Hi everyone,
This is a big moment for me. Following blood tests three weeks ago my clinician wanted to amend my HRT. This thread is specifically about the anti androgen bicalutamide which they have approved for my usage. First, however, here's my backstory on medication so you get the picture:
The backstory on my anti-androgens is that I had real problems with spironolactone. It span me out with very low blood pressure / hyperkalaemia. So that's a no-no as far as I'm concerned. I'm not going near it again. I also briefly tried androcur which is widely used in the Thai trans community. I didn't enjoy the experience of it. Edit: I've just realised I never took straight Androcur but instead Diane 35. I would certainly never again touch Diane 35 despite it being widely used here as it's proven to be very dangerous. (Please note Susan's comment: 'Providing the community warning of healthrisks to a drug would not be in violation of the ban on discussing this medication.' https://www.susans.org/forums/index.php?topic=19242.0)
In terms of DHT inhibitors I've taken finasteride for 18 months which has been brilliant. I did try dutasteride which was pretty horrible: dizziness and other side effects.
So my life with anti-androgens, be they those affecting T directly or indirectly via the more potent DHT, has not been a bed of roses apart from finasteride.
In terms of estrogen, I take estradiol valerate sublingually. My overall E2 level is slightly low, hence my physician's desire to alter my meds. My T level is pretty meaningless because I'm only using a DHT inhibitor but anecdotal effects on my body are considerable e.g. breast enlargement and disappearance of body hair.
So bicalutamide is the next anti androgen to try.
Now, I'll lay my cards out. Not all the advice on this forum is right for everyone. I've had some bad experiences listening too hard to things that I was told here were fine and proved, for me, not to be the case. I suppose something I'd want to emphasise to everyone on Susan's is 1. Your body may not react in the same way as someone else's and 2. Please please please don't self-med. At the bare minimum get tested. Everything should come with a warning and everyone should see a physician.
Here's where I'm at before I pop this pill:
I AM concerned about bicalutamide. This drug, including for this use, is outside the experience of my physician. It's rarely used, including for HRT and, of course, like most meds we take this isn't its primary purpose. What particularly concerns me is that despite being told (on this forum) that side effects are minimal this does not in fact appear to be the case, even in clinical trials at relatively low dosages:
http://medlibrary.org/lib/rx/meds/casodex-2/
http://www.macmillan.org.uk/cancerinformation/cancertreatment/treatmenttypes/hormonaltherapies/individualhormonaltherapies/bicalutamide.aspx
By the way, it appears that bicalutamide does cross the blood-brain barrier in humans. This wiki article has lots of references which indicate the difference between animals and humans in this regard. https://en.wikipedia.org/wiki/Bicalutamide#Side_effects
http://www.jurology.com/article/S0022-5347(01)66709-0/abstract
So I'm kind of scared. I'm thinking of starting an extremely low dose once every two or three days and watch for the above side effects. Any thoughts gratefully received.
Quote from: Richenda on June 01, 2016, 08:04:30 PM
So I'm kind of scared. I'm thinking of starting an extremely low dose once every two or three days and watch for the above side effects. Any thoughts gratefully received.
Talk to an urologist, they use bicalutamide for prostate cancer and should know its side effects.
Before my orchiectomy I was on Androcur and it worked great. Is there a reason why you can't take it separate from Diane 35?
Hi Emma, no there's no reason at all. Androcur is the most widely available anti-androgen in Thailand too. I wasn't really think straight about that.
Having read some more research on it yesterday cypterone acetate (androcur) is of course steroidal compared with bicalutamide which is non-steroidal. Both seem to have widely reported side-effects but CA especially causes depression in some people. Both cross the blood brain barrier in humans.
Having forked out $100 for the private prescription I finally took the plunge on the bicalutamide. I'm starting extremely low and because of its very long half-life will probably stick to every other day. I'll let you know how I get on. If it's not great then androcur it is.
CA is extremely potent, so you may be able to get positive results from a very small dose. I was originally on Spiro, but that dehydrated me. My taking of CA had to be specially approved by the Ontario government, but here it's usually the go to if Spiro is contraindicated.
I hope Bicalutamide works for you!
Thanks Emma, here's hoping.
I had a terrible time with Spiro. My bp dropped through the floor. Actually nearly killed me: I woke up one morning with scarcely a heart beat. When I spoke to my gender referring GP in the UK she said 'we don't use it ever for gender care in the UK. It's a nasty drug.' Which makes it kind of odd that in the US it's the drug of choice over, say, CA.
