So fed up

[Nellie1965]

Hi everyone,not posted for a while,i’ve Been reading all your posts.I’m so fed up with the exhaustion and the pain,my feet are chronic T the moment.I asked for a second opinion a few months ago witch I got.Had lots of bloods,xrays,scans.Looks like it paid off,had a phone call Monday,looks like I have RA.😩Got an appointment on Wednesday.They want to start me on Hydroxichlorquine.Has anyone been on this?Any advise?Anything would be helpful.Also,my beautiful mum has been dead 17 years today.Worst day of my life when she left.😩😩😩Thanks for listening.xx

[Nessa28]

🤗🤗🤗💐

[helixhelix]

Hydroxy was one of the drugs I was on for around 8+ years. It is the drug that is most easily tolerated with the fewest side effects. The only issue with it is that there is a small risk of eye damage, so you need to get your eyes checked before you start.

It used to be that you then got them tested every year, but the recent guidelines from royal college of ophthalmologists are that until you’ve been on them for 5 years there’s no need for annual tests. However your hospital will tell you what they think you should do as they may follow different guidelines.

[Ruth12345]

Sorry about your dad. 2 years this week since my dad passed, 6 months after RD diagnosed. Would spend 10 hrs a day at hospital. Wanted to stay but body wasnt coping and wouldnt have managed. Pleased things are moving on for you. Ive been on hydroxy plus other things for 18 months or so. They havent caught up with the 2 year thing here yet as ive had eyes tested twice. All good, no reaction in any way to it.

All the best.

[Nellie1965 in reply to Ruth12345]

Thankyou Ruth,yes mum is 17 years today and my dad will be 48 years dead on Wednesday,the day I go to Rheumy for my Hydroxi.Bad memories.At least they’re all at peace now.xx

[Ruth12345 in reply to Nellie1965]

Thinking of you. Hugs. X

[marieliddy]

Hi, I'm currently *undiagnosed* because I have all the classic symptoms but blood tests are normal and I have no visible swelling or deformation yet. I had a positive response to predinisone and along with my family history, my rheumy recommended hydroxychloroquine. The first several weeks I had some moderate nausea and vertigo which subsided. I also had several weeks of diarrhea, which may or may not be attributed to the meds. I've been taking it for 3.5 months and it only recently started to make a difference. During those first 3 months, I continued to have 5 flares. I started to feel the medication working and went about 21 days without a flare and I believe that I am flaring again right now, but to a much lesser degree than before. The pain is never totally gone, but it has become a dull ache (my pain is in many joints).

[Ali_H]

Hi,

I’ve not been on that med but things that have helped (methotrexate is my DMARD) are drinking plenty of water, eating reasonably clean (less sugar, less meat etc.), resting when I need to and not judging myself when I need to have ‘duvet day’.

All the best

Ali

[Nellie1965 in reply to Ali_H]

Hi Ali,my mother in law is on Methotrexate for about 10 years now.They want to start me on a milder one first.I think I need to learn to sit more aswell.xx

[Hidden]

Hi Nellie, I’ve been on hydroxy for about 25 years and have never had any side effects or problems with taking it. My eyes have been fine and I have annual checks on them. Here’s hoping it works well for you 😊

[Nellie1965 in reply to Hidden]

Hi Kitty,thanks,gives me more confidence about taking it.My mum was called Kitty aswell.Its her anniversary today.17 years since cancer got her.Take care.xx

[Hidden in reply to Nellie1965]

Thinking of you Nellie, you take care too x

[Nellie1965 in reply to Hidden]

Thankyou.You too.xx

[Nellie1965]

Thanks everyone for your reply’s.Hopefully it works with little side effects.I already have diverticulitis aswell,don’t need any more flares of that either.I’ll be back with updates.xx

[precious123]

Hi Nellie I have been on plaquenil (hydroxy) for years. Quit taking for a couple of years because I thought it was making my eyes worse even tho I was having yearly exams at the optometrists. I have recently started back just to see if it was helping any. I really couldn’t tell a difference either way but I have failed so many drugs for RA I’m willing to retry anything. I’m on methotrexate injections along with prednisone and hydroxy feeling so much better so I’m hoping the methotrexate doesn’t bother my liver. This is my second try on it after 10 years. Last time it started messing my liver count up so we will see. Hoping for the best that’s for sure. I’m so sorry about your mum. Hugs to you

Peggy

[Nellie1965 in reply to precious123]

Thankyou,means a lot.Yes i’ll Try it and see if it helps.Thanks take care.xx

[pd118]

tea helps me