Lupron side effect?

Just got my Lupron 3 mo shot. Within 2 hrs came down with flu symptoms and gout flare. Urologist said "not me!" Anyone else experience similar side effect? I've been on/off Lupron for 15+ yrs with no problems.

herb

45 Replies

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  • Been on Lupron since last June. Major joint pain, brain fog, muscle loss and pain, lost hair everywhere but the top of my head, very major fatigue. On the bright side I gained a lot of fat and my PSA is <0.1.

  • I haven't had the pain, except the injection site hurts for a few days. Icing in the hours after the injection helps.

    I also haven't had your bright side. I'm trying to eat healthy & I'm losing weight, & my PSA hasn't been anywhere near that low since right after my RP in 2003 & then after my EBRT in 2004.

    Neal

  • Had my 1st Lupron injection December 2016 only side effects so far frequent urination n occasional hot flashes

  • Herb,

    I never personally experienced that side effect from my short time on Lupron,, however you can get a pretty comprehensive description of everything known about any drug at a website maintained by the National Library of Medicine (NLM). Here's their starting page for Lupron:

    druginfo.nlm.nih.gov/drugpo...

    Looking at the NLM summary and clicking on side effects, I see that "flu like symptoms" are indeed a possible side effect.

    I also looked at the drug label page and clicked on the link to TAP Pharmaceuticals' label for leuprolide acetate. They had a list of common side effects and another list of uncommon side effects, affecting less than 5% of people in clinical trials. Flu like symptoms were in the under 5% group.

    My interpretation of this is that, yes, the injection could have caused your side effect but it's an uncommon side effect and it's not surprising that your urologist hadn't heard of it. {How many doctors ever read the drug labels for the drugs they prescribe? And why bother when the drug company salesman tells them all they need to know :). In fairness, it would be pretty hard for a doctor to keep on top of every unusual aspect of the diseases he treats and the drugs he uses.)

    Alan

  • It's the doctor's job to keep on top of Every Aspect of the diseases they treat, and drugs they use. Anything less puts the patient's well-being and life at risk.

  • MikeMit

    AMEN!!!

    Rich

  • you gotta be kiddin! IF NOT YOU BETTER REALIZE THAT YOU AND ONLY YOU ARE RESPONSIBLE FOR YOUR WELL BEING AND LIFE.

    HERB

  • You're both right. Your doctor SHOULD be responsible, along with your pharmacist, for making sure that you're fully informed about side effects, preferably with the percentages of patients who get each SE, or at least which are common, less common, or rare. But having a major disease, as my daughter discovered with Type 1 diabetes, forces you to become well informed--something this website is really helpful for. Even if you read all the SEs, though, it's hard to remember it all, especially if they're not common & don't happen right away. It took an oncology nurse to look at my easily bruised arms & hands & say "Oh, you're on prednisone." (It goes with Zytiga.) Later, she told me I'd developed a "prednisone fake beer belly."

    Neal

  • he should have a PDR on his desk, plus a pair of glasses to read the tiny print used on the under 5%. If he doesn't, he can expect to look uninformed on a regular basis.

  • you mean you expect a busy doc to take time out to read something? Actually, while I am unhappy with this doc, he and a nurse responded quite professionally. They confirmed I had received lupron, they checked that flu-like symptoms are a possible but unlikely side effect and suggested I contact my GP.

    herb

  • This is an example of where handouts are essential. The Kaiser health plan gives you a handout for each medication that's more useful than the company insert. They also provide a pharmacist consult when you start a new med.

    The doctor should know about all your meds, & you should tell your doc about anything that's not in his or her computer. It's your doctor's job to make sure you're not prescribed conflicting meds, or meds that are contraindicated because of a known medical condition.

  • Hello Herb, I have been on Lupron for over 5 years now a shot every 3 months. For 2 years I had hot flashes and chills, and increased urine flow. Since Lupron is used to tell your pituitary to not send a message to your body to Not make androgens, this means that estrogen becomes the main hormone. Whenever your hormones change (male or female) you get hot flashes. Women experience this with menopause. The side effect I have now is that for about 1 week after the injection I get tired in the afternoon and take a short nap. I wish you well, my PSA has been 0.00 for over 5 years.

