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Rank: Member
Groups: Registered
Joined: 2/7/2011
Posts: 15
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Hi everyone: My name is Jan and I was diagnosed the RA last August. It does not show in my blood so if therefore seronegative. I also have coeliac and thyroid disease. Basically, my immunise system stinks.
I started MTX after deliberating for a couple of months. I could not tolerate Sulphasalisine due to stomach pain and liver count increase. I decided to take the MTX in the late evening. The following day I felt a bit sick but no other symptoms so far. I will be monitored very closely due to my blood being affected with the Sulphasalasine.
My RA seems to be localised so far in my knees. Walking is becoming a challenge with the swelling and I'm looking forward to getting more mobile.
I would love to get a puppy and I've recently reduced my working hours to 2 days a week. Any thoughts on this. Do you think it would be too much. Just me and hubby at home now but it is a challenge just doing the daily grind.
I'm looking forward to getting to know everyone.
Best wishes
Jan
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Rank: Advanced Member  Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Hello and Welcome Jan,
Welcome to the forum which you will find great for info, friendship, humour and the inevitable
moans.
Sorry you have RA I hope mtx works well for you. Fingers crossed. I have been on mtx and
it has failed and also suplh, hydro, and leflunomide so I am starting TNF / humira shortly. Really hoping
this will work as diagnosed in late 2008 so really getting fed up with the pain swelling and constant
fatigue
Keep posting
Rose x
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Rank: Advanced Member  Groups: Registered
Joined: 9/27/2010 Posts: 136 Location: Stockton on Tees, Cleveland
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Hi Jan
My name is Louise and I am 49. I was diagnosed with RA two years ago. I am self injecting Enbrel and also taking Leflunomide and a lot of other medication. I suffer mainly with my feet, knees and hips but thought I would comment because I have recently got a new puppy to go with my 10 year old dog. Max, my new puppy, is thirteen weeks old and I have had him since he was six weeks old. He has brought so much joy into my life because I have to take him for walks and this means no matter how much pain I am in, I still go out. He is only a small dog, a lowchen, so I suppose he could manage without exercise if I really couldnt take him out. Think carefully about it though Jan because puppies mean toilet training, lots of accidents and are very tieing if you like to go away. Hope you manage with the MTX.
Louise
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Rank: Newbie
Groups: Registered
Joined: 2/8/2011
Posts: 2
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 I have just joined for support after 8 months of pain and frustration I eventually,on 3rd visit, found a Gp who listened to me and agreed to refer me to a rheumatologist. The waitng list was 10/12 weeks so went private and was it worth paying the money! Got a result within 2 weeks and yes it was a bummer being told I had RA but at least I can now look ahead and what it will bring me-not all doom and gloom I hope. The consultant has been brilliant and transferred me to NHS and I will see him at the end of the month. His plan is to start me on MTX which does fill me with dread so any feedback on what to expect with this would be appreciated. Before I start the Methotrexate what other tests besides blood tests have to be perfomred-if any? Can anyone enlighten me please?
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Rank: Advanced Member
Groups: Registered
Joined: 5/19/2010
Posts: 384
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Hi Jan,
Welcome to the form, which I'm pretty sure you will find so useful and helpful if you have any queries or need advice.
My name is Anne 50 years old and I was diagnosed last May and started straight away on 20mg weekly MTX now been increased to 25mg.
Ollie, you sound just like me when I came on here last year, frightened to start taking MTX but honestly with me I had no bad side effects apart from slight loss of appetite for 2 days after taking it, slight nausea and tiredness. I also had a chest x-ray.
Jan if your not sure about a puppy how about a dog slightly older that has already has some training, will save you a lot of work.
Look forward to hearing from you.
Anne x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,689 Location: Durham
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Hi Jan, and welcome to the forum, though sorry you have been diagnosed with RA. I hope the MTX works for you. I was on SLZ as soon as I was diagnosed, and though I had no bad side effects it didn`t work for me. You will be monitored closely while on the MTX. As Louise says, puppies are lovely, but can be hard work. We`ve had our Golden Retriever since he was 6 weeks old, and he will be 13 this year, so now he`s almost as slow as me! Ollie - welcome to the forum, and glad that going private worked out well for you : you`re not the first one on here to have to take that step. It`s good your rheumy has put you on his NHS books. Before starting MTX you would normally be given a chest X-ray. I was given Lung Function tests too. Hope it works for you. You should be given folic acid to take alongside the MTX. Take care, Kathleen C x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 263
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Hi Jan, I am Kathleen and i have RA and Coeliac . I did put two messages on for you a few days ago but for some reason they vanished the same day. I self inject mtx and take folic acid and Plaquinel. I have had RA for about six years and its controlled quite well with the mtx etc. I have a little yorkie called Maisie she is lovely but very lively , if i dont take her out she just runs around the house and garden. A young puppy would be hard i think so like the other lady said i would think about an older dog. Welcome to the forum you will get a lot of help here . I would be lost without all the lovely people. Kathleen Mc.
