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Tamoxifen and Sjogren's syndrome
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Tamoxifen and Sjogren's syndrome

I am a breast cancer survivor for 3.5 years. After surgery, I had radiation therapy, plus taking tamoxifen. My cancer is stage 1 and grade 1Gradually, my hot flash is stopped and my life is back to near normal. I noticed that I always very thirsty, my eyes are dry, my skin, hair also dry. I also have joint pain occurred in joint, both small and large joint. I read the symtom of Sjogren's syndrome which is a incurable auto-immune system problem which is that the glands produce lubrication has stop function properly. I have to use lotion all the time to make my dry hand feel comfortable. Could it be the long term usage of Tamoxifen which may cause this problem. If I stop using this, would it been improved? I only have about 1.5 years on the drug.
I also want to know if it is wise not to take anything after tamoxifen. I took femara for 4 month but cause joint pain so I went back.
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13 Comments
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Avatar_n_tn
Me too!  BC IA 2005, PSS diagnosed 2007.  Most of my doctors are very reluctant to state that the PSS is related to Tamoxifen.  I, too, was offered Femara instead but I don't believe that will solve the problem.  A google search reveals an old study finding symptoms of Sjogren's in mice upon deprivation of estrogen.  The doctors say that I am exactly the right age for development of PSS.  [BC was diagnosed at 39.]   Funny, though,  I didn't have any "old lady" symptoms before the Tamoxifen and suddenly I'm dried up, arthritic and taking BP meds!  As the PSS symptoms are tolerable and a BC recurrence would not be, I'm going to stick it out for now. Glad to know I'm not the only one!  I'll check back for updates.  Hope you're feeling better...
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Avatar_dr_m_tn
Hi.  The Sjogren Syndrome-like symptoms you have been experiencing are not the direct result of Tamoxifen (the symptoms are not an immune reaction to the drug), but due to the decreased circulating levels of estrogen induced by Tamoxifen intake. This implies that the symptoms you are feeling are not permanent, and should improve when you stop taking Tamoxifen.

To answer your question: yes, long term use of Tamoxifen seems to indirectly cause Sjogren-like symptoms, by decreasing estrogen levels.  But the decrease in estrogen level is precisely the effect that the Tamoxifen treatment wishes to achieve, since only with low circulating estrogen can breast cancer progression/recurrence be prevented.  So it's a tradeoff between having additional protection against breast cancer recurrence, and having these joint pains and dryness for the short term, while you're taking Tamoxifen.  It's always your choice whether to continue the treatment for one and a half more years.
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Avatar_f_tn
Hi, Dr. Roque:

Thanks for your reply. I took a SS test recently and it ruled out so I only have the SS like symtoms (symptoms). I am going to continue to take Tamaxifen till next summer. The question is shall I stop there. I am 56 years old and living in a very health life style. I am also practice a Chinese QiGong that has known anti cancer alternative medicine in China. However, there is no serious medical research done on this. I am debating daily that if I should have quality of life after Tamaxifen by not to take any drug or  take other similar drugs and live with those small problems.  From statistics, there are high percentage breast cancer patient like my situtation, do not have to do anything but they recovered. It is hard to predict and it likes a gamble.
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Avatar_dr_m_tn
Hi.  If you're completing a five year course of Tamoxifen by next summer, then that should be sufficient hormonal treatment and you may opt not to take any more medications afterwards.  But if you're post-menopausal (I'm assuming you are, since you're 56 years old), taking letrozole (another hormonal treatment) for a few years after completion of the course of Tamoxifen will further lower the risk of cancer recurrence.  You may wish to consider this option.  Of course, this medication has its own set of side effects.  While the side effects of letrozole are generally milder than those of Tamoxifen (less hot flashes, vomiting and vaginal dryness), this drug can cause more significant osteoporosis than Tamoxifen.

Practicing QiGong is a good thing, since it's going to keep your body's energy levels up.
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Avatar_f_tn
Hi, Dr. Roque:

I took femara for 4 months last year because my oncologist thought this is newer may be better medicine than tamaxifen. However, it caused me severe joint pain. Besides big joints like shoulder, leg, the joints in every finger is in pain. So my oncologist put be back in tamoxifen. Femara also has risk of causing osteoporosis and I have done bone density test during that time. I am post menopausal. What is recommended duration taking letrozole after tamoxifen?

