Frightened :(

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Lou001
Lou001 Member Posts: 51
edited 28. Feb 2015, 04:33 in Living with Arthritis archive
Today I told myself I would start my sulfasalazine.
I was prescribed it a few moths back for PsA, but so far have been too scared to take it (anxiety - currently having CBT)

I had the tablet in my hand ready to take but I just couldn't take it, I was petrified.

I know that if I don't start this medication that my joints will only get worse.
I was diagnosed 3 years ago and have struggled to start on meds from the beginning.
It's only over the past 6 months that the severity of my arthritis has become a reality to me, and I now understand how Inportant the medication is.

I really want to start a family at somepoint and I know this will not be possible whilst my PsA isn't under control.

Yet despite all of this I am still to scared to get started on the meds.
I feel so down about all of this. I know most people would at least give them a try, I can't even seem to do that! :(

Comments

  • As5567
    As5567 Member Posts: 665
    edited 30. Nov -1, 00:00
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    How are you with injections if they are given by a nurse?

    I'm no doctor but it may be worth talking to your rheumatolgist, letting them know about your troubles and asking would it be possible to swap over to injectable methotrexate. It would be a small injection under the skin once per week.

    Or even possibly methotrexate tablets that are taken only once per week, if I remember correctly sulfazlazine is taken daily?
  • stickywicket
    stickywicket Member Posts: 27,730
    edited 30. Nov -1, 00:00
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    I'm so sorry you have this dilemma. You are having your CBT which I hope will help but, in the meantime, I guess it's tricky. When faced with something I really fear, or desperately don't want to do, I do it as quickly as possible to get it over with and save myself the agonising. In the case of meds, I'd try to minimise the possibility of side-effects by not taking others at the same time and ensuring I was eating and drinking healthily etc. I find the more I do things that scare me the easier the next one becomes. (And the more smug and self-satisfied I become :lol: )
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • Lou001
    Lou001 Member Posts: 51
    edited 30. Nov -1, 00:00
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    Injections don't bother me, I had a steroid injection on Friday, the problem with Methotrexate is that I want to start a family and that wont be suitable for me to take.
    I think I would be more nervous to take Methotrexate than Sulfasalazine anyway.

    Its not the actual taking of the tablet that I'm scared of, its the side effects and the thought of it lowering my immune system. :(
    I've had endless conversations with my Rheumatologist and the nurses but nothing seems to reassure me.

    I regret googling, I've read horror stories of people having allergic reactions and I really have scared myself silly.

    I really Envy people that have the courage to pick up the tablets and take them - I don't want to live a life in pain but my overly anxious mind seems to be taking control right now. ** SIGH** :cry:
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    You have PsA due to an over-active immune system so the only way to slow its progress is to take the meds to shut it down. Thousands of us do, thousands of us get on perfectly OK, and more than a few thousand take more than just sulph, but until you are able to process your thoughts in a more positive way you are stymied. The answer lies within you - I hope you can find it. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • kat
    kat Member Posts: 23
    edited 30. Nov -1, 00:00
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    Hi,

    I have been on sulph for over 4 years and not had any side effects (but everyone is different.) I just wanted to let you know that, like you i wanted to start a family and found sulph the best option. I gave birth to a perfectly healthy, beautiful daughter in nov 14 whilst on sulph and had no problems. Good luck with what ever you choose to do :D x
  • Lou001
    Lou001 Member Posts: 51
    edited 30. Nov -1, 00:00
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    Congratulations on the birth of your baby girl Kat :)

    It's good to hear from people who are taking the medication, thanks for replying! :)

    What dose do you take? I will be taking 4 a day. Have you found that it affects your immune system much, like are you more prone to illnesses etc since being on them?

    I really want to get started, and I know I just need to bite the blullet and take theme. x
  • barbara12
    barbara12 Member Posts: 21,281
    edited 30. Nov -1, 00:00
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    Hello Lou001
    I really feel for you,its so hard faced with meds that might not suit ..but like DD say you have to suppress that immune system and we are all here if you need to talk more..sometimes this is all it takes ...I do wish you well with it..x
    Love
    Barbara
  • charleeh
    charleeh Member Posts: 173
    edited 30. Nov -1, 00:00
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    Hi Lou,

    I think a good idea for you to try taking your medications would be when you can be watching tv or reading to distract you / keep you occupied so you don't get too anxious. Also, you might feel better if you have a friend or family member with you for the first couple of days too? - maybe that would put your mind at ease a little?

    Meditation is the best way to help with anything like this I think, have you ever tried to meditation to help? I have a friend who is a mental health nurse and she says that a lot of Buddhist techniques are used these days to help all sorts of nervous problems (amongst many others).

    You might be able to pick up a kadampa relaxation cd off ebay or amazon for quite cheap - ??

