I have been taking this drug for ten months now and found it to be very helpful. It seems several others have had good success with it also. However, there are the exceptions.
A friend wrote: "I am considering stopping it, I have had my worst 9 months ever. I have pain in my hands which I have never had before and I generally seem to have much less energy. I know everyone can react differently but are you aware of anyone else who has stopped this medication for side effects. Any comments welcome."
I told him I would post his question on the forum and my Living with Kennedy's Disease blog. So I am asking all of you what your experiences have been with dutasteride? (The good, the bad, and the ugly)
I look forward to your input.
12-26-2011, 12:25 AM
I was in the NIH trial and took it for two years. The results were a slight increase in strength in SOME areas and status quo elsewhere. It was statistically insignificant change for me. There were secondary physical effects that were somewhat uncomfortable -- slight increase in gynecomastia, for example. My prostate (BPH) did decrease a bit. I have since weighed the pluses and minuses and decided to terminate it. My conclusion is that it may be effective, although only slightly so (for me). Your mileage may differ.
01-05-2012, 03:06 PM
Bruce, I took dutasteride for about 18 months on the recommendation of the neurologist. I didn't notice any improvement in strength, but as you know, the loss of strength in SBMA is so slow that it is hard to tell if the drug is having any effect or not.
I did notice certain side effects. I was more moody and grouchy than usual while taking dutasteride. I also experienced decreased libido.
According to the website www.drugs.com, side effects may include the following:
Genitourinary side effects including impotence (up to 4.7%), decreased libido (up to 3.0%), ejaculation disorders (up to 1.4%), and gynecomastia (up to 1.1%) have been reported.
After a year and a half of side effects with no noticeable benefit, I gave up on dutasteride.This message has been edited. Last edited by: Dan B,
So I´m not sure if this is what we want. I think most treatment, that lowers androges will make people with PFS and KD better for a while..but in long term, I dont know if it is a good Idea. May be, people get worse after the treatment.
11-16-2012, 03:37 PM
Finasteride is the generic form of Avodart (dutasteride). Dr. Fischbeck advised me not to take Finasteride because it did not work.
I am 21 months into my use of dutasteride and continue to find it helpful. In the study's report, dutasteride only appeared to work in about 50% of the patients taking the actual drug. The study also showed that in some people it slowed the progression while in others there was a slight improvement in strength. I found it interesting that some who went off of dutasteride saw a degradation in strength, If they went back on dutasteride, these same patients found an immediate improvement. The key message is that the study was too short in duration to effectively see if the drug was beneficial.
I do not recommend the drug. I only am telling my experience in using dutasteride. You doctor can be a good resource and should always be consulted before taking any drug. My doctor read the study and Dr. Fischbeck's comments and felt it was worth a try. He has monitored my results and renewed the prescription. Again, if interested, read the study, share it with your doctor, discuss it with your spouse, and if you decide to take it, monitor the results along with your doctor. For example, I keep a daily journal.
11-16-2012, 09:42 PM
Hey Bruce, sorry but Finasteride is not the generic form of dutasteride. Finsateride inh. only the 5AR type 2 & 3, very very weak type 1. While dutasteride inh. alle 3 knowen tyes of the 5AR. I haven´t read the study, but it´s not suprising for me that some people get better and some get worse after stopping. See, Androgen deprivation leads to a overexpression of the androgen rezeptor (AR) While you are on the drug, you have less DHT, less DHT many AR, anyway not a high signaling of the AR on the DNA. This takes with other words the "pressure" away. but, while the deprivation of androgens the cells will try to get a stable level of products, proteins /enzymes... so they will produce much more AR over the time, to adjust the levels, when you go off the drug and DHT comes back, the signaling on the DNA will get higher again...this is a part of the problem. The overexpressed AR causes the problems in KD. There might be many other options to get better results, more studys will show this. possiple treatments are HDACI´s like LBH589 LBH589hmg.oxfordjournals.org/content/early/2009/07/LBH58907/hmg.ddp313.abstract
cause it seems to be able to "restore" the response on androgens.
Down, I used the word generic and shouldn't have. However, Finasteride was not recommended to be taken because the trial was focused on dutasteride. Finasteride was less expensive and that is why my health provider asked if it could be substituted.
11-17-2012, 09:12 PM
Hey Bruce, sorry I did not wanted to sound like a smartass. Are you still taking it? anny sides?
11-18-2012, 10:47 AM
I didn't take your reply wrong. Yes, it has been 22 months and it has been good for me. The sides are nothing more than I already experienced with KD. Reduced libido ... yes.
If I didn't feel it was working for me, I would stop immediately. But, every indicator shows I am better off taking it ... especially my strength.
12-07-2012, 02:19 PM
Just a quick set of comments - there is no evidence that KD in humans is due to overexpression of the androgen receptor. There is a genetically modified mouse that overexpresses NORMAL AR and it has symptoms like KD. That does not mean, however, that this is the cause KD in humans. In humans, KD is due to the elongation of a CAG repeat in the AR gene.
Also, I do not know if you had a chance to actually look at the data with regard to the increase of AR expression while taking Finasteride. The data is not really as clearcut as the abstract might suggest. In addition, the effect was only seen up to three months after the addition of Finasteride - the effect was not seen after 3 months of taking the drug.
