Meds

[Louisethew]

2 weeks in with correct dose of urso for pbc and steroids for newly diagnosed aih and I feel like a new woman 😄. Muscle pain reduced within 24 hrs from a pain score of 10 to a 2 , for the first time in over 6 months I feel I'm actually doing my job properly at work ( I support autistic adults) . On the down side have dry eyes , suffering leg cramps ( not sure if because I'm walking loads more and faster 😄) and a little bit touchy 🙄( steroids? ) am worried for future as didn't ask consultant questions 2 weeks ago as in shock with diagnosis ( he thought fatty liver) back to see him in 2 weeks so will have questions ready , but to be pain free and feel more " normal " makes a huge difference to mental wellbeing 😄

[Ktltel]

Wonderful news. It's always great when something goes right for a change. So happy the meds are doing the job and you're feeling better!!🙌

I have muscle aches mostly at night and terrible dry eyes too. Thank goodness for Sustane and Refresh eye drops!!

Hope the meds keep you going in a positive direction!! That's what we all hope for. 😊

Stella ❤

[SandraS]

Hey Louise, great news, I'm 3 weeks in and feeling great too. No pain and energy! My LFT's are nearly all back in normal range except ALP which is a third of what it was so all good. Only downside disrupted sleep and a horrible taste in my mouth. Have you had any side effects?

[Louisethew in reply to SandraS]

I've got a sore mouth , loads of energy but not much sleep , and I'm a little short tempered at times 🙄not had any blood results back yet .

[SandraS in reply to Louisethew]

My hubby says I've been short tempered too lol! Hope you dont have oral thrush its apparently quite a common side effect. I've had the other kind and now on preventative pessaries once a week. It will be worth it in the end.... I hope.

Keep in touch

Sandra

[Louisethew in reply to SandraS]

Yep it's thrush 🙄take steroid inhaler too for asthma xx I lost the plot over a packet of crisps the other night hubby was looking up numbers for divorce solicitor 😂😂

[SandraS in reply to Louisethew]

😂🤣 at least we can laugh about it x

[Louisethew in reply to SandraS]

Every day I'm alive and pain free is a bonus , have lost people already this year ( one to a blood clot ) and my friends 22 yr old was murdered on her gap year so sad and life so short . I'm pain free and not yellow so I'm living life and trying not to worry. 18 tablets a day, oral thrush , no sleep , manic energy and a short fuse bring it on 🙄😝😬😇

[gwillistexas in reply to Louisethew]

I was on a steroid inhaler starting Dec 2016 for upper respiratory. Then stronger antibiotic, levoquin. My mouth was so sore. My dr gave me Nystatin 112 ml. Liquid mouth rinse with almond flavor. You can rinse & spit out or you can swallow so it coats your throat & stomach in case thrush has gotten that far. I loved it & it worked pretty fast. I stopped steroid inhaler when diagnosed with PBC as they can be harmful to the liver.

[gwillistexas in reply to Louisethew]

If I may ask, which inhaler do you use? Mine was Qvar. My dr didn’t tell me to stop using it, I chose to.

[Louisethew in reply to gwillistexas]

Fostair , gp up it to this strength as asthma was bad I only normally do 1 puff morning and 1 at night but have upped it this winter as it's very cold here and there are some really nasty chest infections going around . I always wash mouth out after using just think all the steroid tablets on top have tipped me over the edge , it's hard to get an appointment and I feel guilty taking up Drs time just for oral thrush 🙄

[gwillistexas in reply to Louisethew]

I understand. My dr first wanted to call in script for antifungal pill. My friend told me about the Nystatin so I called dr & got it. Not expensive & much better than putting more drugs in the system😊

[gwillistexas in reply to Louisethew]

But be careful because thrush can move down into your stomach.