using suppositories (MUSE ) for ED

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M. Kat
Veteran Member


Date Joined Jul 2006
Total Posts : 715
   Posted 3/12/2007 6:15 AM (GMT -6)   
hi everyone,

Jeff and I were wondering how many of you have tried the suppositories and how they worked for you. yes, we are getting impatient and wanted to try something else besides the pump. Jeff is not very keen on the injections - he's not that impatient yet! :-) I know swimom has talked about them, but was wondering about the rest of you. Swim - you can tell me here, too. tongue thanks all, kat
Husband Jeff 56 years old diagnosed July 27, 2006
PSA 6.5, 2 positive areas in biopsy, Gleason 3+3=6
Radical Retropubic Prostatectomy August 30, 2006
pathology report - all clear - cancer gone
1st post-surgery PSA test 0.1, 2nd post-surgery PSA test 0.1
no more pads Oct 12, 2006
first "real" erection with use of pump 12/16/06


Tamu
Veteran Member


Date Joined Oct 2006
Total Posts : 626
   Posted 3/12/2007 9:13 AM (GMT -6)   
kat,

As you know I tried the Caverjet injection and did not have a good experience. I now have Bimix but I have not worked up the courage yet to give it a try. I asked my urologist about Muse and he said that it works in less then 30% of the applications and when it does the erection is not near as good as injections. I am not sure what would be the case if you use Muse and the vacuum pump both. I will be like you anxiously waiting for the posts to your thread.

Tamu
Diagnosed 7/6/06
1 of 10 core samples, 40%
Stage T1c, Gleason 3+3
Da Vinci on 11/01/06
Catheter out on 11/13/06
56 Years Old
Post Op Path
Gleason 3+3
Approx. 5% of prostate involved
Prostate Confined, margins clear
Undetectable PSA on 12/18/06
No more pads as of 1/13/07


djhouston
Regular Member


Date Joined Jan 2007
Total Posts : 68
   Posted 3/13/2007 3:49 PM (GMT -6)   
Hi Ms. Kat!
Ready for another long dj post?

I have experience with the MUSE. My doc had been having me use Viagra (neither Cialis nor Levitra did anything, positive or negative, for me, whereas Viagra just sort of made things plumper, but not firm) and the pump before my first post-op visit. At that point, three months after surgery, he added MUSE. It comes in a variety of strengths, the top two being 500 micrograms and 1000 micrograms. The suppository is maybe a little less than the size of a sesame seed and it is applied with what someone in the forum called a Barbi baster.

Since we are all friends here, I can tell you how it works. You urinate first to moisten the inside of the urethra, then stretch the penis as far as you can and hold it, and slowly insert the baster (not that uncomfortable because it's pretty thin) to its limit. You then push this button on the outer end of the baster, and it extrudes the suppository into the urethra. You then massage the penis to get the suppository to melt and be absorbed. Then, if it is going to work, waiting time is about the same as for a Viagra.

I have used it maybe a dozen times, the 500 dosage three fourths of the time, and when this didn't do anything, the 1000. I told my doc it didn't do anything noticeable above and beyond the 100 mg Viagra's effects. The first time it made the urethra a little sore, but not bad and not lasting (as my doc said it just let you know it was there). From his giving me this, it seems he is a bit more conservative in advancing from pill and vacuum therapy to this, instead of right to the shot. His nurse said it may not work consistently, that I had to try it several times. She also said don't combine MUSE with Viagra, because of her concern for priapism. I told her, no chance of that, and asked if I could use a lower dose (50mg) of Viagra and the lower dose of MUSE. She said to be careful. As I expected, nothing doin'. Then I tried 100 mg of Viagra and 500 mikes of MUSE and still nothing doin'.

Now, I don't know if I have given Viagra and/or MUSE a fair trial. I wasn't really expecting much, because of the one-sided nerve injury and reconstruction (splicing). A guy seems to need 2 working nerves to get maximum benefit from the pills or the MUSE. I mostly have been using these to test how well the nerve was healing. But, I was recently disappointed to learn that, in order for the nerves to heal optimally, AND for pills such as Viagra to work, you have to have a normal level of TESTOSTERONE, which I don't (see http://www.bcm.edu/news/item.cfm?newsid=817).

