Butterfly Warrior

Intimacy

Intimacy can be challenging when you have lupus. Lupus and its treatments may cause changes in your physical appearance, and these changes -- skin rashes or lesions, hair loss, weight gain -- may affect your sense of your own desirability. Joint pain, mouth sores, vaginal ulcers, and a decrease in lubrication from the glands can slow sexual responsiveness and make both foreplay and intercourse painful. Pain, fatigue, depression, and certain medications can lower your interest in sex and intimacy. And, if the frequency and pleasure of intimacy and sex fade, the partner without lupus may feel hurt and confused, or even resentful and angry.

But it is possible to regain intimacy and tenderness between partners. Good communication will help counter negative self-perceptions or feelings of rejection, and can keep an amorous spark alive even when sexual activity wanes. Physical adjustments, such as using pillows for support, finding less painful positions, and applying lubricating ointments and creams, can relieve discomfort during sex. Taking a warm shower or bath can help relax sore muscles and joints, and anti-inflammatory medication may also provide relief. Sex aids can help promote a partner’s response to intimacy. Other forms of physical contact -- gentle massage, tender touching, a loving embrace -- can provide intimacy without intercourse. If problems persist, couples should seek the help of a licensed therapist, to help improve communication and offer suggestions.*      

   We all remember the beginning of our relationship or marriage, the passion, the joy, and falling in love. It's called the honeymoon stage. I certainly remember when my husband and I were in the honeymoon phase. We couldn't get enough of each other, we spent every spare moment being with each other. We spent a lot of time making love, holding hands, staring longingly into each others eyes. We were very passionate and no one existed except us.  Never in our lives did we think that things be any different from that special time.  Then life happened; having children, changing careers, moving, running errands, making dinner, and household chores. It's so gradual you don't even notice it at first, we don't have time to stare into each others eyes for hours at a time anymore. With all the changes in our lives and time constraints it's harder to find time to be spontaneous in the romance department. Sometimes it feels as if have to  we have to get out calendars and schedule alone time with our spouses. Now on top of the normal course of relationships and family life, let's factor in Lupus.  

    It takes work to not let any part of your marriage suffer and it is very true of making love as well. Factor in Lupus on top of  family life and the normal course of relationships intimate times with your spouse takes a back seat.  With Lupus there are so many changes in your body that can occur. 

• Hormonal changes that can occur with Lupus and cause ulcers in your mouth or vagina
• Fatigue can make sex nearly impossible 
• Joint and muscle pain can make sex uncomfortable or painful
• Lupus medications can cause weight gain, decreased libido, hair loss, acne, and rashes
• The medications can also cause erectile dysfunction for males and vaginal dryness for females 

 

Body image issues can and do occur when these things happen to your body and are out of our control. Any and all of these things can fear from your partner and yourself that sex will hurt you and make things work. You and your partner can feel frustrated, rejected, and  insecure by the reduced amount of sex and the changes in our libido. The changes in our bodies can cause body image issues. We may not be comfortable with ourselves anymore or feel attractive. If we don't feel attractive we may feel that our partners don't feel that we are attractive either.   These things have a huge effect on our self esteem as well as on our every day lives and it can most certainly have a negative effect on our private lives and sexual health.   Our sex lives to do not have to die because we have a chronic illness. 

• Communication is key, talk to your partner and your doctor 
• Vaginal lubricant can help with vaginal dryness
• Medications are available for erectile dysfunction
• Take a warm bath or shower before initiated intimacy in order to relax muscles and joints
• Try different positions or different times of the day
• Take advantage of the good days
• Try massages to relax your body and mind
• Cuddle when making love just isn't possible
• Seduce each other with phone calls, texts, and notes

Most of all keep trying! Don't let frustration from Lupus and other symptoms ruin your sex life.  

 

 

 

 

 

 

 

 

www.lupus.org

Lupus Nephritis1

"Lupus nephritis is the term used when Lupus causes inflammation in your kidneys, making them unable to properly remove waste from your blood or control the amount of fluid in your body. Abnormal levels of waste can build up in the blood and edema (swelling) can develop. Left untreated, nephritis can lead to scarring and permanent damage to the kidneys, possibly even end-stage renal disease(ESRD)."

There are very few signs or symptoms of lupus nephritis.

• It does not cause pain in the abdomen or back.
• However, when protein leaks from the kidneys, it is eliminated from the body in the urine
• Foamy, frothy urine and getting up to urinate during the night can suggest excessive protein loss.

The loss of protein in the urine from lupus nephritis may then lead to fluid retention with weight gain and swelling (edema). This is often the first symptom noticed of lupus nephritis.