  • Hi Jim,

    You're doing much better than I. I've been on and off for 15+ yrs and the damn psa never gets below 0.05 and tends to move up fast once I stop. PSADT can be 3.5 mo, which isn't good. The flu and gout attack was a new side effect for me; I've been lucky over the years with few side effects and never serious. Keep up the good work :-)

    herb

  • Jim, this is what we tend to think but I don't believe it's accurate. If I remember correctly, it's because the antiandrogens also drive down our estrogen that we get hot flashes--the same as what happens with women after menopause. I hope many of you are lucky like me & the hot flashes go away after a while.

  • Thanks Neal for the input, I'll check it out. Jim

  • You're welcome Jim. Maybe you can report here what you find out. Neal

  • Hello Herb again! Thanks for your reply. You know the flu is going around now and my immune system is not too good because of 72 radiations 6 years ago. So this may be that you you have the flu and nothing to do with Lupron. As for gout, stay away from gravy. Roasted meat juices are high in uric acid, it comes out of muscle in beef and pork when roasted. Drink more water and talk to your general practitioner about taking allopurinal, a drug for gout. There is a blood test for purines that would let you see how you are doing. They say to not eat certain foods (look it up on Google) but gravy and drippings (like a French dip sandwich) is the real problem. Also, a PSA of .05 may be your lab and the test has a symbol that means "Less than" just before the 0.05. My oncologist said that Quest labs do not go all the way to 0.00 and say "less than 0.05." So no big deal. Also, Lupron is not 100% effective and occasionally a single cell or two may subdivide and go into the blood stream and the enzyme is released that the PSA is measuring. These cells have affinity for the long bones, attach to the inside of the bone usually in the groin area, sink into the bone, and leave a pock mark where then go in. Over time this causes a weakening of the bone. Too much calcium is as bad as not enough, so ask your oncologist about calcium and Vitamin D3 levels for you. I used Xgeva injections twice a year to strengthen my bones, but I have stopped Xgeva now. Xgeva is a drug used by people with osteoporosis. So keep aware of what is going on with you and call your doctor whenever you need. I used 8 hour timed released Tylenol 650mg (available in drug stores) for night time pain in bones and legs and hip. My life is really OK now. I wish you the same!

  • A simple blood test will tell to if it could be gout. Ask fou a uric acid test from your dock and find out.

    Dennis

  • DFZ: I do run high in uric acid, but rarely have physical impact, never as severe as this time. The unanswered question is whether the lupron shot could have triggered a gout reaction. Probably will never have an answer.

    herb

  • After one shot of Lupron , I had hot flashes, mood swings, gained some weigh, no aggressive behavior at all ..:)...0.01 psa..

  • jv: great response to lupron. Keep it up. Sadly, my response is much slower.

  • I had gone to stage 3 and was waiting for my surgery to heal before I started 8 weeks of radiation...so I was lucky I only had to get one shot..good luck with everything..

  • Regarding the flu-like symptoms, the urologist is wrong.

    Regarding the connection with gout, the urologist should either have an open mind or else provide evidence suggesting or demonstrating no causal relationship.

    Here are the facts on Lupron and flu-like symptoms.

    According to

    drugs.com/lupron.html

    COMMON side effects of Lupron include:

    • mood changes, hot flashes, sweating, acne, rash, itching;

    • headache, joint pain, back pain, or general pain;

    • cold or flu symptoms, weakness, feeling tired, trouble breathing;

    (etc.)

    The website for Lupron

    lupron.com/prescribing-info...

    has the following as the final paragraph under the heading "Advanced Prostate Cancer" (emphasis added):

    ——>

    The most common side effects of LUPRON DEPOT include hot flashes/sweats; injection site reaction/pain; general pain; swelling; testicular shrinkage; difficulty urinating; FATIGUE/WEAKNESS; HEADACHE; and joint, gastrointestinal, and respiratory problems.