    Hope this helps,
    best of luck,
    love charleeh x
  • spritchard91
    spritchard91 Member Posts: 7
    edited 30. Nov -1, 00:00
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    Hey guys,

    Im new on here. Im 23 and for the last 2 years i have suffered really badly with my joints.
    One day i woke up with fluid on my right knee- which wasnt painful.
    I went to the doctors and was told i may of knocked it and it would hopefully clear up by itself.
    I waited a few weeks but the fluid was still there however, it started to hurt / stiff joint. I noticed that i couldnt straighten my right arm and my elbow joint was really painful too. I went back to the doctors who then refereed me to a specialist. At the time they thought it may of been reactive arthritis as all the test results came back negative for RA and OA and a few months prior to the fluid i had an infection. He put me on Sulphasalazine which i was scared to take and after a few days on them i stopped as i was told to stop if i began to have mouth ulcers. I think it was too paranoid and didnt see them through properly…..I then went back on the waiting list and have only now been seen to.. NOW, i have back pain ( i can hardly move in the morning ) stiff neck, i cant look up at all and my jaw is killing me too. Everything is worse in the morning and it only ever seems to be capable after Ibuprofen.
    The specialist now seems to think it may be Seronegative Arthritis. He wants to put me on Methatroxate which i really dont want to take. I have read horror stories, im 23 and i feel like i want to try other options first before this horrendously strong drug…..


    Do you think if i request to try the sulphasalazine properly this time is could work for me??
    Could it still very well be Reactive Arthritis???

    IF it is sero neg arthritis will Sulphasalazine work for this? As i really dont want to take the methatroxate.

    I have had to give up so much! im 23 years old and have studied dance all my life to go on and audition for shows! I feel like right now this time has all been wasted. :( im so miserable as i want to peruse a career in what i love. Not sit down and discuss my aches and pains with my Gran who seems to be the only one who can relate to my pain.

    The NHS dont seem bothered and i dont feel like im priority just because im young.


    ADVICE?????
  • Frumpyshoes
    Frumpyshoes Member Posts: 12
    edited 30. Nov -1, 00:00
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    I started methotrexate 12 weeks ago and can honestly say I was terrified! Had the tablets for a couple of weeks before I took any and was expecting the worst!

    I can honestly say though that they have been fine! I started on tablets but they didn't seem to help and gave me headaches - nothing terrible but annoying. I was then switched to injections 5 weeks ago and my dose went from 15mg to 25mg. Within a week I was seeing the benefits - my swelling and pain reduced and has now largely gone although I still have limited movement in my wrist! Hardly any headaches but I was also put on 5mg of folic acid x 6 days a week. I inject myself - read on Internet how to do it and it's so easy! Try not to be scared of the drugs - they can free you from the pain (I have psoriatic arthritis). If you're concerned, take your first dose with somebody there to distract you - I did that....

    Good luck and hope this has helped

    Ps I can't take anti-inflammatories but taking ibuprofen every day also has implications for your health and will not slow down the disease either.
  • spritchard91
    spritchard91 Member Posts: 7
    edited 30. Nov -1, 00:00
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    Thanks for your reply.


    In regards to sulphasalazine will that work for Seronegative Arthritis too ? Im looking to dodge the Methatroxate tbh…. The side effects scare the living day light off of me- loosing my hair?!?!?! no way hozayyyyy, i wanna try all my other options first.

    AND i know that the side effects dont effect everyone- i totally get that. But i still wanna try other options first.
  • charleeh
    charleeh Member Posts: 173
    edited 30. Nov -1, 00:00
    Options
    Hey guys,

    Im new on here. Im 23 and for the last 2 years i have suffered really badly with my joints.
    One day i woke up with fluid on my right knee- which wasnt painful.
    I went to the doctors and was told i may of knocked it and it would hopefully clear up by itself.
    I waited a few weeks but the fluid was still there however, it started to hurt / stiff joint. I noticed that i couldnt straighten my right arm and my elbow joint was really painful too. I went back to the doctors who then refereed me to a specialist. At the time they thought it may of been reactive arthritis as all the test results came back negative for RA and OA and a few months prior to the fluid i had an infection. He put me on Sulphasalazine which i was scared to take and after a few days on them i stopped as i was told to stop if i began to have mouth ulcers. I think it was too paranoid and didnt see them through properly…..I then went back on the waiting list and have only now been seen to.. NOW, i have back pain ( i can hardly move in the morning ) stiff neck, i cant look up at all and my jaw is killing me too. Everything is worse in the morning and it only ever seems to be capable after Ibuprofen.
    The specialist now seems to think it may be Seronegative Arthritis. He wants to put me on Methatroxate which i really dont want to take. I have read horror stories, im 23 and i feel like i want to try other options first before this horrendously strong drug…..


    Do you think if i request to try the sulphasalazine properly this time is could work for me??
    Could it still very well be Reactive Arthritis???

    IF it is sero neg arthritis will Sulphasalazine work for this? As i really dont want to take the methatroxate.

