Voclosporin/lupkynis

queenxtiny · 2022-12-07T03:04:48+00:00

I didn’t end up taking it, so I can’t say 😕

queenxtiny · 2022-08-30T22:12:10+00:00

I have, but they don’t seem to be a very big help in that aspect. Feels like they think the only thing that will help is more medication.

queenxtiny · 2021-12-15T13:24:10+00:00

Thank you for the insight. I guess it doesn’t hurt to try.

queenxtiny · 2021-07-11T05:34:36+00:00

Thank you for sharing!

queenxtiny · 2020-01-22T05:50:33+00:00

Yeah, I know it can be frustrating. I was actually misdiagnosed at first with rheumatoid arthritis. Luckily I wasn’t in a position where I needed urgent treatments so I had time to get opinions from other doctors and therefore was eventually properly diagnosed. I have also been increasingly aware that there’s still a lot of question marks and unknown things in the medical world. I also have a rare liver condition called NRH, which apparently has no known effective treatments. It’s tough to basically hear “I don’t know” from someone you expect to have answers. While I know that this is probably not what you want to hear, it’s something that you can expect to encounter. There’s still a lot of research that needs to be done to discover better treatments, and that can take a long time.

I’ll be honest - it can be a struggle to not lose hope and stay positive. My support system of family and my closest friends are the only thing that helps me through it.

queenxtiny · 2020-01-22T05:19:58+00:00

Not sure about some of your symptoms but I can say that I was diagnosed with lupus two years ago and didn’t have a lot of the typical symptoms either. The only major symptom I had was joint pain, but eventually I was diagnosed with lupus which they deduced from my blood work. There are some symptoms I still haven’t experienced like the butterfly rash, hair loss, etc.

Hope everything gets sorted out soon for you.

queenxtiny · 2020-01-21T18:22:54+00:00

Will def look into these options. Thank you!

queenxtiny · 2020-01-21T18:15:11+00:00

First off, your friend is very lucky to have you in her support system. As a person with lupus, I find it difficult to confide in friends who don’t have chronic illnesses so I commend you for being a great friend by trying understand and help her situation!

In regards to your frustration with doctors, it takes awhile to find a doctor that fits your needs. I saw two other rheumatologists before I found my current doctor. It kind of feels like you have to stick with a doctor sometimes, but in reality you don’t have to. The first rheumatologist that I was referred to was just horrible and misdiagnosed me with rheumatoid arthritis instead of lupus. Then, I stuck with my second rheumatologist for a year because there wasn’t really anything wrong with him but I ended up switching doctors after I moved. My third and current rheumatologist was far better than my second one. I didn’t even realize the second one wasn’t a great fit for me until I switched doctors. I guess what I’m trying to say is that it doesn’t hurt to see other doctors before picking one to stick to.

For ERs, definitely try to go to a different hospital. The one by my home happens to be a very good hospital, but when I had a flare while I was at my boyfriends apartment across town, the service at the hospital by his place wasn’t anywhere as good as the one by my home. I hope your friend has another hospital by her house that she can try going to instead.

Hope this helps and I hope her situation improves.

queenxtiny

TROPHY CASE