worried

went back to see rhumy they still. dont know what wrong but he said i have to many antibodies then he scared me to death by saying if im thinking of having children soon i have to tell them cause whatever is wrong with me could kill the baby then as though thats not scary enough he asks if ive been loosing hair, loosing teeth, cant stand to be in the sun do my eyes get dry dose my mouth go dry am i getting skin patches. so o bviously am really worried now. then he said if anything happen at all am to go straight back to hosp. not good.

9 Replies

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  • Why didn't you ask him what he meant Emma? I don't have a clue what this could be but don't think it would help to speculate anyway. Suggest you go straight to your GP and ask them what this means or phone up rheumy and demand an explanation because it's obviously really worrying for you?

    Sorry I can't help but I really hope you find out what he meant by all these questions so you don't panic so much - and hope you learn that it's actually nothing to worry so much about of course. TTx

  • Emma, what can i say to you, you really are having a time of it aren't you. All i can say is if you want to rant and rave about things we will all be here for you with words of support.

    Love, sylvi.xx

  • What meds are you on? Could it be that he was thinking that some of your medications would cause a problem with pregnancy - ie not allowed to get pregnant on mtx etc. I have to say with what he asked it sounds as though he is thinking it might be an hormonal problem - You need to call the RA nurse and say that since you got home you have had time to think about what was discussed and then ask what was he getting at when he asked those things. I know what it's like - one just seats there listens to it all without saying a word and then goes home and worries. Phone them.

  • Good question too: What does he mean by "Too many antibodies" !!

    Which antibodies??

  • thanks everyone xx

  • Hi Emma,

    My understanding of the 'too many anti-bodies' is how you immune system is over active which is what has brought on the RA in the first place. The RF test that you would have had done show the amount of anti-bodies in the blood, I hope someone can explain this better but I'll give it a try...

    When this RF test is done they work it out by dilluting a drop of blood with water, 1 drop of water to 1 drop of blood, then 10 drops water, 20 drops ect until the anti-body is un-detectable, this giving a reading of anything from 1 to ??? mine was 1200 which was very high.... I think this is was determines whether you are positive or sero-negative, so assuming you have a lot then your positive??

    I'm not sure but from what I learnt from here, being positive seems to be more straightforward in terms of treatments.

    It sounds like your Consultant was advising you on the risks of becoming pregnant of Methetrexate? My consultant also advise me to let him know if I plan to have any more children; For my medication I' on now I HAD to go on the contraceptive pill to ensure I wouldn't get pregnant.

    But I agree with the others, you really need to get in touch with your RA nurse, poor you, no wonder you are worried after that!

    Good luck and let us know how you get on x

  • Hi Emma,

    You have my support also, I think Emma is right and if you are planning a pregnancy, you will have to consult with your team (RA & primary care) to ensure you are fully informed.

    I have to say I heard that once pregnant the RA goes into remission??? You have to be careful after you have the baby, as you can flare.

    You need to make a list of questions, and don't be stressing when you are not sure what it was all about, Plenty of people have RA & have babies.

    xx Gina.

  • With regards to pregnancy, I have had two children all while suffering with RA, you have to be off methotrexate for, I think 6 months, before you can conceive, however with my second child I switched to Sulfasalazine (spelt wrong I think!) which again I think clears your system within a month. I didn't flare until I stopped breast feeding my first at six months and then it was managed and not too distressing, with my second I got to two months and had to stop feeding and go back on the Sulfasalazine, but again it was managed very well. I have to say in both pregnancies my RA was virtually non existent.. I hope this is some help. :-)

  • Just to let anyone thinkning about pregnancy to know. I took sulphasalazine all the way through my pregnancy and breast fed my son to 13 months (while still taking it) with the blessing of my consultant. It is not licensed but there are no known side effects during pregnancy and 1000's of women have taken it when pregnant. As for breast feeding there has been one reported case of a baby developing a rash but this dissapeared when breastfeeding stopped.

    Hope this reassures some mums to be.

    Becky

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