I went on Letrozole/Zolodex 12/12 and about a week later noticed a rash on the inside of my knees when I shower. About 10 minutes after shower the skin returns to normal. My pharmacy paperwork says to contact Dr if rash, but in order to make sure it is the med, I stopped taking it this Wed. (I mentioned this to a nurse when I went in for Zometa IV on Thurs.) Now, 4 days without med the rash appeared, but much less intensely. I'll call MO on Monday, but I'm guessing he'll tell me to stay off med, which upsets me because this is 2nd AI my body has not tolerated. Mostly this is a vent, but I'm wondering if anyone out there also reacted this way and stayed on Femara?

Honeybair.

Yes I have had almost constant UTI's . My story and others helpful suggestions are on this thread, On the topic Hormonal therapy - before during and after. Sorry don't know how to link it.Perhaps Mod's can do that?

It's been pretty miserable for me.

Topic: UTI's

wintersocks and dtad, thanks for your response. I am learning that what I eat or drink has a dramatic impact on me. I have learned that high potassium foods worsen this condition and possibly vitamin c supplements. i do not want to visit a urologist and got prodded and poked in a very uncomfortable area of my body. i just do not understand the why of recurring infections-well for 3 or 4 weeks-then another infection. Or is the case, no infection-just discomfort. if we could only have some estrogen cream in our Ladygarden, I am certain that would help/. I will research drugs and supplements for interstitial cystitis.

Wintersocks, a big hug to you. I know you are suffering.

Google interstitial cystitis. There's a discussion group for it as well as lists of foods that aggravate it

Honeybair, I have had urinary frequency and urgency issues since April. I started on femara in December 2015. I mentioned it to my MO and he told me to see a virologist, in his opinion it isn't the femara. But it is listed as a SE, and gee whiz, never had this issue before. I still work, and need a referral from my GP to see the specialist, so I have been living with it. It is starting to get to me though. Good luck

Respond to the doctor with the following (or something of this sort): I understand that many of your patients on this medication may not be experiencing this side effect, but it is listed as a side effect in the literature I received, and I did not have it prior to starting this medication. I therefore would appreciate you make this referral for me and avoid me having to make yet another appointment.

Your MO can absolutely make that referral. Mine referred me to a urologist following blood in my urine.

Meow...totally agree. Its really malpractice to tell someone they won't have any SEs. There s absolutely no way any doc can say that with accuracy. You can have any SE to any medication. I also agree that the mentality is that if they tell us we might experience them , then we will. How insulting! We all need to be aware of possible SEs since some can be very serious. Its hard enough to navigate this disease without dealing with docs having this attitude. Good luck to all

I would think the lawsuit would only be applicable to those women whose hair never grew back or grew back very thin after the taxotere though. My hair grew back nice and thick after chemo ended, but is now potentially thinning again on the Femara. If you are actively taking an AI drug, you would have to somehow prove that the ('continued') loss is due to the Taxotere and not the Femara. I would guess, anyway.

amylsp

I do agree with your opinion and that it is difficult to tell which is Tax and which is Femara. I simply cannot tell as both tx overlapped. It is very difficult to find out if people's hair returns to normal following finishing with Letrozole.

I wonder if there are any studies done on this?

My own feeling is that both Tax/Letrozole have impacted my once unruly mop to hair thinning on top and a strange texture as BB says.

" So, I am afraid to mention it, because at 66, am I even supposed to be having intercourse!???" Two words for you Stellamaris - HELL YES!

Been a year on letrozole for me. I had originally heard that generic letro has more severe SE's than the branded Femara (Novartis). None of my insurers would cover Femara, and the cost for 90 days' worth in the Chicago area (Walgreen's, CVS, Costco) range from $2100 to $2700 (and that was last year). Decided to “go outlaw" and bought it instead from Canadadrugs.com. which sold me 90 days' worth of Novartis UK Femara for $588, shipped from River East in London. I had heard of a prior scandal concerning River East shipping a counterfeit targeted therapy drug that was “state of the art" a few years ago. So, before taking my first Femara pill I e-mailed photos of the packaging and pills, plus one pill to Novartis UK for analysis. Word came back a couple of months later that it was legit.

