FIRMAGON INJECTION REACTIONS - Advanced Prostate...

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FIRMAGON INJECTION REACTIONS

GMan-62 profile image
48 Replies

I know from reading about the side effects from Firmagon that swelling, a hard lump, redness, and pain at the injection site is normal and can last for 3-4 days, but it doesn't talk about how intense that swelling will be or how large the hard lump is. I've had 2 injections so far, the initial 2 120mg doses (1 on each side of the abdomen) for the initial dose and 1 80mg dose to the right side of my abdomen for the second dose. Each time I receive the injection, the redness is an oval about 4-6 inches round, the swelling is about the size of a baseball, and there is a hard lump about the size of a golf ball. There is no pain during the injection, but about 4 hours after the injection the pain sets in and lasts about a day or so. The rest of the symptoms start to go away 3 days after the injection, and by day 5 or 6 there are no symptoms or signs I had the injection except a small hard lump about the size of a marble. I have tried to find images that show the typical reactions at the injection site to no avail. It's not a big deal and as long as it's keeping my Testosterone and PSA undetectable, I can deal with it. I just want to make sure what's happening isn't abnormal or unhealthy.

The only reason I can think the swelling, hard lump, and redness is so large is the injections have been given on the lower part of my abdomen and when I'm sitting, or moving a lot the waistband is rubbing against it and causing irritation. When I get my next injection, I'm going to ask they give the injection a bit higher so my waistband doesn't rub against it and irritate it.

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GMan-62
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48 Replies
GP24 profile image
GP24

Here are instructions how to administer Firmagon. I checked that my doctors followed that.

firmagon.com/hcp/dosing-and...

GMan-62 profile image
GMan-62 in reply to GP24

Thanks. Were your reactions to the injection as noticeable as mine?

GP24 profile image
GP24 in reply to GMan-62

No. A few times I noticed the injections the next day. I think if the doctor injects like he does for lupron, you will have problems. The alternative is relugolix, which works just like Firmagon, but these are pills.

JohnInTheMiddle profile image
JohnInTheMiddle

Hi. I'm stage IV high-volume mHSPC and have been on Firmagon for one year. I also have the injection site swelling, and according to my Fitbit, I have an elevated body temperature of 2° C for 2 days after injection.

I've done a lot of research on Firmagon and on what your stomach fat can take in terms of injections. Apparently there is scarring eventually. And I have been concerned that injecting into a scarred location might mean that the drug depot doesn't work so well.

There doesn't seem to be a lot of information about long-term Firmagon injection problems. But for sure the product information emphasizes that the injection should not be anywhere where there's pressure, e.g. under your belt.

I'm under some pressure now from my doctors to move to 90-day Lupron, otherwise known as Eligard. Typically in emergency situations on PCa diagnosis, where there may be risk to the spinal cord from metastases, Firmagon works really well. And then later they say you can move to 90 day Lupron/Eligard.

And basically from a very very high starting PSA and gait problems I now am doing really well and off hydromorphone and have a PSA of zero. All with Firmagon ADT (+ Abiraterone and prednisone + 6X Docetaxel) over 12 months.

Now it gets more interesting. Concerning an ADT switch to 90-day Lupron/Eligard I am less concerned about convenience - which is all what my doctors want to talk about - than I am about living a long time.

And Firmagon and Lupron/Eligard are very different. The first is an ADT "GnRH antagonist" whereas the second is an ADT "GnRH agonist". And if you're concerned about cardiovascular issues, apparently Lupron as an agonist is significantly worse than Firmagon for CVD. (Even the switch from the one drug to the other seems to be problematic. I don't think the testosterone flare that's associated with starting Lupron is a good idea. Apparently any flare is bad and contributes to PCa "escape".)

There's quite a bit of research about this that you can find.

So every 28 days I have the inconvenience, and flu-like symptoms, and a sore red injection site, but I want to stay on Firmagon.

By the way the injection instructions for Firmagon are very, very specific. There are nine steps. Some of the steps even are concerned with ensuring no bacterial contamination. Nurses have special training to do it, it doesn't seem to be too difficult but it has to be done right. And the nurses should not take a casual attitude to it.

So there's my experience with Firmagon and my concern about a switch to Lupron.

A big success for you!

ImaSurvivor1 profile image
ImaSurvivor1 in reply to JohnInTheMiddle

From what I read another good reason NOT to switch from Firmagon to Lupron, is that unlike Lupron, Firmagon does not cross the blood/brain barrier, which I am told means there is less likelihood of cognitive deficit.