    I have had to give up so much! im 23 years old and have studied dance all my life to go on and audition for shows! I feel like right now this time has all been wasted. :( im so miserable as i want to peruse a career in what i love. Not sit down and discuss my aches and pains with my Gran who seems to be the only one who can relate to my pain.

    The NHS dont seem bothered and i dont feel like im priority just because im young.


    ADVICE?????


    Hi, spritchard91

    I am 24 and have sero negative arthritis - mine started at 17. I too had difficulty in getting a proper diagnoses at first and they said it was reactive arthritis.... they even sent me for an embarrassing std test as apparently chlamydia can occasionally give swollen joint symptoms :oops:

    Methotrexate was a miracle drug for me, the hair falling out thing can be true to a certain extent but it doesn't come out in clumps so to speak, I had a mane of hair and now it just feels thinner thats all - its only my mum that can notice it as she cuts my hair and is a professional hairdresser, the only tell tail sign is the plug in the bathroom or the hoover :) and sometimes it goes thicker again every now and then and I have layers put in it to take the weight out of it again lol. Apart from that the sick feeling that a lot of people report can be easily remedied if you eat a couple of rich tea biscuits then take the MTX and then go right to bed - that way it stops it. Alternatively you can inject it, which has even less side effects.
    Eventually my MTX stopped working on its own and I now take MTX + an IV biological medication called tocilizumab - its a bit of a last resort thing for me.
    I hear sulfasalazine can be quite effective too, but it didn't work for me. Lots of these types of meds can give you mouth ulcers though - MTX can do that some times.

    I agree that being young we don't get taken seriously, especially when you are a positive, easy going person. I feel my rheumy doc constantly fobs me off - "he who shouts the loudest is always heard" . . . I don't moan enough, and I am positive too so I feel I get ignored while people who moan a lot get more notice taken.

    If I can give you any advice etc please feel free to pm me.

    I would say that you have to trust the docs to a certain extent and take what meds they recommend as that, at present is the only remedy to help with the symptoms of the condition.

    I do Yoga to help keep my movement, I meditate to help with the pain and I am a piscatarian (vegetarian that eats fish) - I find certain foods including too much dairy can give me symptoms of swelling in my knees and wrists and stress is a main trigger for me too. If you can work out your 'triggers' it will help you manage the condition for as long as possible and help avoid the need for taking stronger medications.

    I have lost 2 careers due to the condition and I know how you feel, but I am self employed now so I can take things easy to suit my disability, is there a way you could do the same? stay doing what you love by being self employed??

    best wishes,
    Charleeh x
  • Frumpyshoes
    Frumpyshoes Member Posts: 12
    edited 30. Nov -1, 00:00
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    The best thing to do is to explain all of this to your specialist! Your reluctance to take mtx and reasons for it and desire to re-try sulpha! He or she will then hopefully explain your options.

    I do agree that you have to trust their expertise! I have had no hair loss and I think that's pretty rare at the doses we take! I've got to say though that even if I had, I would prefer that to risking permanent damage and ending up disabled.... If they insist on mtx - take it! If it doesn't suit, you can stop but all drugs (and I do mean all) have potential side-effects!! Be aware of them, then forget them....
  • charleeh
    charleeh Member Posts: 173
    edited 30. Nov -1, 00:00
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    I agree with Frumpyshoes..... its worth taking the medications to avoid permanent damage to your body from the arthritis. If its left untreated the damage can cause very severe disabilities.

    Ask your specialist to explain to you fully what your condition is and does and how exactly the medication will work.... I find that learning about something helps take away fears

    And the hair loss is very rare - nearly everyone gets the sick feeling though. I have not heard of any other side effects from anyone at my rheumy clinic.

    best wishes,
    charleeh x
  • Cariad71
    Cariad71 Member Posts: 99
    edited 30. Nov -1, 00:00
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    Hi spritchard, and welcome to the forum if it's your first post :)

    I have seronegative arthritis and yes, sulfasalazine is often the first line drug for this, and it can work well for some. I started off on it a long time ago and eventually moved on to methotrexate.

    Lou, I can understand your anxiety over side effects, especially if you suffer with anxiety, but they're usually nowhere near as bad or frequent as the leaflets and internet would have you believe. The lowered immunity is a side effect, but the reason they monitor your bloods is to make sure your white cells etc stay at safe levels. Sulfasalazine is one of the most well tolerated which is why they choose it first, especially if you're thinking of starting a family soon. The mouth ulcers are also a side effect, quite common but they tell you to see the dr or ring your team straight away if you get them so they can check your blood counts, it doesn't always mean you can't stay on them. I suffered mouth ulcers for years on methotrexate, never got nausea, I took them at bedtime which is thought to help. The hair loss thing is very rare at the low doses used for arthritis, it's more when they use very high doses to treat cancer.

    If you can just bring yourself to take the step and swallow your first dose, I think your fears may be allayed. It's amazing how quickly you get into the routine of taking them and forget you're taking them, then start to forget doses if you're like me! The sulfasalazine turns your urine yellow too, but it's completely harmless!

    Best of luck xx