Meanwhile, I knew I had to start letro. I had heard that Teva's version seemed to have the fewest SEs (and my DH, a cardiologist, says his patients like Teva generics when they can't take periodic jaunts to Canada). I called around to all the pharmacies with which my Part D carrier works to see if they could get me Teva, and the chains all told me “you get whatever generics our distributors sell us most cheaply." Take it or leave it, I guess. My cancer center's pharmacy sells the Roxane version, but Humana won't work with them. But there's a little neighborhood indie drugstore with a kosher deli in the front; they are on Humana's list. (Not “preferred," like Walgreen's or Wal-Mart, but still covered). They said they could get me Teva. Next day they called to apologize and asked me if Roxane would be okay. I figured, why not? So 2 months go by—no SEs at all. 3rd month the Teva came in—a few more night sweats, but I've always sweated at night.

Then somewhere on bco someone published a list of all versions of letrozole, with their “inactive ingredients" listed. The longer the list of those ingredients (dyes, fillers, metals, sugars, coatingsetc.), the worse people seemed to do on that version—perhaps due to sensitivities to what could be irritants. Amazingly, Roxane had the shortest list—no coatings, dyes or pigments whatsoever. Then came Femara, and Teva. Accord, Sun, and others had veritable laundry lists of inactive ingredients. So I keep the Femara in reserve (it doesn't expire till 2019), and go for the Roxane or the Teva. My last day before going on Medicare it cost $9 on UnitedHealthcare.

Starting the next month, when I switched to Medicare I was paying $30/month, but couldn't figure out why each month when I went to pick it up the pharmacist said coverage was denied. After all, he had my Humana Part D card on file. And every month my Humana statements didn't list letrozole among my meds. Yet even when I had fallen into the Part D “donut hole” it was still $30—had Humana been covering it, my cost should have gone up. I checked Humana's formulary and it's a Tier 2 generic. Maybe it's because I specified a particular manufacturer? After a 2-hr runaround on the phone, I finally got through and the rep told me that all mfrs. except Novartis were covered—and because I'd recently climbed out of the “donut hole," it should cost me nothing till Jan. 1. Unfortunately, I was out of town and the scrip had expired. So on Jan. 2, when I got home, I mentioned it to the other pharmacist (who was the owner's daughter). I started to read her my Humana Part D card number, and she said, “no need, we have it." Then she looked at my records and said “OMG—Dad's been using your old insurance card all along. No wonder United denied you." So out I walked, new bottle of Roxane letro in hand, for nine bucks. And a free quart of matzo ball soup.

So my SEs have been pretty minor—thin hair (but it’s always been fine, porous and frizz-and-breakage-prone which is why I get keratin treatments 3x/yr); slow metabolism with creeping weight gain (but still can wear my XL & 1Xs); some startup joint pain (everywhere but my knees, which are “bionic”) which disappears after about 20 steps; and the aforementioned night sweats—which I keep at bay using a ceiling fan, tropical-weight comforter and lightweight nightgown. My cataracts, already ripening, ripened so fast I had the surgery for them this fall. Had a R trigger thumb but a cortisone shot slowly took care of it (and had a L trigger thumb years ago). Not sure about my bones, since my baseline DexaScan just before rads came up osteopenic and Medicare won’t pay for another scan till Nov. 2017 (so can’t tell if the Zometa infusion worked either). Skin’s a bit drier overall but I do get the occasional zit; hair on my legs is sparse, but growing again on my ‘pits. Just had my first hot flash (ever) a few days ago, but it was a joy: I was shivering in my poorly-insulated front room and suddenly was able to take off the fleece throw. More of an “oh, it’s gotten comfier in here” flash. Didn’t last.

