We have no say when it comes to medicine what a disgrace

Niknak Member Posts: 44
edited 19. Dec 2012, 03:50 in Young people's community
Hey everyone, I have not been on here for a while/ I originally posted am I in denial rebating my gorgeous girl being diagnosed with juvenile arthritis. I'm not in denial but I syllable don't get how my Nicole is so active when the consultant wants to pump her full of medicine that I feel the side effects make her ill not the Arthiritus itself. So to cut a long story short. Nicole was diagnosed a year ago when she was three, put on methotrexate which hasn't done anything as according to consultant it's not working, however, it is suppose to take up to three months to get in your system and six months to have full benefit. But nic never gets to three months as she always ends up on antibiotics due to side effect of low immune system/ now consultant wants to add etanercept and I have said no. Mainly due to the side effects and the fact the consultant hasn't explained why she warrants it. My gorgeous girl can out run most 4 year olds dosent complain of pain. But this consultant says if I don't do as she says she will ring social services as I won't medicate . But I am medicating she is on methotrexate and just because I am questioning what when where and why..... What I should be bullied into it. So now I am going out my mind and I have asked to be transferred to another consultant for a second opinion/ Nicole has had this since she was 2 and a half but my go was a waste of time. It has always been hard to compare how she is to a child of the same age because she has done her funny little things for a long time. Could she have really built a tolerance. Nicole is always tired she still sleeps like a toddler. Now I don't know which way to turn because it's like a living nightmare, and to find out you really don't have that much say when it comes to medication is beyond belief. So sorry to ramble


  • stickywicket
    stickywicket Member Posts: 27,418
    edited 30. Nov -1, 00:00
    I’m not the parent of a child with arthritis, Niknak, but I am a mother and grandmother who has had RA since I was 15 and I'd hate it if either of my sons, or my little grandsons had been in this situation. It must be a real nightmare for you.

    I do agree that these meds are powerful things and can have very unpleasant side effects. However, arthritis is a powerful disease so, for those of us who have it, the meds are essential. Your main concern seems to be whether or not your little one actually has it and therefore needs these meds. You say she can outrun most 4 yr olds and doesn’t complain of pain yet is always tired and still sleeps like a toddler. You also say ‘she has done her funny little things for a long time.’ What funny little things are these, I wonder?

    I do understand that you won’t want Nicole taking unnecessary meds but, if she does have arthritis, the meds are vital to hold the disease at bay. I’m not sure that having to keep coming off the methotrexate in order to go on antibiotics would prevent the meth working. Certainly it wouldn’t work as well as if she could just stay on it all the time but I’ve always found it takes a week or two before I notice any appreciable difference.

    I think seeing a different consultant is a good move. If two of them agree then, presumably, you have your answer. If not, you will feel you were right to do as you did. Though, if Nicole’s blood tests do show active disease, it’s hard to see how a different consultant can reach a different opinion. What did he say about the bloods? Would a chat with your GP help? Or, indeed, with our own helplines?

    Auto-immune arthritis, in its early stages at least, is such a difficult beast. I had times when I could still run and hike for miles and, when it wasn’t active, I had nothing to show for it except a few swollen joints, if one looked carefully. But it was still there and, because there were no DMARDS at the time, it was doing damage unseen which could not be reversed so, please, whatever you decide for Nicole, decide quickly and take action.

    By the way, I think you may have accidentally posted this in the wrong forum. I expect you wanted the forum for parents whose children have arthritis and I suggest you copy it there so that other parents will see it.)
  • Niknak
    Niknak Member Posts: 44
    edited 30. Nov -1, 00:00
    Thank you for your reply I really appreciate it, well nicolds bloods have always been normal inflammation markers never moved which I find bizarre. By her funny little things I mean the way a toddler behaves her tantrums not wanting to get dressed asking to be carried etc. And according to the consultant Nicole had 6 months affected 3 months ago but now three months on two affected. So if that consultant is right then there obviously has been some improvement so what warrants adding entanercept. I know the meds are used to help control the disease but there are very serious side effects attached, and at four years old it is difficult trying to weigh up the pros and cons, because how will these meds effect her long term. I have been told that many different things by this consultant: and I can't wait to see what the new consultant says. Xxxxxxx
  • stickywicket
    stickywicket Member Posts: 27,418
    edited 30. Nov -1, 00:00
    I really do feel for you, Niknak. I have one grandson who is nearly 3 and another who is 5.

    I agree it seems odd if Nicole's bloods have always been normal though I'm no expert at diagnostics. How did they diagnose her in the first place? And, on what basis is the consultant now wanting to add etanercept? He has to be basing it on something but I'd certainly want to know what.

    The 'funny little things' you write of could be something or nothing, I agree.

    You do need to have faith in your consultant but, as I said earlier, whatever you do, speed is of the essence. I do think our helplines might be able to shed some light on it all. There's no need to phone if you don't want to. You can just use their own forum.

    There's also no need to reply to my post (I know how busy young Mums are) but, if you want to, I suggest you do so on the other forum, where I see you've copied your thread, as it'll be easier to keep all posts together. Good luck!

    P.S. I've just checked this out and discovered that juvenile arthritis isn't necessarily diagnosed by blood tests, unlike other auto-immune forms of arthritis, though bloods may help. I sympathise even more. It must seem very hit and miss for you.
  • canyoufelix
    canyoufelix Member Posts: 7
    edited 30. Nov -1, 00:00
    The disease is progressive - If the rheum thinks that the medicine is necessary then they're obviously worried for the future.

    She might be 'fine' now, but what about after a year of unchecked joint damage, 2 years of joint damage, 5 years etc etc.

    Not looking to scare you but this is the reality, this is coming from someone who at 24 has only just started being able to walk properly/get through a day without being dosed up to the eyeballs on codeine - This was a direct result of not getting the medication I needed as I went years without a diagnosis.

    The fact of the matter is you're lucky that the disease has been spotted so early - you need to capitalise on this!
  • victoryip
    victoryip Member Posts: 7
    edited 30. Nov -1, 00:00
    My god, do what the doctors tell you, I assure you they know best, I'm 16 now and I'm living in a big pit of regret, oh and pain, lots of pain. Reading your post reminded me of myself, since about June 2011 I just stopped taking any medicine at all, I wasn't in pain, none of my joints were swollen, my inflammatory markers were low, I continued this till about September this year, I was having a routine full-body MRI, bear in mind throughout all this I was living a normal life, regular tennis, rugby, I could outpace many in my year, I was living like every other child my age, anyway the results came back and both my hips were heavily inflamed, still I felt no pain, no visible swelling (although it is hard to see in big joints) no stiffness. I thought it was best to restart my medication of sulfasalazine just in case, but it was already too late, my arthritis came back with a fiery vengeance, the right side of my body has been ravaged by the disease, the joints in my chest are swollen, it's painful to breathe, right now I'm just toughing it out through my GCSEs but I've spent more time in hospital than school, so I don't know how that's going to turn out. Please, I've seen my mother cry at my bedside enough times to know that I will never understand what you are going through but, the doctors have you and your daughters best interests at heart, don't leave it to change, hope for the best, but prepare for the worst. I'm sorry you had to hear my story, try to enjoy the holidays, and I wish you the very best of luck