I have been on Firmagon for almost 2 years and I wanted to share some of my experiences and see if there were any ideas to help with some of the side effects.
Injection:
For 1-2 days after each monthly injection, my body is very achy, specifically the joints. In addition, I have an intermittent fever and chills. After two days I am right back to normal. However, on a few occasions, I've had no side effects.
Are there any recommendations on how to limit/avoid these side effects…activity, meds, etc.?
Rest of the Month:
Other than the two days after injection, I feel pretty good. However, I do have achy joints for several minutes after each time I sit and relax for a while. I've also notice my strength has diminished a fair bit. I am quite active, riding my Peloton for 30 mins, 3-4 times per week and trying to work in some dumbbells for upper body.
Does anyone have any recommendations to feel better…supplements, different exercise, etc.
Please share your experiences, thx!
As always, my best to all of you fighting this awful disease.
Greg
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GTTown
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I have a bad reaction to Firmagon which caused a significant worsening of the peripheral neuropathy which never went again even when I did not have Firmagon anymore.
You are describing that significant acute problems like fever and chills associate with arthralgia which remains for while. You could consult with a rheumatologists about what is happening to determining if you should continue with Firmagon. The problem is that your arthralgia may become chronic even when not having Firmagon injections,,
You could change to Relugolix or a leuprolide and see what happens with these problems.
A great many patients are given Firmagon for one month to drop their testosterone to a very low level without the "testosterone flare" caused by the more common ADT drugs. They are then switched to Zoladex, Eligard, or Lupron. It is my understanding that the effect on cancer burden is not significantly worse for most patients than staying on Firmagon.
Try some of the suggested remedies if you’re committed to firmagon, but know that the post injection problems you mention are mostly particular to LHRH antagonists like firmagon. Relugolix or Lupron, Eligard etc (agonists) tend not to have these side effects.
As for your strength, of course it has ‘diminished a fair bit’. The Peloton is great, but ‘trying to work in some dumbbells’ is not going to cut it.
. The longer you mess around the harder it will be. It’s basically non negotiable. Trying’ to lift weights is code for not lifting. Get serious about weight training now! You’ll soon feel so good the effort will feel like nothing.
I was taking an Aspirin about 8 hours after an injection. And since I am on dococyclin 100mg per day i don't need an Aspirin because doxyciclin antibiotics have very strong anti inflammatory effects.
I'm on Firmagon and Xtandi. I use cold pack on injection site for an hour or so depending on swelling and it helps. I've also read on forum Hydrocortisone works for some people. I tried it once and it didn't seem to have any effect on redness or swelling. Because I take so many medications, I try to avoid taking over the counter or additional symptom relievers if I can avoid it.
In general pretty well. Like a lot of the other posters I've lost muscle and endurance from being on Chemo and Firmagon for 5 months (and radiation for bone mets). Have peripheral neuropathy that comes and goes. Some water retention that I take Furosemide for swelling as needed. I started Xtandi a couple of weeks ago after Doxe and we'll see next week how PSA is moving. I've gone from PSA 920 at diagnosis to 11 now so I'm grateful that my side effects so far have been manageable. How long have you been on these two drugs?
I have been on the combo for nearly a year. My PSA has been steady at <0.010. I too have some joint pain. I try to stay active and my job helps with that. I don’t feel I have lost anything in the way of strength but I am still early in my treatment.
I had a PSA of 577 in January 2020 and been around 5 for the past 6 months. So far the side effects have been a nuisance but also concerned of what the impact would be if I changed treatment.
Yeah, I've been following the blogs and looking at the literature to see if what I'm on is the right mix. I guess I look at it as long as my PSA isn't going up I don't really want to change horses on the treatment. Medium and long term effects worry me but I guess I'm relying on MO for the best recommendation.
I was on Firmagon for a year, and had the chills or tired feeling for a day after the injection, and the injection location was sore for a couple of days. I was started on the Antagonist due to heart problems- I have lone atrial fibrillation. I was recently put on Orgovyx-the oral version- and have noticed no side effects other than the expected ones due to ADT. Mostly weakness due to low T. Lost 3-4 mph off my bicycling speed.
Note, that I have also been on abiraterone and prednisone the whole time. Gained a bit of useless weight, and lost a bit of muscle.
I try to alternate an hour on the bike one day and an hour walking the next day. On the bike trainer in the winter. Also some work with weights.
An option is to switch to Orgovyx (Relugolix) a pill a day that works similar to Firmagon while avoiding the monthly shot to the stomach. I was on Firmagon for three months that left jelly bean size knots on either side of my navel that have not fully resolved. I am currently on Relugolix and believe I experience fewer hot flashes. The other side effects of ADT such as loss of libido, muscle loss, tiredness, joint pain etc. continue.
You're lucky..... you now have a smiley face on your stomach......Just tell the women "want to see something that will make you smile?" If they say yes.... then undo your belt /pants and pull your clothes up to display your smiley face....If they don't smile/laugh, ditch them.....
It rapidly dropped my T to castrate level (<10) and has kept it there. My PSA never went to undetectable...lowest reading was .12 and then it started rising. When it reached a level that Pylarify F18 might pick it up I had the scan which revealed two suspicious lesions one on my C3 vertebra and the other on my second upper rib. I had both areas radiated. As of yet my PSA has not come down. Latest PSA is .36. I will be seeing my radiologist in late March to get his evaluation of the treatment.
I recently saw my Oncologist and told him I plan to stop Orgovyx in April. I will have been on the drug of two years. At 79, I would like to have as much of my remaining time feeling normal if that is possible. I will be monitoring my PSA closely and if the PSA start rising rapidly or goes to 10 I may go back on ADT.
My journey started at about the same age. 85 seems like a reasonable goal to shoot for.
Good luck on your journey!
Hey GT! My first shot was a one month firmagon shot . Then I was switched to a tri monthly Lupron . I did that 18 months until I chopped the boys and dropped the lupron . A monthly shot is too much torture . Go to a tri monthly ..
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