I think I know why studies have shown Cymbalta seems to ameliorate letro’s SEs: I’ve been taking Wellbutrin (bupropion) since 1999 (to control carb cravings) and my letro SEs seem much milder than other patients’, too. Cymbalta & Wellbutrin are both second-and-third-gen antidepressants that are selective endorphin-receptor reuptake inhibitors (SNRI and SDRI—norephinephrine for Cymbalta, dopamine for Wellbutrin; the first generation SSRIs—that act on serotonin receptors—like Prozac don’t seem to be effective for that, though some SSRIs might lessen panic attacks, hot flashes or PTSD). As for using Wellbutrin for cravings, that began when doctors found it helped people quit smoking (so they repackaged a version as Zyban); there’s a new combo, Contrave (Wellbutrin + naltrexone, aka Narcan) that is specifically prescribed for weight loss. The Wellbutrin stems cravings, and the naltrexone occupies endorphin receptors sensitive to sweets and other dietary tempters (as well as opioids). Interestingly, when I went to NYC & DC for vacation a couple of weeks ago, I’d forgotten to portion out my Wellbutrin into my travel pillbox. Within a day, I was eating bread and desserts (and craved bagels in the morning). Great restaurants, of course. One week after my return, that subsided…but not before I’d put on another 5 lbs.

Tried all the products for dryness. Could open a store. Nothing worked. Then a PT who treats pelvic pain recommended Slippery Stuff. Got it online. Amazing! The only thing that has helped

Anyone who is lactose-intolerant may be interested to know that my research showed lactose as the first inactive ingredient for Sun and Roxane. But lactose is only the fourth or sixth ingredient on Mylan, Teva, Accord, and Novartis. I switched and have had less bloating.

As far as some of the other undesirable ingredients, Mylan and Teva have no talc but do have FD&C colors, while Teva and Novartis have no FD&C colors, but do have talc. It came down to what I could get from the local pharmacy. I called around.

Cymbalta

Duloxetine (Cymbalta) Side Effects & Withdrawal

The anti-depressant Cymbalta (duloxetine) can cause a host of side effects, but stopping the drug could also provoke unpleasant withdrawal symptoms.

Terry Graedon October 15, 2012 Default 1324 Comments

We have received so many complaints about duloxetine side effects that we have lost count. Far more disturbing are the number of people who tell us how hard it is to discontinue this drug.

Decades ago doctors might have told patients taking a drug like Cymbalta that if they experienced anxiety, irritability or strange sensations after stopping the drug, it was probably their underlying psychological problem returning. Now we know it is withdrawal from the medicine.

The History of Cymbalta:

Cymbalta was originally approved by the FDA in 2004 for the treatment of major depression. It is officially an SNRI-type antidepressant. In doctorspeak that means it is a serotonin-norepinehprine reuptake inhibitor and is somewhat similar to other antidepressants such asEffexor (venlafaxine) and Pristiq (desvenlafaxine).

The FDA also approved Cymbalta to treat nerve pain associated with diabetes in 2004. In 2007 the drug got a green light for anxiety and in 2008 the FDA agreed that it could ease the discomfort associated with fibromyalgia. It was also approved to treat musculoskeletal pain associated with arthritis and lower back pain in 2010.

In other words, here was a drug that could relieve your blues and your aches and pains. And the drug company that makes Cymbalta (Lilly) has been aggressively marketing it as a good way to deal with chronic low back pain and osteoarthritis. Perhaps you have seen the commercials on TV promoting the pain relieving power of the drug with the slogan "Cymbalta can help." It sounds almost too good to be true.

Ah…and there is the rub. Although there is a long list of serious side effects mentioned during the commercial, the video images seem quite reassuring and trump the scary message the FDA requires for this medication. So, let's set the record straight. Here, without visual interference, are a list of potential complications associated with this medication.

Cymbalta (Duloxetine) Side Effects

• Nausea, stomach pain, constipation, diarrhea, decreased appetite, vomiting
• Dry mouth
• Insomnia, anxiety, tremor
• Dizziness, fatigue, sleepiness
• Sweating, hot flashes
• Blurred vision
• Headache
• Sexual dysfunction, lowered libido, erection difficulties, lack of orgasm
• Liver damage
• Serious skin reactions, rash, hives (requires immediate MD assistance!)
• Glaucoma
• Irregular heart rhythms
• Bleeding problems
• Blood pressure problems
• Interaction with other drugs (leading to serotonin syndrome among other reactions)
• Pneumonia
• Seizures
• Depressed mood, suicidal thoughts and behavior, suicide

Such a long list of side effects makes your eyes glaze over after the top 3 or 4. That is why we have included stories from real people so you can better understand what these complications feel like.