I'll see how this Bic goes. CA is available everywhere here and it's very cheap.
You know, with all the attention to trans issues you'd think nowadays there might be specific, clinically tested and globally approved medication regimes for MtF and FtM use. The current situation of using drugs frequently outside their primary purpose as well as us often needing to inform our doctors is not great.
If you properly monitor your liver, I think CA is waaaay safer than Spiro. I have no idea why Spiro is so favoured.
Have you considered having an orchiectomy?
I sure have Emma ;) https://www.susans.org/forums/index.php/topic,194690.msg1734533.html#msg1734533
I have my 2nd UK GIC appointment in three weeks. Depending how that goes i.e. if I get a steer on whether they will push me ahead for GRS will decide my approach to surgery in Thailand. It's about costs. If there is going to be a long delay in the UK, which is very likely, then I may go for an orchiectomy here in Thailand as early as October or November.
I can't wait in many ways to chop them off. I'd much rather not be pumping so many counter-acting drugs into my system.
xx
Having an orchie was probably the best decision I could have made for my health. I stayed on Finesteride to prevent the small amount of T I have left in my body from doing any damage, but there's no need for a heavy duty AA.
So so tempted to go the same route, Emma. With an inevitable long delay for GRS under the UK NHS then because I can't right now afford a full GRS I may get an orchie. Although, so far, the bic is going fine I'm pretty fed up with pumping toxic meds into my body.
Well my trial with bicalutamide has been halted for safety reasons due to a potentially life-threatening side effect.
It's ironic that I warned about possible side-effects of this drug and there is concern that I may be developing one known as Interstitial lung disease. This is basically inflammation of the lung lining caused by bicalutamide. Left unchecked it is potentially fatal.
What happened?
Within two days of starting the regime I noticed tightness in the chest. This was quickly followed by hoarseness. These are classic warming signs of inflammation in the upper respiratory system that can lead to pneumonitis. It might not be bicalutamide but it has been decided that, until proven otherwise, my medication with this must be halted. It might be unrelated e.g. air conditioning or just onset of a cold but the risk is not considered worth it until we're sure. As I say, it's a very dangerous side effect that can be fatal.
Sigh. My blo*dy sagas with anti androgens ...!!! Cypterone Acetate it is then. But I want the orchiectomy even more now.
I've said that bicalutamide should not be considered, willy nilly, a 'safe' drug. Be careful folks and be monitored.
For more on Bicalutamide and interstitial lung disease see these links:
http://www.ehealthme.com/ds/bicalutamide/interstitial+lung+disease/
http://synapse.koreamed.org/DOIx.php?id=10.4046/trd.2010.68.4.226&vmode=PUBREADER
http://www.ncbi.nlm.nih.gov/pubmed/14633092
http://www.ncbi.nlm.nih.gov/pubmed/9498983
http://www.ncbi.nlm.nih.gov/pubmed/21537882
http://www.sundhedguide.com/pdf/1132143512.pdf
http://www.mayoclinic.org/diseases-conditions/interstitial-lung-disease/basics/definition/con-20024481
I am sorry about your experience. As a CA user, you have to start with the lowest dose possible and work your way up or down depending on your T levels. As Emma have mentioned, constant blood monitoring will be your friend and that goes with all meds you are taking. I will never go back to Spiro, that ->-bleeped-<- almost killed me.
Anyways, good luck and keeps us posted.
Quote from: Richenda on June 05, 2016, 05:46:53 PM
Well my trial with bicalutamide has been halted for safety reasons due to a potentially life-threatening side effect.
It's ironic that I warned about possible side-effects of this drug and there is concern that I may be developing one known as Interstitial lung disease. This is basically inflammation of the lung lining caused by bicalutamide. Left unchecked it is potentially fatal.
What happened?
Within two days of starting the regime I noticed tightness in the chest. This was quickly followed by hoarseness. These are classic warming signs of inflammation in the upper respiratory system that can lead to pneumonitis. It might not be bicalutamide but it has been decided that, until proven otherwise, my medication with this must be halted. It might be unrelated e.g. air conditioning or just onset of a cold but the risk is not considered worth it until we're sure. As I say, it's a very dangerous side effect that can be fatal.
