Sjogrens Syndrome/Radiation

Hi 2ladybugs!

I also have Sjogrens Syndrome. My case was quite mild with really only dry eyes and slightly dry mouth as symptoms...however, I was diagnosed with breast cancer and because of lymph node involvement (4/12), after surgery I needed chemo prior to the radiation. In my case the chemo agravated my symptoms of sjogrens. My eyes are much worse now, I use eyedrops nearly on the hour and my mouth became so dry it was intolerable! I think my salivary glands nearly shut down completely. My rheumatologist started me on "Salagen" 3 times a day and then 4 times a day after a month till it finally kicked in. Now, it is not ideal but much better. So I must stay on Salagen for the rest of my life I guess! To make a long story short, the radiation didn't worsen my condition, it was the chemo. You should be fine! I had some burns on my skin due to the rads, but not worse than anyone else I was told. Now I am 2 months post treatment (25 rads) and my skin is all healed. Just has a brownish taint to it. Good luck...let us know how it goes and it would be nice to keep in touch...not many of us "sjogrens" around!

 Jo 

Hi,

I too have Sjogrens Syndrome.  I had a double mastectomy, chemo and radiation.  None of this really aggrevated my Sjogrens, except for the dry skin in the radiated area.  I used a ton of aquafor.  Every night before bed I would just cover my chest and put on an old shirt.  It was messy but I think it helped.  I finished rads last may and my skin is pretty much back to normal, it just looks a little darker.  Good luck to you!

I forgot to mention I'm on tamoxifen now too.  The side effects suck but they're tolerable.

Maud, although I personally do not have Sjogren's my sister does. She has started seeing a rheumatologist & has her on drug therapy that has really turned down the severity of her disease. No  one likes having yet another specialist to see but in her case, it has really improved her quality of life. She isn't on one of the new bio drugs; she is using an old (aka cheap) therapy & it is working great for her. Very low SE's.

Thank you Msmouse and Cocojo !  Before I moved years ago, I was seeing a rhumatologist who gave me Flexeril (muscle relaxant) for fibromyalgia but he never ever mentioned Sjogrens even though I was complaining about extremely dry eyes, even had to have laser surgery.  I stopped the Flexeril on my own thinking that was the culprit, but it was not. The ophthalmo has me using the Muro drops at night, if I don't, big trouble, and lubricate so many times a day, I lose count.  I drink gallons of water, always soo thirsty.  So, I guess, I better ask to be referred (to a new one this time) and ask to be tested for Sjorgren's.  I find that disease scary...and wonder if BC could be related somehow...Thanks again ladies 

Congrats Jo !!!! Cheers !!  I'm almost two years out, in a few more months 

I had the DCIS diagnosis bomb dropped on me yesterday, 5/14/2013. I had an immediate consultation with the surgeon and was told that because I also have Sjogrens that I was not a candidate for lumpectomy and radiation. My only option offered was mastectomy. I inquired about reconstruction but was also told that I most likely would not be a candidate for reconstruction either because the Sjogrens would impede the healing and increase the likelyhood of my body rejecting the prosthesis. I also carry the diagnses of MS, HBP, narcolepsy, and I had gastric bypass a few years ago. My overall nutritional status is excellent, though. Any guidance regarding the DCIS, mastectomy and reconstruction potential would be greatly appreciated.

I agree with Lily55...get a second opinion. As you most likely read above, plenty of us have had lumpectomies or partial mastectomies with chemo and radiation. The side effects are not worse than for anyone else in the long run. Having Sjogrens might mean having to adapt your treatment post chemo/radiation...I had to start taking salagen for my salivary glands which were most likely further damaged by the chemo! As with any other chronic disease, you adapt and learn to live with it. I generally feel great and am enjoying life to the fullest!!

Good luck...with everything and think positive!

Hello fellow Sjogren's Sydrome and BC survivors!

