Please Help. I Can't Go Through This Again
 

Hi All! I was on Arimidex for 1 1/2 years when I finally had to say "uncle" and stop taking it due to the severity of the bone and joint pain. It seems I was at the high end of the side effect scale and had become disabled from the pain. Very unusual for me. I went through chemo, including taxol, well, or so my Onc said.

I have not historically had any problems with pain, and always considered myself as one having a high tolerance for pain. But the Arimidex did me in.

So, as I said, after a year and a half, I finally gave in and stopped taking it. Within one month all bone pain was gone. I gave myself another month just to be sure and then started on Tamoxifen.

I have now been taking tamoxifen for three weeks and much to my surprise, the pain is back. I don't see this listed as a side effect of tamoxifen which is what really has me puzzled.

Has anyone on the site experienced pain with tamoxifen?

Thank in advance for your replies.

Ginangce
10 Year Survivor

Have you tried Aromasin? That was the last one I was on. I had no noticeable side effects.

No I've not Brenda. At the time of the Arimidex pain, my Onc and I discussed switching to another AI. She felt that given my reaction to the Arimidex was so severe, any other AI would probably be the same. Thus the switch to Tamoxifen.
But as I sit here, I am mentally going through my list of options.
Thanks for your reply. I'll add it to my list.
Ginagce

As far as AIs go, Aromosin is different than Arimidex and Femara. They all inhibit aromatase but Arimidex and Femara work in a different way and are called non-steroidal AIs and Aromosin is steroidal (working on a different part of the biochemical reaction than the other 2). It does not have the same side effects - especially the side effect that can cause some women to get high cholesterol.

There have been clinical trials on Stage 4 women who failed Arimidex but were switched to Aromosin and it worked for them because of the biochemical mechanism difference. Many women also do not get the muscle and/or joint pain from the drug.

Tamoxifen can also cause joint pain.

Becky - you just rock. I love all of your detailed info. You understand this stuff so much better than me!

There is very little risk in trying another brand of A.I. So, why not just trying for a few weeks. I switched from Arimidex to Ferama and eliminated the side effect. Altho these drugs are almost identical, there is some subtle difference among them. I highly recommend trying different ones before you give up.

Can you wonderful members tell me if AI's actually act to kill tumor cells, or do they just inhibit estrogen and slow down any tumor growth? Can AI's acutally starve the cancer cells to death?
I go back for my 3 mo check-up on 10/1 and we discussed at my last appointment if my CA27-29 continues to rise, I would consider going back on an AI. This time I will definetly use an estrogen cream or the e-string. I have been suseptible to UTI's my entire adult life. Have one right now. I know what caused this one. Took too many antihistimines (Hayfever season) without enough water & cranberry juice. I also was drinking OJ and Diet Coke. I know better. The OJ and the Diet Coke irritate my bladder if I don't drink enough water to dilute them.

AIs as well as Tamoxifen inhibit out of control cell growth so that the cell dies.

Yes Ginagce, I have had joint and bone pain with Tamoxifen. I've been on it for about 2 months, and I started to experience these aches about 1 week after I started it. My hips and left knee have given me trouble, as well I have muscular rushes of pain intermittently.
I take Naproxen ( here in Canada that is like Aleve but a prescription that is stronger). I have also started taking glucosamine chondroitin as suggested by some of the gals here on the site. I think the pain is subsiding a little, and hopefully will fade as time goes on and my body adjusts to the Tamoxifen. Could be the herceptin too, which we all know can cause this type of pain and stiffness.

all the best
caya

I switched from ARimidex to Femara and was on that for years without pain.

Thanks Ladies
 

As always, ask a question and get great information. Will let you know how I make out on new drug of choice!

Bless you all.

Ginagce

pain is a real pain
 

Hi Ginagce
Sorry you're having all these pains. I am on Arimidex and keep threatening my onc. that I am going to go off of it. If I do, I am going to try Aromasin.
Of the three A.I.'s, Aromasin works differently than the other 2. Femera and Arimidex are non-steroidal and Aromasin is steroidal. So there is a chance that you won't get the same side effects on Aromasin. ( Gee, I think I've just about convinced myself to try it :) ) I also had joint pain on Tamoxafin. It wasn't as bad as Arimidex, but it was bad enough. Good luck with all of this.

Anti Inflammatory / Pain Relief
 

I don't take AIS but... RB's posts re OMEGA 3'S AND 6 (which I take) have anti-inflammatory benefits, in addition to an array of other good reasons to take these daily. Check it out! OMEGAS are big news of the day! Can't stop seeing experts on television touting these!

Andi

Don't steroids have an anti-inflammatory effect. So would Aromasin be a better choice than Arimidex for us women with arthritis?

I recently switched from Arimidex to Aromasin and the joint/bone pain is MUCH better. It was worth it.