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Seronegative Inflammatory Arthritis

Julie001Julie001 Posts: 6
edited 29. Oct 2012, 19:09 in Living with Arthritis archive
Hi all, I am new.
I am Julie, 40 years old. I am married with 2 boys. I was diagnosed with seronegative inflammatory arthritis in April after it taking just over a year to get officially diagnosed.
I have it mainly in hands, wrists, fingers, feet ankles, shoulders and elbows. I also suffer from disc degeneration in my spine.I have lost 4 discs at lumbar level.
I have tried sulfasazaline, methotrexate and plaquenil in the year all leading up to my diagnosis as my blood CRP and ESR have continually been raised and still are today. i have had no break from the start form swelling, pain, and now the stiffness is getting worse.
All the DMARDS didnt agree with me, and My rheumy changed and she said to try methotraxate again and I begrudingly did, but could not cope with it at all. I took the bold move after an awful lot of consideration talking to hubby etc that I just wanted painkillers as DMARDS only supress the disease. I realized that none of the stopped it, it can not be cured, so i decided rather than put myself through any complications I wanted just pain relief. So I am currently on Buprenorphine patches to help control the pain.
I was told I am too young for biologics, so even though my rheumy wasnt happy she left me with an open appt as she said once you come off the steriods ( i wanted to wean myself off them) as they made me out lots weight on, that my symptoms would come back tenfold...so hence the open appt.
I am scared of the future and the pain getting even worse, but I feel I have this dautoimmune disease and it isnt going away.
Has anyone been through this, or made these choices, didnt get on with DMARDS offered etc? I feel so alone.
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Comments

  • LesBrownLesBrown Posts: 37
    edited 30. Nov -1, 00:00
    Hi Julie,I'm new here too so we can learn together.

    I too have some of the symptoms you have and after 10 yrs I'm still waiting for a diagnosis so you have done really well up to now.

    Medication is a hard thing to get right,it will chop and change and you may want to change because of changes in your circustances,thing is its not going to happen overnight but it will happen.

    seems a good crew on here and I'm sure someone much more informed will chime in.

    Les
  • valvalvalval Posts: 15,897
    edited 30. Nov -1, 00:00
    hi i only have inflimation arthiritis as a name still waiting and rhummy nurse says often never given name i am sorry meds did not help you they are to slow the dammage down that constant dammage can cause not just in joints but muscles as well do not hesitate to go back to rhummy and see what else they can give you if you find you need more help than pain meds. we all differ on how meds help and how arthiritis affects us welcome and feel free to join in where you want val
    val
  • stickywicketstickywicket Posts: 25,994 ✭✭✭
    edited 30. Nov -1, 00:00
    Hello Julie001. Welcome to the forum but I’m sorry you had to find us. There is no need to feel alone any more. We, on here, understand how frightening, painful and isolating arthritis can be and we’ll always be here to talk about it with you.

    I’m also sorry that the meds you’ve been offered haven’t helped. I’m wondering how the DMARDS ‘didn’t agree with‘ you. They can have side effects but often the worst of these can be overcome eg varying dosages of folic acid can often alleviate meth problems and taking it by injection rather than in pill form also helps a lot of people.

    I could be wrong but I think there are several people of your age and younger on these forums who are taking biologics. I hope they’ll soon turn up to give you their perspective on them.

    Steroids do help many of us but are not a good long-term solution for reasons other than weight gain. However, you are right when you say that this disease won’t just go away and taking nothing other than pain relief just won’t work. DMARDS and biologics may not hold it permanently at bay but they do hold it back a lot once you get the right combination for you. It’s a real shame that this can take a long time but, without them, you give the disease free rein. I know because they weren’t around when I was first diagnosed over 50 years ago.

    I suggest you read what others have to say, give our Helpline people a ring and have a good long chat with them about how you feel and then go back to your rheumatologist and decide together where you should go next.
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • julie47julie47 Posts: 6,142
    edited 30. Nov -1, 00:00
    Hi Julie

    Welcome to the forum from me too :D

    I am sorry to read that all the meds you are trying are having a reaction to you :(

    I hope that at your next consultation that they can come up with another solution. I hope that they decide to try the biologics as they have been quite successful with a few people on here if I remember rightly. I didn't think there was an age restriction on biologics. I just thought it was a matter of if so manyy other meds didn't work you would be asked to try the bios. (I am not sure though)

    I hope you find something soon and then you can start to feel much better

    Love Juliepf x
  • dreamdaisydreamdaisy Posts: 31,567 ✭✭✭
    edited 30. Nov -1, 00:00
    Hello, welcome to our creaky gang, it's lovely to meet you. You are absolutely right in that this auto-immune stuff is not going to go away, it will always be there biting, snapping, snarling and growling - even when one is on the meds. I'm taking humira, injected meth and sulphasalazine and yes, I still flare, the pain is there and has been for sixteen years. You get used to it.

