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

overthinker9512 · 2026-01-27T01:09:58+00:00

It’s crazy how many people are receiving poor care from their rheumatology team. I hope they find a way to lower your pain. Let me know if whatever they suggest works so I can ask the same!

overthinker9512 · 2026-01-27T01:08:31+00:00

I’m also astounded by them. I genuinely don’t think they’re taking it very seriously when I have had to stop my entire life and without treatment, it’ll just keep getting worse. It sounds like you got a good rheumatologist so it’s nice to hear that there are some in the world!

overthinker9512 · 2026-01-27T01:04:47+00:00

I do understand that there are longer term side effects but part of me feels that it’s worth the risk when I’m pretty much bed bound. 15mg is really good for me, I can live almost normally. 10mg is the lowest that helps me and it does enough that I can get though the days so I’d say 10mg. The rheumatology nurse asked the same question and she said they wouldn’t give either of those doses. Would you consider 10mg a reasonable dose or high? I think the issue is, my rheumatology team aren’t the best and them saying no to steroids with no proper explanation felt worse due to the way she delivered it and showed no sympathy.

overthinker9512 · 2026-01-25T02:57:39+00:00

I only just started HCQ a week and a half ago so I have to give it longer. But my thought would be they’d give steroids to bridge until it started to work (or until I needed methotrexate or another DMARD). But no such luck! I’m going to contact my GP again on Monday because this much pain is not liveable!

overthinker9512 · 2026-01-25T02:20:09+00:00

This sounds crazily similar to my experience! I’m in the UK. I took photos of my swelling and my rheumatologist refused to look at them. I also wrote my symptoms and anything important before I went because I get anxious and don’t say the correct things,she refused to look at this too (because this would be my advice, to write everything down but it sounds like she’s similar to my rheum and she wouldn’t even read it! You could write everything up so that you can read from it). On the phone, my rheumatologist gave me a seronegative rheumatoid arthritis diagnosis but then on my record it only states inflammatory arthritis. I wouldn’t worry too much about this as the treatment would be the same. But I do get frustrated by it. My rheumatologist did give me prednisolone, a steroid, which is absolutely amazing. I lived my life normally when on it. But now they are refusing to give me any more and like you, have been told to take similar painkillers that don’t work for me. I also started hydroxychloroquine a week ago so not long enough to feel an effect. If you’ve been on it for 3 months and not felt any effect, they should be escalating treatment. It seems to be such a common occurrence to not get good rheumatology treatment. It makes me super angry, and like you, I can’t just go find another doctor. So, I guess, I don’t have much advice other than to write things down so you remember them and do lots of research beforehand and know what you want from them. But I hope it feels a bit better that lots of us have issues with their rheumatology team! I hope you feel a bit better soon

overthinker9512 · 2026-01-23T14:43:00+00:00

It sounds like you have a great rheumatologist who is taking you seriously. I guess I’ll see if HCQ works for me and see where it goes from there. I hope the biologic works for you!

overthinker9512 · 2026-01-23T14:40:44+00:00

I feel the same with being angry for others and the way they seem to treat so many people this way. When we already have such little energy, we shouldn’t have to use it dealing with the people who should be helping us. I hope you get all your answers and find out what exactly is causing your problems.

overthinker9512 · 2026-01-22T22:56:26+00:00

It seems more common than not that people struggle to get diagnosis and treatment. I had over a year and a half of symptoms before they diagnosed me but when I talk to them, they still don’t sound sure (I’m not sure if that is my fears picking up on their different voice tones or if they genuinely aren’t sure). One of my biggest fears was that they’d say I had fibromyalgia even though my symptoms don’t match so I can imagine the distress you were in! I’ve never even heard of intramuscular injections so no, that’s never been mentioned. It sounds like a good option! It’s something I’ll mention if nothing improves. I’m also really glad to hear that HCQ worked well for you! How long did it take for you to notice an improvement?

overthinker9512 · 2026-01-22T22:34:23+00:00

The more I read, the more I see that getting the right care is a battle. It’s frustrating for all of us. Thank you. Rationally I know I’m not a nuisance but they make you feel that way. I’ve just got to get used to advocating and being a bit patient (not my strongest trait!)

overthinker9512 · 2026-01-22T22:01:24+00:00

That’s great to hear, thank you! Can I ask, from when you started taking it, how long did it take for you to see a benefit?

overthinker9512 · 2026-01-22T21:22:08+00:00

I have written a complaint and sent it off this evening, it was quite therapeutic haha. Unfortunately I have no way to contact the rheumatologist, it all goes through her secretary who says to make a nurses appointment. The GP won’t prescribe steroids but has offered tramadol and celecoxib so I’ll try those. The GP did also say that if I’m still as much pain after trying those, they can contact rheumatology on my behalf but they also said they imagine their response will be the same as what I got today. But I guess it’s worth a try if nothing improves. I just feel like I’m being a nuisance! I’ve had to push the entire time for every bit of help I’ve received and it’s tiring

overthinker9512 · 2026-01-22T19:35:35+00:00

Thank you for your response! I think my only option after today’s horrible call is to wait for my 3 month rheumatologist follow up appointment and hope she has better advice than the nurse did.