JohnInTheMiddle profile image
JohnInTheMiddle in reply to ImaSurvivor1

Hmmm. Thanks. Got to look that up now.

bluesnjazz profile image
bluesnjazz in reply to JohnInTheMiddle

I can identify totally, having had those injections now more than a dozen times. Why not try relugolix, which is an antagonist in pill form? They've been approved in the U.S.

JohnInTheMiddle profile image
JohnInTheMiddle in reply to bluesnjazz

Unfortunately has not been approved in Canada yet.

bluesnjazz profile image
bluesnjazz in reply to JohnInTheMiddle

Oh, then you're in the same situation I am here in Japan.

Tall_Allen profile image
Tall_Allen

Injection site reactions are common with Firmagon. The good news is that they are the worst with the first 2 shots. You can try icing the site before and after the injection to prevent it.

Cactus297 profile image
Cactus297 in reply to Tall_Allen

But does the competency of the nurse injecting also count? Thank you.

JohnInTheMiddle profile image
JohnInTheMiddle in reply to Cactus297

Yes. Should never be a first time nurse who doesn't have supervision. It's not that difficult but you do have to pay attention. Also you have to track where the injections go and possible scarring.

d3is4me profile image
d3is4me

GMan I have similar reactions to you had Firmagon 15months had 1 very bad shot they hit a blood vessel

GMan-62 profile image
GMan-62

Thanks for the input all. Not gonna worry about it. It’s just another thing to keep it under control.

Brianne07 profile image
Brianne07

HI you have to remember it is like a foreign object entering the body .At the injection site mine does swell about the size of a golf ball. I inject my self and have been doing it for about 14 months.psa down to 0.06 best wishes

JohnInTheMiddle profile image
JohnInTheMiddle in reply to Brianne07

Bravo!

Nusch profile image
Nusch

This is one option. The other option is: Ask them to inject very very slowly. It makes a huge difference, at least for me.

Gatodd profile image
Gatodd

I have been on firmagon since December 2021. Except for a very tolerably painful lump for a week or two, my reactions initially were mild.

The last two shots caused me to feel like I had the flu for about a day. For my March 2023 shot, it stung badly upon insertion and caused me to feel much worse than ever before. My lump is still there after 23 days. I think the nurse used a smaller needle and may have hit a blood vessel.

For April, I am going to more thoroughly discuss the injection technique prior to delivery.

Has anyone else had worse symptoms with later injections? My effects on first 10+ were very mild.

JohnInTheMiddle profile image
JohnInTheMiddle in reply to Gatodd

#21 and counting.

turkeyjoe1 profile image
turkeyjoe1

I had large lumps for weeks, fever for 3 days and pain for 3 weeks. Not doing that again.

Ron53 profile image
Ron53

Your reaction seems almost identical to mine...well, maybe mine is somewhat less than baseball size. I have been receiving Firmagon off and on for several years. I prefer it over Lupron as the reduced side effects (for me anyway) are worth the monthly injection and the reaction it brings. The nurse who gives it to me is very schooled and experienced at administering it, which as noted by others above is very important.

Dannyboy48 profile image
Dannyboy48

that’s normal ,been on firmagon 6 yrs

As time goes by about a year later the redness subsided a bit

To. Me it is all worth it 👍 firmagon needs a very slow push because the serum is very thick

I have them change the injection site every month. I go right to left then upper to lower each month

Seems to help it’s worth a try

Good luck and keep on smiling 🙏👍👌

GMan-62 profile image
GMan-62 in reply to Dannyboy48

Thanks Dannyboy,

I agree it’s a small price to pay. I’m glad to hear others hav had the same reaction. I’ve never had such an intense reaction to any injections. Even the Anthrax injections were minor reactions.

I had a recurrence 3 months after my RP in Feb 22 and my PSA was 1.68. Started Casodex 1 June22 and Eligard 14 June 22. My PSA went to .01 and has been there ever since. I have my next blood test Monday and hope it’s still at .01.

Dannyboy48 profile image
Dannyboy48 in reply to GMan-62

keep on dancing and smiling and careful crossing the street. Don’t need getting hit by a bus. 😂👍👌🙏🇺🇸🍷

PGDuan profile image
PGDuan

sorry to hear - but I had exactly the same experience. Took a week to get better. Subsequent maintenance doses were smaller (80 v 120) and reactions not quite as bad. Over time I found that it wasn’t as bad if the nurse went really slow and avoided any prior injection spots. Hang in there.

GMan-62 profile image
GMan-62 in reply to PGDuan

Thanks for the info. Sounds like this is normal so I’ll continue to plug along. Good luck to you.

JohnInTheMiddle profile image
JohnInTheMiddle in reply to PGDuan

Company instructions are very explicit that the injection must be very slow, I think over 30 seconds. There's no excuse for anything but.

