encyclopedia” by Donald E. Thomas MD and “In Your Own Hands” by Larry Berkelhammer, PhD. The last book is great reading for those who realize the power of the connection between the mind and the body, but ALL of the books are excellent and well sourced. On my these pages, soon, I’ll be writing a review of the 2 latter books.
Is there anything else you do to stay healthy?
I have become the worst at this. I always used to eat and sleep well when I was younger; well, sometimes I missed out on sleep when I partied too hard, but by and large, I was in good shape as a triathlete (Was I good? That doesn’t matter!).
I hooked up with a physician years ago who felt a strongly about the connection between the mind and the body, and it was in teaching one of his classes that I met my husband. But what do I do to stay healthy now? Not as much as I should; the caregiver in me makes sure the needs of others are met BEFORE I meet mine. I have learned how to tell my husband what makes up a well-rounded meal! I participate in “Silver Sneakers” classes, offered by many insurance companies. I know, that’s not enough, but I am also receiving physical therapy for an ankle replacement that I had last October 2013 that sort of precludes strenuous exercise.
Is there anything you specifically would like people on lupuschick.com to know about your fundraiser?
I would like people to know that we planned for our financial future BECAUSE we knew I did not have a great health history and because of my being a nurse, we had an idea of certain worst-case scenarios that could play-out. We knew complications could arise for which we’d need extra money. We planned for long-term care and thought we had most bases covered. But, as John Lennon said,‘ Life is what happens when you’re busy making other plans.’ We planed on unemployment for as long a year, but not three and a half years and we didn’t foresee bankruptcy!
The fundraiser we set up is on GiveForward, an organization based in Chicago. Their mission: to promote medical fundraising. We need to raise money for bills that relate to lupus, medications I take for lupus, Sjogrens and epilepsy and problems they can pose-or medications for them can pose. Our specific site is:
It is HARD is to appeal to you and to others who don’t know us for help. But, I know if the shoe were on the other foot I’d try my darndest to help others. There is something lupies do: we stick together! Can you help Rey and me start over by donating to our fundraiser? Can you forgo a dinner out, a night at the movies or a movie rental, a few lattes, and donate to our fund? We would be forever in your debt. We need money to pay for a move to where we think there will be more jobs and all relocation expenses, first months rent and security deposit. We know competition for jobs can be stiff; but at least there will be jobs. At our site, there is an online donation form, though, if you are uncomfortable with giving information online, contact me at anowlin7@gmail.com and I will give you my snail mail address. I NEVER thought I would be starting over at 62!
We’ve received donations from people we don’t know. That in itself is so heart-warming. that I don’t know how to express the feeling; but how do you write a ‘thank you’ note to someone you don’t know?
What would you like to see on a website such as lupuschick.com?
In addition to the tremoundously well-orgnized autoimmune/lupus and resource information, I would like to see a financial planning section and a WHY it is so important that people with lupus or another autoimmune disease plan for their financial future, no matter how big or small their income. I should think that CFPs would be only too happy to contribute and they might offer free consults. One last thing for all you lupuschick readers: plan, plan, plan, and revise that plan.
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Talk about a huge slice of humble pie!

It happens. Unfortunately, Rey (my husband) and I have run into a string of bad luck starting with my lupus which resulted in osteonecrosis and Shrinking Lung Syndrome. This economy hasn’t helped as he has been unemployed for the past 3 three 1/2 years. This has given us no choice but to leave these precious Rocky Mountains, which have been such a wonderful backyard and place for many day trips, in search of work elsewhere (of any kind!) and a NEW START! If you can spare the cost of a latte each week or a guilty pleasure or a hug, (we love hugs!) we’d be forever grateful. You’ll be taken to a descriptor page for our internet fundraiser, to donate, simply fill in the box and click “GIVE.”  Thank you and God Bless, Annie

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Annie and Rey’s Autoimmune and Move Fund

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Never did I think I’d be in the position to ask for help from my friends and followers, many of whom I don’t know, but Rey has been unemployed for more than 3 years and my disability salary doesn’t ‘cut it.’ I’m eating a huge slice of humble pie these days, but autoimmunity has eaten away at our savings as much as Rey’s unemployment. If you can help, even a small amount, PLEASE DO!
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My letter to lupus and all things autoimmune

May is Lupus Awareness MonthWhat better time than now to let lupus know what I think of it, so I decided to write a letter to lupus, telling it that you’re no longer welcome in my body. My experience with you began when I was 19 and I was diagnosed with Sjogren’s Syndrome, another autoimmune disease. It was only a bother when I was young, dry eyes, and infectious parotitis. But then, Sjogrens‘s began affecting my life.

