Spondyloarthritis / Spondylitis Forums - Spondylitis Association of America
Spondylitis Association of America Home Page Learn About Spondyloarthritis / Ankylosing Spondylitis About Us - Our Work More Ways To Connect With Others / Support Groups And More Become a Member of SAA We Are A Nonprofit - Donate Today Shop for Products
Page 2 of 2 < 1 2
Topic Options
#239721 - 08/29/12 10:46 PM Re: Testosterone replacement [Re: seekonk]
pooch Offline
Registered Visitor

Registered: 08/29/12
Posts: 2
I am the poster boy for Low T or should I say No T. I also have severe thyroid problems. I recently had a tumor removed from my para thyroid. All topped off with Severe AS.
As far as T replacement goes it becomes very frustrating because you get tired of taking the gel or deep muscle injections and as soon as you stop your levels plummet sometimes lower than before. There is one drug that actually stimulates your body into producing it's own testosterone. It is used for woman who are having trouble getting pregnant. The drug is called Pregnyl and you inject yourself
My experience is that Testosterone never helped my pain in any way. Good luck.

Pooch

Top
#252314 - 05/17/13 11:30 AM Re: Testosterone replacement [Re: seekonk]
WhiteCell Offline
Registered Visitor

Registered: 05/31/10
Posts: 1272
Loc: Whidbey Island WA
I am going to start Axiron which is the under arm product. my levels are very low so I am going to give it a try. That heart cath story begs for an attorney. simply not acceptable practice. Jesus!
_________________________
Pain since 18 years old began as Reiter's Syndrome. Diagnosed with Ank Spon 2001, Remicade since 2002 - 5mg/kg every 7 weeks. 8 hour Tylenol and hot tubs for pain.

Severe Right Eye Glaucoma- Trabeculectomy/lens replacement 2006. DSAEK Cornea Transplant 2009. Ahmed Shunt 6/2016. DSAEK November 2016.

Supra Ventricular Tachycardia. 2004. Cured by RF ablation 2006. Cardizem 240 CD.

ICU RN

~Grasp The Challenge and Succeed~

Top
#252853 - 06/01/13 08:29 AM Re: Testosterone replacement [Re: seekonk]
WhiteCell Offline
Registered Visitor

Registered: 05/31/10
Posts: 1272
Loc: Whidbey Island WA
After 9 days on Axiron I have not seen any really noticeable results. I have had some fatigue which I ascribe to finally getting a real vacation for 3 weeks from the battle of the ICU. Any guys here have insight into the timeline for replacement. Symptoms were low libido, lack of energy and a couple other special gifts of low T.
_________________________
Pain since 18 years old began as Reiter's Syndrome. Diagnosed with Ank Spon 2001, Remicade since 2002 - 5mg/kg every 7 weeks. 8 hour Tylenol and hot tubs for pain.

Severe Right Eye Glaucoma- Trabeculectomy/lens replacement 2006. DSAEK Cornea Transplant 2009. Ahmed Shunt 6/2016. DSAEK November 2016.

Supra Ventricular Tachycardia. 2004. Cured by RF ablation 2006. Cardizem 240 CD.

ICU RN

~Grasp The Challenge and Succeed~

Top
#252864 - 06/01/13 04:37 PM Re: Testosterone replacement [Re: seekonk]
seekonk Offline
Registered Visitor

Registered: 12/06/10
Posts: 1254
Your dose may be too low or you might not be absorbing properly, so you should have blood tests to verify that your levels are improved.

However, the effects can take a while to kick in. Here is a study regarding time to onset of effects of testosterone therapy.

http://www.ncbi.nlm.nih.gov/pubmed/21753068

Quote:
Effects on sexual interest appear after 3 weeks plateauing at 6 weeks, with no further increments expected beyond. Changes in erections/ejaculations may require up to 6 months. Effects on quality of life manifest within 3-4 weeks, but maximum benefits take longer. Effects on depressive mood become detectable after 3-6 weeks with a maximum after 18-30 weeks. Effects on erythropoiesis are evident at 3 months, peaking at 9-12 months. Prostate-specific antigen and volume rise, marginally, plateauing at 12 months; further increase should be related to aging rather than therapy. Effects on lipids appear after 4 weeks, maximal after 6-12 months. Insulin sensitivity may improve within few days, but effects on glycemic control become evident only after 3-12 months. Changes in fat mass, lean body mass, and muscle strength occur within 12-16 weeks, stabilize at 6-12 months, but can marginally continue over years. Effects on inflammation occur within 3-12 weeks. Effects on bone are detectable already after 6 months while continuing at least for 3 years.




Edited by seekonk (06/01/13 04:37 PM)
_________________________
Spondylitis since '08, finally diagnosed Feb '11.
Enbrel 50mg/week.

Top
#253233 - 06/02/13 08:59 AM Re: Testosterone replacement [Re: seekonk]
WhiteCell Offline
Registered Visitor

Registered: 05/31/10
Posts: 1272
Loc: Whidbey Island WA
Thanks man. Sounds like I am early in my expectations.... appreciate your post.
_________________________
Pain since 18 years old began as Reiter's Syndrome. Diagnosed with Ank Spon 2001, Remicade since 2002 - 5mg/kg every 7 weeks. 8 hour Tylenol and hot tubs for pain.

