Anyone else here taking tamoxifen?

[way2dry]

I was wondering if I'm the only one with sjogrens who is also taking tamoxifen for bc.  Has it made your dryness or other symptoms worse?  Do things improve when you go off it?

[litliwlowa]

I'm on it. MO started me on half a 10 mg tablet.

Well since it wasn't scored, I started at 10 mg then went off it after three weeks of excruciating muscle pain (especially in legs and low back and hips). But I have to say the muscle pain started a few days before I started Tamoxifen. Just got worse on it initially.

So I stopped it for a week, restarted at half tab as verbally instructed (5 mg) and so far so good. During that week I got into Endo to check thyroid levels and cortisol.

I also increased my magnesium supplement slightly.

Muscle pain did improve by the end of the week I stopped it, and hasn't returned so I am guessing in my case I was in flare from who knows what - roll the dice and pick which culprit.

Oh, my endo did advise me that Tamoxifen can interfere with absorption of Thyroid replacement hormones (meaning we may have to increase my Tirosint). So if you have thyroid problems, it would be a good idea to ask your doc to run thyroid panel (and calcium).

I'll know more when I see MO in April. He does labs every 3 mos I think - or was it 6 mos - I think he said every 3 months.

Also, another effect of this drug is hypercalcemia (too high calcium), and hyperlipedemia (I think that's the one - high cholesterol)

Basically, it sounds like a call to your MO is in order.

How long have you been on it?

(I'm sorry you're in the BC club too)

As for dryness, I haven't noticed any significant change, but then I am not at full dose either. My MO started me low dose to see if I can even tolerate it given my plethora of drug allergies and contraindications and intolerances. Plus I take it at night at bedtime since I take my thyroid meds in the morning.

[way2dry]

Thanks for your response!   

I was terrified to take tamoxifen, so I put it off for a while.  When I first started it, I think it was late in 2013.  I had terrible joint pain in my lower back and hip and my thumb joints.  Since I started tamoxifen shortly after I was dx'd with sjogrens, I wasn't sure whether it was the sjogrens or the tamoxifen causing the pain.  I stopped the tamoxifen and the pain went away. 

Last November, I started tamoxifen again, but at half dosage.  I'm on the full dosage now and seem to be doing ok except for hot flashes.  Sjogrens messes up my temperature regulation, so some days are a real joy...

My oncologist never does any blood tests.  I will ask him about that the next time I see him...

[litliwlowa]

My MO does monitoring BW regularly (I am thinking every 6 mos, as he did no BW before starting me on that which I thought was weird)

Endo does his BW every 3 months - more frequently if I get symptomatic correlating with thyroid levels

Rheumy does his BW every 6 months

PCP does his BW once a year

Maybe my MO is taking into account the plethora of medical issues I have.

(did I forget anyone? No wonder I feel like a pin cushion!!)

So far, on 5mg (half a 10 mg tab), the muscle pain has not returned thankfully this round.