Idiopathic Thrombocytic Purpura (commonly known as ITP) was diagnosed with a painful bone marrow biopsy and shortly thereafter, I was told that I couldn’t have children, I was told that you were the reason I suffered the greatest loss of my life, not being able to have children. I’m told that you orchestrated an attack on my ovaries and Premature Ovarian Failure was the reason my husband and I would remain childless. A family was my dream!

Then more asymptomatic and quiescent years. Then, what I thought was the flu with a high temp (106 degrees should have clued me in!) turned into treatment with high dose IV steroids for an allergic reaction to a medication. Two years later, you were diagnosed and shortly thereafter came the diagnosis of osteonecrosis (ON). So many theories abound about the etiology of ON. Lupus, in your ravaging of my body, you also orchestrated antiphospholipid syndrome

You’ve altered my life, robbed me of my late 40s, all 50s and I’ll be darned if I let you rob me of all my 60s. I’ve been told that now, lupus has given way to Sjogren’s Syndrome as my primary diagnosis. This ‘morphing’ from one autoimmune disease is not uncommon. But, the damage from lupus has been done. I have ostoenecrosis (ON) in most joints and I have had a knee, a shoulder and an ankle replaced.

The crowning blow and icing on the cake was that the autoimmunity gave me this thing called ‘Shrinking Lung Syndrome.’ I get short of breath with the least bit of exertion. My doc and I have thrown every med and and treatment at it, to no avail. For years, the ON in my ankles was so painful that as the years went by, I walked less and less and and eventually, I only rarely left the chair because of the tremendous pain from ON and shortness of breath. But, part of the problem seems to have been solved by an ankle replacement. I’m undergoing rigorous physical therapy, but I have a good 8-10 years to make up for, and that doesn’t happen overnight.

Not only have you robbed me of a good 30 years of life, participation in that life, children and caused undue pain; but the life of my husband has been changed. He has been with me through all the hospital and ER visits and driving me when necessary. We filed bankruptcy protection today. Not only are we indigent because of high medical costs, but our future is uncertain. Lupus and Sjogren’s, did you think about the impact on my life and so many other lives, when you entered out bodies? Well, you’re an unwanted guest: GET OUT OF HERE!

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Lupus Got Ya Thirsty?

Or: SOMETHING’S GOT YOU THIRSTY! There are many reasons for a dry mouth, but the following is often the scenario with a lupus-caused or Sjogren’s Syndrome-caused dry mouth:

Your mouth is always parched and going anywhere without a bottle of water is simply out of the question. At times you sound drunk; but, at 8AM? Could this be related to lupus and, if so, is there anything to do about it?

Many people with lupus develop a dry mouth. Why? Remember the antibodies of patients with autoimmune diseases that mistake the body’s tissues for foreign tissues and attack them? When they attack the mouth, the salivary glands in and around the mouth produce less saliva, really minimizing the salivary glands’ ability to produce ANY saliva. This happens almost all the time in Sjogren’s Syndrome (in fact, mucosal dryness is a hallmark of Sjogren’s Syndrome), but dryness is not unheard of  in lupus.

Saliva flow can be greatly decreased in lupus, Sjogren’s Syndrome and in other autoimmune diseases, sometimes to the point where it is nearly non-existent. If saliva flow is decreased, food particles aren’t continuously washed away (by that saliva), bacteria hide and thrive in the mouth’s warm, dark environment. Cavities develop, in fact you can lose teeth from lupus or Sjogren’s Syndrome. You may have dry, chapped lips, too. The tongue can be quite tender, so tender that even that very mildest of salsa is too hot!

Unfortunately, serious complications can result from a dry mouth; conditions other than someone thinking you’re drunk at 8 AM! Painful chronic infections of the parotid glands can develop when there is so much mucosal dryness that the normal cleansing mechanisms are disturbed and drainage from the parotid glands into the mouth becomes blocked. Tooth loss is another serious complication. Normally, saliva is alkaline and balances the acid in the stomach and esophagus. Gum disease and periodontal disease are increased in

With decreased saliva, the acid/base balance is interrupted and acid-reflux can develop. Another complication that may arise besides the seriousness of cavities or periodontal disease and parotitis is the possibility that the parotid glands become infected so often that they need to be removed; this can be real risky surgery because the trigeminal nerve can become involved

So, what can you do, when, in spite of frequent dental check ups, regular brushing and flossing you still develop cavities? Talk with your dentist and have a check up at least every 6 months to watch for gum disease. Your teeth are not just cosmetic, they aid in digestion, so do as much as possible to keep your teeth and gums healthy.

Also, don’t throw away that water bottle just yet! Just rinsing your mouth periodically helps keeps it clean in between meals. Brush several times a day with a soft toothbrush and floss at least once a day.

Your doctor or dentist may order prescription medications to stimulate saliva production and your pharmacist can help you find over-the-counter products that help stimulate saliva production and  relieving dry mouth. You can also suck on hard lemon candies, but remember that any product that you use should be alcohol-free and sugar-free.

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