• The edema generally appears as puffiness in the feet, ankles and legs.
• This swelling will be absent in the morning, but will gradually worsen as the person walks about during the day.*

  I went to my PCP regarding some migraines I had been having for a few weeks. I assumed the migraines were from stress as we had just moved  from New Mexico back to Texas. I was feeling guilty about moving because we had uprooted our family due to my having Lupus. After my fem-pop bypass we found ourselves coming to Lubbock at least  monthly for doctors appointments. Every time I was sick I would be sent to Lubbock so it made sense to live here.  My PCP did routine labs and did not like the results of my urinalysis, she had me see my Rheumatologist the same afternoon. I didn't see the big deal; I still thought migraines was all I was dealing with. My Rheumatologist did labs and called me to come in for the results. I assumed that I was in a flare however not only was I flaring I also learned I had nephritis.

  Since I thought the appointment would just be to give me prescriptions for the flare, I went to the appointment myself. I was devastated because the hardest thing for me was going to be telling my husband and daughter. I needed to get my emotions under control so I could tell them without alarming them unnecessarily. I invited my husband to lunch and told him. We cried together and then made a game plan to tell our baby girl that I would have to have surgery again.  The next step was to stage the nephritis and we had to do that by having a kidney biopsy. We wouldn't know what we were dealing with nor how to treat it without it being staged. 

Table 1. World Health Organization (WHO) Classification System for Lupus Nephritis

Class	Designation	Comment
I	Normal	No evidence of lupus nephritis on the kidney biopsy.
II	Mesangial Nephritis	Most mild form of lupus nephritis; typically responds completely to treatment with corticosteroids.
III	Focal Proliferative Nephritis	Very early stage of more advanced lupus nephritis; typically treated with high doses of corticosteroids, with excellent outcome.
IV	Diffuse Proliferative Nephritis	Advanced stage of lupus nephritis with definite risk of loss of kidney function; typically treated with high doses of corticosteriods combined with immunosuppressive drugs.
V	Lupus Membranous Nephropathy	Generally associated with excessive protein loss and edema; typically treated with high doses of corticosteroids, with or without immunosuppressive drugs.

Once the biopsy was results came in I was staged at Class IV. Unfortunately Class IV is the most severe type. I can admit that the bottom dropped out of my world. I'm not one who goes straight to hysterics but this time I did. I tried to convince my husband to divorce me and find someone healthy, I tried to convince my then supervisor to fire me, and I went on and had a giant poor me pity party. It took a few days to work that out of my system and get on with finding out my treatments options.

  My rheumatologist who is very aggressive met with my husband and me and offered us 3 choices of treatment.

1. IV Cytoxan for a 1 year or more(Cytoxan is a chemotherapy used to treat breast cancer)

2. Oral cytoxan for 5 years

3. The last option was to do nothing aggressive, try an immunosuppressive and wait and see.

   The rheumatologist had us meet with 2 patients of his. One of the patients  had done Cytoxan treatments and was doing great. The other patient we met opted to do nothing. She was on dialysis and was waiting on a kidney transplant. I was shocked that her biggest worry was about treatment was losing her hair. 

 My husband and I discussed it and we decided to do the IV Cytoxan.  However instead of 1year of Chemo I wound up having 3 years of it. Chemo  was hard , even at the small doses (compared to cancer patients) that I was on. The first 6 months were not to bad, after that it got really hard. My hair thinned but I didn't have any significant hair loss. The worst part was nausea and fatigue and they happened about half way through the treatments. In the beginning of the treatments I would do them in the morning and then go to work in the afternoon. After about 6 months of that I would have to take the afternoon off so I could sleep. 

 The Cytoxan did it's job. It slowed the progress of the nephritis and I am now on a immunosuppressive medication called Cellcept. Cellcept is typically used for organ transplant patients to keep their bodies from rejecting the new organ. Cellcept helps suppress my immunity and helps keep my body from rejecting my kidneys. It has helped quite a lot. I've not had but one scary moment with spilling protein since I finished chemotherapy. Luckily for me IV solumedrol did the trick because I wasn't looking forward to chemo again. 

 

  

*Lupus Foundation of America

Dental Phobia

 I have a phobia of going to the dentist. Even before my Lupus diagnosis it caused me a great deal of anxiety. Now even more so since I am on coumadin for 
antiphospholipid syndrome. Now a trip to the dentist involves an appointment with a hematologist in order to wean me off coumadin prior to the appointment. 
Several visits for lab work, I need to have my PT/INR checked to make sure my blood wont be to "thin"  so I can get my dental work done. Needless to say I rarely ever 
go to the dentist. It's time consuming and I'll be honest I think it's a pain to have to do all that. 
 However in the last 3 years I've noticed that my teeth are changing. I've been on prednisone for around 17 years and it is damaging to my bones, joints and my teeth. 
There have been times when my teeth chip while I'm chewing gum! I brush my teeth and try to practice good oral hygiene, unfortunately it isn't enough anymore. 
I decided to research a little and find out how prednisone effects our teeth and mouth. I was surprised to learn that it isn't just predisone that has a negative effect on teeth.
Many of the medicines that I've either been on in the past or am still  on now like plaquenil and Cytoxan can also cause damage as well. 
 