04-11-2013, 02:23 PM
In Dec 2012 Kenneth H. Fischbeck, published 'Developing treatment for spinal and bulbar muscular atrophy'. In it he repeated some of the findings of a 24 mth trial of Dutasteride which showed no "proof of clinically meaningful benefit". "Although this study did not show a significant effect of dutasteride on the progression of muscle weakness in SBMA, there were secondary indications of positive effects compared with placebo", however,"With dutasteride, the subjects felt physically better but mentally worse" than those on placebo.
04-11-2013, 02:38 PM
Dr. Fischbeck told me to not take the generic drug, but to take Avodart.
Dr. Fischbeck also noted that the word significant means 3-5% or better improvement. Dutasteride showed in some patients a slight slowing in the progression or a slight (<3%) improvement in atrength.
I have not noticed any problems with my emotions or becoming 'mentally worse'. With me it is was just the opposite because of the improvement in strength and stamina as well as not feeling exhausted after exercising.
I know of several associates with KD that have also seen some benefit. If you have an interest, I recommend you (1) Read my "Living with Kennedy's Disease" blog articles by searching for Dutasteride. (2) Discuss the possibility with your doctor. (3) Monitor your results by keeping a journal.This message has been edited. Last edited by: Bruce,
04-13-2013, 08:55 AM
I was asked for additional clarification on my use of Avodart (dutasteride) in a private message. If one person is asking, I thought others might have some of the same questions, so I am posting my response below. I hope this helps everyone understand that the reason I am taking Avodart is for personal reasons based upon discussions with my doctors and my personal results.
"You asked some good questions. All I have ever said that 'for me. Avodart appears to work'. I have kept a daily journal since starting my own personal trial and the results show an improvement initially in strength, a slowing in the progression, and a significant improvement in stamina (or lack of days where I am tired).
The key wording from the study is "significant improvement." According to Dr. Fischbeck, if the results are less than a 3-5% improvement, they cannot recommend the drug as a treatment. That being said, when I asked Dr. Fischbeck about the potential benefits/concerns, he advised me that "it wouldn't hurt" to give it a try if my doctor agreed with the plan. So, I discussed it my neurologist and family doctor and decided to give it a try.
Again, the results have been positive for me. I cannot say any more than that. Several others that I know of that also take Avodart have expressed positive results. Two people, stopped taking it, and noticed some immediate weakness. They started taking it again and the weakness went away. I also know of a few that felt there was no change or saw some improvement initially and then it went away.
My journal is not scientific or trial based. It just records how I feel and how my daily exercise program went (including any weakness or pain and other issues). Since it is not a monitored trial and it is only one person (me) involved, I cannot conclusively say whether Avodart will work or not work. That is why I recommend that anyone interested should read the blog posts and discuss the opportunity with their doctor. I discuss the continued use or discontinuation every year with my doctor at my annual physical. He feel that if it has shown to be beneficial and I do not show any negative signs from its use, that I should continue using it.
As you know, there is currently no treatment or cure for Kennedy's Disease. There are two clinical trials that will be started within the next year or so. Until a treatment is found, and as long as my results are positive for Avodart, I will continue to take it. My evidence is how I feel every day and how I respond to a vigorous exercise routine that has been successful for me.
If I can slow the progression and not have any negative results from the drug use, Avodart is worth taking (in my personal case). It is an individual decision that needs to be made in consultation with your doctors. Again, I can only report my experiences."
04-13-2013, 01:14 PM
I place more stock in the anecdotal reports than the clinical trail of Avodart. IMO it would be very difficult to conduct a good trail due to the nature of KD and its slow progression. I didn't read of the methods used in the study to determine "improvement" but unless an objective test (i.e. a machine) was used I don't think the typical tests done on me over the years would report any change. Having a clinician measure strength via push/pull/grip is way too subjective IMO, especially if a different person did the tests over time.
The patient's effort is graded on a scale of 0-5:
Grade 5: Muscle contracts normally against full resistance.
Grade 4: Muscle strength is reduced but muscle contraction can still move joint against resistance.
Grade 3: Muscle strength is further reduced such that the joint can be moved only against gravity with the examiner's resistance completely removed. As an example, the elbow can be moved from full extension to full flexion starting with the arm hanging down at the side.
Grade 2: Muscle can move only if the resistance of gravity is removed. As an example, the elbow can be fully flexed only if the arm is maintained in a horizontal plane.
Grade 1: Only a trace or flicker of movement is seen or felt in the muscle or fasciculations are observed in the muscle.
Grade 0: No movement is observed.
The chance of a positive change in grade during any Avodart study would be tiny IMO.
My anecdotal report is that Avodart made a significant difference to me. I was down to working half time due to fatigue and fear of not being able to get home safely after work (I had a challenging ramp to walk down at that time.) After I started to take Avodart my fatigue was greatly reduced and I return to work full time - that was six years ago and I am still working full time. My KD symptoms have continued to worsen so Avodart did not stop the progression, but I feel I would be much worse off if I wasn't taking Avodart.
================= email:rheitzman at gmail
04-13-2013, 02:08 PM
Bob, thanks for your comments. One of the important comments from the researchers who led the dutasteride trial was that it needed to have been longer in duration. Since the progression is relatively slow, a study of 3-4 years might have been more significant in tracking the potential benefits/concerns related to dutasteride.