I finally gave in and started hydroxy. Still no acual diagnosis other than possible Palinindromic RD or early RA. Pain is moving to most joints and comes and goes randomly, excep my right elbow is almost always painful. My fatigue has been ghastly. I sleep way too much and never feel rested. Exercise makes everything worse. It's been only a few days on hydroxy. Yesterday I had intermittent fast muscle twitching/fascilatations in my right upper back/shoulder area. When I woke today I had them intermittently in the back lof my legs in thighs area. It happens, then stops and happens again. Can that be a side effect? If so can it go away or might it get worse? I did read to call if there were involuntary facial movements.
Right now I'm ready to give up. My quality of life is crap. Who knows when COVID will be controlled. I'm in the US so it gets worse by the day. We have no leadership, and the lunatic keeps encouraging no masks or social distance. He has rallies and masks have become a political statement. Maybe lying flat on my back is as good as it gets.
Also, rheumy says any stronger drug is not an option now because she's unsure about the diagnosis and stronger drugs are not worth taking the risk at this time. Actually, I'm not sure if I'd try them right now anyway. I just feel defeated.
Didn't mean to have such a long post. I'm starting to tear up now and I'm not one to cry. Guess it's a sign I needed to get it out. Thanks for reading. 🥺
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lovemydoggy
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Hi lovemydoggy. I'm sorry to hear that you're having it tough at the moment. The awful tiredness is what I get with RA. I'm not on Hydroxy but there will be others who will be here eventually and I'm sure they will give you good advice. All the best. xx
If you need to cry, this is a great space - we are that shoulder - better out then in too.
Everyone here has a story and what's great about our stories is that through the pain and frustration and anger and hurt we come out feeling so much better. If unbearable go back and insist you can't function is there other interim options on the table.
Sending you virtual blessings, swift wellness and better days ahead. Hessie
😌
Hi lovemydoggy sorry your suffering but we have all been there. I’m flaring at the moment and poleaxed by fatigue. Like you exercise just makes it worse and walking my dog is almost impossible. I had been doing so well this flare is 10 days now and getting me down.
Covid has delayed treatment over here as well and people are in limbo . Here what your saying about leadership I’m not enamoured with yours or ours but I won’t go on about that I always end up in trouble 🙄 hope tomorrow is a better day 🤞
You must be really anxious with all this going on with your own illness and what is happening all around you. It does sound as if the symptoms you are getting could be part of those general and understandable feelings. But always best to check in with your rheumy team to be sure, and they need to know how you are feeling.
I was on hydroxychloroquine for many years (one of the few medications available then!) but didn't have any side effects. It just wasn't terribly effective for me but it was better than nothing.
Feel free to rant on here - we do understand how awful it can be, especially when you start on this 'patient journey' as they quaintly describe it.
The fatigue with uncontrolled RA is just the pits. Unless you have it there’s no way to explain how awful it is. But early days for you so give hydroxy time to work. It can be a great drug.
The range of symptoms with RA is immense, and variable from day to day. I’d guess that your muscle twitches are the disease not the drug. But always tell your rheumy team to be safe.
I really wouldn’t want to be where you are now. But at least the US has a bottomless supply of hydroxy since the orange one bought millions of $$ worth!
My rheumatologist said they had had trouble getting it for Lupus patients who depended on it to survive. Thanks to the orange one. I was really amazed at how many people actually drank bleach and household disinfectant because of him. Not a great time to be American. Your government is, at least, keeping us out. haha
Hugs for a start, i am on hydroxy without any side effects and that is the only drug i take for my ra due to other health problems. Has anyone mentioned fibromyalgia to you before as people with ra often(not always) get fibro as well. Look it up and see if that is of any help to you.xxxx
Sorry you feel so awful at the moment. I remember feeling that way at the beginning. It does get better. I think we are all feeling depressed at the moment because of what is going on in the world. Keep strong you will get through it. I am off to dr for my first blood test in 4 months feeling very anxious as haven’t been anywhere. Good luck xx
Hope the test went well! Going out is a bit scary. Still, as long as we're careful we should be ok.
