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Rank: Advanced Member
Groups: Registered
Joined: 9/9/2010 Posts: 77 Location: Hampshire
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Hi I had an appointment with the consultant yesterday. I have come off sulfasalazine because of an extremely sore mouth. I took my first methotrexate last night it is a very low dose and I'm to take one a week on the same day and folic acid the next day. I am taking it at night just in case there are any side effects. Fingers crossed it works as I was quite nervous about starting on it as its such a strong drug. Take care Debs
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Rank: Advanced Member  Groups: Registered
Joined: 3/8/2010 Posts: 914
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Hi Debs, This is the gold standard for RA, it is a strong drug and if you're anything like me you will worry. But 4 years on I have had no problems and I keep extremely well. Taking it at night is a good plan but be positive that it will work, I believe this makes all the difference. I am on Hydox too, and Folic acid the day after. Hopefully you will feel the benefit very soon, 12 weeks is the time I found to make a difference. I too started of on a low dose and built it up to 15mg which I still take. Keep positive and fingers X'd this will help you. Lorna x
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Rank: Advanced Member  Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Hello Debs
Sorry to hear that you have to change drugs. Yes it is all very daunting when you have to start a new drug. I was on mtx but I had to stop because it upset my liver. It is easy to take but take the advice to take it at night as it does help as I remember.
Good luck you should know a difference within about 6 wks .
Rose x
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Rank: Advanced Member  Groups: Registered
Joined: 6/18/2010 Posts: 351 Location: Herne Bay Kent
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Hi Debs Sorry to hear that the Sulphasalazine was not suitable but as has already been said Methotrexate is the gold standard treatment for RA and it works very well for lots of people. You are doing all the right things by taking at night and I really hope it works well for you. Your progress will be monitored closely and you will have regular blood tests. The trouble is that looking at the side effects of drugs is always a frightening experience, even for paracetamol! I have been taking 20mg Methotrexate for about 4 years without any problems. All the best Sue
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Rank: Advanced Member  Groups: Registered
Joined: 3/28/2011 Posts: 956 Location: North Preston
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Hi Debs
I have been taking mxt for 8 years now without any side effects. I take it at night to avoid any feeling of sickness and I can honestly say I have had no problems with it. I hope this is the case for you too and that it starts to work very soon. It takes a dfferent amount of time to kick in with each person but it seems to be around the three month stage before any real benefits are felt. Good luck with it.
Sheila x
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Rank: Advanced Member
Groups: Registered
Joined: 9/9/2010 Posts: 77 Location: Hampshire
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Hi Thank you for replying it has certainly helped knowing that others have been successful taking methotrexate. So far so good I have not experienced any side effects so fingers crossed it stays that way. Debs x
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Rank: Advanced Member
Groups: Registered
Joined: 10/17/2011 Posts: 40
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Hi Debs I have been on mxt for about seven months now and I take 20mg on a sat and the folic on a wed I have to agree with the other replys in that it is the gold standard and I have felt better for being on them all the best
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Rank: Advanced Member
Groups: Registered
Joined: 9/9/2010 Posts: 77 Location: Hampshire
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Hi All As you know I started on the mxt at the beginning of the week. I washed my hair this morning and as I combed through the conditioner loads of hair came out onto the combe  I am really upset and now panicking. Could this be a result of the mxt? I see it is listed as a possible side affect and I have never experienced the amount of hair loss that came out this morning. I hope I am not over reacting and I feel I should let the rheumy nurse know. I feel really upset  Debs x
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Rank: Advanced Member  Groups: Registered
Joined: 3/28/2011 Posts: 956 Location: North Preston
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Hi Debs
I know how upsetting the hair loss can be. It is probably because you have just started the mxt and it is a shock to your system. I was experiencing this after dropping one drug and changing to another. It has settled down now and yours will too. I would ring your rheummy nurse and tell her though, she might advise you to take more folic acid to counteract the side effects. This helps a lot but be aware that the more folic acid you take the less effective the mxt will be. It is a fine balance sometimes. I hope you go on ok with it.
