Hi, was wondering if anyone can help me. I've not been well for 5yrs nearly 6 now (ever since I had my son). Rheumy suspects undifferentiated connective tissue disease. I think it's more likely to be RA or polymyalgia arthritis. All my bloods are negative for anything although I was low in vit d, frolic acid, iron and b12 at 1 point, all corrected now.

My questions are how to control the pain, what meds are you on and how do they work for you, what's the frequency in flares and pain.

I take ibroprufen and cocodomal but still in unbearable pain, should I be taking ibroprufen on a daily schedule to prevent pain as currently I wait till I'm in pain and take it.

Has anyone found any diets, supplements that make a difference. I've kept a food diary but can't find any links. I have the odd few good days here and there but there is no pattern I can see.

He did prescribe me plaquenil which I took but when over the phone I got my blood results which were all clear I decided it wasn't worth the risk and took myself off it. I have since tried to get another prescription from my g.p as its worse now but he said no, need to see rheumy again as it's a serous drug and I need liver function tests etc which I was never given originally and it scared me even more.

Also is it normal for your joints to click nearly everyone u move and not to display redness. My fingers get fat but not what I would call hot red swelling. More like fluid retention. My throat also gets so regularly sore and painful. My gp felt throat the other day and said my thyroid feels ok and unless it's massive it wouldn't cause pain.

Any advice would be appreciated as im so tired or being tired and sick of being in agony. I'm also very scared to take medications, I've been convincing myself for last few years that i have something that just needs antibiotics or a surgery and it would be cured. I'm just finally facing up to the fact that it's something I can't stop.

14 Replies

  • Hi - sorry you are having so much ill health with your autoimmune problems. Hydroxichloraquine/ Plaquenil isn't such a heavy duty drug as the others and, although it is good to have a full blood count before starting any new drug for UCTD/ RA it isn't actually necessary before you start on this particular drug because it doesn't affect your liver. In fact unlike other DMARDs you don't have to have regular blood monitoring on Hydroxy at all.

    What you do need to have is an eye test because very rarely this DMARD can cause eye problems. My GP prescribed it to me at my rheumy's instructions and gave me a basic eye test before I started - advising me to have yearly tests at the optician's.

    I'm in the opposite boat to you in that I have a diagnosis of RA but think what I actually have is UTCD - which I'm told often has a better outcome for many.

    Mind you I have been told by a professor of connective tissue diseases that mine was a robust diagnosis of RA because I presented with text book synovial swelling in both hands and feet. By this I mean swollen, hot, bruised looking MCP and PIP joints (middle finger joints and knuckles). I believe this looks different to a rheumy to fluid retention/ sausage fingers that you describe.

    If you are in a lot of pain I would be very tempted to try Hydroxy because many people with UCTD, Sjogren's and Lupus find it highly effective.

    We all fear taking strong drugs of course but I think it is a case of needs must with rheumatic conditions. So I would ask your GP to make contact with your rheumy again so that you can get onto a disease modifying anti rheumatic drug. A course of steroids may help you in the short term while you wait.

  • Hiya Charlie. It doesn't sound as though you're doing too well at the mo & my immediate thought would be to push your GP for referral back to a Rheumy. Obviously we can't diagnose or suggest what to take meds wise but I do recognize your symptoms & it's sounding as though it's possible your UTCD may have progressed to one of the more specific auto immune conditions. You don't say when you received your diagnosis so it's difficult to help but if it's not recently you need to be checked out quickly as damage could be caused the longer it's left untreated

    I don't understand why you didn't have a follow up appointment or an pre check eye test whilst you were on Plaquenil (hydroxychloroquine HCQ), unless your diagnosis is recent, but fear you may not have helped things by taking the decision to withdraw it being a DMARD & prescribed in an attempt to suppress your immune system. Clear bloods can be misinterpreted as thinking nothing's wrong but it doesn't mean there's nothing going on, which there clearly is & the reason it was prescribed.

    Your GP is right in not represcribing HCQ without the say so of a Rheumy but really his next step should be referring you to have a review & further tests to see just what's going on. Unless you're fortunate to have a GP who has some knowledge about autoimmune diseases as I did non classic symptoms can be overlooked & maybe yours doesn't recognise yours.

    I hope this helps & you get the help you need.

  • Hi Charlie,

    it took me quite a while to realise that inflammatory arthritis is not to be messed with. It can do a lot of damage and the whole point of drug therapy is to control the disease and hence prevent joint damage, reduce the adverse effect of the disease on overall health and reduce pain.

    The best way to address pain is to get your disease back under control I think. Blood tests do not mean much. I have Psoriatic Arthritis (worth checking out as you have swollen fingers) and many, many people with PsA never show anything in blood tests other than perhaps high inflammation levels initially.