Your description of symptoms mirrors exactly the experiences I had. I started on Hydroxychloroquine in February 2020 and it did not take effect until 12 weeks later in (I had two 6week spaced steroid injections during this time to help with pain and fatigue). I am now pain free and living what I thought was the virtually normal life I never thought I would have again. Stress during those first 12 weeks can imagine all kinds of things. Stay calm, have patience and trust and believe. Maybe ask for steroid injection? It helped me enormousy and gave me a glimpse of what was ahead. This forum was my 'go to' for knowledge and experience. The people here are angels, their constant support and love is incredible. You can do this.
Hi, I’m on hydroxy, it really does take a while to kick in. It made me quite sick when I started it so my doc told me to take one then 2 alternate days and always take it with food. Then I built up to two a day. Most people have no probs with it, hope you are having a better day 🤗 hugs x
I’m so sorry to hear you’re going through that fear ... I know what that’s like as I too am early stages on my ‘ patient journey ‘. I find watching the news and worrying about what’s going on outside makes everything worse. I create a bubble ... just me , my dog( who still loves me with or without her walks bless her) and some cheerful or relaxing music . I wish you all the best and hope the drugs kick in soon! ( I had a steroid shot and it made a huge difference so maybe a ask for that ?)
So sorry to hear you are having such a difficult time. I have never heard of early RA. Surely, you either have it or you don't. I don't know how they deal with things in US but you need to go back to rheumy and tell him/her how bad you are. Are you waiting for blood test results? x
I'm seronegative on absolutely everything. I asked one rheumy (not the one I have now) to humor me and test me for every autoimmune disorder that included any of my symptoms. All negative. Recent tests for inflammation and RA factor negative. Interestingly, she had me do an EKG prior to giving me the script. It showed elevated ST, which can be associated with pericarditis, which often happens with RA and other autoimmune disorders. She consulted with a cardiologist who said the ST elevation was benign. I have had chest and rib pain. Intermittent, but severe. I'm wondering if the EKG might actually point to pericarditis??????? Then again, what do I know? Not enough!!!! Yikes.
Hi. When you're recently diagnosed it's a real shock. I've been on remission from RA for 5yrs. Then I had a "virus"in March and whoa those joints started swelling!! Luckily my Rheum. Team are great. Gave me steroids and Hydroxy. It takes a while to take effect but I found it worked last time alongside Methotrexate(which they won't prescibe at the moment). As others have said keep in touch with your Rheumatology team.
Some self-love helps. A little walk, a comedy programme, a nice bath. It feels crap and the fatigue is horrendous at times but listen to your body and give it space to adjust.
I have been on Hydroxychloroquine for nine weeks and still waiting for it to kick in. Like you I am just being this journey and find this forum really helpful. Hope things improve for you soon.
Lots of replies have said it all really. I had an initial diagnosis of acute palindromic RA, but my consultant sees it as just a different manifestation of rheumatoid and treats it the same.
Hoping you feel better soon - lots of self love and rest and healthy food and gentle stretches in the meantime. And speak to your rheum team about the twitches - I believe Hydroxy can cause nerve fibre problems , but needs checking
Over the years I have had many many RA meds. Days is too early to say if they will work or not. In my experience it can take a couple of weeks so hang in there.
Stress can really set off my RA and it sounds like your really stressed. I would be too in your shoes! The UK hasn't done well with the virus but the US is on another level. Talking on here is a start. Try some heavy metal, a good scream does wonders.
You poor thing. Please hang on in there. Dont give up , do you still have Dexter? The hydroxychlloroquine has helped me with the fatigue although after 4 years. of being fobbed off I only got Methotrexate injections after having mris of my hands and feet . I think lockdown and politicians are causing widespread issues with mental health regardless of which country you live in. Try to pause and find pleasure in the little things - clean sheets , toast and a nice marmalade , flowers - i have a little dog too and even though everything hurts I am so glad i have him xx
Bless you - it is so hard to know what to say sometimes but you are not on your own. 5 years ago my husband left me and at the time the only way i could deal with it was to concentrate on only looking one hour ahead . I was fortunate to have some supportive friends but found that by only thinking of getting through the next hour brought me peace. It is so easy to let things get out of hand and worry about the day tou never saw but to just be kind to yourself and spend time doing little things you enjoy - a new book, a walk with Dexter, a soak in the bath , choosing a new house plant for your living room - visiting the coast...... all of these things will eventually make a difference to how you are feeling xx
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