u/AbraWest

Hey everyone, I have RA that’s not responding well to medication (Sulphasalazine). I’m currently waiting to get switched to a biologic but in the meantime, I’m having tons of weird symptoms.

I live in a Spanish speaking country and though my doctor is pretty great and communicates well enough in English i think sometimes we have ‘lost in translation’ moments. I’ve tried to explain this symptom to him and he seems to not get it or think it’s unrelated to RA. But I feel pretty sure that it’s at least related to autoimmune activity and so I thought I’d ask this community if anyone else has had it.

So I get really swollen areas around the base of my hands and wrists, they turn red and kind of puff up, and then everything else (my hand /wrist) gets really stiff and increasingly hard to move. This, on its own, definitely sucks but what sucks even more is if it happens on the inside of my wrist where all the veins are.

What happens then is it feels like I lose circulation in my hand completely, I get crazy pins and needles that last for hours, the only thing that seems to help is putting that area of my wrist under running water, usually warm but I tend to try all temperatures because I have no idea what I’m doing. And if I keep under the water and try moving my wrist back and forth (difficult since it feels frozen), I can eventually get the blood back into my hands. But I have to do this water trick over and over because the swelling just comes back and ibuprofen doesn’t seem to help.

Has anyone had this? If yes, what IS it? Are there any tricks, anything that works? It’s honestly super scary because i feel like the blood literally can’t get into my hand. I would love to know if any of you have had this experience.

Oh hey RA gang, I’m supposed to start on biologics in Sept because my RA has been getting worse and worse.

I have an appointment next week to start the process, I’m definitely nervous and was really resistant to biologics but now, after my increased symptoms which have been awful, with endless fatigue, hands that are painful and don’t move, random joints that stop working … I’m on board. I think anything would be better than what’s been happening lately.

The thing I’m wondering from any of you fine folks who’ve been taking biologics is about the process once you start. I very much know that the effects vary from individual to individual. Some people have crazy side effects and others don’t have any. I also won’t use any of your personal experiences as a replacement for what my doctor tells me.

That out of the way, I think I’ll be starting Adalimumab or maybe Etanercept (humira and enbrel in the US), I have no idea what the initial process is like, I think I have to get some vaccines and a TB test? I’m also about to start a brand new job in a brand new career path (from product designer to English teacher) in Sept and because I’ve heard that not everyone responds well to biologics, I’m nervous and I wanted to ask what some of your experiences have been, including good experiences! And of course any advice, should I aim to take my first dose on a Friday for example, in case I don’t react well, I have the weekend to recover? Does it take ages to start working? Things like that.

I was just thinking it might be good to know what other people have experienced since I need to make a good impression at my new job and I want to be prepared to make the best choices. This seems to be the last place on the internet where you can talk to real people about real experiences that hasn’t been infiltrated with AI slop and I’m so grateful I can ask all of you!

I’m honestly terrified at the thought of giving myself a needle, but I read a lot of lovely posts on here with people suggesting you get yourself a treat to look forward to and that seems really nice.

I’d love to know about any of your experiences and any advice you have! Thank you!

Oh hey guys, the title pretty much says it all. Im curious to know if anyone else has been taking dutasteride abd noticed sexual side effects.

I’ve been on dutasteride for about 14 months, I’ve noticed lower libido, kind of weird changes with sexual function and everything just kind of feels muffled / muted.

Thing is, I’m 43, soooo this could totally be perimenopause or maybe a combo of both which is why I wanted to reach out and see if this is a common experience.

If it is the dutasteride, I wonder if there’s a fix, like taking it every second day or something, has anyone had this experience? If so, was there anyway to improve it? I’m just not ready to throw in the sexy time towel yet, you know? Any of your thoughts would be welcome.

Hey guys, I have been on Sulphasalazine for 2 years which was working great until suddenly it stopped working. 5 months ago after a long (too long!!) stretch of really bad insomnia. I started having more symptoms like fatigue and persistent joint pain in my hand whereas before, if I had pain it was a lot more like PR than RA.

My rheumatologist prescribed 200mg / day of hydrochloroquine about 5 months ago saying we’d check the progress in September.

So I was super surprised when I saw my rheumatologist yesterday - I got an early appointment, and he suggested the hydrochloroquine isn’t working, that 5 months is soon enough to see if it makes a notable difference and that we should switch to a biologic.

I know that it’s good to have a doctor who’s aggressive with treatment, but I’ve had a really mild case, for the longest time it was showing up more like palindromic rheumatism, it was completely controlled with only Sulphasalazine for 2 years.

I also have a weird issue with switching to a biologic. I know that on the other side, a lot of folks say that they wish they had done it sooner. I have a bit of a mental roadblock around it, it’s completely psychological. But I also think I really don’t have a very extreme case of RA (or PR, whatever it is.) it’s only effecting two knuckles on one hand, other than that I’ve been incredibly lucky and don’t have other symptoms. The ones I did have, have chilled out in the last few months.

I ended up saying no to the biologic, at least for now. My doctor said it was up to me but if I didn’t want to switch we’d go to 400mg hydrochloroquine a day (I think the brand name in North America is plaqunil? Something like that.)

So… I guess I’d just love to hear about anyone else’s experiences, have you gone to a higher dose of hydrochloroquine? Did it take a super long time to notice if it improved things? I’m concerned it would take another 6 months to notice a difference.

Has anyone else had a mental roadblock around biologics?

I know this is extremely long winded but I feel like this is the best community to ask, I’d love to hear your thoughts about this, from the perspective of the actual people who have RA instead of the doctors!

If you’re still reading thanks for sticking it out until the end!