I've said that bicalutamide should not be considered, willy nilly, a 'safe' drug. Be careful folks and be monitored.
For more on Bicalutamide and interstitial lung disease see these links:
http://www.ehealthme.com/ds/bicalutamide/interstitial+lung+disease/
http://synapse.koreamed.org/DOIx.php?id=10.4046/trd.2010.68.4.226&vmode=PUBREADER
http://www.ncbi.nlm.nih.gov/pubmed/14633092
http://www.ncbi.nlm.nih.gov/pubmed/9498983
http://www.ncbi.nlm.nih.gov/pubmed/21537882
http://www.sundhedguide.com/pdf/1132143512.pdf
http://www.mayoclinic.org/diseases-conditions/interstitial-lung-disease/basics/definition/con-20024481
I am skeptical about the possibility that the disease be triggered after bicalutamide intake for 2 days only.
In all the cases you report interstitial lung disease occurred several months after initiation of treatment. Moreover none of them relate to trans women, they all concern old men with advanced metastatic prostate cancer...
Well it was day 4, Lucie. And to be fair, exactly how many medical trials or case studies have there been of bicalutamide transgender treatment ;)
One of the side effects that is listed in the MacMillan link says that on commencement of the drug if you experience lung tightness and hoarseness you must immediately cease taking it. Is seems that if you are going to react to it you may react to it straightaway.
That having been said, no-one here is quite sure. It may not be related but it's a peculiar coincidence if it isn't. Better safe than sorry.
Quote from: Richenda on June 06, 2016, 05:43:02 AM
Well it was day 4, Lucie. And to be fair, exactly how many medical trials or case studies have there been of bicalutamide transgender treatment ;)
True ! :(
QuoteOne of the side effects that is listed in the MacMillan link says that on commencement of the drug if you experience lung tightness and hoarseness you must immediately cease taking it. Is seems that if you are going to react to it you may react to it straightaway.
They just tell that "Rarely, bicalutamide can cause breathlessness. If you feel breathless while taking bicalutamide, tell your doctor straight away". No special mention of commencement.
QuoteThat having been said, no-one here is quite sure. It may not be related but it's a peculiar coincidence if it isn't. Better safe than sorry.
That's right.
You're right Lucie about the MacMillan link. My mistake.
The one I was looking at was here: http://www.drugs.com/sfx/bicalutamide-side-effects.html
The concern they have is the onset combination of tightness in the lung area, dry cough and hoarseness: almost like an allergic reaction to it but in the sense that it can cause inflammation of the lungs.
I dunno to be honest. But I've been taken off it for now.
I'm seeing Dr Preecha on 27th for a consultation ref. orchiectomy and probably Dr Chet too if I can.
Quote from: Richenda on June 06, 2016, 06:29:59 AM
You're right Lucie about the MacMillan link. My mistake.
The one I was looking at was here: http://www.drugs.com/sfx/bicalutamide-side-effects.html
Sorry, I could not find anything about commencement or start or beginning of bicalutamide treatment in that document either.
QuoteI dunno to be honest. But I've been taken off it for now.
I'm seeing Dr Preecha on 27th for a consultation ref. orchiectomy and probably Dr Chet too if I can.
So no need anymore for an A-A soon ! ;)
Yeah I honestly cannot wait. I know that many of us have to take these blasted anti androgens but, for me, this is now a no brainer. I've had so many dodgy reactions to drugs that I want the testicles whipped out. Then I'll breathe a huge sigh of relief and start to plan the full GRS.
Oh, that's the patient leaflet that comes with the med so I admit I did a bit of lateral thinking assuming they were giving advice for now rather than 'you may notice in 12 months time the following side effects ...' Sorry that sounds a tad facetious ;) Peace and love to you and thank you for your responses. I find despite the banter on this forum, most advice is incredible for building up the bigger picture and knowledge. xx
I wish you the best for your orchi and subsequent GRS. Love and kisses.
Thanks so much Lucie x
For those following or coming to this thread in subsequent weeks I found a couple more quite interesting links. The second of the two is a kind of what's-what of bicalutamide:
https://www.medicines.org.uk/emc/medicine/22272
Clicking through the tabs tells you almost everything about it:
http://www.drugbank.ca/drugs/DB01128#pharmacology
Thanks for the links Richenda.
