Quick Question!

[LLH76]

Hey guys, I’ve been on hydroxy for 4 months, no formal diagnosis as yet, noticed improvement after 2 months...sleeping through the night again, sweats and joint pain reduced..however, got up this morning and my arms are ‘crawling’ again, knuckles going all bulbous looking again, pain back in knees and lifting the kettle was an effort and feeling tight chested.

My question is, do people on hydroxy still have ‘bad’ days and it’s generally accepted that this is the norm or does it mean that maybe the hydroxy is not enough?

[whisperit]

Hello LLH76

I think both answers are possible. Many people on hydroxy are also prescribed a steroid or something similar to help deal with symptoms such as inflammation. If they have a "flare", they may manage it by temporarily increasing their steroid dose for a few days, and when the symptoms subside, they return to their maintenance dose. Since you haven't experienced this before, it's impossible to know whether this is an 'ordinary', self-limiting flare, or something that needs medical attention. Given your inexperience, and the chest involvement, I would suggest seeing your GP (or rheumy nurse?) to discuss. They could at least give you a clearer sense of when you can self-manage and when you need to seek extra help x

[driven]

I think it would be wise to get an appointment to discuss this with your doctor.

[LLH76 in reply to driven]

Lol, I’m trying but can’t get through..then you get physically tired of trying!!! 😂

[Ianrussell69]

I still get bad days but the night swets are definitely less frequent today my knees are quite bad and still get jelly legs and fatigue but persevere it will help

[leslieliesel]

I think I am having a bad day right now...dead dog tired, my hands seem a bit rashy, and my chest a bit pink....I have been on Hydroxy about 4 months......not a huge deal relatively speaking, just answering your question... Your symptoms are worse than how I am feeling , I am sorry ... It makes me feel so sad to realize how many others here are really suffering.....LLH76..I'm hoping you feel better soon... Auto immune disease can be so cruel....don't mind me, just feeling a bit weepy today Xx

[LLH76]

Hey leslieliesel

I just didn’t know how much to expect, like does it wave a magic wand?!

I’m pretty sure it’s helping me but there’s newer problems and I don’t know wether it’s related to auto immune or not, mainly the wheezy breathing and tennis elbow type nerve problems in my elbows. My joints still get sticky in the morning but yesterday it was definitely threatening to start up...wore off as the day went on! Early days so still learning!

Hope you feel better soon too.xx