Severe Right Eye Glaucoma- Trabeculectomy/lens replacement 2006. DSAEK Cornea Transplant 2009. Ahmed Shunt 6/2016. DSAEK November 2016.

Supra Ventricular Tachycardia. 2004. Cured by RF ablation 2006. Cardizem 240 CD.

ICU RN

~Grasp The Challenge and Succeed~

Top
#255678 - 07/29/13 10:28 PM Re: Testosterone replacement [Re: Polito09]
Poppa_John Offline
Registered Visitor

Registered: 07/23/13
Posts: 132
Loc: Arkansas, USA
A urologist can also test your testosterone levels and either prescribe gel or give you testosterone injections in their office normally on a monthly basis.
_________________________
Poppa John:
Symptomatic since 1988, diagnosed with Spondylitis, Fibromyalgia, probable IBD March 2013. HLA B27 neg. Sacroillitis, Osteitis, Fibromyalgia
Fused T 2-12, Fused C 5-7, HNP L4-5 with laminectomy/discectomy 2014.

Top
#255714 - 07/31/13 10:57 PM Re: Testosterone replacement [Re: seekonk]
64plus Offline
First time visitor

Registered: 06/13/12
Posts: 1
I am currently on testosterone injections and would say this is preferable to a topical replacement. Been there done that. I would put the gel on in the AM and by the evening would have swam and had a shower Amanda it was gone. Injections seem more efficient. Mood much improved as is energy level and dare I say, improved libido.
Diagnosed AS in 1976, so yes, am getting old. This desease is not getting any better, worse as time goes on. Have tried several biologics with what I would call little success. Really about to give up hope of having any quality retirement years. Would like to travel just a little but never seem to feel like doing much of anything. Bad attitude about old age as it seems hopeless. Currently trying the LSD again, but have been here before. Oh well, sorry about the whining but most simply have no idea what an AS victim goes through so it is good to know I can
here, I know you guys get. As for low t replacement I say it is good and go for it.

Top
#260492 - 11/07/13 09:45 PM Re: Testosterone replacement [Re: seekonk]
Poppa_John Offline
Registered Visitor

Registered: 07/23/13
Posts: 132
Loc: Arkansas, USA
I just started testosterone replacement therapy last week. My PCP did labs and said for my age my T level should be in the 500 range and mine was 208. Started Androgel middle of last week. Very expensive med. My family doc had to fill out paper work to get my insurance to approve it due cost almost $400 a month. My copay was $40 but the drug company has a copay assistance program which reduces the copay to $10 a month for up to a year.

Maybe I am just being optimistic but I think I can already tell a difference.
_________________________
Poppa John:
Symptomatic since 1988, diagnosed with Spondylitis, Fibromyalgia, probable IBD March 2013. HLA B27 neg. Sacroillitis, Osteitis, Fibromyalgia
Fused T 2-12, Fused C 5-7, HNP L4-5 with laminectomy/discectomy 2014.

Top
#263640 - 01/21/14 05:10 PM Re: Testosterone replacement [Re: seekonk]
strengthcoach27 Offline
Registered Visitor

Registered: 01/11/14
Posts: 23
Loc: Philadelphia
One of my very first symptoms was Crushing Fatigue and weakness with very stiff muscles, and an inability to get an erection. I am a Strength coach so I knew something was off. my PCP at the time did only a few tests on of them was Testosterone. mine was very under 100. he prescribed me Axiron and sent me to a urologist. I saw the urologist almost 2 months later and he took me off of it, and sent me to an endocrinologist, the endocrinologist sent me to a neurologist the neurologist sent me to a sleep physician and so on. this process took a year and a half

Long story short I was recently diagnosed with seronegative spondylitis I started Humira a week ago. the first thing i noticed was that the next morning I woke up with an erection. not like well thats weird. more like why wont this thing go away!!!!! turns out that when TNF alpha is suppressed leydig cells that produce testosterone get freed up to do their thing. ill get a testosterone test with my next set of bloods and let every one know what it says.

Top
#273751 - 03/26/16 03:01 PM Re: Testosterone replacement [Re: strengthcoach27]
chemman Offline
Registered Visitor

Registered: 03/20/11
Posts: 192
Originally Posted By: strengthcoach27
One of my very first symptoms was Crushing Fatigue and weakness with very stiff muscles, and an inability to get an erection. I am a Strength coach so I knew something was off. my PCP at the time did only a few tests on of them was Testosterone. mine was very under 100. he prescribed me Axiron and sent me to a urologist. I saw the urologist almost 2 months later and he took me off of it, and sent me to an endocrinologist, the endocrinologist sent me to a neurologist the neurologist sent me to a sleep physician and so on. this process took a year and a half

Long story short I was recently diagnosed with seronegative spondylitis I started Humira a week ago. the first thing i noticed was that the next morning I woke up with an erection. not like well thats weird. more like why wont this thing go away!!!!! turns out that when TNF alpha is suppressed leydig cells that produce testosterone get freed up to do their thing. ill get a testosterone test with my next set of bloods and let every one know what it says.


Thank you for reporting this. Did you ever get the testosterone test after starting Humira?

Before I was diagnosed with AS, low T was found and I started TRT. My AS has improved this past year, so I figured I would like to see if my body could make enough T on its own. The withdrawals have been difficult. Now my AS is creeping back in frown

Top
Page 2 of 2 < 1 2