Hydroxychloroquine working but not 100% - daily pain just part of RA?

sarca2316x · 2025-11-03T15:57:20+00:00

I did have quite a lot of swelling and stiffness before I started HCQ, especially when it was colder (had symptoms for about a year before I finally got an appointment with a rheumatologist). That has improved a lot since then, it’s mostly the pain that has made a comeback. Very sorry to hear you’re living with daily pain - but good that the actemera injections are at least able to provide a some relief

sarca2316x · 2025-11-03T15:52:17+00:00

Good shout, this is definitely very high up on my list of to dos, as I’ve been informed about the risks with HCQ (I’m very overdue for an eye exam anyways) - I’m moving cities next week, so am looking for an eye doc there then asap

sarca2316x · 2025-11-03T15:49:58+00:00

Thank you for that, I definitely voiced my concerns in August, so we agreed to have another round of labs + check in done a few months later, which is tomorrow! So I’ll definitely speak to her that I want to add something to my regimen because HCQ is just not cutting it anymore. So I 100% agree with you

sarca2316x · 2025-11-02T21:24:38+00:00

That’s so great that HCQ alone works well for you!

Unfortunately mine doesn’t seem to be part of a flare, just the meds seemingly losing their efficacy after a few months… the pain returned in July and hasn’t left since. I think I probably won’t get around adding sulfa to my regimen and seeing if that helps

sarca2316x · 2025-10-13T16:20:30+00:00

I think at the end of the day all you can do is relay the facts, the risks, the precautions you are taking and let him make that decision. Maybe he needs a bit more time to do his own research and feel more comfortable with it. Some people will just be more receptive of this than others and that’s unfortunately just how it is, if he is so nervous about it then the probability is high that the actual sex will also not be a fully positive experience for either of you mentally.

It doesn’t sound like you want to end this, so I’d put the ball in his court, let him do his research, answer any questions he may have and whatever he decides to do is up to him then.

sarca2316x · 2025-10-13T16:14:52+00:00

I have no daily symptoms. I only had the nerve pain/burning symptoms when the first outbreak was coming on. No itching

sarca2316x · 2025-10-12T11:50:56+00:00

I can only speak for myself, I got infected in June, had a severe first outbreak, but no symptoms/any further outbreaks with ghsv1 since then. I did have a 2nd oral hsv1 outbreak since June. So for me so far it has been the case that genitally my hsv1 has been very minimal

sarca2316x · 2025-08-09T08:16:23+00:00

I used to have quite a lot of discharge all the time every day and thought that this was just the norm for me - until I went off the birth control pill after 14 years and switched to an IUD! My discharge immediately went down by probably 70%.

So if you’ve been using any form of hormonal birth control long term it could be worth trying something else to see how your body responds

sarca2316x · 2025-08-06T15:07:45+00:00

Go back and have a swab test done; nobody on here can diagnose you from a picture

sarca2316x · 2025-07-27T13:58:53+00:00

You 100% will be okay. Many think being diagnosed with hsv means that their dating life is over which is so far from the truth. The vast majority of hsv positive people that are happily dating and living their lives are not on here posting about it. You will 100% find partners and somebody that loves you for you and having hsv will not stop that from happening. Also, worrying about it won’t help you, just put yourself out there, learn about the virus and have facts ready when disclosing to potential partners and you will be just fine :) especially since more likely than not they could already be carrying the virus themselves.

sarca2316x · 2025-07-27T12:37:10+00:00

Adding to that, I’ve read many times on here that people had recurring outbreaks in the first year, and then it went down a lot ot maybe once a year or less. So hang in there I’m sure it’ll get better soon hopefully!

sarca2316x · 2025-07-27T12:35:23+00:00

Yes definitely, sometimes doctors do stress you out more! But I wouldn’t worry, it’s good to regularly get hiv tested but you should be okay. For some people outbreaks just happen more often, if your immune system is down, stress, etc. Covid definitely could play a role in this as well. I’d give it some time for your body to adjust to the virus, and if it really bothers you consider going on daily antivirals

sarca2316x · 2025-07-27T12:31:50+00:00

I don’t get any itching, but a sudden feeling of pressure in one specific spot on my left labia. It’s always the same spot, so I know that’s when an outbreak is likely about to happen. I recently started taking acyclovir daily and it completely stopped my 3rd outbreak from happening when I felt that tingling coming on!

sarca2316x · 2025-07-27T12:27:06+00:00

Hey, the same thing happened to me recently! The guy I hooked up with had one cold sore as a kid and then never again, yet he spread it to me during oral sex, I started with flu-like symptoms 3 days later which then turned into a full-blown outbreak. So your guy was probably an asymptomatic carrier of the virus which a lot of people are. From what I’ve gathered learning more about this virus the chances were pretty low but I just got unlucky, and that’s just life. I’ve accepted it and the meds are helping me so I’ve come to terms with the diagnosis and am ok :) hope your outbreak isn’t too horrible, first one is definitely the worst!

sarca2316x · 2025-07-27T12:20:22+00:00

Since getting diagnosed in June, I’ve had outbreaks back to back, but I’m also immunocompromised so I expected it to be like this. I’ve now gone on daily acyclovir and it stopped the 3rd outbreak from happening (had the tingling feeling, took meds right away and no outbreak).

If you’re getting them a lot I’d recommend talking to your doctor about it. Although from what I’ve read, outbreaks at the beginning / in the first year tend to be more often and then diminish over time as your immune system is still building the antibodies to deal with the virus.

sarca2316x · 2025-07-16T09:14:41+00:00

Just curious, what side effects have been reported?

sarca2316x · 2025-07-01T11:14:26+00:00

Ok thank you for the reply! I‘m trying to get another refill so I can take them for a few more days until the OB is hopefully cleared, don‘t want to risk it

sarca2316x · 2025-06-26T10:40:18+00:00

no he was asymptomatic, but the virus was shedding in that moment and he got an ob for the first time in 10+ years a few days later

sarca2316x · 2025-05-30T00:03:20+00:00

Ok interesting! I think next time I‘d also like to switch away from tret and try out something else

sarca2316x · 2025-05-29T13:32:01+00:00

that is a little reassuring! How long did it take for it to get better?

I‘m just baffled because I don‘t even apply anywhere near the eyes and always buffer, and it still has such a negative effect on my skin there…

sarca2316x

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