    <——

  • PAUL, THANKS. My doc wasn't wrong, maybe I worded it wrong. He said flu was unlikely side effect. One resource said it's in the <5% group of reported. Joint and muscle aches are certainly more common. Pure coincidence should not be ignored...even though I did have a flu shot. The gout is stranger, maybe because it's me, or maybe it falls under joint pains.

    herb

  • Started taking Lupron on 8-16-13 never had any of the so called side effects people mention! As a matter of fact had more energy in body after shot was given! It baffled Oncologist! Was changed from Lupron to Eligard on 8-19-16 and initially after this first shot became tired and irritated! Second shot given on 11-18-16 started getting energy back in body again and level of energy very high now! Was walking 2 times a day! 2hours in morning and 1hour in afternoon! I seem to never get tired! And this is the second time around for me on Lupron! First time was 3-20-2005! One for the books indeed!

  • Jeff: THANKS for your reply. Like you, I never really had any side effects from Lupron (yes, hot flashes the first few months in 2001, but that was it). I'm 81 and walk my dog 2 miles or so daily plus play racquetball 2x/wk. So this flu plus gout attack was a surprise. Could be a side effect...or coincidence. Either way, it's annoying; the flu is probably gone, but swelling from/of the gout still with me...coupled with sub-normal temperature.

    herb

  • Jeff, and Herb too,

    I wish I had your experiences, as do a lot of us. I'm only 57, and I'm about beat up. A three year bladder blockage helped in my demise, and maybe I'll regain some strength in time, but as it stands now, I'm pretty darn weak. I feel good overall, but the fatigue is something I can't shake. And, the flashes too, are still unbearable at times. I'm on Lupron full time, with Zytiga, after seven years.

    I'm just amazed with you two.

    Joe

  • Joe, sorry you're having problems. Have you looked at devoprovera or the one other (can't remember name) to control/reduce hot flashes. They may allow you to rest. But I suspect it's really the Zytiga that's knocking you out. Check with others who are using that.

    Also, did you read the email about taking zytiga WITH food? Allows reduction in dose and, maybe, reduces side effects. Another guy reported he was happier with dexamethasone instead of Prednisone. Dig for those two ideas; pretty sure they were on this site. And, of course, you've raised the subject with your docs?

    herb

  • Hi Herb,

    Don't get me wrong here, because the side effects I had from the ADT are mostly gone. I only have fatigue and the flashes. I call it mano-pause. I get the flashes off and on but, I get about a week where they are unbearable. In the early going, I had tried a few meds for the flashes, but none worked. One I thought was going to kill me, it was that bad. Six weeks of hell it was. I did read the piece on eating, but I was a bit leery about it. I will ask my Onc . And the dexa too. Thanks.

    Joe

  • Just started Lupron after 15 days Casodex, my third round. I found Androgen Deprivation Therapy, an essential guide for Prostate Cancer patients and their loved ones. (Richard Wasser suggestions 2014). Outstanding for all concerned, by no mention of flu. But ____ happens...

    PeteG

  • Dear Herb1:

    I haven't started ADT yet, but will. Looks like you got useful info from this group. I have a question. You say, "on and off" for 15 years. How do you (plus Dr.) determine when to go "off" and "on"? Are you on Lupron only?

    Thanks,

    Craig

  • Craig. Good luck to you. On/off decisions? Various protocols exist, none have much of a basis. The one I follow is a) go back "on" when my psa is ABOUT half of the 4.2 it was when I was originally diagnosed...or half of what it was when I went on Lupron first time (psa reached 10). So, either 2.1 or 5. BUT, I have always been on Avodart since starting so you could say my current psa's are 1/2 of what they would be without Avodart. So? pick a number. Actually, I maintain a graph and I can clearly see when psa will hit the ~3 range and plan to start then.

    When "off"? Protocols say when your psa has been "undetectable," 0.05 usually used, for 9 or 12 months. Again, there is little agreement. In fact, my decline is so slow that I have gotten sloppy and tired and gone off after a year or so at <<0.1. Plan to do better this cycle...if I get the chance.

