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Anyone On Methotraxate?
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I've finally had a diagnosis of Rheumatoid Arthritis. The Consultant thought it may have been reactive RA and would settle and I've been on a reducing dose of prednisolone for the last six weeks but couldn't get below 15 mg per day and it was getting worse. I've been prescribed 10 mg of methotraxate once a week going up to 20 mg in monthly installments,also I have to take folic acid once a week. I've been told that methotraxate can take months to work and not everyone can take it because of the side effects. I have to have blood tests every two weeks to monitor toxins or something. I would be grateful if there is anyone on AB who has had this treatment and could give me any indication of how long it took to 'kick in' as I'm trying to manage without too many steroids but when I stopped them two days before seeing the Consultant I could hardly walk I was in so much pain. Thanks.
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I'm sorry to hear that.
If you need the steroids to be able to walk then take them. Yes, the side effects can be unpleasant but if it makes the different between being able to move or not then some things just have to take priority.
Yes, been on Methotrexate and all kinds of other treatments, it's touted as the "gold standard" treatment for RA. I have been on it on tablets and self injections ("sub-cut"), from lower to higher doses and with and without other RA drugs at the same time.
My experience was that I found the side effects harsh and it kept raising my liver enzymes BUT many people take it without any problems for years with no or minimal side effects. The side effects do tend to decrease when stable on a dose for a while.
If you can tolerate it, it is a good maintenance drug and taken with some other drugs so if you do get side effects which continue or are really not nice then speak to your GP/Consultant or the Specialist Nurses.
Usually specialist nurses have a helpline in the department and can be enormously helpful so worth checking about that.
I have had advice and other meds which help to cope with some of the side effects, which has helped in the past, such as if you get any nausea or heartburn symptoms etc... if they are causing a big problem.
The folic acid is important and it can reduce some of the side effects.
Kicking in wise, as with many of the general drugs, rather than steroids, they can take a while, around three months I think for methotrexate but, again, everyone is different.
It can be seen as a scary drug and if you Google it, save reputable sites like Patient UK, Arthritis UK and NRAS (last two very helpful!) then it can make you unnecessarily nervous about the drug. It can take a while to get used to some of the what can or can't I take with it but just takes a bit of time and experience.
Useful to keep something with you with your dose on to show any GP/pharmacist to make sure you aren't taking any drugs which shouldn't be given with it, e.g. trimethoprim for UTIs. Some GPs won't think to check and I've had to ask for a different antibiotic a few times.
It really is a good mainstay drug and, as I said, many people take it for many years with no problems at all, I was wondering whether to post or not as it's just a drug that has never really agreed with me.
Hope some of this helps though. Not sure how it works on private but my department runs patient education mornings, which are really informative! Even had a general (not just RA) open day a few weeks ago with the staff and charities, physio, occupational health, researchers etc... there, great afternoon! There are always lots of leaflets around too but most can be ordered from NRAS/Arthritis UK.
Always good to speak to others who have it too though, it's not a very well understood condition by people generally who tend to confuse it with osteoarthritis, be prepared for all that :)
If you need the steroids to be able to walk then take them. Yes, the side effects can be unpleasant but if it makes the different between being able to move or not then some things just have to take priority.
Yes, been on Methotrexate and all kinds of other treatments, it's touted as the "gold standard" treatment for RA. I have been on it on tablets and self injections ("sub-cut"), from lower to higher doses and with and without other RA drugs at the same time.
My experience was that I found the side effects harsh and it kept raising my liver enzymes BUT many people take it without any problems for years with no or minimal side effects. The side effects do tend to decrease when stable on a dose for a while.
If you can tolerate it, it is a good maintenance drug and taken with some other drugs so if you do get side effects which continue or are really not nice then speak to your GP/Consultant or the Specialist Nurses.
Usually specialist nurses have a helpline in the department and can be enormously helpful so worth checking about that.
I have had advice and other meds which help to cope with some of the side effects, which has helped in the past, such as if you get any nausea or heartburn symptoms etc... if they are causing a big problem.
The folic acid is important and it can reduce some of the side effects.
Kicking in wise, as with many of the general drugs, rather than steroids, they can take a while, around three months I think for methotrexate but, again, everyone is different.
It can be seen as a scary drug and if you Google it, save reputable sites like Patient UK, Arthritis UK and NRAS (last two very helpful!) then it can make you unnecessarily nervous about the drug. It can take a while to get used to some of the what can or can't I take with it but just takes a bit of time and experience.
Useful to keep something with you with your dose on to show any GP/pharmacist to make sure you aren't taking any drugs which shouldn't be given with it, e.g. trimethoprim for UTIs. Some GPs won't think to check and I've had to ask for a different antibiotic a few times.
It really is a good mainstay drug and, as I said, many people take it for many years with no problems at all, I was wondering whether to post or not as it's just a drug that has never really agreed with me.
Hope some of this helps though. Not sure how it works on private but my department runs patient education mornings, which are really informative! