help again please

marooned
marooned Member Posts: 68
edited 8. Apr 2010, 14:45 in Living with Arthritis archive
HELLO TO YOU ALL, BEEN BACK AT THE HOSPITAL TODAY, THE NURSE WAS VERY GOOD SPENT AN HOUR AND A HALF GOING THROUGH EVERYTHING
CLARE,S BLOOD WAS RHEMATOID POSITIVE
SHE HAS BEEN PUT ON HYDROXYCHLOROQUINE
AND METHOTREXATE CLARE HAS DECIDED NOT TO TAKE THE METHOTREXATE SHE HAS 2 WKS TO LOOK INTO IT, CAN ANYONE OFFER ANY ADVISE AS I SAID BEFORE SHE IS 23, WHEN THE NURSE MENTIONED HAIR LOSS AND NOT BEIN ABLE TO HAVE A DRINK AS LIKE ANY 23 YR OLD SHE GOES OUT WITH FRIENDS ECT, CAN ANYONE JUST HELP WITH SOME TIPS ON THE MEDICATION ECT
MANY THANKS

Comments

  • marooned
    marooned Member Posts: 68
    edited 30. Nov -1, 00:00
    marooned wrote:
    HELLO TO YOU ALL, BEEN BACK AT THE HOSPITAL TODAY, THE NURSE WAS VERY GOOD SPENT AN HOUR AND A HALF GOING THROUGH EVERYTHING
    CLARE,S BLOOD WAS RHEMATOID POSITIVE
    SHE HAS BEEN PUT ON HYDROXYCHLOROQUINE
    AND METHOTREXATE CLARE HAS DECIDED NOT TO TAKE THE METHOTREXATE SHE HAS 2 WKS TO LOOK INTO IT, CAN ANYONE OFFER ANY ADVISE AS I SAID BEFORE SHE IS 23, WHEN THE NURSE MENTIONED HAIR LOSS AND NOT BEIN ABLE TO HAVE A DRINK AS LIKE ANY 23 YR OLD SHE GOES OUT WITH FRIENDS ECT, CAN ANYONE JUST HELP WITH SOME TIPS ON THE MEDICATION ECT
    MANY THANKS
    PS IF THERE IS ANYONE OUT THERE MY DAUGHTERS AGE WHO WOULD BE HAPPY TO SPEAK TO HER ON THE PHONE CAN YOU PLEASE INBOX ME
  • kerrycc
    kerrycc Member Posts: 89
    edited 30. Nov -1, 00:00
    Hello

    I'm 38 and am on both the meds you have stated. Methatrexate is a scary drug I have to say, I have been on it for 18 months and I have not experienced any hair loss and I do go out and have a drink - not excessively though but that's not good for you health no matter who you are, so not such a bad thing... the side effects I have are nausea and an iffy stomach, this is only a recent thing though and I think its more to do with my thyroid. What about if she tries it, then if there are any effects, she could switch to something else?
  • woodbon
    woodbon Member Posts: 4,969
    edited 30. Nov -1, 00:00
    Hello,
    I'm afraid I don't have the experience of RA as I have OA, and I'm a nearly 55. I'm sure you'll soon hear from someone who can help her. Have you,or your daughter tried phoning the Helpline number at the top right of the page? They may also be able to talk to her and give her the support she will need at this time.

    I expect your daughter and you will need some time to go through all the emotions that illness brings with it. I always find it helpful to know what I'm fighting, and find out facts about it.
    I hope all goes well for both of you and your daughters new meds will help her.
    Love Sue
  • scattered
    scattered Member Posts: 326
    edited 30. Nov -1, 00:00
    I'm 22 and was diagnosed when I was 19. I would advise your daughter to take the methotrexate (MTX). By not doing so she is putting herself at risk of severe joint damage and the potential for the illness to get out of control quickly. Along with the methotreate she will take folic acid which helps to prevent hair loss and stops many of the side-effects. You do have to watch what you drink but a few drinks once a week should not pose any serious threat to her liver. I still have the occassional drink and I'm on MTX. This is my 3rd trial of it and this time round I haven't lost any hair, probably due to the amount of folic acid I take with it.