The list below contains warnings for those of us with organ involvement. These are things we need to bring to the attention of our dental provider before we get work done.  






Certain forms of SLE organ involvement also carry dental care warnings and every procedure 
and medication must be carefully evaluated. Some areas of note are:  
 Kidney Involvement: Prescriptions for certain antibiotics (e.g. Tetracycline) or analgesics 
(e.g. Aspirin, NSAIDS) by a dentist can adversely affect kidney function. 
Liebman-Sacks Endocarditis (a form of heart involvement): Approximately 50% of 
patients with SLE suffer from this condition, yet many don't even know it. The majority 
of cases are not detected until an autopsy is preformed. Antibiotics need to be given 
before any invasive dental procedures, not just surgery, are preformed. These antibiotics 
help prevent the bacteria from the mouth from entering the bloodstream and infecting the 
vegetations from this disease that are imbedded in and around the heart. Antibiotics will 
help reduce the risks if not eliminate them completely. Infections, from dental care, can 
cause life threatening complications that are too often a reality not just a vague 
possibility.  


 Lung Involvement: Laughing Gas (also known as Nitrous Oxide) may be problematic in 
those suffering from Lupus related lung problems because of it's tendency to depress 
breathing.  


 Lupus Anticoagulant or ITP: Periodontal surgery or extraction of teeth can be 
complicated in those patients suffering from these conditions due to abnormal bleeding. 
Any invasive dental work or surgery needs to be evaluated fully and then undergone with 
caution.  


 Medications taken for Systemic and Discoid Lupus can also affect our mouths and 
require special dental care. Some oral related side effects from these medications are:  


 Anti-Convulsants: Many of these seizure and neuropathy medications can cause gum 
atrophy and bleeding which can lead to infection and decay.  


 Anti-Malarials: Plaquenil can cause a rash in the mouth or an oral lichen planus type 
reaction.  


 Immunosuppressive agents: Cytoxan, Imuran, Methotrexate, etc. act by suppressing the 
immune system and therefore may result in bacterial, fungal and other infections that can 
affect dental implants, teeth, gums, and the mouth.  


NSAIDS: Nonsteroidal Anti-Inflammatories (Advil, Motrin, Feldene, Daypro, etc.) can 
cause oral ulcers and canker sores.  
 Steroids: Prednisone and other corticosteroids increase the likelihood of bacterial and oral 
fungal infections such as thrush/candidias (yeast).  
 
Here are some helpful hints at combating these often painful mouth symptoms and the 
problems they cause:  
Dry Mouth: Salagen, Artificial Saliva Sprays, Sugar Free candies, ice chips, non-alcohol 
dental rinse/mouthwash, and drinking plenty of water and fluids throughout the day.  
Oral Sores: Orabase ointment (numbs the area and promotes healing) or Oragel (if you 
just want an anesthetic), a paste made up of Mylanta and baking soda, ice chips, baking 
soda rinse (1 tsp. baking soda per 8 oz. water), nutritional drinks such as Ensure and 
Boost to provide you with the nutrition you are missing from not eating due to 
discomfort, cool drinks and plenty of fluids to rinse out bacteria, and a hydrogen peroxide 
rinse (50 /50 mix) to prevent infection.  
 Canker Sores: Orabase Ointment (numbs the area and promotes healing), over the 
counter canker sore remedies such as Zilactin HP, keeping the area clean, applying 
protective ointment such as Vaseline, and avoiding irritating foods/beverages/makeup.  


Frequent Decay and Infections: Baking soda rinses (1 tsp baking soda per 8 oz. of water), 
various dental floss tools, electrical toothbrushes, artificial saliva substitutes (sprays and 
medications), non-alcohol rinse/mouthwash, night guards, hydrogen peroxide rinse 
(50/50 mix) and WaterPik tools. 
 Foods and substances that you should avoid while experiencing oral sores and other dental 
problems include citrus fruits, spicy foods, alcohol, caffeine, carbonated beverages, and 
foods/drinks that are acidic. These items will exacerbate your oral discomfort and can irritate 
already inflamed areas of the mouth *

The Lupus Foundation of America, Inc. would like to thank the LFA Greater Washington chapter for the use of the above lupus information.*
www.lupus.org *