    This is a vile illness and as such requires pretty vile meds. I am fortunate in that I don't get much in the way of side effects but I do know from reading on here that if one can find the courage to struggle on through the early stages the body can adjust to the meds and the arthritis can be subdued. I went without meds for seven years (not through choice, I was told for five years that nothing was wrong and then I lost another year being bounced between orthopaedics and rheumatology) and as a result my joint damage has led to pretty severe OA in my knees and ankles. The DMARDs are the first line of defence and one usually has to try a range before the 'holy grail' of an anti-TNF will be granted - age is not a barrier but cost may be. My hospital now routinely allows people onto those after just six months of 'failure' with meth etc, in my day it was years of trying different things to get nowhere! :lol: My auto-immune psoraitic arthritis is now mostly controlled but of course the meds do nothing for the OA. C'est la vie.

    Woman cannot live by pain dullers alone, you do need to be on something stronger to reduce the possibility of joint damage so I hope that once you feel armed with more information about options etc you return to your rheumatologist and tell her that it's time to try some other options. AC produce leaflets about the meds etc, and you may find ringing the Helpline of use as they are very good at talking one through the highs (and far more common lows) of these difficult diseases. I wish you well. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • frogmortonfrogmorton Posts: 26,211 ✭✭✭
    edited 30. Nov -1, 00:00
    Hi Julie

    A quick hello from me too :)

    Sorry to hear you are suffering and that the DMARDs haven't helped - or have they helped, but the side effects been too great?

    I don't know how old you are but didnt think age was a factor with anti tnf's rather that DMARDs had failed :?

    Anyway sorry this is short, but I am very pleased to meet you

    Love

    Toni xxx
    Love

    Toni xxx
  • Julie001Julie001 Posts: 6
    edited 30. Nov -1, 00:00
    Thank you everyone for your very insightful and caring replies. :)

    I may go back I will see how it goes as the thought of having the side effects all over again fill me with absolute dread. They have not helped me, but I know this can take a while to take effect.

    Even as I type, I am holding a pen to touch keyboard letters as I have such deep pain in knuckles on hand and soreness, and now feel stiffness creeping in...

    I will ask rheumy again about biologics again as I do not like the plaquenil, sulfazasline or mtx...I do not seem to be able to handle much!!

    I am currently taking 1mg prednisolone as I am slowly decreasing from 30mg daily, so I know thats why the pain has come back so badly. :(

    I look forward to chatting with you all & thank you for such a warm welcome.

    Hope everyone is having a good day x
  • salamandersalamander Posts: 2,028
    edited 30. Nov -1, 00:00
    Hi Julie, Like some of the others said, I didn't think age was a barrier to biologics. You could talk to the National Rheumatoid Arthritis Society - they have a helpline and really good with advice and it doesn't matter you are seroneg. I am too but they really helped me a lot to make decisions in the early days. Can't recommend them highly enough.

    I didn't get on with Dmards either. I got serious chest infections again and again and was moved onto anti tnfs. I have my problems with them but am much more mobile than I was and think they are worth the side effects.
  • Julie001Julie001 Posts: 6
    edited 30. Nov -1, 00:00
    Hi thanks for your reply. I have seronegative inflammatory arthritis...is this the same as rheumatoid then? I was told its an unbrella term, but yet they wanted to treat me with same DMARDS as they use for Rhuematoid.

    Am I being very stupid here? lol

    Thanks in advance :) x
  • dreamdaisydreamdaisy Posts: 31,567 ✭✭✭
    edited 30. Nov -1, 00:00
    They use the same meds for all forms of auto-immune inflammatory arthritis. When my label was changed from 'an inflammatory arthritis' to psoriatic arthritis that was the only alteration - the meds stayed exactly the same. Sero-negative means that rheumatoid factor (RF) is not present in your blood, but the raised inflammation markers show that there is summat up. My PsA is a sero-negative arthritis. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • salamandersalamander Posts: 2,028
    edited 30. Nov -1, 00:00
    No, you are being stupid, it is difficult to get your head around these things at first. I was diagnosed as sero-negative inflam arthritis like you to begin with as I didn't test postive for the rheumatoid factor. They then changed it to RA diagnosis after a year and a half. I believe my consultant was rather hoping I would go into remission and that it it was a one off. Sadly not the case.

