Is anyone else in a similar situation

DJB
DJB Member Posts: 5
edited 25. Jun 2014, 02:32 in Living with Arthritis archive
Hi - I'm new to this forum and generally to Arthritis.

I'm a 27 year old male, fairly active (well I attend the gym 3 times a week, or at least try). I've always struggled to get a diagnosis from my GP regarding my joints, in fact from the age of around 15/16 to when I turned 23, I was told I just had 'growing pains'. In the end after numerous appointments with my GP, I was eventually referred onto a Rheumatologist at my local hospital. They checked me over and said, that my blood tests looked fine and they couldn't work out what was wrong.

To give a very brief overview, I'll experience a flare up, maybe 3-4 times a month if it's quite bad. Each flare up lasts up to a few days. I was told to take Ibuprofen as and when needed. This would obviously reduce the swelling and would ease the pain.

When It came round to seeing the Dr and even the Rheumatologist, I would never have a flare up. Which made it almost impossible to get anyone to believe me. However, I was in luck, the Rheumatologist gave me their secretaries direct number and said to call them when I have a flare up and I'd been seen that day. It turns out 2 weeks later I did. I took myself over with a swollen finger joint (I mostly get flare ups in my fingers, both joints and the knuckle. I have however, experienced it in my knees), my finger was checked over and they confirmed that I do have some form of Arthritis. I was over the moon, finally, someone believed me!

My problem that I now have is I've been classified as having Arthritis with an unknown cause. I was put onto Hydroxychloroquine but I did experience a bad turn with these tablets, so I was taken off and put onto 600MG of Ibuprofen instead. I was on these tablets for 4 years or so. Last month I started to get an upset stomach and generally felt unwell after taking the ibuprofen & also noticed that it stopped being as effective in reducing the swelling. As I was told to contact my GP should this happen, I did so swiftly. I was seen and advised that I'll be taken off the Ibuprofen and put onto Naproxen 500MG to be taken twice a day.

I just wondered if anyone else was in a similar boat to me.

Dave

Comments

  • jen9432
    jen9432 Bots Posts: 37
    edited 30. Nov -1, 00:00
    Welcome Dave, sorry you have to be here, but I'm happy you finally got some answers, even though I'm sure you have more questions. Ibuprofen is hard on the stomach, I'm surprised you lasted 4 years before stomach symptoms. It is an acid and can really eat away the stomach lining. Be careful on naproxen as it is also an acid. I couldn't take either on a regular basis as they both really upset my tummy. There are lots of other meds out there if you have similar trouble on naproxen. I would, If I were you try to stay as healthy and strong as possible to help stabilize your joints and just to stay thin. Extra weight on the weight bearing joints is bad for arthritis sufferers. If you normally get it in your hands, I would suggest being careful if you are lifting weights. This is very hard on your hands, wrists and elbows. Good Luck.
  • jen9432
    jen9432 Bots Posts: 37
    edited 30. Nov -1, 00:00
    I forgot to say my arthritis was never fully understood either. After 1 year of suffering my specialist finally said that he thought I had pesticide poisoning. :shock: Some toxic substance attacked my joints, caused inflammation and was very painful. It eventually went away, thankfully. No one really knew what was happening to me, I know this is very frustrating, both to me and my doctors. As much as we know about our bodies, we don't know everything and sometimes doctors don't have all the anwers. Look after yourself and keep healthy. Good Luck.!
  • DebbieT
    DebbieT Member Posts: 1,033
    edited 30. Nov -1, 00:00
    Hello & welcome,

    I'm sorry uve been given the run around to get some sort of diagnosis, It's very common unfortunately!! :(

    I maybe completely wrong, it's not unusual :wink: I thought hydroxy was used for autoimmune types of arthritis ... Is this wot uve been told?? If so they really ought to have you on a disease modifying anti rheumatic drug (DMARD) such as methotrexate & not just anti inflammatories, they'll reduce the swelling but won't control the disease & it needs to be controlled to slow the damage it can cause!!

    Have you had blood tests for the Rheumatoid Factor? If they've come back negative it doesn't rule out other types of auto immune arthritis .... Mine is a form that's related to my chronic skin condition, Psoriasis, for instance.

    I have both Osteo Arthritis (OA) & Psoriatic Arthritis (PsA) so one is auto immune & the other isn't. OA can only be helped by pain meds really where as auto immune types can be helped, in theory, by different drugs.

    I hope uve been on a tummy protector such as Omeprazole?? If not you need to insist you're put on one asap, it's ure body n you need to be careful with it :D

    Good luck & keep us posted please.

