Hi - yesterday I had my 3rd monthly (80mg) injection of Firmagon. For all my previous injections, including the 2 initial loading doses, I did not have any major side effects, just some minimal soreness at the injection site which resolved in less than 2 days. Yesterday's injection was a little bit more sore but nothing extreme. During the night, I developed severe pain (8-9 on the pain scale) in the side of my abdomen and my lower back, near where the injection was given along with difficulty taking deep breaths. The pain eventually became intolerable and I went to the emergency room early this morning. I talked to staff and they were not familiar with Firmagon.
The ER team ran a CT on my abdomen, primarily looking for kidney stones or possibly a problem with my appendix. The CT came back clear, it could not identify the cause of my pain (which had not subsided). Even now, it is a 6 - 7 on the pain scale and am hoping I'll be able to sleep tonight. I'm concerned that the source of pain could be caused by yesterdays injection. Is it possible to accidentally inject the drug into the muscle tissue below the subcutaneous? I have noticed that the depot or "lump" from yesterdays injection that always forms after the injection, is much deeper than what it has been in the past. Is anyone else familiar with an issue like this? Suppose it could be muscle spasms? I only have two injections left and if it is a Firmagon issue, I'll want to change my ADT drug in 30 days. Please let me know your thoughts, I don't want to go back to the ER, they just aren't familiar with Firmagon.
Hope this was clear, let me know if there are any questions. Thanks!
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I took Firmagon (degarelix) for a year. A couple of points. Firmagon should be prescribed by a doctor experienced in the use of hormonal therapy and prostate cancer. It must be administered by a healthcare professional (i.e. someone who knows what they are doing). A common side effect with Firmagon is an injection site reaction. I had abdominal soreness each time I had an injection. Common reactions include pain, redness, node or hardness and/or swelling. Fortunately, this sort of reaction usually resolves itself after a few days. You describe this with your initial doses. The kind of severe abdominal pain and trouble sleeping that you describe with your last dose is very uncommon. You definitely need to speak to your urologist or oncologist. I would let your pharmacist know as well. Good luck!
I was on Firmagon for several months prior to switching to Orgovyx... I can tell you that proper administration of the shot is crucial... It's not just a quick intramuscular shot and off we go... It's crucial the the nurse is familiar with Firmagon injections...
You must pinch the skin of the abdomen, elevate the subcutaneous tissue and insert the needle at a 45 degree angle and then SLOWLY discharge the syringe... It must not be injected too quickly or into the muscle tissue... I'm thinking this may have occurred with you... But I would think your body will "use it up" , for lack of a better way to put it and your pain should subside...
I used to ask the nurse specifically in the infusion center if she's familiar with the specific Firmagon injection protocol... They give many more lupron shots than Firmagon so they need to know or be reminded!... Hope this helps... 🙂
My son had his first Firmagon injection in December and he said the pain was so bad that it was much worse than his robotic surgery. The pain was terrible and it lasted I believe over a week. They told him that he had a bad Firmagon reaction and switched him to Lupron and he’s done well on that med.
Afterward someone posted that the Firmagon was probably injected poorly/incorrectly, not the Firmagon itself. I don’t know if this is true or not but I would try to get someone who is trained in injecting Firmagon.
I hope this helps because I know from my son’s experience it can be ever so painful.
I had a bad reaction in my first Firmagon injection, two doses. I took them in the morning, the nurse iced the two sides, and the aplication was actually better than I could expect. I was in an oncologic hospital, and the nurse seemed very used to the procedure.
I worked the hole day with no problem, but when I went to bed the places where the injection were given started swelling. Then the pain started, and only keep geting worse. I could not sleep, wake up with two big red and hot lumps in the belly, and an unbelievable pain. I also ended up in the ER, at the same hospital where I got the injections.
I can say that also among the docs their first guess was a bad application, but their major concern was an infection. They did an US in my belly and discarded both, they could see the depots and two big edemas around them. My MO was called, and he sent me home with only dipirona for the pain and prednisone for alergic reaction.
