Men on Danazol- Experiencing side effects from long term use

[srtroy]

My husband has been on 50mg of danazol for 4 years and experiencing side effects we think are from the medicine. He started at 400mg and weaned down to 50mg with success of keeping his attacks at bay. He also has been diagnosed and being treated for Lyme's Disease.  Although 50 mg is a very low dose, I have been told danazol is not meant to be used for long periods of time(over years).  Since he started the med in 2006 we have had problems with our marraige, decline interest in socialization, withdrawl from the kids and myself, loss of interest in work (which he used to enjoy), loss of sex drive and for 9 months has had impotence problems (never an issue before), tired all of the time, joint pain, has chronic uveitis(most likely from the Lyme), depressed like mood and shows little or no emotion(like you are looking right through him). At times he gets extremely short tempered and hostile. Never wants to talk about what is happening to us and our family- would rather ignore and pretend nothing is wrong.  He was always a very layed back person and we never got in fights- had a great marraige and laughed all of the time. He was my best friend and now I have never felt so alone in my life. I have lost my husband, best friend, and love of my life. Now we argue and fight over the smallest things just about everyday. He never smiles anymore and it is almost like I am just looking through him when I talk to him- like he doesn't care.  Had testosterone levels checked and they are very low, so now on adrogel for that.  I have pretty much tracked this all back to when he started the danazol. Things have gotten much worse in the past 2 years, to the point where I was ready to leave. I just couldn't take it anymore. There is not another woman or anything or that sort causing the problems.  He loves me and wants to keep our marraige together. I have flat out asked him if he wanted me to leave. I am wondering if anyone else has experienced any of these symptoms/problems while on danazol. Any advice is very much appreciated.

[blessed365]

srtroy,

I am so sorry to hear this story! I will be praying for you and your family! I have been on Danazol for about a year, but I am a 19 yr female and have been on this medicine since I was 18.  I have been having a few of the same problems, but not bad I dnt think. I have been told I seemreally laid back more so then before, i feel like im always tired,but I just brushed it off as my other autoimmune disorders. I have days that I seem to get really temper mental, but I have yet again brushed it off as the many different things going on in my life right now! ( college, family, health, and just life) I have made major adjustments lately so everything has just gotta ran together!! I also have joint point and they say for sure it comes from Danazol I asked my Doctor this question. I also am on prednisone which makes the joint pain worse, but with God's help I will make and so will you!!

I hope this will help! I am sry I can't help more, but I thought this may be a start! I kinda know where he is coming from, its hard with this disease, but I can also see the wear n tear it does to my mom n siblings! I have been on life support 3 times and I can tell it devastates them, but they are very strong and try not to show me what it does to them!!! Hang in there!

Have a great week!

[koiotic]

I'm sorry this is a little late - but hopefully this will be of some help - since this is a life long commitment ~

First - I am so sorry what you are going through - I am the one with HAE - and my husband sounds a lot like your husband - he is my soul mate, and best friend.....to go through what you are going through would be heartbreaking!!!

With that being said - I have a few questions -
How bad are his attacks - and why did they put him on Danazol?
Does the Danazol actually control the attacks?
Do you have insurance? - Have you looked into the Cinrzye?
Have you been told about Oxandrin?
How are you treating the Lyme disease? - I have heard Lyme is very difficult to treat unless you make DRASTIC changes to your lifestyle -

I have a blog - www.fighting-hae-fibro.blogspot.com - with lots of info on how I have somewhat gained my life back.

When I was first diagnosed with HAE - over 15 years ago, I decided at that time there was no way I would ever put Danazol in my body after everything I have read about it. When I read heartbreaking stories like yours - I know now why I was so adament about it. You prob would not believe how horrible I was treated when I said I would not take it - banned from the entire Oregon Medical Group - My doctor wrote to my insurance company and said I was non-compliant and they should not pay for treatment of any acute episodes - At 22, new baby, new husband - it was a FUN time......but I made it through.....

I think about 7 years ago, my HAE was no longer manageable - I had been on the first C1-Inhibitor study - and that ended with not approval - I began having increased attacks - and could no longer "handle" it. Tony the President of HAEA - told me about Oxandrin and helped me talk to my doctor so that he would prescribe it to me - it was at the very beginning - and it changed my life. The side effects I have had are very minimal - and the nice thing is, there is now a generic formula so the cost has come down considerably - it was around 700.00 back then - now about 200.00 for a one month supply.

I would have to say the main side effect has been weight gain - however - I gained alot of weight because of another drug called Cymbalta that I took - I did not want to take it but was convinced after months of my doctors telling me I should take it - I gained over 40+ pds in just a couple months - and my blood pressure went from 105/70 to like 155/95!!! When I stopped taking it I was REALLY screwed up - I found an all natural protocal for depression after that - Its called The Way up From Down - written by a doctor - and Change Your Brain, Change Your Life - another doctor who both agree that aminoacid supplements work just as good as drugs with NO FRICKEN SIDE EFFECTS!!!

Personally - I go as all natural as possible - but I do take some pharmaceuticals - but it is always a last resort...........and there has not been many that  have actually helped.......

Hang in there - search this forum, research everything!!! And don't give up....He needs you more than ever!!! I know!! I would probably have killed myself if my husband would have left me when I was in that really dark place - I have been there....it SUCKS!!! But, I couldn't talk to anyone aobut it while I was there - and most of it was medication related.....

Would love to hear back from you regarding the above questions -

Take Care.

[Robert]

Your question and suspicion is smack on target-from my experience! I was on 1200 mg of  Danocrine a  day for about 12 years. EVERYTHING you noted was like you had been reading my mail! I finally told them "I QUIT! . It never was successful in any meaningfull way halting episodes of the HAE.I still see many of the residuals from that...And...YES... literature recommends NO LONGER than 6 months on Dano due to propensity for liver failure// severe problems. That crap should be outlawed,IMHO!...
The anger, joint problems. mood u, weight gain, increcreases appetite. ,at times distorting peripheal hallucinations..  no use for it here!

[blessed365]

Robert,

So do they recommend you not to use Danazol for more than 6 months? I have been on the medication for about 14 months! should this be a concern?

My Dr. put me on this and they finally got my attacks somewhat under control with the help of PRN Berinert so they don't want to change anything but should this be brought to their attention?? Also I am on Zyflo which can cause liver damage so wow I guess I need to keep a lookout on my liver which my Dr's have been and it was only high one time!

Thanks for all the help!

[Robert]

When I was taking it,the docs were constantly monitoring via liver function tests,etc. Given the current fight I am in W/ V A, I went back through ALL Angioneurotic, angioedema, and HAE lit and drug info for them... It was clear due to the effects of the androgens over a sustained time ,the pt (us!) should NOT be on it for more than 6 months at a time. The side effects-for me-made it a no brainer to get off of it TOTALLY. Now approved for both Berinert and Cinryze throug BC/BS AND PSI... Working out the details of application now. Have protocol worked out w/ local hosp for the Berinert and doing the same for the Cinryze.

[blessed365]

I am hoping I can soon get off Danazol and hoping maybe they can give me  the Cinryze as preventative, bc I think that wld help me out a great deal!  I am pretty much using the Berinert once a month so if I cld get it b4 the attack hit like on a regular basis it may be the best for me. 

Right now I am still on 200 mgs of danazol daily! I have went from 400 mgs to 300mgs, back to 400mgs, then to 200mgs, bck to 300mgs, now back to 200mgs so I hope I do not have to increase the danazol any more.

Thanks for your help!