    NRAS will talk to you happily even if you are sero neg. As DD says, the treatment is the same and they can talk you through all the pros and cons of various treatment. I found them useful.
    take care
  • tjt6768tjt6768 Posts: 12,170
    edited 30. Nov -1, 00:00
    Hi, just wanted to say welcome from me too..
    I'm another sero neg.. I've tried hydroxycloroquine, that did nowt other than make me lose weight, I'm currently on sulfasalazine that had helped a little more but again I've had quite a weight loss with them. I think that the rheumy is gonna put me on methotrexate next. I'm currently on a short term dose of steroids as I really needed help getting through the rough time I'm having right now..

    I really hope that you go back to your rheumy and can find a combination that works, taking the pain meds alone really won't help in the long term hun..

    The very best of luck, let us know how you go on.
    e050.gifMe-Tony
    n035.gifRa-1996 -2013 RIP...
    k040.gif
    Cleo - 1996 to 2011. RIP
  • dreamdaisydreamdaisy Posts: 31,567 ✭✭✭
    edited 30. Nov -1, 00:00
    I reckon salamander missed out the word 'not' in the first bit of her reply - you are most certainly not being stupid. The murky world of arthritis meds is baffling, confusing, far from entertaining and certainly flustering (is there such a word? If not there should be 'cos it's a good 'un!)

    Come and talk to us about it whenever you need, we have all been through a similar stage to you and we will do our best to help shift clear at least some of the confusion. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • salamandersalamander Posts: 2,028
    edited 30. Nov -1, 00:00
    omg! I am so sorry, I did miss out the word 'not'. Thank you for pointing that out DD. My only excuse is that I am unwell and typing on the laptop in bed, badly, obviously!
  • salamandersalamander Posts: 2,028
    edited 2. Sep 2012, 16:19
    Apologies for multiple posts, again a problem with my laptop trying to delete but unable to!
  • moderatormoderator Posts: 4,082 mod
    edited 30. Nov -1, 00:00
    Duplicate posts deleted!

    Take care
    Moderator
    YEH
  • salamandersalamander Posts: 2,028
    edited 30. Nov -1, 00:00
    Ta!
  • Jo90Jo90 Posts: 68
    edited 30. Nov -1, 00:00
    Hi Julie
    I too am sero neg, I'm plodding along with meds (plaquenil has some effect for me, but is by no means the silver bullet). I just wanted to say, please don't feel that you are alone. Not a chance - there are a lot of us out here. So many wise people have already indicated that there are different options you can look into and different permutations of the meds. I really hope you can get in touch with the people on the helplines to give you chance to explore what your side effects were and give you some suggestions that may work for you.
    Please take heart, we're here. Creaking maybe, but still here.
    Jo
    xx
  • Julie001Julie001 Posts: 6
    edited 30. Nov -1, 00:00
    Hi all, and thank you again for all the lovely supportive replies. I have decided to take up the offer of the open appointment my rheumy offered me back in June/July and go have a chat with her. I am currently trying to get through to the appointments to see when I can be seen next.

    I am a little concerned that my symptoms have never subsided, the inflammation has never gone or the swelling on hands, wrists, ankles feet, and the pain is there daily...does this mean I havent gone into remission yet? Does this indicate a more aggressive aspect of inflammatory arthritis?

    I have had all of this since March 2011...and no let up as yet whatsoever.

    I really appreciate you helping me and I hope that in return I can be supportive and help you too. What a lovely site!!

    Thanks again Julie xx
  • dreamdaisydreamdaisy Posts: 31,567 ✭✭✭
    edited 30. Nov -1, 00:00
    Arthritis causes pain and that pain rarely relents. It may dwindle from time to time but it's always there, twanging away in the background. It took me a few years to find the meds that reduced the inflammation but the pain was constant. I hope you can get an appointment sooner rather than later and let us know when it is so we can offer you support. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • salamandersalamander Posts: 2,028
    edited 30. Nov -1, 00:00
    Hi Julie,
    The pain can be helped a lot with the right meds. I find enbrel is helping quite a bit and am taking small dose of steroids. I may not be able to do everything I want but I get to do some of things some of the time and that's good enough for me right now. It seems to be quite a balancing act for a lot of us to get the right combo of drugs, one I am still trying to achieve.
  • tillytoptillytop Posts: 3,460
    edited 30. Nov -1, 00:00
    Hello Julie

    Sorry for coming in to this thread late - I did do a reply a few days ago and lost it (grrrrrr) and have only just managed to get back to try again.