    Remember, also, that I also use casodex and avodart while on Lupron.

    herb

  • Thank you, herb1 I have seen "go off" when PSA hits .05, then "on" when it starts to rise. But, I think Myers felt staying on ADT3 for 12 months gives a longer "off" time. I was told that PC tends to spread at around 5. I am presently heading to 2.0 and beginning to get "antsy" so that may be a good "on" time, in the future.

    Now, to get my doctor to give his blessing on ADT3 intermittent (or change doctors).

    Thank you,

    Craig

  • Lupron is injected in the muscle and Eligard is subcutaneous.

  • hankster, but do note that this is the first time in 15+ yrs that I've had a problem with lupron. Besides "we" the patient ain't go no cherce. Whatever the doc offers is what we get. My urologist now only stocks Lupron 3 mo; my oncologist only stocks Lupron 4 and 6 mo. I don't know if anyone stocks eligard or Firmagon, or even Zoladex.

    herb

  • I had the same symptoms but no gout. I think it is an inflammatory response from the injection site. Thats what mine was. I switched to Eligard. It works great with no post injection flu symptoms.

  • hank: could be, even the gout could simply be inflammation.

    h

  • I was glad my wife was driving when I got my 6 month eligard shot. I felt sick within 5 minutes of getting the shot (drop in blood pressure?) and felt like I had to force air into my lungs. I was tempted to divert to the ER but decided to ride it out. I was unsteady on my feet when I got home. That reaction passed and I was more or less OK the next day. Mild hot flashes and complete loss of libido and underarm hair. Some trouble sleeping and some fatigue but does that come with age (67 now)?

  • "Some trouble sleeping and some fatigue but does that come with age (67 now)?"

    No. It depends more on lack of exercise. Read up on Superslow® (at bodybyscience) weight training and HIIT, try them out, and in a few weeks you'll feel 30 again. (Tip: ignore the research that claims Superslow® doesn't work; ever such study I've seen distorts McGuff's bodybyscience protocol so badly their results are invalid.)

  • I had a reaction like this when I was started on Firmagon, almost immediate dry heaves, drop in blood pressure, nausea. Urologist said he had never seen this before. Switched to Lupron. Worst part is pain in the butt for several days, some hot flashes, some fatigue, but not debilitating.

  • Yes, I remember feeling weird after my Eligard shot and I go down to the hospital cafeteria and have a small snack and some water, then I leave the hospital. Once I went back up to the Doctor's office and waited about 20 minutes before I left, so I could drive home, just to be safe. I've had 21 shots now and I usually take a nap in the afternoon.

  • Ned, years ago a male nurse suggested this to prevent butt-pain after shot: put your weight on the other leg and try to relax the target leg while nurse jabs your butt. It's helped me over the years.. herb

  • All excellent responses. My fatigue has subsided with 1000 mg of b12 daily. I ride x bike 1.5 hours daily. Dr has me on Vicodin for pain in back and knee. Been on for years controlled at 2 pills daily. Have stopped with pain return to insure no addition side effects. The opiate does mitigate pain as does naproxen. But b12 has been a great boost.

  • Hi Herb 1 and others

    I am in the same "Club" of Advanced PC,

    on Intermittent Hormonal therapy (Lupron +Bicalutamide).

    I like to have a glass of red wine with super,which immediately triggers

    Hot Flashes.

    It is known that Soybeans products may help-see Chuck web page or ask him (maack1@cox.net)

    I than include some soy eg : Dry Roasted Edamame,as a side dish and

    the Hot flashes are usually gone.

    It also may be placebo effect,but it is worth trying!

    Cheers

    Victor

  • Victor, sounds good but one caution: soy products contain phyto-estrogens. Maybe good for us, maybe not. But maybe that's why I never had bad side effects-I drank a lot of chocolate soymilk. I guess I can't suggest you give up the wine, eh? I agree that would be out of the question. Even if the soy is placebo, so what!

    herb

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