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Rank: Newbie
Groups: Registered
Joined: 7/2/2010
Posts: 3
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Hi Jan, Like you I have also started Methotrexate this week (Sat night). I had the prescription for about three weeks before I could find the courage to take them, I just kept putting it off as I was so frightened! In the end my husband literally stood over me whilst I took them! I took the tablets at night after reading many posts. Now after all that worrying I have only had very slight nausea the following day. I was told to take folic acid every day apart from the Methotrexate day.
Ollie, I had blood tests and a chest X-ray before starting MTX. I was also advised to have a pneumonia jab (which I had already had previously).
Looking forward to getting to know you.
Diane
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Rank: Newbie
Groups: Registered
Joined: 2/8/2011
Posts: 2
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Hello Jan
I have just been diagnosed also and am back to see Consultant next week to decide if I want to go forth on Mtx
What has not been explained is what trests I will have to undergo before going on the drug
My thoughts are, having done the research on side effects etc that I would need to have a few investigations first-is that right? What did you have to go through before starting Mtx?
Thank you for you response
Chrissie
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
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Hi Chrissie I think it depends what other health problems you have but certainly a full blood assay is undertaken to check liver, kidney and other functions. Often an X-Ray of the chest will be done to check for any lung damage, latent TB, or perhaps ongoing low grade infections. BP will be checked as a standard precaution. Methotrexate suppresses the immune system so it is important that a range of tests are done prior to commencing the treatment. Methotrexate is the gold standard drug in the treatment of RA and whilst it is toxic, as are all RA drugs (they have to be to do the job!) it is not to be feared. I really don't understand why people are so afraid of this drug ... it's intended to make you feel better!! All RA drugs have a long list of possible side effects; this is no different to the others. I took MTX for about ten years and it is one of the most effective drugs I have ever had. When I stopped I felt like I had lost a friend and along with it control of my RA. Hope that helps Chrissie. All the best, Lyn x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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agree with lyn. mtx is the gold standard med for ra. you do need monitoring on it. mtx is so well known the first sign of ANYTHING going awry they sort it out how to be a velvet bulldoser
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Rank: Member
Groups: Registered
Joined: 2/7/2011
Posts: 15
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Dear all. Just another update on the MTX story. Took my 2nd dose Monday at dinner time (was advised by pharmacist to not take on empty stomach but eat some food then take meds then complete meal). I noticed that the tiredness from the first dose carried over into the second and just kept getting worse. That and the loss of sleep. Was so completely exhausted that I could barely fix something to eat (only oven chips). I mustered up the energy to wash and dry my hair for work the next morning, went to bed and took two codydremol? hoping to get to sleep. I had a horrible night. Hardly slept a wink. Was even more exhausted! I called my GP for an emergency apt. I'm hot and cold and my skin feels like it is crawling. Staring to get itch. I've got a sick not for two week to see if there is an improvment with my next dose.
About the puppy issue. I only work 2 days now and I don't mind the clearing up and training part. If anything it gives you a reason get up and get on with things. That's why I won't give up work yet. I was unemployed for 5 months and was totally miserable and lonely. I would only get a small dog. I have a cat but he stays indoors.
I agree with everyone else about the tests being carried out prior to meds. My problem is there is no rhuemmy nurse at my hospital. No one to ask questions.
Hope everyone is well.
Jan
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Rank: Advanced Member
Groups: Registered
Joined: 5/19/2010
Posts: 384
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Hi Jan,
From memory the tiredness does lessen after a while, I still have an early night the following two days after taking MTX and I have been taking it for 10 months now, but feel that is a small price to pay if the drugs are helping with RA.
Can't comment on the "skin feels like it is crawling or feeling itchy", but sure someone will be able to help you.
I also don't have a rhuemmy nurse, but see my doctor who seems to know whats he talking about, and fairly clued up on RA.
I have two cairn terriers and they are lovely abit yappy but they are mummys girls and my support with four men in the house. They are sisters from the same litter but didn't get them until they were older and had already been trained.
Really hope things settle down for you with MTX.
Anne x
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