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Rank: Advanced Member  Groups: Registered
Joined: 2/14/2011 Posts: 301 Location: South Hampshire
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Hi Folks My daughter just got diagnosed with RA yesterday in Oxford.  They are quite different to Portsmouth and started her on MTX and Hydrochloriquine. Usually they'd use sulfasalzine as well - but one of her blood results contraindicated this. (presumably the triple therapy approach) Now the question is when should she take them! Bearing in mind she is writing a dissertation and going to job interviews at the moment!! I know MTX leaves people tired/sickness the next day (at least)... but I know nothing about hydroxychloroquine. What sort of side effects do people get on this one? She was told Folic acid once a week! (just to add to the debate!) They did give her a steriod injection too, so I am hoping that will start working quickly for her. MTX didn't suit me so hopefully she'll be ok on it. I'd be interested in how others managed with uni and their first jobs! I am thinking she should not mention it at job interviews and see how things go! If any 'younger' ones have any helpful info on drugs and managing the RA it would be very helpful. I think we can safely say there must be some sort of genetic component or trigger (my mum, me and my daughter). My other daughter and son are fine. I am still waiting to see if the Humira is actually going to work... so I can reduce down the steriods tablets. Anne
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Rank: Advanced Member  Groups: Registered
Joined: 8/25/2010 Posts: 1,289 Location: Buckinghamshire
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hi Anne,
really sorry to hear your Daughter has been diagnosed at such a young age.
i really feel for you.
as for the Meds ... i am currently on Methotrexate and Hydroxycholoquine was added 5 months ago ( sadly failed on both )
i take my Methorexate in the morning with Brekkie once a week, i know there's a debate as best time to take it but i was told best with food. and i take 2 x 200mg Hydroxy a day, again with food so one with Brekkie and one with my evening meal.
these were the instructions given to me by my Rheumy Nurse.
i have never suffered any affects on them although they have both failed me.
i will be staying on both drugs for the first 3 months once i start on the Humira.
and i take 2 Folic Acid 2 days after Methotrexate day.
i'm sure one of the younger members will post soon.
do let us know how you are getting on with the Humira, i realise it's very early days for you but am interested to hear.
hope your Daughter is as well as can be,
Suzanne x
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 336
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Hello Anne, I'm sorry to read your post, you must have been watching out as I do and I'm sure many others do. The thing is that the fast attack on the RA does appear to have benefits and I hope that your daughter does well. I found that the Hydroxy helped with my fatigue. I wish her all the best for her future. Glenys.
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Rank: Advanced Member  Groups: Registered
Joined: 8/30/2010 Posts: 507 Location: Gravesend
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Sorry to read this Anne, I hope you both are handling the news ok , and that you are both as well as you can be :) In addition to this this valuable forum .. Arthritis Care forum has a special young persons (under 25) part to their forum. It is free to join the forum , and i hope no-one objects to me pointing this out as i believe as much help from as many sources as possible is essential .No such thing as too much help :) Rich :) "The difference between 'involvement' and 'commitment' is like an eggs-and-ham breakfast: the chicken was 'involved' - the pig was 'committed'."
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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Hi Anne
So sad to hear your daughter has RA. I think this is something all Mums worry about from time to time.
It sounds as though she is getting some good treatment and this is what counts.
Both of you take care
Much love
Jeanxxx
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Rank: Advanced Member  Groups: Registered
Joined: 9/5/2010 Posts: 364 Location: mid glamorgan
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Hi Anne
So sorry to hear that your daughter has RA as well... My daughters are 22 and 23 and I keep a close eye on them. Hope that the mtx and hydroxy work well for her and she goes on to get a wonderful job. Take care both of you
Love Ceri xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Hi Anne,
So sorry to hear that your daughter has RA, you must be devastated. I'm sure we all fear our children getting it.
It does seem as if she is getting good care and has been diagnosed early. I hope she copes well with the drugs and they soon take effect.
Love, Doreen xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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Ann
I am going to email NRAS and ask that my personal details are passed on, I was dx at 20 with RA. My gran has it.
Jenni xxhow to be a velvet bulldoser
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,689 Location: Durham
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Hi Anne, I`m so very sorry to hear about your daughter`s diagnosis - I think we all watch our children like hawks for the slightest sign. I hope she gets really good treatment and her RA is quickly controlled. Kathleen C x
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Rank: Advanced Member Groups: Registered
Joined: 2/14/2011 Posts: 301 Location: South Hampshire
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Thanks everyone.
Thanks Rich for the info - I'll have a look.
Thanks Jenni. It'll be nice to know what helps etc. At the moment she's so tired and trying to write her dissertation while having interviews!!
Oxford want blood tests every 2 weeks. Is this just her age or just Oxford? This is going to be rather tricky as she's hoping to start a job soon!
They also make the GPs write all the prescriptions and check all the bloods.
Needless to say she is very annoyed.. but not surprised that this was the diagnosis.
