Thanks to the people who responded to my recent post..
I finally had ultrasound scan on both hands and wrists yesterday. The sonographer was lovely bless her, she explained everything she saw on the screen and showed me the inflammation in many joints.
I feel relieved as I now know it isn't all in my head. You do start to think you're imagining all the pain.
Anyhoo she said she'll send the report to my consultant and they should now treat me (hopefully?)
I'm just wanting to be able to get back to work, but more importantly I'm looking forward to being able to do the other things like being able to brush my teeth properly, wash my hair, clean myself after going to the toilet (too much info sorry) among other things like not struggling to get the duvet off me at night so I can get to the toilet on time.
I'm still not sure what kind of arthritis it is but I'm hoping the rheumy consultant won't just give me ibuprofen and send me on my way.
Gentle hugs ❤️
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EnglishRose63
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I know where your coming from when you say you feel relieved. I thought I was going mad before I was diagnosed as gp kept saying I was depressed... good news ... well it’s a double edge sword... at least you can get treatment and get back on your feet although it’s not going to happen overnight it’s going to take time
Yeah J1707 Isn't it it strange how you think you're imagining the pain and swelling but you can't do the little things you could do before.. I was beginning to think I was going mad.
Hi I was in position but mine was my knees. As well has my hands. Wrists and fingers. It’s nice to know it’s not in your head. Mine turned out to be Osteoarthritis. Hope you find out soon what yours is soon 🙂
Mine was done by my rheumy dr. She just showed me the screen after she had checked it over. I wasn’t sure what I was looking at but obviously she did lol she just pointed at different areas and said it was Osteoarthritis.
Ah right.. My consultant said she didn't think it was osteoarthritis and that's why she sent me for ultrasound scans as she wanted to see if there was any inflammation.. I wonder what she'll say now.
Ultrasound can distinguish between osteoarthritis and inflammatory arthritis. If the radiographer was saying that she can see inflammation then sounds less likely it will be osteo.
This is what I was told too. I was quite surprised because it seems more reliable than blood tests and I wonder why they don't just scan everything that hurts!
Scans take a highly qualified person manipulating a machine who can do maybe 20 a day. Blood tests take a less qualified person and an automatic machine who can do thousands each day......
She told me if there's inflammation in my hands there's no need to scan any other painful areas as the meds they put you on will fix the other issues.. Hopefully true
Yes, I am. Diagnosis was Dec 2015. Now waiting at least 16 weeks for any benefits of drug infusions received in Dec 2019. Trial and error but getting by with Prednisolone meantime. 🙂
I can imagine. I was diagnosed with seronegative RA years ago and put on methotrexate (because my mum had RA). I had no tests at all. It seemed to dissappear after a year and they took me off dmards. Now I'm assuming it's back but this time I had more tests, but still no RF showing in bloods. Confused 🤔
Seronegative is less easy to discern with tests, as you know. But if it is back, it should respond again to appropriate DMARDs. It’s fortunate that you are on the road to getting relief. X
Hello there - new here and newly 'diagnosed'. I also had a scan on my hands even though the epicentre of my pain is neck and between shoulders. I really forgot about it afterwards and then got a later asking me to attend an urgent appointment as inflammation had been seen in my wrists. My blood tests from just over 6 months ago were negative bu apparently the scan tells it like it is! So, after telling me about the horrendous side effects of hydroxyxchloroquine I was handed a prescription for the stuff. I have to go to an optician appointment first. I'm really not happy about even trying this drug but coincidentally my aches and pains have suddenly got worse in the last week or so.
My bloods rarely show inflammation or very little. I’m symptomatic swelling, stiffness, mobility problems ( lucky I don’t suffer too much pain) but boy do I get fatigue. I personally don’t get on with hydroxychloroquine but a lot of people do and have no problems. We need these horrible drugs to stop future erosion of our joints along side all the other problems RD causes. You will be monitored and you will have a Rheumy nurse you can contact if you are worried about anything. If you don’t try these drugs you will never know if they suit you or work . It’s so worrying when your bombarded with so much information and I’m afraid it’s only natural to latch on to the negative. Any questions someone on here will try and help they are a great bunch we laugh and cry in equal measure
Hi J1707, thanks for your reply. Do you mind me asking what medication you take?
Thankfully, fatigue is the one thing I don't get which is why I have been under the impression that it was probably osteoarthritis. I've had phases of being fatigues but always put it down to other things but I suppose it is part of a flare up?
Before diagnosis I got the “flu” 3/4 (doc said flu) times a year know now it was part of the symptoms of RD.
I started on methotrexate tablets did ok for 3 years but last February things went haywire ( still not quite right) . Started methotrexate injections in September ( I like these better than the tablets) tried hydroxychloroquine and sulfasalazine but extremely allergic to both. Started a biologic( elerzi )alongside my methotrexate injections in January was doing ok till I got a chest infection 4 weeks ago and have just restarted my med last week starting to see improvement already.
Hiya Brychni, welcome. It would seem as though you’ve been diagnosed seronegative, this explains nras.org.uk/seropositive-se...
I'm seropositive, diagnosed in 2008, but hydroxychloroquine was also the first DMARD I was prescribed. It is often chosen if joint involvement/symptoms are relatively mild & has been used for RD a good while now so many here will have experience of it. In fact you'll receive more answers if you start your own post asking for them so it might be an idea to do that. Otherwise use the Search Healthunlocked box, enter Hydroxychloroquine then choose NRAS from the options on the right of the screen.
Your Rheumy has done as he/she should in preparing you for possible side effects but that doesn’t mean you'll have them all, if any. I did have headaches initially & light sensitivity remained but I was living in a sunny country so just blended in wearing sunglasses. I responded well on it for a year on max dose (200mg twice daily) but it started being less effective & as the dose couldn’t be increased methotrexate was added. I've been taking MTX ever since, 11 years now, tablets for a year but ever since by injection. I have tried 2 other DMARDs but they didn’t help.
It was probably explained to you why you need a baseline eye test, it is a rare side effect & much more likely when having been on it at max dose for >5 years. As long as you're aware & have an annual test making it known you take HCQ that's all you can do.
I dare say none of us were happy to start taking these meds but they are necessary I'm afraid. HCQ in common with all DMARDs can take around 12 weeks to work, but hopefully you'll notice some improvement in the weeks before.
it might be helpful to have a peruse through the NRAS site nras.org.uk & if you have any questions just pop back on again. We're always happy to share experiences & there's little we don't know about living with RD. 😊
I was the same kept being told I was depressed 🙄🙄I honestly thought I was going mad. So relieved when diagnosed I’m not a nutter but was in shocked when diagnosed. I was determined it wouldn’t change my life ... that was denial I think it does change your life for the good and bad. The good is I’m much more patient now. This site has helped enormously every body understands .. the people on here really make a difference
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