I am going to have my second post-op PSA drawn this week (crunch - the sound of nails being chewed), and then, God willing that it is still undetectable, I have an appointment to see Dr. Lipshultz at Baylor at the end of the month to see if I can start testosterone replacement again. Then, I can put this theory to the test and see if a) it helps the nerve heal faster, then b) if it causes the Viagra and the MUSE to work as advertised, and then c) see if this wakes up Mr. Happy.

If not, then I think my doc is going to ask me to consider the shots, to avoid scar tissue forming, in addition to throwing cold water on Mr. H.

So, there you have a definite MAYBE about MUSE. I think MUSE is like chicken soup. It couldn't hurt (relatively speaking!), except if your insurance doesn't cover it. If you have any questions, please ask.

All the best,
dj
dj's stats:
PSA (10/04): 2.9; PSA (2/06):4.4, on Androgel (serum T about 450) at age 56; negative DRE, no symptoms.
PSA (5/06):5.7 with a free PSA% of 8, OFF Androgel (serum T 163). 
Biopsy (5/06): 4/12 samples positive; postitive samples only on right side; max Gleason 4+3=7 (in 2 of the 4 -from area nearest bladder. One was 40% of sample, the others less than a mm. thick.
DaVinci robotic-assisted laparoscopic radical prostatectomy + bladder lift + Right nerve plastic surgery (8/23/06).
Catheter out 4 weeks postop, due to internal pinhole leak at bladder-urethra junction.
Pads-Not needed after about 2 weeks post-cath, but gotta go a lot more often.
Final pathology report:T2c-both sides,but in capsule; neg. margins, neg. lymph nodes, neg. seminal vesicles; final max Gleason still 4+3=7.
1st Follow-up PSA (11/7/06): <0.008 !!!; serum T: 195 - still OFF Androgel (at present). Low T may delay return of erectile function (in presence of one damaged nerve).


Swimom
Veteran Member


Date Joined Apr 2006
Total Posts : 1725
   Posted 3/13/2007 4:24 PM (GMT -6)   
Kat,

So sorry I didn't read your post sooner. Only got a moment for now so I will make it breif.

Reports on MUSE is that it has a 30% success rate among users. I do have a freidn who has used it recently. He's since gone the caverject route because MUSE wasn't very successful. His quote.." gave new meaning to a swollen head." Check out Urology Times or the Internation Jouranal of Impotence Research for more info.
Off to educate da masses :>)

Swim

2busymom
Regular Member


Date Joined Nov 2006
Total Posts : 118
   Posted 3/13/2007 5:41 PM (GMT -6)   
We tried Muse last week. Our dr. is very conxervative and started us on 125 mcg, which we kept adding to. It initially looked like it might start to work, but didn't give anything close to a workable erection. He has now prescribed the 500 mcg. dosage. Our insurance only covers so much per month, so we may wait to try it.


bec
husband Jeff 45 years old, diagnosed 8/25/06
PSA 2.1, 2 of 12 samples at 3% & 4%, involving 1 side of prostate
Gleason 3+3=6 in both samples
laparoscopic radical prost. 10/17/06
cancer in both sides of prostate, positive in one area of margin
first PSA results 1/07 <0.01%


M. Kat
Veteran Member


Date Joined Jul 2006
Total Posts : 715
   Posted 3/14/2007 5:58 AM (GMT -6)   
thanks everyone, for the feedback. dj - you can be as descriptive as you want. tongue Bec, I'll be curious to hear how the stronger dosage works. so this is another item that insurance hassles us about? gggrrr!! skull
Husband Jeff 56 years old diagnosed July 27, 2006
PSA 6.5, 2 positive areas in biopsy, Gleason 3+3=6
Radical Retropubic Prostatectomy August 30, 2006
pathology report - all clear - cancer gone
1st post-surgery PSA test 0.1, 2nd post-surgery PSA test 0.1
no more pads Oct 12, 2006
first "real" erection with use of pump 12/16/06


thankgod
New Member


Date Joined Sep 2010
Total Posts : 1
   Posted 9/29/2010 11:48 PM (GMT -6)   
My boyfriend and I just used MUSE for the first time.  He's diabetic and has had some problems.......but I'm glad to say "no more" problems in that department.  Not sure on the dosage that he used, but for those who've not tried it is more than worth it.  We both definitely could vouch for the results.