Thanks
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Avatar_f_tn
Hi, Simbay:

What is PSS? When you take femara, it did not bother your joint too much? I am back to tamoxifen now and have 1.3 years to go. I noticed that in warm/dry day, my symtom got worse. Sometimes, I skip the pill for a few week to reduce the symptom, then back on again.

Thanks,
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Avatar_dr_m_tn
Hi.  Just to clarify matters: Femara is the brand name of the drug letrozole.  Since you've already taken this drug and it has caused you severe joint pain, it's really not advisable for you to be taking it again.  In the MA-17 clinical trial, Femara/letrozole was intended to be given for a duration of 5 years after Tamoxifen.  However, patients in that study were only treated for an average of two years before the study was unblinded.  So the optimal duration for giving letrozole has not yet been established, but benefit in terms of decreasing disease recurrence is already evident at two years of taking this drug after Tamoxifen.
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Avatar_n_tn
Ive heard that few postmenopausal women take letrozole directly without taking a course of tamoxifen.Is this right or should it always be first tamoxifen and later letrozole? Some doctors prefer first line treatment with letrozole in patients with advanced breast cancer. Is this true?
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Avatar_n_tn
Interesting question here.  I participated in the Tamoxifen and Raloxophene five-year breast cancer study (2000 - 2005).  This required completing questionnaires about possible side-effects experienced, and one of the questions was "do you have dry mouth."  First time I'd ever heard of it, but yes, since I was on the study I had dry mouth.  I've been off the study now three years and continue to have dry mouth, sometimes worse than previously.  

I'd be interested to know if others have experienced this same thing.
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Avatar_dr_m_tn
Hi.  Letrozole (Femara) can be given as an initial hormonal treatment for postmenopausal women with breast cancer, after surgery.  It does not have to be given after Tamoxifen.  A large clinical trial called BIG 1-98 showed a significant advantage (in terms of preventing recurrence) when Letrozole is used in this manner, compared to using Tamoxifen initially.  Letrozole can thus be used as first line hormonal treatment.
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Avatar_n_tn
Another question since last posting.  Is it possible to have SS symptoms as a result of 5 years on tamoxifen--dry mouth, dry eyes, occasional mouth sores--WITHOUT having SS?   An answer to this would greatly clarify whether I should go on any medications, since right now I am not taking any.  My dentist recommended ceme(something), but until I get a firm SS diagnosis, I prefer not taking meds to treat various symptoms.  If one can have SS-like symptoms without the disease, would/could the condition progress to full-blown SS?  

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Avatar_n_tn
Thank God I'm not the only one wondering about the link between Tamoxifen and Sjogren's.  My eyes started bothering me about 6 mos into my Tamoxifen tx (Nov/Dec 08).  It's been almost a year now.  I went off Tamoxifen Sept 23/08 and have had some improvement with my eyes, but they still bother me considerably.  I have been tested for SS and was ENA pos and the only antibody positive was JO-1.  My mouth is not bad, mostly just the eyes.  Are these test results conclusive of having SS?

As a side note:  I'm an intermediate metabolizer of Tam. Now they want to put me on an Aromatase Inhibitor with zoledronic acid as I have osteoporosis.  What's the point if the AI's dry your eyes out too.

Thank you so much
jan
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Avatar_dr_m_tn
Hi.  ENA is positive in only around 25% of cases of Sjogren's Syndrome.  JO-1 antibodies are not indicative of Sjogren's but of some other rheumatic diseases (myositis).  The antibodies most closely associated with primary Sjogren's Syndrome are anti-SS-A and anti-SS-B.  Since you have been tested for these and have been found to be negative, you most probably do not have Sjogren's Syndrome.

Regarding your question about aromatase inhibitors:  the point of taking this drug is to prevent the recurrence of breast cancer.  Now there is the possibility that this drug could also cause dryness of the eyes.  But that is the trade-off you have to contend with if you want the added protection from recurrence which this drug could give.  The eye dryness is only temporary in most cases and would go away when the drug is discontinued.  There are various eye drops available to help you moisten your eyes and relieve the symptoms.  The choice of taking the aromatase inhibitor is ultimately up to you and you just have to weigh the pros and cons of this treatment.
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