Anyone with sudden onset inflammatory osteoarthritis in hands and wrists at a young age,44?

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Sharryaudrey
Sharryaudrey Member Posts: 12
edited 28. Nov 2023, 14:07 in Living with arthritis

Hello, lovely to find this forum and relieved to have a safe space to learn and share through this journey. From what I’ve read, this condition (inflammatory osteoarthritis) is rare enough as compared with the age related non-inflammatory wear and tear osteoarthritis.

I’ve been diagnosed by two rheumatologists and started on hydroxychloroquine week one now.

All the information I’ve read implies that this is a rare condition, affects middle aged women around menopause and usually ends up with erosive OA on scans.

Would love to link in with others who have gone through my journey and understand how fast this condition progresses.

Thank you!

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  • Ellen
    Ellen Moderator Posts: 1,668
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    Good morning @Sharryaudrey I have just replied to you on your other post.

    Please do not feel alone Inflammatory Arthritis is not uncommon at all here. I hope some of our members will come along soon to share their own stories with you.

    Best wishes

    Ellen.

  • frogmorton
    frogmorton Member Posts: 29,545
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    My inflammatory arthritis came out of nowhere too I was slightly (though not much) younger than you are at the time. I woke up one day 'stuck' in position and swollen up in agony.

    I think or thought that the only reason they called it 'inflammatory arthritis' rather than Rheumatoid Arthritis was because I had no Rheumatoid in my bloods so was seronegative. There are other inflammatory type arthritises like Psoriatic Arthritis which also is seronegative.

    I also started out on hydroxy. It is one of the safer DMARDs (Disease modifying anti rheumatic drugs) more easily tolerated I hope it really helps you. You are going to get your eyes tested I hope? That's the main risk with hydroxy. In time you might gather another DMARD like I have.

    Do keep posting you are not alone anymore ((()))

    take care

    Toni xx

  • Sharryaudrey
    Sharryaudrey Member Posts: 12
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    Thanks Ellen and Toni, it's so nice to have an avenue, a channel to talk about how I feel. There are a million and one emotions going through my head and frankly, I am really confused and afraid. Sometimes I'm hopeful, and at other times in despair. I am sure you've all gone through these rollercoaster emotions and hopefully have all come out well on the other side. I really admire the strength in this community with all the ailments we all live with but are able to lead a full and complete lives. It is really inspirational to me!! I know a lot of it is having a positive mental outlook :)

    For me, I'm going from a healthy active pain-free busy working lifestyle with two young kids to where I am now, only two months later with difficulty doing the most basic tasks like washing a pot or lifting a kettle. I'm also baffled about the diagnosis of inflammatory Osteoarthritis in that all the trials out there show no benefit of any of the disease modifying drugs. It's like waiting for a certain unfortunate fate knowing nothing can change the course of the disease. At times, I wish I were diagnosed with a more defined sero-positive disease that can be treated with some proven treatments. One of my rheumatologists has given me hydroxychloroquine. My GP is giving me a short course of 10mg steroids to see if it will ease the symptoms. The other rheumatologist has just said to let it run its course with pain killers...

    I'm not an idealist nor a pessimist but I feel that if I have a little more knowledge in how others fared with the same ailment, I'd be more prepared of what's to come. I wonder if any others in my situation actually did see an improvement with any treatments....or is this just it? I think the rheumatologist called it erosive inflammatory OA (even though xrays are not showing erosions) and said I'm going to get deformed fingers and lumps in time, sometimes rapidly.

    Sorry about the rant.

    Sharry

  • AndyT
    AndyT Member Posts: 47
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    Hi Sharry,

    I had to look up ‘Inflammatory Osteoarthritis’ because I have not heard of that particular one before. What problem you have with your hands, is it swelling/pain/loss of range of movement etc?

    I’m 42 and have had finger range of movement problems for the last 18 months ,which has recently become swelling in all the fingers, pain in the thumbs, wrists and gradually the forearms. Like you, healthy busy and very active before this. I’ve seen a NHS Rheumatologist twice but so far the xrays/scans/bloods have not shed any light. Have another hand & wrist US scan in two weeks, and if anything shows on that then possibly some further tests.

    I really hope that your treatments are going to improve things for you. Have they given you advice on how to protect the joints in your hands/wrists from damage?

    Like you I struggle with kitchen tasks and housework, I assumed that with swelling and pain there would be damage if I carried on like before, so I have come up with ways of avoiding heavy strain on the fingers, like lifting objects with my forearms, having the things I need easily accessible, some kitchen aids for can/jar opening etc, and most importantly asking my partner and children for help.