All the links you provided of side-effects with bicalutamide are at higher doses, sometimes quite high. One cannot assume those same side-effects will occur at lower doses and in a population with different characteristics. Apples and oranges.
I know several transwomen who've taken bicalutamide with no such side-effect but individuals do vary in their response (I agree with you), of course. I also took it for several months and had no complications from it. I took low doses.
Quote from: KayXo on June 15, 2016, 01:12:22 PMI also took it for several months and had no complications from it. I took low doses.
Took it for YEARS . . . and I'm still 'ticking'!!!
As a further warning to anyone going down the 'oh its fine because it's just a low dose' meme ... the half life of bicalutamide is 7 days. That means that most people taking lower doses are likely to build up high levels of serum bioavailabilty, negating the argument.
It's also important to mention that some of the links I provide suggest potentially serious (fatal) side effects at low doses. If you have a reaction, such as my interstitial lung infection, it doesn't matter how small the dose is.
This drug is untested in the MtF population. Sure, it may be fine for some people (great to see Kiera) but I urge people to exercise caution. It's a very powerful and potentially dangerous drug.
Quote from: Richenda on June 16, 2016, 12:50:18 AM
As a further warning to anyone going down the 'oh its fine because it's just a low dose' meme ... the half life of bicalutamide is 7 days. That means that most people taking lower doses are likely to build up high levels of serum bioavailabilty, negating the argument.
Levels will still be less than if higher doses are taken, more so if taken once every 2-3 days as doctors may sometimes prescribe it.
QuoteIt's also important to mention that some of the links I provide suggest potentially serious (fatal) side effects at low doses.
Of all the links provided, I have seen none showing side-effects at doses under the minimum dose prescribed for men with prostate cancer. That's what I mean by low doses. These are VERY low doses.
It is, however, important to be aware of potential side-effects and of alternatives that may be safer. Thank you for bringing this all up and further educating us. Overall though, I consider bicalutamide to be quite safe and serious side-effects to be quite rare, noted at higher doses.
Personally, based on everything I've read so far, I think that if one sticks to bio-identical estradiol and progesterone, this is the safest route. As always, consult your doctor. ;)
Quote from: KayXo on June 16, 2016, 09:35:44 AM
Personally, based on everything I've read so far, I think that if one sticks to bio-identical estradiol and progesterone, this is the safest route.
Kay, do you mean estradiol+progesterone+bicalutamide or estradiol+progesterone without any AA ?
QuoteAs always, consult your doctor. ;)
AFAIK in my country no endocrinologist know bicalutamide (casodex). Urologists only know it, but they don't want to prescribe it for HRT. :(
Quote from: Lucie on June 16, 2016, 11:31:11 AM
Kay, do you mean estradiol+progesterone+bicalutamide or estradiol+progesterone without any AA ?
I meant no anti-androgen at all.
Quote from: KayXo on June 16, 2016, 11:33:29 AM
I meant no anti-androgen at all.
I agree, all anti-androgens have more or less serious adverse effects.
That's the position I've arrived at which is quite frustrating. I know some people seem fine on anti-androgens and all power to them: genuinely I'm happy that they're okay. But I've had a tough time with the things.
I'm booked in next month for my orchiectomy so no more AAs after that.
As anti-androgens go spironolactone is on the " WHO list of essential meds " for a reason, it has been widely prescribed for its diuretic and blood pressure benefits for the last 50 yrs. Obviously it does not work for everyone because of the potential side effects but i would bet its overall success rate is very high.
It makes me wonder if some people like yourself, do not have a special sensitivity to it. My blood work has consistently come back with a very little rise in potassium levels. I experience the thirst and salt craving that is about all.
Best of luck with your orchie - i hope to have the same sometime in the next couple of years.
Thanks so much Robyn for your good wishes. I think you're right about sensitivity. Curiously though I've now been put on low dose Androcur and so far I feel fine. If so, that will be the first true anti androgen that has worked for me. Anyway, it's temporary as in 6 weeks I'm having the orchie. The thinking is to try and keep my T and E levels near to female range so that when the testicles disappear it's not such a big shock to the system.
If anyone on here has been professionally prescribed bicalutamide then I've a load, properly sourced, that I shall never use again because a) I hate the drug and b) I'm having an orchiectomy. PM me.
Please note the italicised words.
As you know, they're hellishly expensive so I'll hang on to them cold stored for a few more months then flush them away.