thankgod
New Member


Date Joined Sep 2010
Total Posts : 1
   Posted 9/29/2010 11:58 PM (GMT -6)   
Forgot to mention that he's used a pump in the past and didn't show near the results that a combination of the first use of MUSE and pump did. Also he is 60 and I am 37 so to have it work so well to where a woman in her prime is left more than satisfied means its most definitely worth it.

Paul1959
Veteran Member


Date Joined Nov 2007
Total Posts : 597
   Posted 9/30/2010 8:15 AM (GMT -6)   
Be careful - MANY men find it excruciatingly painful. Lots of men tolerate it well, but if not, the pain is pretty bad. The alprostadil can cause the pain. If MUSE is painful, then Caverject probably will be too. Take a good look at injections. Many men love them. 5%-10% can develop peyronies and/or scarring.
Paul
www.franktalk.org ED website for PCa guys

46 at Diagnosis.
Father died of Pca 4/07 at 86.
10/07 PSA 5.06 (Biopsy 11/07 1 of 12 with 8% involvment) (1mm)
Da Vinci surgery Jan 5, '08 at Mt. Sinai Hosp. NYC www.roboticoncology.com
Saved both nerve bundles.
Path Report: Stage T2cNxMx
-Gleason (3+3)6
Pad free on March 14 - (10 weeks.) Never a problem since.
ED - at one year, ED is fine with viagra.
Two year PSA - undetectable!

Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 3624
   Posted 9/30/2010 3:46 PM (GMT -6)   

M Kat,  I have tried MUSE and hated it so much.  For me it was painful burned like fire but I was desperate and had to try it a second time.  Man what pain.  Paul mentioned that if you had pain with MUSE you would probably have pain with Caverject.  That was not the case with me.  Caverject worked GREAT! YAHOO>>.We have something for success.  I still use caverject and I also use Bi Mix both are very acceptable.  I can tell you the fear of doing the injection hits all of us but after the first run in the Dr office never a problem for me.  Fell free to e-mail me if you have questions.

Cajun Jeff yeah


Mavica
Regular Member


Date Joined Jun 2008
Total Posts : 375
   Posted 9/30/2010 5:00 PM (GMT -6)   
I've used MUSE with Cialis and it's been effective for me without any side effects, pain, etc.

AJ 47 (Maryland)
Regular Member


Date Joined Aug 2010
Total Posts : 64
   Posted 10/22/2010 7:55 AM (GMT -6)   
I've tried Muse three times now. 2 x 250 and 1 x 500. Each time it made junior look ready for action but it just wasn't strong enough to withstanding penetration. The post Muse pain from the meds was pretty bad too. If I stood up, junior would grow and grow until it felt painfully stretched to the point where I had to lay on my back to get the pain and the size to subside. I have the bimix in the fridge. I open the door, look at the box, and shut the door. Oh boy, I'm thinking maybe tonight I'll get up the nerve. At least he looks good on the Muse. Perhaps that's promising?
Preoperative: PSA 1.5 to 3.2 in 11 months after 10 years of level psa. First 12 core biopsy on 2/10 negative in 11, atypical in 1. Second 13 core biopsy on 5/10 at Hopkins positive in 2 with Gleason 3+3 (focal). Robotic "Super VIP" Henry Ford on 8/10. Postoperative Gleason 3+4 (70%/30%). Focal ECE at right posteriolateral mid. Negative margins, lymphs, seminal vesicles. First PSA on 9/14

T40
Regular Member


Date Joined Oct 2009
Total Posts : 103
   Posted 10/22/2010 1:49 PM (GMT -6)   
I used Muse as therapy. It was never sufficient at any dose to use it for anything else. That said, I do believe it is beneficial as a source of rehabilitation. Just not for the bedroom.