For a week the pain was awfull, I barelly slept, then the pain started to decrease slowly, for another week. Two unbelievable weeks, but no major problems after all. I changed for Zoladex from there.
Not a nice history, but I hope it ends up for you like for me, a bad memory in this journey. Hold on, wish you the best.
I could not take the pain of monthly Firmagon for ADT, but I wanted an antagonist version. I switch to the antagonist Orgovyx, a daily pill as soon as possible. Thank goodness for this option.
I could not take the pain of monthly Firmagon for ADT, but I wanted an antagonist version. I switch to the antagonist Orgovyx, a daily pill as soon as possible. Thank goodness for this option.
My husband has been on firmagon for 5 1/2 years. Most times he has only minor inflammation localised to the injection site which resolves within a couple of days. No problem.
However, one time a few months ago he had the same reaction as you describe. He felt really ill after the injection with pain and nausea. Also there was no palpable lump as there usually is. Fortunately after about 48 hours he felt OK again. We put it down to an injection poorly done - altogether too deep and probably into muscle not sub cutaneous. At the time we even wondered if it had gone deeper! And we worried that it might not be able to act effectively, but his PSA readings were as expected so it was OK.
The injections have to be done exactly as described in the paperwork and usually the nurses do it well, following instructions given by my husband, because often they've never injected firmagon before. My husband has done his own injections many times when we've been travelling.
On this occasion, however, the nurse just wouldn't listen. Thought she knew it all and he unfortunately bore the consequences. Now he is even more assertive when getting the injection. He makes sure they do it right.
Fantastic to learn about doing your own injections.
I have seen a few references to this. I would like to try this myself - and I have also read a lot about proper injections. (I'm staying with Firmagon a year and a half now because it is, as one commenter noted, a GnRH "antagonist", which has a better CVD side effect profile.)
Do you know of any layperson's guide to doing your own Firmagon infection?
Hi JHMX My husband just follows the procedure for injection that comes with the Firmagon. If you haven’t seen the instructions you can do a search online for how to inject Firmagon.
Essentially: assemble equipment per instructions; do not shake the vial but swirl it until ingredients dissolve; draw up correct amount without bubbles; pinch the abdomen into a bulge so the needle will go subcutaneous not into muscle; needle angle 45 degrees; inject slowly (it’s actually hard to do otherwise because of resistance); remove needle slowly so there is no drag of the Firmagon up into the dermal layer of the skin as this can increase local inflammation; apply ice pack on and off afterwards if necessary.
Firmagon has been shown to not only have fewer CVD side effects but also (in clinical trials) to be a more effective ADT than lupron in controlling PC. For that reason we’re sticking with Firmagon too. The only alternative we would consider is Orgovyx but unfortunately that’s not available on our PBS (Pharmaceutical Benefits Scheme) here in Australia. Not yet at least.
Super thanks Gail this is fantastic. As for Orgovyx, it'd be great for obvious reasons, but it's crazy expensive and not yet approved in Canada. I'm sticking with Firmagon although my medical oncologist suggested going to Eligard - "for the convenience". All the technologies are very different as in "antagonist" versus "agonist" (i.e. Lupron etc.) - with evidence that an antagonist is better for cardiovascular health. This is in addition to any evidence that an antagonist is more efficient against prostate cancer (some will argue this point from different studies).
I have to decide if I'm brave enough to do the self-injection! Just the fact that you have shared your note here is very helpful! Thank you so much.
I had the same problems for a few months when first diagnosed. Change to a 3 or 6 monthly tryptorelin/ decapeptyl shot. Quality of life is much better.
It is not difficult to inject Firmagon but the nurse or medic must know how. Otherwise it can be from very painful to just painful. Normally it clears out in 2 days. I always got a slight fever of 100 °F.
I took these for 26 months. Eventually I injected myself. The instructions are available even in YouTube. It saves going anywhere and paying some ridiculous sum.
