Hydroxychloroquine and Sildenafil

[Honeymonster]

Hi everyone,

I have just been prescribed hydroxychloroquine for the first time. Normally at this time of the year I resume my Sildenafil.

I thought rather than start them both at the same time, I should start one and then a couple of weeks later begin the other. Just in case I get side effects; hopefully if I do, it will be easier to distinguish which medication is causing them.

I’m not sure which to start taking first. I will email my rheumatologist, but it could be a while before I get a reply.

Thank you so much for your help. I look forward to reading your replies.

Lots of love.xx

[MusicalFurbaby]

Hi Honeymonster, I’ve never taken Sildenafil, but my experience with hydroxy was straightforward. I didn’t have any side effects, though the medication takes a long time to kick in, and they had to step up my dose. It took 2 months all up for the full effects to kick in. Sorry I can’t be of more help, but yes, consulting your rheumy about it is a good move. Good luck!

[Honeymonster in reply to MusicalFurbaby]

Thank you so much. It always helpful to hear other people’s experiences 😊

I spoke with my GP yesterday and she suggested starting the Sildenafil straight away as I’ve already started to get sores on my fingers. Then begin hydroxychloroquine in a week’s time.

Wishing you a great weekend. xxx

[MusicalFurbaby in reply to Honeymonster]

I get sores on my fingers and toes too. The hydroxy helped big time with that, they’ve been diminished by about 90%. I still get them, but nowhere near as bad as I used to, where I couldn’t walk with the sores all over my feet. I’ll be interested to hear how you go with both medications and whether they make a difference for you. All the best!

[Honeymonster in reply to MusicalFurbaby]

Thank you for sharing, it’s so nice to hear when things have worked.

I’ve been on the Sildenafil for 2 days and got up feeling dizzy this morning. I know that is a listed side effect, so hopefully it will ease over the next few days as my body gets used to it.

From what you’ve said, the hydroxy did a pretty good job on its own.

Thank you again. xxx

[MusicalFurbaby in reply to Honeymonster]

Yes, hopefully the dizziness abates for you soon. I too am glad for the hydroxy benefits, although I must say, I was hoping for a few other benefits too. Many others have said hydroxy helped with their joint pain and fatigue, so I was really hoping for some improvements there, but sadly that didn’t happen. It has mostly cleared up the rashes and sores—which I am by no means complaining about!

[Honeymonster in reply to MusicalFurbaby]

That’s a shame - it would have been good if it could’ve helped with those too. I find fatigue can be so debilitating. xx

[Cal66]

Hi Honeymonster I don't want to ve a downer but please be careful taking Hydroxychloroquine. I took Hydroxychloroquine for about 16 to 18 years and now I have Toxic retinitis and going blind because of the Hydroxychloroquine'', so please keep having eye tests and ask to see an eye specialist to monitor you.

[Honeymonster]

Thank you for your advice.

I’m so sorry to hear of your terrible experience 🥲

I’ve had a bad experience this week with Sildenafil. It has made me very dizzy and nauseous. Vomiting every time I stand up and walk. I’m now really frightened to try any other drugs.

May just stay on Apixaban and try to manage other symptoms without drugs.

Take care and thank you for sharing.xxx

[OldTed60]

Hi. I wouldn’t worry that your reaction to Sildenafil, presumably for Raynaud’s rather than for Lupus/ APS/ CTD, means you’ll react adversely to Hydroxichloraquine or other meds, which have a different remit. They are completely different drugs and your reaction to Sildenafil seems pretty typical of reaction many have as it’s a powerful vasodilator. Like you I was put on this once, about 8 years ago, and couldn’t cope with the side effects - nose bleeds and terrible headaches and nausea in my case.

Hydroxichloraquine I managed for about 18 months before Hives started, with and without Methotrexate injections, even longer ago. Hydroxychloraquine is for your systemic Lupus/ CTD and is usually well tolerated. You will need regular eye checks but the retinal problem is very rare, and usually only after long term use. It is the gold standard first line treatment for Lupus and other connective tissue diseases and well worth trying I would think. And I say this as someone who has had many adverse reactions to medications - presently on Mycophenolate and Rituximab infusions and doing fine on both of these.

For my Raynaud’s I now take Losartan 100mg and have monthly Iloprost infusions. The Iloprost is hard to tolerate but it gave me back the use of my fingers and prevents digital ulcers and painful blisters forming so I keep going with it.

[Honeymonster in reply to OldTed60]

Thank you so much for sharing. It is always interesting to hear from others in similar situations.

Losartan has been mentioned to me, along with Nifedipine. I will talk to my rheumy team about these.

Take care and have a happy Thursday 😊xxx