London441 profile image
London441

How’s your cardiovascular heath and overall fitness? IMO CV issues are the only good reason to choose a LHRH antagonist like Firmagon. Agonists (Lupron etc) don’t produce the swelling issues.

GMan-62 profile image
GMan-62

cardio and health are great. I started on Eligard in June 22 but for some reason my October 2022 6 month injection didn’t last and my T level went up to 162. Don’t know how long it was up. Doc wanted me to switch to Firmagon to quickly get T back down. Maybe in a couple more months will try Eligard again. Thanks and good luck.

JohnInTheMiddle profile image
JohnInTheMiddle in reply to GMan-62

Or maybe not?

Cooolone profile image
Cooolone

Yes yes yes... Firmagon/Degarelix injection site reaction is the #1 noted side effect using this drug. I went from Lupron to Orgovyx for CVD concerns due to family history and my blood work at the time, and now. Unfortunately, the pill form didn't work out too well. So we switched to the Degarelix.

I've had various levels of reaction, and I believe it definitely has to do with the application, the angle of the needle, depth of needle, delivery/speed of injection. I've had reaction at the site, redness and swelling. Sometimes it's been ehhhh, no biggie, to WHAM! How'd ya like that one BAM! Swelling, pain, etc. Last injection just 2 days again and the pain built up over hours and that night, couldn't even sleep. Swelling and redness, hearth rate affected, shallow breathing, felt nausea as well. Finally subsided and now it's going away. There's a few things I'm going to try going forward...

First is I will definitely request an ice pack for post injection use, maybe even pre-injection. I already vary the site location and stay away from the belt line. Haven't had any shots above the belly button as I have a tight abdomen and the nurses have noted there's very little skin to pinch and use, lol, never thought this would be a problem ;) . I will definitely request a slow injection as well, usually they are, but once the nurse finished in probably 10 seconds and I asked if she got it all in there...

Is crazy because I've had different reactions with each injection, so it's hard to nail down what had the least impact post injection based upon application. This one as noted was a doozy! Others had little swelling or redness and was great. Seems my right side favors injections lol, but I move it around. Small lumps that feel like a 1" piece of pencil is left behind under the skin, they stay for a long time. This helps decide where to place subsequent injections too.

So aside from speed of delivery, injection site prep, post chilling... What might we think would offer ways to mitigate the reaction(s) we experience? Anti inflammatory treatment, etc?

Anyways, thanks for posting, thought I was the only one having these issues, lolz

LongevityAT profile image
LongevityAT

Had my initial, 2 injection dose last week. As Tall_Allen suggested, I iced the areas before the shots and didn't feel anything. For the next 3 days there was slight pain when I would bend over, and very tolerable. I do have a couple of small lumps, maybe the size of marbles.

However, I expected very noticeable side effects but haven't had anything that said "that was because of lowered T". Maybe felt a little fatigued yesterday but we did a lot of walking around the Grand Canyon on the drive back to Georgia, so can't necessarily attribute to Firmagon. Have others experienced minor side effects after initial dose?

Nusch profile image
Nusch in reply to LongevityAT

Yes, me too. When feeling fatigued, it’s best to exercise. After sport fatigue is gone and replaced by pleasant tiredness (which is different to fatigue). If you are fatigued and don’t move, it’s getting worse.

j-o-h-n profile image
j-o-h-n

Better yet................... let them inject your wife instead...................I do that for my blood tests........(Doesn't hurt a bit).....

p.s. In the Army National Guard we had to sing a song to our platoon sergeants. "When I grow up I don't want to be a GMan".....

j-o-h-n <===<<< Senior management is about to spike my spikes....

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 04/15/2023 1:07 PM DST

GMan-62 profile image
GMan-62 in reply to j-o-h-n

Thanks for the humor j-o-h-n. Your posts always make me crack up, and remind me you can’t take life too seriously. Live, Love, Laugh!

j-o-h-n profile image
j-o-h-n in reply to GMan-62

And don't forget Laid..................

j-o-h-n <===<<< Senior management is about to spike my spikes....

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 04/15/2023 7:08 PM DST

JRPnSD profile image
JRPnSD

My 1st 4 months of ADT were Firmagon via injection, but I couldn't take the pain and irritation, so switched to Orgovyx (oral version of the same antagonist ADT). Such a relief.

slpdvmmd profile image
slpdvmmd

I was treated with a short course of Firmagon and have persistent lumps at the injection sites now 5 years. It also still hurts if I am injected in this area so I try to direct any injections to my posterior. As a retired physician my impression has always been that there seems to have been some form of fat necrosis initiated by the Firmagon. A not uncommon phenomenon around incisions when operating on obese patients. While I have not put a lot of time into researching this hypothesis, my superficial look failed to find firm evidence to support my clinical diagnosis.

efsculpt profile image
efsculpt

I had the nurse inject one side of my navel, then the other, then move up, and repeat. The only time I ever had "Weightlifter Abs".