    Xxx xxX
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello, it's nice to meet you but I am sorry you have had to find us. I used to be in your situation but, alas, no longer because I am eighteen years in. :lol:

    From what you have told us it would seem that you have some form of an auto-immune arthritis (of which there are around 200 kinds so tracking the culprit down can take some time). I know that PsA (psoriatic arthritis) is renowned for starting in the smaller joints but mine began in my left knee. Have you had your inflammation markers checked via a blood test? I ask because that was what eventually convinced my then rheumatologist that I had some form of auto-immune inflammatory arthritis. Another thing to take into account is whether other family members (no matter how remote to you) have similar troubles: arthritis runs in families but it can also start from nowhere. DD
  • Boomer13
    Boomer13 Member Posts: 1,931
    edited 30. Nov -1, 00:00
    Hi Dave;

    I have a similar history. I have had pain that localised to a wrist joint initially in 2005 after a wrist injury at work. I did everything to allow it to heal and when it did not I was fobbed off by doctors for several years until the pain became so excruciating I was off work. I then had most other joints and spine involved and, since I responded to prednisone, it was assumed I had an inflammatory arthritis. I've never had any markers raised in my bloodwork and it was only by response to prednisone that the inflammatory part was identified. A couple of years ago I developed a rash and biopsy showed it was psoriasis. So after all this time I had a diagnosis: psoriatic arthritis. Some people inconveniently develop the arthritis before the skin problem which can baffle doctors and leave the person in diagnostic limbo for long periods of time.

    Naproxen is a very good drug and, you likely know this but, it works best if you take it daily and, of course, with food.

    Take care,

    Anna
  • tkachev
    tkachev Member Posts: 8,332
    edited 30. Nov -1, 00:00
    My pain started with tennis elbow but as a gymnast I put it down to an injury. I never really got treatment, other than one cortisone injection in one elbow that made little difference. I found I could no longer swing on the bars or balance on my hands as the pain was dreadful, and the elbow bend became very severe. I could not straighten either elbow (still can't).

    8 years later I had a similar injury in a knee, from jumping on a trampoline, but It never recovered and I was finally diagnosed with full blow R.A.

    Various meds I've taken over the years have lost their effectiveness over time. I would think this is quite common as the body gets used to them.

    Ibuprofen should be taken with a stomach protector and my rheummy took me off Ibuprofen after a few years because of the effect they can have on the stomach.

    Hope this helps
    Elizabeth
  • DJB
    DJB Member Posts: 5
    edited 30. Nov -1, 00:00
    Hello again

    Thank you for all the responses and such a warm welcome. It's nice to hear that other people have experienced similar issues as I.

    I have been prescribed Lansoprazole to take with my Naproxen tablets. I've also just called the 111 telephone number, unfortunately, I have been experiencing a flare up for the past two days and the Naproxen hasn't been as effective as I hoped, in fact it hasn't appeared to have done anything. I was taking Paracetamol as often as I could to cope yesterday. Today however, I'm experiencing pain in my lower back. So I've decided to see what the GP has to say as i'm on holiday next week (not abroad unfortunately), I don't want to be in pain with medication that doesn't work. I'll post what they say anyway.

    In regards to going onto Methotrexate, I was told that at the moment, the GP wants to hold off putting me onto any DMARD until my flare ups are more frequent/permanent. To be honest, I've been fobbed off by my GP so much, I just want any medication that takes the pain away. Ideally, I want to prevent the flare ups altogether, but whether or not you need a 100% diagnosed condition i.e. you have RA or PsA etc, before they can put you onto a specific med i'm not too sure..

    I do have trouble with my knees.. I've noticed this at the gym but more recently just in general when walking around. When at the gym and I'm running on the treadmill, it feels like my knee is going to give way. I can't put much weight on it at this point, I can walk though (just). I told the GP and they put pressure on my knee, moving it/placing pressure from all different angles but just said that they're not too sure but think it's mechanical, as in the way that I run. Well not to be funny, but i've always ran the same way, and it comes and goes. I'd like to point out it's not every time that I get onto the treadmill that this happens, however, recently in the past say 4 months, it's happened every time. Either way, I've been recommended physio, so I'm just waiting for the letter to come through the post.

