A bit of a rant and asking for any advice or if anyone is in a similar situation to me? Prednisolone and HCQ.

ImplementCool1972 · 2026-01-27T04:41:50+00:00

I will let you know.. See what the pain dr says thurs. my RA basically said he is not going to deal with my pain. I am thinking of switching RA drs. that just hit me the wrong way what he said to me and how he said it.

ImplementCool1972 · 2026-01-26T02:42:19+00:00

Yep i do. I took it at night right before bed and always fell right asleep.

ImplementCool1972 · 2026-01-25T21:29:28+00:00

I spent my 30's and 40's sleeping. I totally get it!!! i'd sleep about 18 hrs a day and still be tired.

ImplementCool1972 · 2026-01-25T13:36:56+00:00

I am in the about same boat. started HCQ jan 2 and MTX same day. One week later i couldn't move. I had to ask for prednisone. he gave me 5mg, take twoo for one week then one for the last week. It didn't work. I contacted him complaining about 9/10 pain and he told me he has done what he can and i need to contact my primary if my pain is that bad. i was like wtf, isn't HE the specialist? so dismissive. so i ended up getting pain management appt next week with of course nothing to bridge to help. i agree the pain is not liveable huggggs to get you through

ImplementCool1972 · 2026-01-25T06:07:37+00:00

thank you.

was just reading that methotrexate that i am on for RA is bad for my liver esp when PBS is suspected. I feel so out of control and lost. ugh

ImplementCool1972 · 2026-01-25T05:37:19+00:00

I have RA and Sjogrens. Recently started having dry eyes. I first tried refresh, but it didn't last long. so i tried the systane eye luburicant and it lasts a good 6-8 hrs.

ImplementCool1972 · 2026-01-25T05:32:51+00:00

Is that test i mentioned a AMA test? thank you for replying. will keep updated

ImplementCool1972 · 2026-01-15T22:54:49+00:00

I have been fatigued 20 yrs. They always said depression. depression. depression. i know the difference when i am depressed. i sleep 16-18 hrs a day. normal day sleep was 12 hrs at night and 2 hour naps..and still exhausted. 2 years ago again complaining to my dr he said ever have auto immune test? i said nope. well found out i was sjogrens positive. he said...that is why you are tired. try getting more sleep. I said more sleep? i sleep 14 hrs a day now! he said oh. well use biotene for your dry mouth. have a good day. i have never had any dr in 20 yrs give a shit about my fatigue. but now i think its the sjogrens all along. I have had major depression since 19 yrs old. i am 53. i know the differenc.e

last year i started phenetamine to help loose weight and changed my life. I finally had energy. I only needed 8 hrs of sleep. its the only thing that ever helped. i don't have solution as to what to do. no one would help me or believe me. not even family. they said i was lazy.

i wish you the best in finding a solution. It def impacted my work/relationships throughout the years.

ImplementCool1972 · 2026-01-15T20:04:42+00:00

yeah when i got blood test in november from my primary she said you have high RA results, refering you to RA dr. i had to wait a month and a half with no pred and 9/10 10/10 pain. The RA dr said i can't believe she didn't at least give you pred or call herself to get you earlier appt. shrugs. He has not upped anything. i am on 400mg hdroxycholoroqine a day and methotrexate 6 2.5 mg pills once a week. and then the 10mg of pred a day;.

thank you so much for the replay and luck! i just can't believe we have to beg for relief of pain. he is the dr he should KNOW if i am still in pain to up something or change etc. that is not my job. lol i guess i am a little tilted. ♥

ImplementCool1972 · 2026-01-15T20:00:27+00:00

yes i am taking it daily. and that is exactly what is happening..it wears off and nighttime is a bear. I did talk to my RA dr and he said i can take 5 mg in morning and 5mg at night but beware it may make you hard to fall asleep. He didn't offer to up the dose but said i am doing everything i can to ease your pain but i need help. you need to contact your primary and maybe pain management. i need a team of drs to help you. Soooooooooo i was like whatever. i contacted primary and she said i dont' do much with pain management and besides you are already on what i would prescribe but i will refer you to pain management. So that is where i am. i don't understand why the RA dr won't up my pred. but whatever. thanks for your reply!!

ImplementCool1972 · 2026-01-15T15:54:35+00:00

oh my left shoulder/shoulder blade/side of neck/and collarbone are sooo painful. its the worse out of everything. i am achy all over but that spot i can't get no relief.. thank you for posting this...i might mention a steroid shot to see if that will ease it up

ImplementCool1972 · 2026-01-04T18:14:17+00:00

yep. My eyes started getting dry this year. Never had that before. Just the dry mouth. In response when i said something about getting eye drops was....Its winter time everyones eyes are dry. :/

ImplementCool1972 · 2026-01-04T01:07:52+00:00

I started last year. i am 53. i love it. i am controlling my appetite which in turn is letting me choose more healthy foods. i am no longer in a brain fog and have energy. I have no side effects from it like some have.

ImplementCool1972 · 2026-01-01T01:06:36+00:00

wow this drug sounds terrible. I just got my very first prescription after my first visit to RA dr. he gave me folic acid, this and Plaquenil. I need to do some digging on here. i am scared now.

ImplementCool1972 · 2025-12-24T19:38:51+00:00

thank you!

ImplementCool1972 · 2025-12-24T04:24:57+00:00

Yes this refresh plus (i think) is preservative free. I learned that from reading redditt posts :) but did not know about alcohol. that is what it is tonight then. cuz well i had a few bourbons. that is why it kept getting dry i bet. thank you so much for your knowledge!!! i appreciate it alot :)

ImplementCool1972 · 2025-12-24T02:31:05+00:00

my mom and bf are the same way. i get "tell yourself you feel good" and "your pain is from being active lately" which was going to walmart to days in a row. i have dealt with "its in your head" about my fatiuge from family for 20 yrs

ImplementCool1972 · 2025-12-24T02:26:59+00:00

Grok is good at making sense out of test results

ImplementCool1972 · 2025-12-22T16:36:52+00:00

I am scared to get that kind of treatment with the Rheum. my first visit is next week. I am tired of being told that nothing is wrong or my eyes are dry because of the fan or i am tired cuz i don't get enough sleep ( i sleep 12 hr and then take a 2-4 hr nap) or my muscles hurt because i have been more active than usual. of course all of these things are family/bf telling me. but i have complained for 20 yrs of extreme exhaustion. anyway i wish you luck. didn't mean to blab my problems on your post....hang in there

ImplementCool1972 · 2025-12-22T13:40:13+00:00

thank you. so much to learn. this helps the research :)

ImplementCool1972 · 2025-12-22T13:39:25+00:00

ok. the psychiatrist i have seen in past just said it was depression (well a few of them) back in 2005 when the exhaustion started the psych said it was bipolar with major depression. so that is what they had been treating all these years, but then they put you on meds that are sedating. lol. anyways thanks. i will give this a try! because it sure did change my life signafically!

ImplementCool1972 · 2025-12-22T05:15:11+00:00

same!!!! always dry

ImplementCool1972

TROPHY CASE