    Please ask your daughter to weigh up the pros and cons of taking this medication. There are risks and side-effects with all meds. I also take hydroxychloroquine and that bleached all the hair on my body - at one point I looked like I had no eyelashes - and my skin is now very sensitive to sunlight. The hydroxy alone will probably not be strong enough to control her disease. I take it with MTX, Humira and steroids. By not going onto a strong drug she could get badly damaged joints which could have been prevented. I'm not trying to scare her or you, but she must acknowledge that risk as a very real possibility. In my experience the only weay to prevent joint ddamage is to hit the disease hard and fast with as strong a drug as you can at the beginning.
  • caprica
    caprica Member Posts: 195
    edited 30. Nov -1, 00:00
    Hey there,
    I'm the same age as your daughter, I don't know about the drugs as the rheumatologist is still deciding what to stick me on, but I do know that if Claire wants to speak to someone on the phone, NRAS (National Rheumatoid Arthritis Society) do those type of support calls. Check out their website and in the 'Help for You' section I think you can request a Volunteer Call. They match you up to someone who's been in a similar situation.
    Good luck, I hope she gets on the right treatment soon.
  • skezier
    skezier Member Posts: 11,333
    edited 30. Nov -1, 00:00
    Hi There,

    I also agree its a good idea for her to weigh up the pros and cons and seriously think about taking the mtx. I started it recently and so far so good so its not automatic she will get hair loss and most tablets are better not to drink with so maybe she might enjoy going out and having fun but sticking to non alcoholic things? I hope she will get on ok what ever she decides to do but she is taking a risk not having it controlled really. Take care and hope you are ok? Cris
  • snowball
    snowball Member Posts: 3,465
    edited 30. Nov -1, 00:00
    Hi I'm 41 and have r/a and have been on methotrexate for about 5 years, as other people have said on here the benefits outweigh the possibillity of causing damage and deformed joints. They will probably start her on a low dose to see how affective it is to her r/a and my nurse said that hair loss usualy only happens to poeple taking very high doses for cancer treatment. Taking the folic acid helps with a lot of side affects too.

    Julie
    ((((hugs)))) n xxxxx to ya all
  • cthornley
    cthornley Member Posts: 627
    edited 30. Nov -1, 00:00
    Hi
    I'm 31 now but I was 19 when I was diagnosed (RA...pretty much everywhere :shock: ) i've been on MTX for nearly 8 years now - I drink (sensibly) on it and i haven't really had any hair loss
    MTX was a lifesaver for me...I have restricted my joint damage, and for the most part got my RA under control allowing me to complete a very difficult uni course (8 yrs doing architecture) , live independently (and have lots of student fun ) and 2 years ago be stable enough to take a break and have a little boy

    MTX is a serious drug but as long as you get regular monitoring (you get used to it), it can be very very beneficial especially if you are young

    If your daughter has any questions or just wants to speak to somebody who knows what she's going through please feel free to send me a personal message

    Chrissie
  • marion1952
    marion1952 Member Posts: 963
    edited 30. Nov -1, 00:00
    Hi

    I too was very nervous about taking Methotrexate when I first developed RA two years ago, but I can honestly say it has been a great drug for me. The hair thinning has been minimal and, in fact, my hair has thickened up again and is exactly as it was before I started on Mtx. I transferred from tablets to injections about 18 months ago and I would recommend that - I don't have any stomach problems with the 15 mg injections.

    I have not had a cold in 2 years. I do have hay fever-type snuffles now and again and sometimes a dry/irritating cough - which are side-effects. I had raised liver enzymes recently, for the first time, but that only lasted for a week or so. Disappointly though, it seems the Mtx is not controlling my RA as well as it was, as I am having lots of flare-ups at the moment. It was great while it lasted though, and I would definitely recommend Mtx.