    Also keep researching for information on your condition, there’s hopefully lots out there - it can sometimes take a long time to find something new or a different study or personal experiences/solutions, but persevere with it.

    Andy

  • Sharryaudrey
    Sharryaudrey Member Posts: 12
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    Hi Andy, I really appreciate you taking the time to write to me. Yes, the rheum did do through preservation of the joints, careful lifting, gentle exercise, taking anti-inflammatories and pacing.

    My first symptom was pain in both my wrists, thought it was a strain. This progressed in less than a month to pain in both thumb joints, visible swelling and tenderness in all my middle knuckles and some of my end knuckles near the fingertips. The large knuckle that joins the hand is fine. The rheumatologist says she's sure it's OA as the swelling is hard and bony, there is little or no fluid or bogginess to the swelling. She feels it is the inflammatory type as it came on so suddenly, not like the wear and tear type. She says menopause can be a risk factor for developing this, among other things I guess. My scans, Xrays and bloods are also all fine. Slight increase in ESR only.

    Do these symptoms ring a bell with you? Can I ask if your symptoms are gradually getting worse with time? It's a terrifying thought that it's progressing so rapidly for me and so I think I expect to be completely dependent for my family for most things in a few months time. Has anything worked to help you on bad days?

    I'd love to hear how your tests are going and if they are proposing any treatments for you.

    I had to look up inflammatory OA too, it seems synonymous with 'erosive OA' on the web which is a scary thought. I really hope that not all inflammatory OA leads to erosive OA.

    Thanks again

    x

    Sharry

  • frogmorton
    frogmorton Member Posts: 29,545
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    Hi Sharry

    I know what you mean the unknown is far more scary than what you know and having some idea of what the future might/could hold. Many of us go for years waiting for a diagnosis a sort of suck it and see approach as one of your medics favours.

    I would be very surprised if the steroids do not show some improvement for you in your joints albeit temporary.

    Have you seen this thread (short one)

    or this one:


    or this one:


    You might already have dug them out yourself through the search button as i did.

    My advice for now is to keep taking the tablets and keep getting sensibly informed. To try not to annoy your family and friends toooooo much by talking about nothing else (I did this😳) talk to us instead! make sure you look after yourself, eat well, exercise sensibly and get enough sleep.

    Hopefully your response to treatments and time will make the picture clearer ((()))

    Take care

    Toni x

  • AndyT
    AndyT Member Posts: 47
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    Hi Sharry,

    When your Rheumatologist said she is sure that it’s OA as the swelling is hard and bony, was that based on a physical exam only? Were the xray/scans done at an earlier time? I’d expect that any OA would show clearly on xray, perhaps they need to be done again if the progression has been fast?

    As my previous xray/ultrasound scans have a showed nothing, I am considering an MRI scan, as I believe it can detect early signs of RA and show much more detail than Ultrasound.

    My symptoms are a little different as I have full finger swelling. Some pain in the middle and end finger joints when squeezed. It came on suddenly but it has been different fingers over the last 18-24 months and has come and gone before, but gradually affected more fingers. I didn’t get any warning signs of joint pain or stiffness, just sudden inflammation, then pain after the swelling had subsided, with restricted bending. Also seem to have hand circulation issues, Raynauds like symptoms when cold, and one hand far hotter than the other when too warm.

    It’s hard to say what worked, last May my right hand started with all the issues above. A month on Naproxen reduced the swelling somewhat by the end of the course. I started eating an anti inflammatory diet and no gluten. After a couple of months the symptoms did clear up in the main, but then I got sloppy with my diet towards the end of the year, leaned on ibuprofen, now things are at their worst since Xmas. It’s hard to say whether the diet change brought it back, or if it was coincidence. GP gave me Naproxen again for a month but it did absolutely nothing this time, except giving me stomach pain like I’ve never experienced. Now completely avoiding NSAID’s to get my gut health back (using Curcumin instead), I am back on an anti inflammatory diet with no gluten or dairy - time will tell.

    When I’ve had a US scan in two weeks time, my Rheumatologist’s plan is to (depending on scan outcome) send me for nail fold capillaroscopy, thermography, and test for RNA polymerase 3 (I think these are tests to rule out for Scleroderma). They never mentioned the possibility of any seronegative options.