Craig

dave2 profile image
dave2

The best article I’ve seen on minimizing injection-site reactions associated with Firmagon was written by a group of doctors and nurses and published in the Canadian Journal of Urology in 2016. The article is based on data collected from 25 centers across Canada, and it discusses three air bubble techniques; the Z-track technique; and the 30-second rule for delaying needle withdrawal post-injection. It doesn’t mention icing the injection site, which I also think is helpful.

Here’s a link to an abstract of the article plus a path to the full text ($35):

pubmed.ncbi.nlm.nih.gov/268...

Unfortunately, I haven’t been able to find the full text on Sci-Hub, but I will send you a copy if you PM me.

skiingfiend profile image
skiingfiend in reply to dave2

Here is a similar open access article published after the CJU.

Go to Table 2 for summary of recommendations.

onlinelibrary.wiley.com/doi...

Cinderelda profile image
Cinderelda

My husband has had 14 injections. The last at a different clinic. Incredible difference when the nurse follows the protocol. She recommended massaging the area after.

You guys don’t need any extra frustration from poorly administered injections. My best to all of you!

Carlosbach profile image
Carlosbach

I had my first Firmagon injection a month ago. I reviewed the injection protocol with the nurse before the shot, and she appeared to be meticulous, but nevertheless the injection left me with a hard, swollen spot that was almost as big as my hand. It was feverish and painful for 5 days, and there were dark bruises on my abdomen, just below the swollen area.

Just had my second Firmagon injection yesterday. As TA recomended, I iced the injection area prior to the shot, and immediately afterwards. Today I have a touchy area about the size of a dollar pancake at the injection site. Much smaller, and significantly less painful than the previous injection.

ImaSurvivor1 profile image
ImaSurvivor1 in reply to Carlosbach

That makes sense, because the first injection is supposed to be 3 times as much as the subsequent ones (240mg vs. 80mg) . I hope they did the first one in two injections -- half on each side of the abdomen. If not, that may explain some of the rough side effects -- at least those at the injection site.

Carlosbach profile image
Carlosbach in reply to ImaSurvivor1

Thanks survivor. For the first implant they only gave me 80mg because of the serious psychological SEs I was experiencing after 2.5 years on lupron and eligard.

Just had my 4th dose on Tuesday and it is significantly less painful than the first one.

GMan-62 profile image
GMan-62

Had another Firmagon in the 6th with virtually no reaction. I have them do a bubble in front of and behind the medicine the syringe, administer very slow, and wait for 30 seconds to remove the needle after the injection. Oh and I ice down 15-30 minutes before the injection.

As long as the nurse listens to my recommendation the shit is no big deal.

SadProstate profile image
SadProstate

Hello GMan I have all of your post injection problems but mine tends to last a couple of weeks and can be anything upto 4-5 inches diameter also as the redness rescind it leaves an unhealthy bruise (don't suppose you can have it injected anywhere else)

I was diagnosed 2021 December - at times it's difficult to differentiate whether I'm LIVING or just EXISTINGwhen I had the experienced nurse at hospital for initial 3 times dose she spent a long time rubbing the injection site making sure all of it was dispersed

My last injection didn't last a month as my PSA doubled every week in 3 readings - thinking that the lump left is a part of Degarelix not used?

To back this summation up I have Liver Cirrhosis which struggles with the loss of Testosterone - the last time when I believe it wasn't applied correctly my liver was fine

Apologies my reply was meant to help you yet it's turned out me wallowing in being ill (as an ex friend called it)

I have 4 co- morbidities and am 60

So won't benefit from any progression to a cure but for the younger members medical Progression moves at a great speed so I hope you all get to the time when they give you a tablet and the cancer has gone :)

Best wishes and good health

Colin

GMan-62 profile image
GMan-62 in reply to SadProstate

Colin,

I went with the firmagon injections through November and things didn’t get much better. It seemed like I only felt well about 6 or 7 of the 28 days. So no sooner than the reactions I had went away, it was time for another injection. I too am on lifelong treatment. Lupron & Elegard didn’t last long for me and Firmagon worked but the reactions were too much. After lots of research and seeing how others were coping, I decided to go with a simple orch. My T level ranges between 12 & 21 and my PSA remains around .01 & .02. The hot flashes are not as often, and I don’t seem to experience too much fatigue. For me it was a good decision. Sometimes I wonder why I didn’t just do that when I had the prostatectomy in the first place.

Good luck to you, and my prayers are with you.

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