Stopping Cymbalta:

Even though such side effects are scary, there is another problem with Cymbalta. When people try to stop taking this drug they frequently report unpleasant withdrawal symptoms. An organization (QuarterWatch) that monitors the FDA's database of serious adverse drug events has noted that:

"We observed a signal for serious drug withdrawal symptoms associated with duloxetine (CYMBALTA), a widely used antidepressant that is also approved to treat arthritis and back pain, anxiety, and fibromyalgia. In the first quarter of 2012 the FDA received 48 case reports of drug withdrawal identifying duloxetine as the suspect drug. They described a wide spectrum of withdrawal effects that began when the patients stopped the drug, including blackouts, suicidal thoughts, tremor, and nausea. Several cases involved hospitalization.

Probing deeper into the scientific record for duloxetine we found that withdrawal symptoms were reported in 44-50% of patients abruptly discontinuing duloxetine at the end of clinical studies for depression, and more than half of this total did not resolve within a week or two. In addition, we identified a serious breakdown at both the FDA and the manufacturer, Eli Lilly and Company, in providing adequate warnings and instructions about how to manage this common adverse effect."

Doctors have taken to calling this "discontinuation syndrome." These clinical words do not do justice to what it is like to stop antidepressants like Cymbalta, Effexor (venlafaxine), Paxil (paroxetine),Pristiq (desvenlafaxine) or Zoloft (sertraline) suddenly.

Sudden Withdrawal Symptoms

• Brain "Zaps" (electric shock-like senstations in the brain)
• Dizziness, light-headedness, vertigo, feeling faint
• Headaches
• Anxiety, irritability, hostility
• Nausea, diarrhea, digestive upset
• Tremor, hands shaking, nerve tingles, strange sensations
• Fatigue, tiredness, lack of energy
• Visual disturbances

Again, a list of symptoms does not do this problem justice. Below you will read some stories from people who have posted their comments to this website. We would love to hear your story, positive or negative. Share your experience with Cymbalta or any other antidepressant below.

Should you wish to learn more about dealing with depression through some other strategies, we offer our Guide to Dealing with Depression. You will also find a whole chapter on prescribing mistakes doctors make when treating depression and fibromyalgia in our book, Top Screwups Doctors Make and How to Avoid Them.

Cymbalta Withdrawal Stories from Readers

– D.G. shares a tragic story:

"My lovely, young daughter-in law, who was about to celebrate her 29th birthday, was prescribed Cymbalta, Klonopin, and Ambien and has committed suicide.
"She told her physician and her therapist that she'd had thoughts of suicide but no one took her seriously. She suffered from depression, as well as an eating disorder, and had very low body weight. She also used alcohol.
"Please remind your readers of the potentially disastrous effects these chemicals can cause when taken carelessly or in combination with alcohol."

This from – P.J.:

"I have been on Prozac over the last 20 years off and on and it finally stopped working. The last time I took it about 2 years ago I was taking the generic from Barr – the blue and white capsule. I was feeling as if I were in the deepest dark hole there ever was.
"My doctor put me on Cymbalta from which I had a lot of side effects such as palpitations, feeling constant dread, panic attacks, sweats, lightheadedness and general feeling of not being well.
"She added Abilify which put me over the edge. I was in the worst depression I have ever been in. Finally after living like this for several months, I asked to be put back on Prozac. I was taking the generic from Sandoz. When the prescription ran out I ended up on the big blue and white capsules from Barr.
"Over the last couple of weeks it has been constant crying spells, arguing with everyone and feeling pretty low. I talked to my doctor and she wrote the prescription for Sandoz only generic. The blue and white capsules are like taking a placebo. My doctor said she had had other patients who complained of the same thing and she had to write prescriptions for a certain generic or name brand."