Anne
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Hi Anne,
Everyone has 2 weekly blood tests when starting on mtx, then if all is well and it is tolerated the amount of blood tests can be changed to monthly. Has she started on a small dose and will keep increasing? If she is, she will have 2 weekly tests until she reaches the maximum dose .
My GP prescribes my mtx and checks my bloods, I think this varies with different health authorities.
Poor girl, it's probably shocked her to get the diagnosis even though she expected it.
Wishing her luck with her dissertation and the interviews, a difficult time for her.
Love, Doreen xx
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Rank: Advanced Member Groups: Registered
Joined: 8/30/2010 Posts: 507 Location: Gravesend
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Think the 2 weeks testing must vary too , as i am 6/7 weeks into MTX and on 15mg plus 10mg Leflu and have my bloods done at hospital once a month. :) R "The difference between 'involvement' and 'commitment' is like an eggs-and-ham breakfast: the chicken was 'involved' - the pig was 'committed'."
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Rank: Advanced Member  Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Hello Anne
Sorry to hear that your Daughter has RA what a shock at such a young age. She appears to
be on good medication straight away so that is brilliant news.
Take care both of you
ROSE
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Rank: Advanced Member
Groups: Registered
Joined: 2/7/2011
Posts: 66
Location: London
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I also wonder whether they are paying extra attention (2 DMARDs to start with & 2 week blood tests) because of her age and being extra-keen to treat aggressively to give her the best chance of knocking it into remission. But poor thing, she has all my sympathy as the diagnosis must have been even more shocking for her. Fingers crossed that she's in the group that responds well and so has many, many years before it flares again.
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Rank: Advanced Member  Groups: Registered
Joined: 11/20/2010 Posts: 244 Location: Cornwall
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Hello Anne,
Sorry to hear your news. I was told 2 weekly tests for the first 3 months, yes it is a pain but it means they can find out quickly about toleration and if her liver starts to rebel she'll feel even more ill than any of the other side effects of the MTX. When I first started taking it I was like a zombie the next day but that subsided after a few weeks so its a case of picking a day in the week when she hasn't got any definite commitments the next day just in case. Just a note of caution about job interviews etc. If there is a medical questionnaire and she doesn't declare everything it could make it tricky for her in the future.
Sara
x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 838 Location: Nottinghamshire
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Hello Anne
Just want to say how sorry I am to hear that your daughters been diagnosed with RA. It's one of my worries that my daughters or grandchildren may develop it and I am sure that most of us on here fear the same.
I had to have two weekly blood test done for the first twelve weeks when I started taking MTX and when it was increased I had to again for 6 weeks. I haven't had any side effects at all from the drug and am currently taking 20mg once a week along with 6 SLZ a day. Lets hope that she gets on well with MTX and starts to feel better soon.
Love and hugs to you both
Paula x
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Rank: Advanced Member Groups: Registered
Joined: 2/14/2011 Posts: 301 Location: South Hampshire
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Thanks for all your encouragements - it has helped. I was a bit down at the weekend; as the realisation of the diagnosis hit home... not what I wanted to hear, but nonetheless did fit the symptoms. Now just got to work out how best to support her - and also wondering how she'll manage full-time work (bearing in mind she lives 70 miles away). My daughter is now complaining that the steriod injection has made her really tired!!! They always give me loads more energy or do nothing... but not tired.... has anyone else had this problem?  I am slightly thinking it is more to do with having an interview in London last Friday, an interview in Oxford tomorrow, a music concert last Saturday night and writing a dissertation by Friday!! plus 4 other assignments!! But I could be wrong..... Anne 
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Rank: Advanced Member  Groups: Registered
Joined: 3/28/2011 Posts: 956 Location: North Preston
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Hi Anne
I feel so sorry for you. Not only have you the burden of having RA yourself but to have your daughter have it too must be a real body blow. Life can be so cruel sometimes. I hope your daughter is now feeling much better after the steroid injection and that you are feeling better too. I suppose the positive side of it, if there is one, is that you can help your daughter with reliable information and your daughter has someone close to talk to about her condition knowing that you truly understand what she is going through. I have a very supportive family but I really feel that it is only since joining this forum that I can talk to people who genuinely understand. I feel sorry for my husband and boys sometimes because they don't know what to do or say when I am having a really bad time and they are desparate to try to help.
I do hope things improve for you both.
Love Sheila G x
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Rank: Advanced Member  Groups: Registered
Joined: 3/8/2010 Posts: 914
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Hi Anne, Just caught up with this post, I am so sorry to hear about your daughter developing RA, as others have said I think it is a big worry for us all. I was on the triple therapy to start with including hydrox. I am still on this one and never had any problems with it. Being diagnosed early will help enormously, I feel for her age though it must be such a worry for you and your family. Tell her to take the MTX at bedtime it may help with the tiredness and to try to pace herself as best as possible. My thoughts are with you, hope it settles soon. Take care Lorna xx
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