    I am so sorry you are struggling so much - both with the arthritis and with the meds you have tried so far.

    The first thing which struck me about your post though was what you said about DMARDS only suppressing the arthritis which led to your intital decision to take only painkillers. But the sad reality of inflammatory arthritis is that, without the DMARDS - which are intended to slow down the activity of the disease - is that permanent joint damage is pretty much a certainty. I have had RA for 17 years now and I know that it is only thanks to the DMARDS (and now biologics) that I still have relatively minimal joint damage.

    I don't know how long you tried each of the DMARDS for - I ask this because sometimes initial side effects do ease once you get used to them - but I sympathise completely with your feelings about methotrexate because I just cannot tolerate it. I have tried it twice now, many years apart, for more than a year each time but it just does not agree with me - either in tablet or injected form. But although it seem to be very much the rheumatologists "drug of choice" these days, there are many, many other DMARDS available. I think I have taken most of them over the years, either on their own or in combination, and I can honestly say that only 2 of them have given me side effects I couldn't cope with. So when you do go back to the rheumatologist, it really would be worth discussing the options with him.

    As for the biologics - I was very distressed for you when you said that you had been told you were too young for biologics. I know that these drugs are expensive and therefore sometimes rationed by health authorities but I haven't heard before of age being a criteria for prescribing them. If I remember rightly I was in my 30s when I had my first biologic - I am now 45 and on my third one. The usual criteria for eligibility (for RA) is that you have to have tried so many DMARDS first (including methotrexate) for a reasonable length of time and to have a high DAS (disease activity score) despite taking them. You can read the guidelines in full if you type "NICE rhematoid arthritis" into Google, but be aware that these refer specifically to RA and if your consultant has given you a more general diagnosis, they may not apply. It might be something worth asking about though when you go.

    I know you are in a lot of pain at the moment but hopefully the rheumatologist will be able to work with you to find a combination of meds which can help to control the inflammation and lessen the resulting pain.

    Thinking of you.

    Tillyxxx
  • Julie001Julie001 Posts: 6
    edited 30. Nov -1, 00:00
    I don't think I have come fully to terms what this disease will actually end up doing to me...reading your posts, I have been ''woken up'' and I know this may sound silly but I am shocked really realizing that if i dont i will be crippled from joint destruction and the pain will be immense. Hope that this makes sense? (I am rambling through the tears - sorry lol)

    I am waiting to hear back from rheumy, so I will let you all know when I get my appt and definitely talk to her again, see what she can suggest.

    I am touched with the kindness everyone has shown me and I really appreciate it... Thankyou!!!!!!!! :)

    Thankyou also for taking the time to reply as I know you all have to deal with arthur on a daily basis too - bless you all xxxx

    Julie x
  • Jo90Jo90 Posts: 68
    edited 30. Nov -1, 00:00
    Hi Julie
    It is quite a challenge getting your head around the full implications of the disease potential - almost a second blow after the relief of getting a diagnosis. I know I struggled with it and have read that many others have too. Keep your chin up, fingers crossed you get a good outcome from your appointment and can get your meds sorted and don't look too far forward at the minute - you don't sound to be in the right frame of mind right now.
    ((Hugs)) and take care.

    Just a thought, the folk that are posting on here are those that are having a tough time managing their condition, there may well be others out there who are relatively under control and don't have the need to drop in here, so, perhaps we skew the view a little. It doesn't define you, it's something to adjust to. Keep your chin up.
    Jo
    xx
  • RallymadRallymad Posts: 84
    edited 30. Nov -1, 00:00
    Hi Julie
    Welcome. I too like you and others on here am sero negative. I was diagnosed just after my 30th birthday and 10 years later am not being given biologics, rheumy said that due to my age (and hopefully meaning that Id a long way to go :lol: ) was taking it slowly with the meds, I have had plaquinel also, stopped taking that due to major itching incident and now on sulfasalazine (up to 5 tablets daily :shock: ). I am having major probs with pain as take co-codamol 30/500 and they no longer work so good for me, we are all different, being the same would be boring. I think you should think about not taking any DMARDS as the long term damage is the problem. My hands, feet and hips are affected, having problems with my left shoulder also but rheumy thinks this could be osteo rather than RA. As you will have seen they are a really good bunch of folk on here and always someone willing to listen when all you want is a good moan. Take care and fingers crossed. xx
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