    Marion
  • marooned
    marooned Member Posts: 68
    edited 30. Nov -1, 00:00
    cthornley wrote:
    Hi
    I'm 31 now but I was 19 when I was diagnosed (RA...pretty much everywhere :shock: ) i've been on MTX for nearly 8 years now - I drink (sensibly) on it and i haven't really had any hair loss
    MTX was a lifesaver for me...I have restricted my joint damage, and for the most part got my RA under control allowing me to complete a very difficult uni course (8 yrs doing architecture) , live independently (and have lots of student fun ) and 2 years ago be stable enough to take a break and have a little boy

    MTX is a serious drug but as long as you get regular monitoring (you get used to it), it can be very very beneficial especially if you are young

    If your daughter has any questions or just wants to speak to somebody who knows what she's going through please feel free to send me a personal message

    Chrissie

    thankyou so much clare is going to inbox you
  • issymknight
    issymknight Member Posts: 99
    edited 30. Nov -1, 00:00
    Hi not as young as your daughter but I'm on methotrexate and it is an individual choice.

    I was told from my rheumy the dangers of the drug and the rhuemy was really honest so much so that he frightened my hubby.
    I spoke to my hubby and said that all drugs are iffy and they all have side effects but it has to be my choice.

    I chose to go on the methotrexate as I felt if it slowed down the RA then it would help me. I'm not vain but I was really scared and still am about my joints twisting especially my hands and that was one of the main reasons I decided to go on the drug.

    Another reason was that because I was on this drug I have to have blood test every month (which is a pain sometimes) but it means that I'm getting an MOT every month as the GP cant give me drugs till they have checked the results, so if anything was to go wrong I like to feel that it would be picked up quickley and action taken.

    I have found because we are on a small dose compared to cancer patients the hair loss for me is minimal I have quite long hair and when I wash it and squeeze it a few strands come out no more than when you brush your hair.
    I get terrible flare ups and have been on the methotrexate for over 5 years My rhuemy started me on the drug straight away and I can say that when I have a flare my joints have a mind of there own, but I like to think due to the drug I have no modules or any misshaped joints yet. I know it will happen down the line but due to methotrexate It is not happening as quickly. This is what I think no one else.

    As for the drinking well its like any drug really you shouldnt drink. I dont drink much any way so it doesnt bother me. i can understand your daughter though. You can drink but it must be in moderation so when I go out I limit myself to 2 drinks I have my prefered short then I fill it up with soft drink and ice so it is well watered and last longer it also means I'm not sitting drinking soft drinks on my own.

    At the end of the day though this is a personal choice and only your daughter can take it as she will be the one on the medication. I would be able to talk to her over the phone if she would like just let me know.

    Issy
  • poppy30
    poppy30 Member Posts: 67
    edited 30. Nov -1, 00:00
    I started MTX when I was 27 and felt rubbish about it!!! :x Was worried about not being able to enjoy a drink with mates and I felt far too young to be diagnosed with something like arthritis!!!! :shock: :lol:

    If Clare wants to message me she is more than welcome.

    Poppy x
  • pluggathome
    pluggathome Member Posts: 171
    edited 30. Nov -1, 00:00
    Hi

    I was also very reluctant to go onto the MTX but we have to balance the risks against the benefits. The doctors have to give you the worst case scenario so that we can make fully informed decisions. Also, factor into it that the doses we are on are generally much less than those for cancer patients where you will see more side affects.

    I have found that I can't drink, not even a mouthful, as I feel like I swam in the barrel never mind drank a bit from it - the upside though is I save money, no hangovers, you can take all the incriminating pics of others and have a jolly good laugh people watching.

    I have had tummy troubles too but I also have IBS and we are winning that battle with a combo of other drugs.

    I can understand why your daughter is reluctant but as others have said, give it a go, she can then make her own informed decision based on personal experience.

    Take care

    Plugg