T40.... well, almost T42! hehe
Age 40
Pre-op PSA was 5.8 from wellness test on May 19, 09
Follow up test from uro was 4.6 with a 9.3% free psa
Gleason 3+3 in one core, 3+4 in second core of 12 samples taken
Surgery performed 9-19-09.
One side nerves spared. Nerve graft on other side.
One year mark Viagra works 100%. Pump works 100% new PSA on 9-10-10. Last PSA .005

Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 3624
   Posted 10/22/2010 4:47 PM (GMT -6)   
If your insurance covers it you are lucky. My Insurance considers it recreational thus no coverage.

Very expensive for rehab.

Cajun Jeff
9/08 PSA 5.4 referred to Urologist
9/08 Biopsy: GS 3+4=7 1 positive core in 12 1% cancer core
10/08 Nerve-Sparing open radicalSurgery Path Report Downgrade 3+3=6 GS Stage pT2c margins clea
r3 month: PSA <0.1
19th month: PSA <0.1
Only issue at this time is ED

JStars
Regular Member


Date Joined Oct 2005
Total Posts : 453
   Posted 10/23/2010 8:39 PM (GMT -6)   
AJ,
Your experience was just about my experience in the early days of using MUSE -- would get that dull ache standing up etc although really good hardness (was at 500 then lately using 1000 mcg ).
I'd have to say tho after keepin on with over the last year the ache has mostly gone away even at 1000 mcg.

Also like T40 says, it is actually better for rehabbing than actual intercoursel use. For rehab it keeps things nice and warm and somewhat hard for hours so you know you are getting good blood flow all that time. Also if the MUSE is not strong enough you can just go back to the pump, although for me it does get an uncomfortable ache (which subsides after a few minutes) when you pump up an already MUSED member -- i guess the nerves are sensitized a bit by the Alprostadil.

Yes it is good to have insurance that covers it because it sure ain't cheap if you had to pay all yourself. I think it would be about $200 a month for 4 or 6 injects. With Medco they will ship 18 (in a cold pack) every 90 days for 88 dollars -- not a real lot, but no CVS hassles.

Post Edited (JStars) : 10/23/2010 7:42:48 PM (GMT-6)


Muse user
New Member


Date Joined Dec 2011
Total Posts : 1
   Posted 12/5/2011 2:57 PM (GMT -6)   
Have used Muse 500 twice now. Got decent erections, but some of that ache.
Was tolerable.
Anyone go from 500 to 1,000 ???
Difference ?? Harder? Longer time (mine last about 45 minutes )
More ache ??
Thanks

SmileyP
New Member


Date Joined Nov 2013
Total Posts : 1
   Posted 11/9/2013 1:36 PM (GMT -6)   
I'm 8 months post surgery. Tried 1000 level Muse for the 1st and 2nd time last night and subsequently this morning.. Very easy to use, yes slight burning sensation in the very tip of the uretha. Girlfriend and I were very excited, however, other than a slightly enlarged head,, not the least bit rigid... Very disappointing .
I'm in very good shape
Don't know what my next move will be.

PeterDisAbelard.
Forum Moderator


Date Joined Jul 2012
Total Posts : 3781
   Posted 11/9/2013 10:42 PM (GMT -6)   
Smiley,

I started a new thread for you so folks can say hello.
60
Slow PSA rise 2007-2012: 1.4=>8
4 bxs 2010-2012:
1)neg (some inflammation),
2)neg,
3)positive 1 of 14 GS6(3+3) 3-4%, 2nd opinion GS7(3+4)
4)neg.
Mild Pre-op ED
DaVinci RRP 6/14/12. left nerve spared
Path: pT3a pN0 R1 GS9(4+5) Pos margins on rt
Start 24 mo ADT3 7/26/12
Adjuvant IMRT 66.6 Gy 10/17/12 - 12/13/12
Leaky but better, Trimix, VED
Forum Moderator - Not a Medical Professional
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