    Sorry this was so long, hope you get some more clarity on your problems, keep us posted on any developments.

    andy x

  • Sharryaudrey
    Sharryaudrey Member Posts: 12
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    Hi Andy,

    No worries, I enjoy a long rant :)

    The hard and bony was via examination and then I was sent for an Xray on the same day which confirmed no soft tissue swelling or bony abnormalities. It was explained to me the 'hard swelling' is the synovium of the joint that is swollen hence the hardness. If it were a straight forward PsA or RA/Lupus swelling, they expect the synovial fluid to be inflammed too, hence the boggy sensation. They also mentioned that as my MCP joints are not affected (other than the thumbs), it is more OA than any other inflammatory condition. I hope that makes sense. I have the benefit of being in the medical profession and my very good friend is a rheumatologist but practices in another country so I can bounce things off him.

    As my symptoms only started in January, I wouldn't expect any bony problems on Xray...yet. This is the characteristic of the inflammatory OA so it seems, initial xrays are normal cos everthing has been normal until the rapid onset and so they will monitor the xrays over the next few months/years. My swelling and pain unlike yours is constant, there is no change on a day to day basis but the pain can get worse as I use the hand more. The other odd thing is that the most swollen joints are not as sore as some of the less swollen ones. I feel it is gradually getting worse as more joints are being involved but I am learning to work around it with all the advice from this forum.

    Yours does sound more of a systemic inflammatory thing with the coming and going of symptoms in different joints hence they are looking at unique types of tests. Your Rheumatologist sounds really thorough, stick with them! I'd say they are slightly baffled too hence the arsenal of tests.

    It's really interesting to know that diet can affect symptoms for so many. I might start looking at anti-inflammatory diets. I got some curcumin tabs from Boots yesterday, will see how they go. I had a night out two weeks ago and had a bit too much to drink and felt the fingers suffered in the next few days, great..another enjoyment gone, haha.

    Sharry

  • Sharryaudrey
    Sharryaudrey Member Posts: 12
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    Hi Toni, you're so good for looking up the threads for similar diagnoses for me. I have read them. You're right about the not moaning to friends or family too much. At the moment, I have only told my poor suffering husband. He's great, and I try not to moan too much to him. In a sense, I think the moaning is worse than the not being able to do chores, haha.

    I'm going to try to adopt a better outlook on things and look after my health, re-evaluate diets and move more. Stick with the pills and hope for the best!

    I think the steroids are helping but I know it can't be a long lived benefit so I'll probably hit another slump when I come off it in a few weeks, yikes.

    Sharry

  • psimmonds
    psimmonds Member Posts: 2
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    Sharryaudrey I feel your pain too. I ignored my symptoms for about 3 or 4 years putting it down to an early menopause at the age of 42. It was getting so bad I even had to have my wedding ring cut off. I went to my doctors and was originally told it was likely to be peri menopause and was advised to take HRT to help with the symptoms. It did help with the hot flushes and night sweats and I had no side effects from taking HRT but after nearly 3 years taking it my painful joints and swelling did not subside. Eventually my GP took some blood and discovered I had a high ESR level 42. I was then given an anti inflammatory Naproxen and was on the max level for 3 years but it was giving me really bad stomach cramps and bloating. I was then given Omeprazole to take with the Naproxen and was also referred to a Rheumatologist, but this had taken more than 6 years! The Rheumatologist took xrays and confirmed that I had Osteoarthritis in my hands, feet, shoulders and my lower back and he changed my medication to Etodolac which has been much kinder on my stomach. In the last 8 years I have also taken Hydroxychloroquine for a couple of years which did not really help and I was also concerned with the related side effects of long term use. So it was decided to stop taking this and more blood tests revealed it was not actually helping much anyway. I have in the last 3 years been diagnosed with Psoriatic arthritis now too and have been taking Sulphasalazine for over 2 years. Sleeping is a nightmare, there is not a night I do not get woken by the pain, I also take Sumatriptan 20/30mg at night to help me relax and sleep.

    I have good days and bad days with the pain and swelling but I still won't take pain killers as I am a carer for my husband who is 71 and has various medical conditions including heart failure,kidney disease and Osteoporosis of the spine and hips.

    No one sees the pain and people just have no idea what Arthritis means for daily life even my own family think that it is not a big deal!

  • Brynmor
    Brynmor Member Posts: 1,755
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    Hi @psimmonds welcome to the Online Community.

    I understand you now have a diagnosis of osteoarthritis in many joints and also psoriatic arthritis. Strong pain makes a full night's sleep difficult. You have to take various medications and are a carer for your husband.

    As we all know, many people do not understand the pain levels that arthritis can inflict and do not understand how exhausting it can be. There are some good suggestions on our web site for helping to manage pain:

    with this section also including information on improving quality of sleep:

    All best wishes

    Brynmor