I was just diagnosed in the beginning of January with IDC, stage 1, and also DCIS stage 1. Based on my consult with my breast surgeon and with a reconstructive surgeon, I've decided to go with bi-lateral mastectomy and implants, with expanders first. My surg date is Feb. 14th - lovely, right?!  Oh well, the main thing I'm trying to stay focused on is that I'll be getting the cancer out and in the past, and moving forward to regain my health. I am also pretty scared about the whole surgical procedure, including how I'll feel with the anesthesia - how much nausea, dizziness, and will it really numb any awareness during the procedure and post-op. I sure hope so!  And, I also have low grade sjogren's with a very dry mouth, and I'm wondering how doing fasting and no liquids for 12 hours before will be with going into and coming out of surgery. Any input anyone could share from their experiences with the surgery, would be so appreciated - feeling just a bit anxious!

Hi CocoJo, Thanks so much for your warm and kind reply!  It helps to hear that you went through the surgery with having Sjogren's as well and didn't have any major problems - phew!!  Sucking on ice slivers sounds like a good plan - I'll definitely be sure to do that and tell my anesthesiologist about my dry mouth/sjogren's symptoms.  Having support from you and other women who had gone down this same path helps immensely!  Thank you SO much for sharing your experiences and advice!  

KMeade

I'm sorry you have to go through this. I am in remission now 2 years from stage 4 tonsil and lymph node on the right side of my neck. So I don't have any saliva, or very many taste buds left. But my dentist told me about these little tablets for your mouth called Xmelts their mostly natural , they have been a life savor especially at night. I don't wake up all night anymore to drink and pee. I found them at CVS. I wish you the best. I know how hard it is to change your life completely. Be blessed. XO

Sicca Syndrome; also known as Mikulicz and Sjogren's syndrome.

Result of breast rads scatter.

Health issue in which the proper function of the exocrine glands is disrupted. As the condition worsens, sufferers begin to experience dryness in the eyes and mouth. If not treated in time, the illness can interfere with moisture content in various organs of the body, leading to a wide range of serious health problems.

The exocrine glands produce and release hormones into the duct glands. This is in contrast to the endocrine glands, which release hormones into the bloodstream or into target cells that are found near the point of release. Sicca syndrome prevent the production and proper release of hormones into the ducle glands, effectively throwing the normal balance between the hormones produced by the exocrine and endocrine glands out of balance.

The underlying cause of this syndrome is the improper function of the immune system. With this disorder, immune cells attack the cells of the exocrine glands. Slowly, the glands begin to fail in their function of providing proper levels of hydration throughout the body. In its later stages, outward symptoms begin to appear that are mild at first, but continue to worsen. Various types of rheumatic disorders can trigger the immune system dysfunction, or the syndrome can develop on its own for reasons that have not yet been fully understood.

There are two outward symptoms that can indicate the presence of Sicca syndrome. The first is a noticeable decrease in tear production and eye moisture in general. The dry eyes that develop are often painful and over time can mean a loss of vision.

Along with the eye dryness, a noticeable lack of saliva production takes place. As the dryness of the mouth escalates, it begins to affect the ability to swallow, as well as causing damage to the tissues of mouth interior. The constant need to re-hydrate a dry mouth progresses from being a mild annoyance to being a constant necessity.

However, this condition does not stop with affecting the eyes and the mouth. Over time, the disease can cause the skin to begin drying out, making the top layer of skin dry and easily irritated. Interior organs are also at risk, since the continuing decline of the exocrine glands makes it impossible to produce moisture that is needed for the proper function of such key organs as the brain, liver, kidneys, and pancreas. Even the lungs can be adversely affected if the syndrome is not treated.

Diagnosing Sicca syndrome can be done with a blood test. The test will measure the amount of antibodies found in the bloodstream. In particular, the level of anti-nuclear antibodies, ANA, is checked as part of the process. In addition to the blood test, it is also possible to measure the production of tears and determine if the production level is normal or below what is considered a safe amount.

There is no cure for Sicca syndrome. For this reason, treatment focuses on making up for the failure of the exocrine glands and keeping the organs of the body properly hydrated. Artificial tears are administered daily in order to help with dry eyes, while prescription medications like pilocarpine or cevimeline are administered to help increase the flow of saliva to a normal range. Various other medications can help protect internal organs from complications arising from the syndrome.