Hi I have had 20 months of Firmagon some are better then others lt depends a lot on the nurse i find application of an ice pack for 5 min after helps . I have one very bad shot when they hit a blood vessel and had very bad reactions
I have been on firmagon for over 5 years suffer pain at the site nurse changed the site to my leg still painful but not as bad also I take anti hestimine and a steroid find this helps hope this helps
I'm on Firmagon just around a year, I have some pretty nasty reactions, usually swelling at injection site, but rather badly. The lump swells up to almost tennis ball size, redness around the site and sometimes pain. 3 months ago I had the same reaction, nasty pain, unusually severe, kept me up all night, shallow breathing, couldn't stand it. I was an inch away from heading to the ER, but sat it out. Eventually falling to sleep early morning...
And yes, had a nurse once, delivered the injection straight in, dropped the plunger quickly, within a few seconds! Before I could even react, I was like woooooo... I don't think you did that correctly, and her response was "I do that for all the Patients, never had a problem"... A bit cavalier, I explained no other nurse had performed the injection that way and I've read the drug makers instructions as well, as noted above, pinch and lift skin, 45° angle, slow 30 second application... Not straight in and quick! Didn't seem to phase her. Simply amazing... So, I spoke with my Onc Team about it, they said it was probably ok, but we check monthly PSA anyways and would watch! I was like ???
But nothing to be done because we don't test blood levels for the drug... Anyways, since then I ask the nurse handling the injection if they're familiar with proper procedure for Firmagon! I don't care if they don't like being questioned, tough on them if they can't take being questioned. I've used ice after the last 2 times but the swelling usually comes 12+ hours later...
Used degarelix for a long while. Before I was given it I took ibuprohen, then 30 min before inj I asked for an ice bag and placed on anticipated inj site. After inj I waited 15 min with the ice. If I had any pain at home and overnight -back to the ice. When home I switched to tylenol if needed. Insomnia was the major problem, but found a good combo of meds. I like it - its Tier 3, and it drops the PSA in a month. Easier on head and less dangerous to heart. Had labs for liver problems, but results were OK. Best.
I could not deal with the pain of those injections like many others that have commented above. Switched over to orgovyx, if a person's insurance covers orgovyx with a reasonable copay then it is a no brainer. I mentioned the reaction to a very experienced radiation oncologist and he said he had seen instances where firmagon reactions had perforated the abdominal wall causing serious issues. Terrible drug, but effective.
Thanks everyone for their thoughts, experience and input. Today I met with my Urologist (whose office administers Firmagon to me in Georgia) and my RO, Dr Kishan at UCLA (3 mo follow up). My specific experience yesterday was definitely outside the norm and both doctors agreed it could have been the result of a muscle tissue injection vs subcutaneous. And while neither Dr had heard of the intense lower back pain I experienced, I believe it was a muscle spasm caused by the muscle tissue injection. Nothing obvious makes any sense and this is plausible.
I am going to explore moving to Casodex for my last two months on ADT, but it will all depend on what my pricing will be. Otherwise, with only 2 injections to go, I'll continue forward with Firmagon and make damn sure the nurse reads the directions for administering that I'll bring with me!
sounds scary. Hope you don’t get any repetition. I usually get the usual local reaction, reddening of the skin, heat, tenderness, a hard subcutaneous lump that eases over a week. Usually get 24 hours of mild flu like aches. My wife, a nurse, usually gives my injection though can do it myself. Sticking with it.
I'm curious about giving yourself the injection. Because this is done in the doctors office, it falls under Part B so it is 100% covered with a copay. Is it treated differently by Medicare (assuming you are on Medicare)/
thanks for responding. Firstly, I’m in the UK. A nurse at the surgery does offer to do it but as my wife is a nurse, we collect the prescription from the pharmacy. As it’s not difficult to do, quite confident doing it myself. The pack comes with all the instructions.
Thanks. I carry those instructions with me to each injection and they still get it wrong. Guess some habits for nurses are hard to break. Next month I'll review instructions with the nurse, step by step.
I self inject firmagon GSDF who made comments about it is on the money.I have an nursing EMT background so i make sure i use antiseptic at the site ,glove .I grab a hunk of skin enter at 45 degrees very slowly inject.Also making sure the firmagon is dissolved well before drawing up.I would say maybe your a little unlucky to have a reaction.No body ever talks about allergic reactions?
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