    Your final sentence really said it all. If you have a form of inflammatory arthritis then it's autoimmune - the product of a malfunctioning immune system. Healthy living is a vital weapon in our armoury I think, but I don't see how diet etc. can touch the underlying disease process.

    I've been through (nearly) all the DMARDs and am now on a biologic. Contrary to what you might think I've never been a pill-popper. I was in a bad way at first and although I was eager to take any drug that might help me, I assumed there'd be quite a pay back in terms of side effects or perhaps just feeling 'grey' all the time. The reality has been very different.

    It takes courage to face up to what's really happening as you are doing. If you can find a really excellent rheumatologist and get on a carefully considered treatment plan I reckon the chances are you'll never look back. Blimey! I make it sound easy! And it never is quite that simple but you know that already.

  • I've been taking Hydroxy for 2 years alogside another DMARD and found it's well worth persevering with this regime.Your mention of sore throats jumped out at me, as I too suffered sore throats on a daily basis before being diagnosed and started on treatment.Always came on in the evening and they were really painful! I haven't had any recurrence of these since the meds kicked in.

  • I have UMCTD as a temporary diagnosis, confirmed arthritis but not a specific kind right now. I'm 2 years into treatment now, planquenil i have taken from day one and iv never encountered any side effects from it. It helps me lots! In fact they have doubled mine to try help my joints extra as they are getting some bad damage as i get further into having all this crap. My suggestion would honestly be to not be frightened of taking these meds, they are designed to help you, are fully tested and approved. Get back on with rheumatology love its the best place for you, your never going to get any answers if you don't do the things they suggest. Never ever take yourself off a medication without strict advice from your specialist. If you get any side effects that you feel you cant cope with they will wean you off at your request. I take dihydrocodein and oramorph for the pain but i would suggest trying a low grade painkiller before any of that, like solpadol. If you get head first into harder stuff and they don't work then all the lower stuff wont touch the sides. I started with solpadol then went to tramadol. After that didn't work i stupidly went to my gp who said there was nothing other than morphine to go to next, he was wrong to do that, there are plenty of other options. Speak to your rheumatologist please love, this condition could turn nasty fast in sure you don't want to be caught with only a gp to try help, they often have no clue what to do for you, they try their best but can only treat what they know and gps arnt medically trained to deal in specialist care. You wouldn't go to a first aider for surgery! I like my gp but they just arnt equipped to deal with my serious problems. Hope this helps love. If you need someone to talk to about having UMCTD then you can send me a message and ill happily help where i can.

    x loubie x

  • Fwiw, I've been taking a heavy duty anti-inflammatory painkiller daily - Meloxicam. I tried messing around with my dose and tried to "put up with it" and focus on a healing diet, but learned the hard way that, beneficial or not, the diet approach was not working quickly enough. I'm taking MTX, Humira and Hydroxy (Plaquenil), and my CRP has finally gotten down, the joints in my hands are still swollen but no longer "raging." On a temporary basis, the best decision I made was to full on commit to the anti-inflammatory/pain med, because when you're in constant pain, your world is too small and you can't think properly. At least, that's been my experience. It was really hard for me to start taking the Plaquenil and MTX; I feel like rheumatologists are too quick with the Rx pad. In the end though, I think we need to get our disease under control before we start experimenting and testing limits. for the record, I didn't get my eyes tested before starting Plaquenil, it wasn't brought up.

  • Wow, thank you everyone so much for all your replies, i really appreciate it. I am planning to get on the plaquenil as soon as possible, thats why i went to the gp the other day but despite having a letter in front of him from the rheumy saying that was his suggestion he said protocol wont allow him to give me my first script, I actually did get a script from the rheumy or his assistant actually i didnt realise it was a hospital only script and couldnt be filled at my local chemist, the hospital is miles away from where i live and with my hesitations coupled with the fact that i didnt get to see him i havent had the inclination to drive all that way to fill it. I thought GP would just fill it instead but it seems not. As i didnt get to see him and it was a flustered assistant that had to go and check with him and get his instructions from another room I didnt feel comfortable with taking them either.

    A few things i dont understand if is normal or not is:

    .Now and again i get good days where i feel 80% normal (maybe 2-5 a month)

    . The steroid shot he gave me last year didnt make me feel amazing, i did have a better run of things for a month or so, basically more good days but i was expecting it to do nothing or if it was RA make me feel like a teenager again!

    . ANA has gone from positive a few times to negative last year when he tested me (straight after steroid shot but i doubt it works that quickly to skew the results)

    . I NEVER get sick although im always sick if that makes sense, im sure i could be in a room with the ebola virus and not catch it however i always feel like i have the flu. I was under the impression with autoimmune disease people got everything going, my mum has some type of inflammatory arthritis amongst other things and shes constantly ill with whatever is going round.

    .Although everything hurst its not massively red and inflamed, it hurts, feels hard to bend and fat but it doesnt look angry swollen like when something is infected.

