Date: 05.05.2012
From: Deborah
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Subject: Hi everyone.
Hello everyone,
Hope everyone is feeling not to bad at the moment.
Just wanted to let you know that I am still feeling ok actually quite well except my back is bad at the moment and feeling the rest of my joints and notice that my left cheek bone is starting to pretude,also the bone below my left ear has swelled and am taking bad headaches, so the omega 3 etc is helping with the pain but it is obviously not stopping the damage the disease does. So I am starting back on mtx 25mg again this week as I received a call from my rhummy nurse last week and when I told her that I had not be taking my mtx she really scolded me and said that i will suffer from a massive flare-up so I will just have to go back on it and have to see my rhummy next month to get another assesment to see about going on the bio-logics but I will wait and see how I feel on the mtx first as I have changed from the injection to oral and they have issued me with anti-sickness tabs as well.I think the tablet form was much better than the injection does anyone else feel the same? How is everyone at the moment? Hope that you are all well.Deborah xx.
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Date: 05.05.2012
From: Colin W
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Subject: Re: Hi everyone.
lol Deborah btw hated the injections myself , used to waste most of it , be lot happier if they were a pen like the bio drugs & on 25mg tablets myself , how many folic acid you taking a week
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Date: 05.05.2012
From: Deborah
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Subject: Re: Hi everyone.
Hello colin,
They have put me on 6 tabs a week 400mcg and are giving me anti-sickness as well, pity they had not did that at the start then i would not have had to injure those horrible injections as I found they were making my skin so painful, but then pa affects the skin as well.
Keep well Deborah.
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Date: 05.05.2012
From: Colin W
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Subject: Re: Hi everyone.
Deborah its not enough folic acid , they give you anti-sickness tabs which dont think you need if they give you more folic acid I am on 12 times that a week + omeprazole , hope they prove me wrong
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Date: 06.05.2012
From: Deborah
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Subject: Re: Hi everyone.
Hi Colin, Thankyou for letting me know, what is wrong with these people.I know that the more folic acid you take the less effective mtx is but at the end of the day they dont have to deal with the problems their decisions make. I am also on omperazole 20 mg daily.Can you tell me how much folic acid you take on a day to day basis thankyou as I will just buy them and make up the difference. Thankyou again for taking the time to reply to me take care Deborah.
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Date: 06.05.2012
From: Colin W
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Subject: Re: Hi everyone.
hi Deborah you are right its because they think Mtx is less effective , I take 6 tablets a week , the ones shown here the 5mg ,& not on Mtx day , main reason was my Alt was up around 165 & dropped back to normal , only thing is you need prescription in UK for them & can only buy the 400mcg over the counter you could try it as you are & see how you go on http://www.chemistdirect.co.uk/folic-acid-tablet-5mg_4_14476.html?utm_source=Google%2BProducts&utm_medium=Google%2BProducts&utm_campaign=Google%2BProducts
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Date: 06.05.2012
From: Deborah
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Subject: Re: Hi everyone.
Hi Colin,
I will try the 6/400mcg in the meantime but if I have any problems I will go to my doctor and have him give me the 5mg so thanks for that you learn something new everyday.Deborah.
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Date: 07.05.2012
From: rhona
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Subject: Re: Hi everyone.
Hi Deborah,
Hope you are feeling a bit better. I also have the 5mg of folic acid, so like Colin, i don't know why you should have been prescribed such a small dose. That would explain why you had such a sore mouth ulcer not so long ago. I had been taking 5mg once a week but now that i take 25mg of methetroxate i was told i can take it up to 6 days, i usually take it about 3 days per week. take care. xx
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Date: 08.05.2012
From: Deborah
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Subject: Re: Hi everyone.
Hi Rhona,
How are you keeping? hope you are well at the moment. Will get the doc to get me a prescription for the larger dose of folic acid. I would say it will be next week before I start the mtx as I am waiting on a letter from the rhummy the doc won't prescribe it until he gets this letter so will have to wait. I have been off mtx for 4 weeks now and dont feel much differnent just much the same but will go back on it as I am scared of the damage I am doing my joints.You take as well rhona xx Deborah.
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Date: 08.05.2012
From: davina
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Subject: Re: Hi everyone.
hi deborah the nurse in my opinion the nurse had no right have a go at you, she should have been supportive and explained it nicely, also understood why your not taking the injections. hope your well and have you tried other drugs that are available? x
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Date: 10.05.2012
From: Deborah
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Subject: Re: Hi everyone.
Hi Davina,
Yes I think the nurse was worried about me not taking anything although they dont understand what it is like to have to live with these medications and did you notice how they always seem to be in a hurry you can hardly get a word in edgeways although when that happens I just shout over her and make her listen to me because at the end of the day if it was not for people like me she would not have a job. I have to go on mtx again, then I see my rhummy in june to have another assesment and then I must go on a waiting list for 3 months to go on any bio-logic. I thought that I had already done all that but apparently not and then even if they do get me any form of bio-logic it means an injection and me and injections do not get on as my skin is so sensitive but they might know of something different.lets hope so. At the moment I am feeling ok but am glad that I dont have to much to do as I get so tired and joints are a bit weird.Hubby is well and the rest of the family are fine. My grandson is calling me nan na now he will be a year old in june he is trying to walk but won't creep he just trails himself along with his arms and my granddaughter is creeping she is a year in june as well.
Hope your family are all well and you are ok yourself at the moment Deborah xx
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