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Date: 29.07.2010
From: Marilyn

Subject: first dose of Methotrexate

Hi i'm new to this forum, just started Methotrexate (Monday) and folic acid. Just wanted some reassurance about hair thinning. I have been told that this can happen. My doctor also says that it is a dangerous drug and cannot be given on repeat perscriptions. I have to request it every month is this normal and does it really work for RA.
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Date: 29.07.2010
From: Kirstine

Subject: Re: first dose of Methotrexate

Ive been on mtx since march and am not on the injection form. Ive always had to say when i need a new prescription each month but its just a case of ringing up for it. Are you getting blood tests done? What dose are you on? And when have you been told to take the folic acid?
Im askin about the folic acid because i was left to work it out for myself at first, it shoukd be taken 2-3 days after you take mtx! If you gt side effect it can be taken every day appart from your mtx day.
As far as side effects go, i was also worried about he hair thinning but it is rare so try not to worry. I do get sickness nad tiredness with it, this was much worse in the beginning for me.
So far ive had no joint damage despite being in a continual cycle of flare ups, so yes i do hink it is helping and am convinced it would be all much worse without it. :)

Welcome to the forum! X
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Date: 29.07.2010
From: Marilyn

Subject: Re: first dose of Methotrexate

Thanks Kirstine, I am on 4 x 2.5 tablets increasing to 6 tablets after 10 weeks. I was told to take the folic acid on Fridays and the Methotrexate on Mondays. I am also on Salazoyrin 4 a day until they tell me otherwise and a Lansoprozole for sickness. I also take fish oil and glucosamine and beleive it or not I was a very healthy person and never went to the doctors for anything. This is a bit in your face for me and is constantly in my thoughts. I seem to be always having blood tests and seeing the Rheumatoid doctor. I reluctantly hope to get used to it. Thanks again.
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Date: 30.07.2010
From: Abbie

Subject: Re: first dose of Methotrexate

When I was on mtx tablets I had them on repeat but since I've been on injections it's not an issue as Bupa deliver them to my house. As with hair thining, first couple of months there'd be more hair in the bath than usual after washing but not enough to notice a difference and it was a bit stay like but you can buy hair elasticizers that work wonders so it's not all bad. Try not to listen to all the horror stories. Go well X
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Date: 30.07.2010
From: Marilyn

Subject: Re: first dose of Methotrexate

Thanks Abbie I didn't know anything about elasticizers, so I have got on the internet and ordered some. My husband says it may be good for his thinning hair too. Has the mtx worked for you and does it make the RA go away or just releive it. I have bad shoulders at the moment and sleeping is difficult because I can't get comfortable. Thanks again.
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Date: 30.07.2010
From: Jill

Subject: Re: first dose of Methotrexate

Hi Marilyn
welcome to the best forum, this forum is supportive and will help u cope with lots of things taht u may want to get off your chest....the good thing is, that U r now on the correct meds to dampen down the progression of the disease, and hopefully stop it in its tracks, and stop the flare ups that come with having R.A... Ive been on MTX tabs for 3 years, was on 17.5, now dropped to 15...soon to go on MTXZ Injections(will let all know how I get on with them) anyway, it takes at least 3 months for MTX to get into your system, some of the side affects will and can be different in us, as we r all different, i tend to get absesses and have had a few teeth removed, its becos our Immune system is compromised....Im aslo on Enbrel(anti tnf Bio meds)....If your MTX doenst help after say 6 months, they may think u r entitled to go on those too......both the Enbrel and the MTX works well together....

also after 3 years, my sideaffects have lessened....I think you need to know that altho we r on these drastic meds, it isnt a cure....as long as u r aware of that, U shouldnt get too dissapointed if u find taht things arnt getting better for u, its a slow process....but given time, U will get the disease under some sort of conrol, with less flare ups.....so remain Positive Ok....I was never told all that, therefore I had given myself too high a hope, and it let me down bad.......however, having sdaid that, Ive now accepted my disease, and the meds I take, I couldnt be without them....and they have defffo helped my flare ups.......your body will tell u that your tired, u must rest, and mb u will feel a little more tired as a result of the MTX...the disease makes us tired and so does the MTX, but over time u will get use to the MTX..keep taking your Folic, that is important.....regards sleeping, Buy a V pillow, lie on one side of the V, and put the other part behin ya spine, supports the back...mb buy a memory foam topper? helps me a lot.

OT can give u a pillow riser(fills with air) brilliant for painful shoulders, its all free, when my shoulders play up, I use it, and its like lying on air....supports my shoulders, couldnt live without it....

this forum will give U many many Tips, jsut ask us ok.... regards Hair loss, not happened to me, altho did b4 I began the MTX

I beleive the best way to cope with this disease and the Meds and blod tests, is that they r there to Help u as much as possible, Imagine if U didnt get that help, U wld be in a terrible way....so reamin Positive....Positivity is Everything...My mantra LOLOL

tc Let us know how u get on tc Jill
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Date: 30.07.2010
From: Marilyn

Subject: Re: first dose of Methotrexate

Thanks Jill I have taken everything you have said on board and will try them out. You are the first person to say something positive about MTX. I only hope eventually it helps me. I am determined to remain positive. I have a family that needs me (I think). regards Marilyn
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Date: 30.07.2010
From: Sally