    Anyway, thank you all, i really appreciate your input and help, im going to drive and get the prescription filled if i still can and try and push for another appointment with the rheumy, ill also ask him for another steroid shot as i want some relief for another month or 2.

  • I think it is 'normal' to have some good days, thank goodness! In the midst of my first big flare, when I couldn't walk, I suddenly had one, just one, day when my joints eased up and I was able to go for a (rather slow)walk by the river. It was great but did my head in! And I still have days when I'm decidedly extra perky. I think this holds true with or without meds.

    I don't know about the ANA but steroid shots are fairly powerful things. I've had one in my backside that did not make much difference and another more recently that was like a magic bullet, very confusing!

    As for not getting sick, well our immune systems are basically over-active, though I believe that's a simplification and that it is a little more complex than that. I rarely get sick too. And as for joints - I have / have had a good selection of different varieties - usually not especially red though and warm at times rather than hot. I think hard to bend, fat & painful = swollen!

    I think sometimes we expect very clear cut, agonising, in-your-face symptoms. I've had rheumys really lay it on the line with me to get real. I do winge, I do moan, I do struggle but at the same time I often think there's not really much wrong with me. I believe it's called denial though the disease takes a while to get to grips with I suppose.

  • Hi Postle2

    Thank you for your reply, the steroid shot i had was in my butt and i was waiting for a miraculous recovery but i didnt get it, i did however have far more better days for a month or so which was nice. I hope if i can get another shot it will be a magic bullet. My joints feel hot on the inside but to touch i dont think they are massively hot, certainly stiff and fat feeling, my rings certainly dont want to come off some days. You are correct, i definitely expect clear cut agonising symptoms, even though i know theres something wrong and some days i wish a truck could run over me just to interupt the pain i have, i second guess myself as i expect my joint should swell to the size of a football and turn bright red or i should grow a second head or something! I think you maybe right about the denial. Ive tried a few things like cutting out dairy/gluten etc and i think its more about regaining control than actually thinking it will work.

  • That is so true about control. I think inflammatory arthritis requires a healthy diet, as much exercise, stretching etc. as possible, regular 8 hours sleep if possible .... boy oh boy it's a fussy disease! But there again doing what we can to help ourselves does give a sense of control so it is, sort of, a win win situation. But I've accepted that it runs deep .... it's not a passing infection or something, it's serious and when we get on the right drugs - and there is an element of trial & error - then that's real control.

  • Hello, I agree with nomoreheels about being referred back to the rheumatologist. It's unclear whether you had any other diagnostic tests ie x-ray, ultrasound, MRI apart from the blood tests? What you say about feeling like you have the flu all the time is something I can relate to because my joints feel heavy and stiff, combined with extreme fatigue, this is a hallmark of having RA. Another thing that stood out for me was your description of your joints clicking. It sounds a bit like joint hypermobility: I have clicking joints as part of a separate condition (Ehlers-Danlos Syndrome, hypermobility type) rather than RA. I've had the clicky joints all my life, esp bad when I move, (the left hip joint cracks a lot when I'm walking for example) and other joints such as the thumbs dislocate, this has all been going on since childhood but was only diagnosed with RA four years ago. The clicking has got worse since having RA though. Just sharing experience in case it's helpful - main thing is to get back to see a specialist asap. Good luck.

  • Hi Charlie, in reply to your last couple of questions, I was always very proud of the fact I never seemed to catch the bugs that were going around and put it down to having a brilliant immune system. When the RA started to take hold though I found that I felt ill a lot, tired, rundown and kept getting cold sores. My joints like yours hurt like hell but don't usually get hot and red. When things are really bad like now I do get swelling in some of the joints but not all. x

  • Hi Paulywoo,

    Im sorry to hear your going through a bad time at the moment, i hope it gets better quickly. Ive always had a fairly good immune system but i certainly got more colds when i was what id class normal. Ever since things have got super bad i dont catch things or perhaps my nearly continuos feeling of the flu mask it, im not sure.

  • Hi Francherry,

    Thank you for telling me that, i never had any clicks before having my son after that things seemed to pop and click, my neck, knees, ankle etc . Ive read the hypermobility score chart thing and i dont mark all that highly. I can't pull my thumb back to my wrist etc nor am i tall and thin unfortunately!!. When i mention clicking and popping drs always just say its gas bubbles but for me its always on a bad day and i dont have so much popping on good days. I have had an ray of my knee and the person said that it didn't look like i had arthritis, i dont know what kind she was talking about as at that time i dint even know an xray could see that. Ive also had mri and xray of neck and that i was told was fine except dehydration of a disc. They were looking for cervical spondylosis before i ever saw the rheumy because id been complaining of neck pain for a long time. A neck dr told me i had limited mobility in my neck and sent for physio but when i did physio moves or they touched me things would get worse, i also saw a few osteopaths and boy i wish i could take that back, they made me much worse.

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