Love Sheila x
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Rank: Newbie
Groups: Registered
Joined: 8/10/2011 Posts: 5
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Hi am just curious after reading the post about Folic acid making the MTX less effective, when I first had all the many blood tests it was found that I needed to take folice acid once a day,which I am still taking daily, but 7 weeks ago I started taking MTX (still taking the folic acid daily), do you think I should mention this to my nurse, I would hate to think that the folic acid could be making the MTX less effective and I dont need so many each week.
John
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Rank: Advanced Member  Groups: Registered
Joined: 9/3/2011 Posts: 717 Location: Torbay
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Yes you should check this with the nurse. I have been told not to take the folic acid on mtx day. Other people only take one folic acid dose per week. I don't think I have so far heard on anyone who takes folic acid on the same day as they take their mtx, but as I'm quite newly diagnosed myself I could be wrong. Good luck from Naomi.
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Rank: Newbie
Groups: Registered
Joined: 8/10/2011 Posts: 5
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I was told just to leave the folic acid out on the day I take the mtx, but reading others quotes they mention that folic acid makes the mtx less effective, I will check with the nurse to see if I need to take 6 per week. Thanks for the advice. John
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Rank: Advanced Member
Groups: Registered
Joined: 9/9/2010 Posts: 77 Location: Hampshire
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Hi All Since the 17/11/2011 when I noticed hair loss after I started on mtx I called the hospital and was told to stop taking it which I have done and I have noticed that although I am still loosing some hair it is not as bad as it was. I also visited my doctor who checked my scalp. It does seem to be the mtx that has caused it and I am really disappointed that this has happened. I have an appointment in January at the hospital and I don't know what tablets will be offered to me as an alternative. I am only taking 1 x hydroxy at the moment. I am suffering pain in my knuckles and my left index finder has swollen, but apart from that I am coping with the RA at the moment. I was so upset by the hair loss as if its not bad enough having RA!! I am now paranoid about my hair  and I am not at all vain!!!!!! It doesn't help having fine hair in the first place!!!! Oh well onwards and upwards as they say Take care everyone Debs x
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Rank: Advanced Member  Groups: Registered
Joined: 11/20/2010 Posts: 244 Location: Cornwall
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Hi Debs, Shame the MTX hasn't worked for you but there are plenty more options so don't despair! I've got fine hair as well and although there's definitely less of it nowadays and the curls seem to have changed in some way its not as bad as it could be. I would be mortified if it came out in handfuls! Keep coping Debs and good luck with your appointment in January. Sara
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Rank: Advanced Member  Groups: Registered
Joined: 9/13/2010 Posts: 786 Location: east anglia
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hi debs, i am 25mg mtx and 6 days folic with hydroxy thrown in i am fine i take mtx am as within about 1/2hr, i feel a surge of energy for about an 1hr so i get the chores done then after that i need to sleep but we all find our thing with it,i feel loads better with mtx,i am on inj now much better to handle for me the tabs made me feel sick, the hair didnt happen with me at first but i did get it cut shorter in case, i do lose a little now but i am not one to bother that much,i asked my nurse about losing hair and was put on folic 6 days instead of just 1 so it helped,all the best,dorothy
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Rank: Advanced Member
Groups: Registered
Joined: 9/9/2010 Posts: 77 Location: Hampshire
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Hi Since I came off mtx before Christmas due to hair loss I've only been on 1 hydroxychloroquine a day. I've had some awful flare ups in my shoulders and wrist. I had my hospital appointment yesterday with the rhuemy nurse and I have now started on lefunomide one a day but I have to stop taking the hydroxy. I really hope this tablet works but I feel very nervous about possible side effects after the hair loss suffered by mtx. Fingers and toes crossed that this works!!! Debs  xx
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Rank: Advanced Member  Groups: Registered
Joined: 9/13/2010 Posts: 786 Location: east anglia
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just to say, hope all goes well for you,every time a change is needed we all worry and get nervous,try and keep positive, dorothy
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Rank: Advanced Member  Groups: Registered
Joined: 6/18/2010 Posts: 351 Location: Herne Bay Kent
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Hope all goes well with the new drug and that you do not suffer any side effects. Just to say that when I first started on Methotrexate my hair got a lot thinner and I used to notice a lot of hair loss when I washed my hair. However this has all settled down now and I still have a full head of hair. All the best Sue
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