Subject: Re: first dose of Methotrexate

Hi Marilyn, if anything - i've been losing less hair since I've been on Mtx! I ask my hairdresser everytime I see him and he can't see any difference. Don't forget, the doses we take are tiny in comparison to what people who have other diseases have to take. It is helping my arthritis quite a bit but took much longer to kick in than I expected. I still have problems but not so bad.
Like Jill says, be realistic in your expectations and give it time.
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Date: 31.07.2010
From: Marilyn

Subject: Re: first dose of Methotrexate

Thanks Sally, I feel more reassured now. Nobody wants to lose their hair. If you don't mind me asking how long have you been taking MTX. I have been having some swelling in my hands and the side of my neck is stiff, I also have pains in my toes. Just wondered if the MTX will stop all this.
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Date: 31.07.2010
From: Jill

Subject: Re: first dose of Methotrexate

HI Marilyn, Hi Sally xxx

Marilyn regards the mTX prescription, U just request it, and each month your GP will give it to u.... the MTX will help your pain and joints, r u taking any Anti Inflamatories? ARCOXIA is one of the best, and good long term.....also if your neck continues to give u too much pain, ask for an xray or an MRI, U r entitled to all of this help, also some GPs get arsey, Never let a GP tell U that he cant refer u.....a good GP, always will....thank god my GP is brill

Off on my hols for a week.....be back then tc

Jill x
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Date: 31.07.2010
From: Sally

Subject: Re: first dose of Methotrexate

hi Marilyn & Jill (how u doing hun?)
I've been on it for about 7 months. Am also on steroids but v small dose. Not entirely working but they are putting it up slowly. Am in pain quite often but managing to do stuff. Hopefully the mtx will stop all your pains to a greater degree. I have been told by various people not to expect them to go altogether and also you may well have flare ups from time to time.
Hope this helps. Don't be scared of it, it is under your control remember and you can come off it if you want. Don't forget too, that you will be monitored monthly by docs.
xx
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Date: 02.08.2010
From: Angela

Subject: Re: first dose of Methotrexate

Hi Marylyn, You sound so much like me when I started with RA. I was healthy and it hit me like ton of bricks, and I refused to take the medication at first it scared me that much.
I read all about RA and scared myself half to death.
I tried every natural remedy I could find,changed my whole lifestyle for the better, but it still beat me,my ESR and CRP were sky high, so I resigned myself to doing what I was told.
I started on sulfasalizine first 4 a day.and also the lanzoprazole for the tummy. After 7 months on that MTX was added , and I was terrified.
I was put on 4 tablets a week, and that was upt to 6,but I can honestly say, I have no hair loss, and no side effects, in fact within a few weeks I could walk much better, and had much less stiffness, the anemia has gone, and I feel as near to normal as ever.
Today un beknown to the rhummy I have weaned myself off the sulfasalzine,been off them for 6 months now, and it makes me feel much better about taking the toxic stuff because it is only 6 little tablets a week instead of 34.
Hope this helps
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Date: 02.08.2010
From: Si

Subject: Re: first dose of Methotrexate

Hi Marilyn,

Ok, well I'm 32, I was diagnosed with Psoriatic Arthritis last year and after steroid jabs that haven't really helped I was put on MTX (as I soon learnt the seasoned arthritis sufferers call it) in April. I was very scared, in fact in the session with the counselling nurse (who I had to see, and who was meant to allay my fears) she told me I was taking too much time at which stage I ran out and burst into tears. I was worried about all the possible side effects, I really didn't want to take something that could cause real problems. In the end I signed the consent as it takes so long to get a Rheumatology appointment. I then went back to my absolute star of a GP and spent almost an hour chatting it through with him, he answered my questions and gave me confidence. I have had regular blood tests and I've been fine. I'm taking 7.5mg a week and now my rheumatologist has put me on Salazopyrin, which I've been on for about 6 weeks now and I now take 2000mg a day. He's said that if this doesn't work he'll put me on Imfliximab when I see him again in Sept.
This whole journey for me has been very scary. I'm still coming to terms with having arthritis at 32. Also the fact I have now got psoriasis that a year ago I didn't have. My skin that was once ok is (when it's very bad) peeling off in strips. All I can say is stick with it, the side effects can sound scary, but weigh up that with the benefits that can be had. That's why the Drs keep a close eye on your blood tests to make sure everythings ok!
Take care!
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Date: 03.08.2010
From: Marilyn

Subject: Re: first dose of Methotrexate

Thanks alot Si, I have just taken my 2nd does. I just hope it helps. I too am very scared at the side effects but I have to try it. I just wish the so called experts could give you a little more time to explain things as it matters alot to the individual ( as we all are) Many thanks for your reply. Marilyn
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Date: 03.08.2010
From: Marilyn

Subject: Re: first dose of Methotrexate

Hi Angela, We do sound the same. I have just taken my 2nd does of MTX. I have also decided to wean my self off the salazoyprin (6 a day) . I am doing it gragually so its on my calender to reduce it every three weeks so by October when they want me on 6 MTX tablets I will only be on 1 salazopyrin as well. I hope my blood tests by then are still ok. I suppose I will have to tell the doc what I am doing.
Many thanks for your reply Marilyn.
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