Erectile dysfunction , leg weakness and GCA

[Iwillwin123]

Ok so to come straight to the point - anyone here who can shed light on erectile dysfunction , and leg weakness with GCA . I am taking Wysolone 40 mg daily and have seen These issues surface since 2 weeks. The other side effects are bad enough and now this is kind of too much ........

[SnazzyD]

Hello, there could be a few things going on here. The steroids could easily be the cause as can a problem with lack of blood flow in other arteries but other conditions can do this like diabetes. Leg weakness is also the the same especially on 40mg; many people get that and it improves with dose reduction. A chat to the doc would be an idea because more investigations may need to be done and other factors taken into consideration.

[Iwillwin123 in reply to SnazzyD]

Thankyou for your inputs and thoughts.I do hope that it is just steroid induced and will disapear once the taper happens successfully.I shall talk to the doc too as you have suggested, though I kind of think docs generally are more concerned with immediate firefighting wrt the disease and an ED for someone 61 years of age might be way down on their list of immediate concerns And yet it is one of the most important things for me despite my serious medical issues...... Well I am determined even more now,to now to step down the pred successfully. And as my ID says IWILLWIN !

[SnazzyD in reply to Iwillwin123]

Well, do ask because it may be indicative of things they need to attend to even if they don’t care about your private life. And remember successful reduction doesn’t mean fast because you’re fed up with it! Stealth and patience is what’s needed.

[Iwillwin123 in reply to SnazzyD]

Yes absolutely true about the stealth and patience. I will certainly follow through with your suggestion and will diligently mention it to the doc and go through with whatever tests are necessary to rule out medical issues if any. Again a big hearfelt thumbs- up for the wonderful sincere people such as you that I find here.

[Hidden]

As l was unfamiliar with Wysolone, l presume you are not in the U.K?

I could not find any mention of ED on an NHS link for side effects of Prednisolone but suggest you check out the Patient Information Leaflet supplied with your Meds & then check in with your Doctor or Pharmacist especially if you are also taking other Medications.

[Iwillwin123 in reply to Hidden]

Wysolone is a brand name for Prednisone. Thankyou for responding. I shall follow your suggestion to check info leaflet of my medication of which there are many. I just hope that this awful ED shall disappear once I step down from the pred dose - currently on 40 mg.

[Soraya_PMR]

Pred can lower serum testosterone resulting in lowered libido and ED

nps.org.au/australian-presc...

[Soraya_PMR in reply to Soraya_PMR]

I had a quick peek at your profile, you may find this interesting: Hydroxyurea used to manage priapism. Assume you’re taking HU still? Maybe adding pred has tipped the balance?

ncbi.nlm.nih.gov/pmc/articl...

[Iwillwin123 in reply to Soraya_PMR]

Thankyou Soraya for making sure to understand my medical condition which is highly complicated with Polycythemia Vera plus GCA plus a Subclavian Steal syndrome. You have understood correctly that I am on Hydroxyurea 500 mg -5 times a week, 40 mg predict daily AND taking Actemra inj SC 162 mg once a fortnight. Maybe you are right that pred could have tipped the balance and that why I hope the Actemra helps me to step down quickly from the Pred ( Wysolone) dose.

The Research paper you shared was very educative and thus I think I shall hope it all settles down. I still say the ED is a bit too much to take on top of all the issues I have been having 😑 . Cannot appreciate this platform enough though . Every person here is fantastic and am so grateful for the real-time advice I have received here. It has helped me to remain calm and deal with my problems well.

[Iwillwin123 in reply to Iwillwin123]

40 mg prednisone ..... correction

[Soraya_PMR in reply to Iwillwin123]

I suspect you have little choice but to stick with it for now on your medication regime.

I hope things improve for you soon.

[PMRpro Ambassador]

Whilst I realise it is a disturbing adverse effect for men, I think what I would regard as too much is loss of sight due to GCA not being treated. It could be due to the vasculitis itself or to the use of prednisolone or even both.

However - has Actemra been ruled out altogether?

[Iwillwin123 in reply to PMRpro]

Thankyou for making me see that I was being a bit too cranky perhaps. I completely agree that with GCA really, there are much worse situations that could crop up. One must count ones blessings after all If you recollect my medical condition is very complicated, since I haven Polycythemia Vera AND GCA AND subclavian Steal Syndrome.

My medication is Hydroxyurea 500 mg - 5 times a week , Prednisone 40 mg daily AND Actemra SC 162 mg once a fortnight. So am hoping the Actemra helps me to step down quickly from the pred.

It is immensely helpful to be on this platform and interact with people like you who are going through similar conditions or are knowledgeable about the same. I very much value this support.

[nickm001]

Besides having two other condition that have to do with irregular blood flow and blood density, you are also under lots of stress because of additional GCA concern. Stress and psychological impact of all these conditions combine can cause your ED as well. High dose of prednisolone can also cause enhanced sensitivity to any stress, irritability, etc, yet another downer. Best to focus at GCA and it's treatment. Soon you will tapper dose down and when you get below 15mg or so, and especially below 10mg, most of the negative side effects weaken or go away all together.

You did not mention, but often at our age, men take medication for BPH and some of those can cause ED too.

[Iwillwin123]

Just remembered that I had not posted the final outcome of my Erectile Dysfunction problem articulated almost 9 months ago here. I believe it is important for anyone who may read this string in the future , to know that the ED problem disappeared after 3 months on its own . Cannot quite explain how it got corrected though. Must be that as the prednisone dose was tapering off, the effect of the double whammy of Hydroxyurea and prednisone was minimised to some extent. The ED was at its worst at 40 mg and slowly disappeared at around 25 mg prednisone.

[Iwillwin123]

To explain further - one kind person here had attached a paper about hydroxyurea being used to treat priapism ( reverse of erectile dysfunction ) and had suggested that the add -on of 40 mg prednisone ( which can also cause ED ) may have tipped the balance causing a double whammy. I have both Polycythemia Vera ( being treated with hydroxyurea ) as well as GCA ( being treated with prednisone ) . Both the attached research papers are visible above in this string.