    All the best and take care, Dave.
  • barbara12
    barbara12 Member Posts: 21,257
    edited 30. Nov -1, 00:00
    Hello Dave and welcome to the forum
    I only realised how complex Arthritis is since coming on the forum 4 yesrs ago ..I am in the process of finding out what kind I have after 5 years of joint pain...they think the growing pain I had when young I am 64...was junior arthritis... :shock: you could ask for MRIs they will show up any inflammation and joint damaged..also make sure you take stomach protectors ..I cant take naproxin because of kidneys probs but I do miss them..I do hope you get some answers very soon it does make such a difference...good luck
  • Boomer13
    Boomer13 Member Posts: 1,931
    edited 30. Nov -1, 00:00
    Dave, I started DMARD therapy before I had a specific inflammatory arthritis diagnosed. Pain control is important but you also need the disease itself under control with DMARDS, antinflammatories, etc. It's the inflammation that creates the conditions for proteolytic compounds to be released that soften, thin and weaken cartilage ultimately causing joint damage.

    Anna
  • stickywicket
    stickywicket Member Posts: 26,707
    edited 30. Nov -1, 00:00
    Hello and welcome from me too, Dave.

    'Arthritis with an unknown cause'? I think all of us auto-immuners and many OAers have that too. OA can set in round a previous injury but many get it with no previous injury at all. As for the auto-immune forms (I have RA) often there's a genetic component (Though not, I think, in my case) but, even so, there is usually some unknown environmental factor too. It's a complicated business.

    As regards DMARDS, hydroxychloroquine is a mild one. However, whether you are prescribed any DMARD or not is not up to your GP but your rheumatologist. GPs can't prescribe them except as instructed by rheumatologists. DMARDS do not, however, take the pain away. Their role is to dampen down the disease. That will help the pain but not eliminate it. Anyone with arthritis of any kind who is searching for a pain-free life is destined for disappointment and, sometimes, scary amounts of paindullers. Flares are also a fact of auto-immune arthritic life. I've never had them as frequently as you but I've also never found that they went within days – more like weeks or months.

    I think physio is an excellent plan. You might be given additional exercises to those you do in the gym but you might also be told to hold off on some. I find physio exercises a huge help and I hope you do too.
  • stickywicket
    stickywicket Member Posts: 26,707
    edited 30. Nov -1, 00:00
    How are you today, Dave?
  • DebbieT
    DebbieT Member Posts: 1,033
    edited 30. Nov -1, 00:00
    Hi,

    I'm so glad I don't have your GP!!! It sounds like he wants to 'hold off' to save money or something coz it certainly isn't for the benefit of you, his patient!!! :shock: No you don't need a definitive diagnosis, it's autoimmune & they're all treated with the same meds. I'd honestly contact ure Rheumy & say uve decided ud like to start methotrexate (mtx) asap, could he arrange that please? :wink:

    SW is correct ... Don't chase being pain free, I'm afraid, unless you want to live like a doped up zombie, it's unrealistic. Aim for bearable coz that is achievable :wink: Most of us then have wot we call top up meds or the big guns for wen we're in a flare. Pain management is key ... Stay in front of ure pain coz it's really hard to catch up to it once it's bad. If you can get on a pain management course or living with arthritis it will give you a much better idea of how to deal with & understand pain. Obviously I'm not a Dr but this is wot I've learned, you'd have to discuss these things with a Dr ureself ..... Things such as paracetamol are best utilised if they're taken regularly everyday. Naproxen comes in different doses & the slow release ones often have a better effect. I have found slow release medications suit me better as I don't like feeling spaced out but many do not!!

    It may be worth switching from the treadmill to the pool for a while. If ure knees are protesting then buoyancy & less impact will benefit it. I think discussing ure whole workout routine with the physio will be worthwhile.

    Have you had any xrays done at all?? If not then perhaps it's worth asking for the areas ure most concerned about to be done?
  • DJB
    DJB Member Posts: 5
    edited 30. Nov -1, 00:00
    That's good to know Anna, I'll press to get on a DMARD.

    Hi Debbie, yeah I've had an x-ray on one of my hands, no damage was found thankfully. I've decided to do a bit more swimming, I'm fact as I'm on holiday at the moment (Mon-Fri), I'm going swimming everyday.

    After going to see the out of hours GP, I was out on codine for the pain and they've written a letter/e-mail to my GP to advise they speak to a rheumy to discuss changing my meds.

    I hope you're all keeping well :)

    Dave
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    As we've said only a rheumatologist can prescribe DMARDs so seeing one of those is your priority. The GP can prescribe NSAIDs (non-steroidal anti-inflammatory drugs) but not the stronger ones. DD

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