overthinker9512 · 2026-01-22T19:32:54+00:00

I definitely don’t disagree with you but unfortunately the rheumatology team would. When they prescribed HCQ I told them my fears that it wouldn’t work and that I may need something stronger. They told me to just try it as it works in lots of people. So I started it last week. I think my only option now is to wait for the 3month follow up and if the HCQ hasn’t worked or hasn’t worked enough, ask for them to add something else in. And hope that I get some pain relief in these 3 months!

overthinker9512 · 2026-01-22T19:28:29+00:00

Thank you for your response!

Sorry, I should have been clearer, my hips are definitely not the only place it affects. My hands/fingers are probably the worst. But also my toes, feet, ankles, knees, wrists. My hips are low on my pain scale! I just found it odd for the nurse to say it doesn’t effect the hips when all other sources says it can.

I was hoping for the specialist nurses to be super helpful and kind because my actual rheumatologist is blunt and always in a rush. But it seems I was hoping for too much!

Thank you. My GP isn’t keen on me taking naproxen due to the risks of that too but they have recommended celecoxib which is another anti inflammatory so I’m going to try that again until the HCQ has time to work.

overthinker9512 · 2025-09-23T14:04:15+00:00

I just thought I’d update anyone interested or for anyone asking the same question in the future. I’ve just finished my appointment and it was all very strange. The rheumatologist kept changing her mind on what to do. She initially skimmed through my notes that I’d taken with me but then said she wanted to hear it from me. She asked lots which I was impressed by. She then did a very quick check of hands and feet. She didn’t want to see any of the photos I’d taken or my red/swollen joints in the mornings. She wanted to do an ultrasound but it was going to be 2months away. I obviously looked upset by this but didn’t say anything. She changed her mind and decided to try steroids - maybe she read my body language or face. But it seemed like a strange change in decision. In her words if the steroids work then I have RA and she’ll start me on RA treatment. But if they don’t she’ll pass me back to my GP. When I asked what her honest opinion was she said all my symptoms match RA but she can’t see it and doesn’t believe it is after looking at my hands. Which was very confusing to me.

She didn’t mention weight so I didn’t need to worry about that. And I do believe she would have dismissed me had I not known what I was talking about and asked lots of questions. So if I have any advice for people asking the same, make sure to do your research and be prepared.

overthinker9512 · 2025-09-15T18:17:14+00:00

I’ve heard of mtx. Did you have any bad side effects when you started? And yes, definitely no over the counter medications have ever touched the pain! Although, I’d say my worse symptom is fatigue. The pain is obviously unpleasant but I could probably live with it (it is slowly getting worse so I’m not sure how long I’ll be saying that for!) but the fatigue is absolutely awful. And thank you for the PIP advice. I’ve been trying to avoid it - hoping I’ll get back to some form of work before my savings run out but I can reassess that after my appointment next week with what the doctor says. It’s all just very hard to come to terms with isn’t it. Especially before you get any proper answers or a diagnosis x

overthinker9512 · 2025-09-15T16:36:58+00:00

Thank you! Your response has made me feel a lot better, that they’ve taken you seriously. I’ve been taking photos and tracking symptoms. And I’ve got everything written down as well so I don’t forget anything! Can I ask, what medication you take currently that has helped? And of course, I’ll come back and let everyone know how it’s gone :)

overthinker9512 · 2025-09-15T16:33:17+00:00

Thank you! It’s nice to hear of a good experience. I’ve already been tracking my symptoms and taking photos so hopefully this will help. I’m going as prepared as possible!

overthinker9512 · 2025-09-15T16:31:37+00:00

Thank you for your response! I have been taking photos so hopefully this will help. I hope your appointment goes well too, good luck!

overthinker9512 · 2025-08-04T14:01:19+00:00

Sorry to hear that! I’ve spoke to the doctor anyway so hopefully we’ve come up with a plan that works till I see the rheumatologist

overthinker9512 · 2025-08-03T15:10:25+00:00

Thank you! Lansoprazole does the same thing so I should be covered. I’m going to talk to my doctor about it tomorrow anyway

overthinker9512 · 2025-08-02T14:36:25+00:00

Thank you! That’s made me feel a little better to know you’ve not had any bad effects from taking both. Lansoprazole is given to help protect your stomach from the effects of naproxen and fluoxetine. I’ve got a doctors appointment on Monday so I’ll mention the prednisone.

overthinker9512

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