Testosterone Replacement Therapy

[OilyWiggles]

Hi all,

this thread is really aimed at male PMR patients who are receiving or who are considering Testosterone Replacement Therapy (that's not to say that women are forbidden from contributing!),

Speaking for myself, I had my testosterone level checked about five years ago - it was at the lower end of normal, but not low enough for the NHS to treat. I then developed PMR in late 2023. Prior to that, I had chronic idiopathic angioedema for about twenty years and I've had asthma since childhood. When I was three-years-old, I had a unilateral orchiectomy (which may have affected my testosterone levels). My hope is that TRT will help to counter some of the unpleasant effects of Prednisolone and may dampen some inflammation as well.

Please comment with your own thoughts/experiences.

[DorsetLady PMRGCAuk volunteer]

No advice,

but I do love your name... are you a fast engine freak [in the nicest possible way]!

[OilyWiggles in reply to DorsetLady]

I'm to old and sensible to drive fast! I also have a Tesla these days, so I don't even have anything with an engine as such. I had a motorcycle for a while, but quit while I still had the full compliment of limbs. The name just sounded funny at the time!

[DorsetLady PMRGCAuk volunteer in reply to OilyWiggles]

At 53 you’re not old - can’t comment on being sensible though 😏.. keeping my counsel on the driving - although my son has been known to call me the one eyed Schumacher…

[PMRpro Ambassador in reply to OilyWiggles]

Aye - just watch out here, 53 is still definitely NOT old ...

[OilyWiggles in reply to PMRpro]

My work colleagues are all half my age, so I feel pretty superannuated at times! But of course, 53 is not "old" (but maybe too old to behave irresponsibly).

[DorsetLady PMRGCAuk volunteer in reply to OilyWiggles]

, 53 is not "old" (but maybe too old to behave irresponsibly).

Can tell you haven't been on this forum for long.... 😂🤣

[PMRpro Ambassador in reply to OilyWiggles]

Dunno what world you're in!!! Plenty of 70+ irresponsibles ...

[Hidden]

Perhaps a current blood testosterone might clarify your situation. Prednisolone is thought to suppress hormonal function. As for dampening down inflammation, I hae ma doots.

[OilyWiggles in reply to Hidden]

I have been tested several times, including recently.

[Hidden in reply to OilyWiggles]

Sorry , but you only said five years ago in your intro. Ditto orchidectomy not orchidopexy, so folks have got confused as to the gist of your question.

[OilyWiggles in reply to Hidden]

You're right, I should have been clearer. I should have said first tested five years ago.

[MiniSpec]

So sorry to read that you had to have unilateral orchiectomy surgery at such a young age. There must have been a very good reason to do that so early in your life, and I only hope it hasn't had any bad effects on your growth and development as a person. Also, your chronic idiopathic angioedema sounds rather horrific as well, and I hope that hasn't caused you any long term after effects either.

I remember there was a famous male TV presenter (can't quite remember his name at present, although I can clearly see his face in my mind) who was happy to boast about having testosterone injections. He said it improved his life enormously, and that of his wife as well !! So make of that what you will.

I've sometimes wondered about the idea of TRT as well, as I'm now in my mid 70's and struggling with a lack of strength, stamina, and motivation, all of which I put down to the combined long term effects of PMR and Pred. So it's occurred to me on more than one occasion that perhaps TRT might help me regain some of my former 'joi de vivre', and I'll be interested to see what others think about the idea.

P.S. I'm not sure that TRT for women would be such a good idea, as I believe testosterone has negative effects for them, such as unwanted hair, etc.

[powerwalk in reply to MiniSpec]

Apparently testosterone for women is the "in thing" these days. As part of hrt treatment.

[MiniSpec in reply to powerwalk]

Well, what can I say? You learn something new every day!

[powerwalk in reply to MiniSpec]

😁😁

[OilyWiggles]

I'm sorry - I should have said orchioPEXY. So one testicle moved rather than removed (although my father had one removed by mistake - they lost it during the procedure apparently!). I don't *think* it had any negative effects other than unpleasant scars (until now anyway), as one is supposedly sufficient. The angioedema was more inconvenient than anything else, but as an inflammatory condition, it may have had some long-term effect. It vanished at almost the same time in my life that I developed chronic migraine!

Yes there are a few well-known men who are on TRT (it's certainly much more popular in the US than the UK).

I may get some stick from the ladies on the forum for saying this, but it seems as if it's easier to get testosterone on the NHS if you're female (although after the recent Cass report that may not be the case) than if you're a man with hypogonadism.

I would say that it's worth trying TRT if you can afford it (as it's almost impossible to get on the NHS) and are OK with self-injecting. If it does nothing or has negative effects, then you can just discontinue it.

[FLSurfing_Dad]

I guess I can chime in on this one since I’ve been on TRT injections (self administered ) 0.5ml every two weeks for the past 3 yrs here in the states. I’ve been off pred for 2 yrs now and I have to say I haven’t seen any abnormalities in my lab work with hormones but you may want to keep an eye on your PSA ( Prostate specific antigen) which may rise and for me my white count dropped slightly. I definitely feel better with mental clarity, maintaining muscle mass and more active. My physician monitors me with a blood test every 6mo in between my yearly physical. I would say it’s well worth looking into it and if you can tolerate injections it’s much better than the gel/creme in my opinion and my pharmacist.

Yes, many women here in the US that are experiencing low libido issue are having TRT and other pellets injected/implanted in their muscle tissue to improve their symptoms. Hope this helps is some way.

[OilyWiggles in reply to FLSurfing_Dad]

That is very encouraging to hear, thank you. Yes, I would definitely prefer to inject rather than use the topical stuff. The clinic I'm using is pretty good about regular testing etc, which is definitely important. My PSA is fine at the moment and I have no family history of prostate cancer (or hair loss!) in my family. I actually work on prostate cancer trials, which makes me more aware than most.

Are you still surfing? I've always wanted to try it. I'm thinking about booking a few weeks at a kind of live-in surf school in Portugal later this year - depending on my physical condition of course. 🏄‍♂️

[Pollyanna16 in reply to OilyWiggles]

I can recommend the surf school in Portugal, both sons have been & loved it. Plus a retired GP friend & his wife. Go for it. Also I asked my endo about testosterone & she said”well you dont want to get all hairy do you?” End of conversation

[FLSurfing_Dad]

Wow, glad you actually work in the prostate cancer arena. My father was diagnosed with prostate cancer that became Mets and took him in 1992. I keep an eye on any info on this subject since my clinical specialty is Orthopaedic and Sports Medicine physical therapy.

Yes, I still surf after starting 48yrs ago here in Florida and you will have a great time surfing in Portugal. It’s such a great sport being in harmony with Mother Nature and the ocean. 🏄‍♂️🤙🏽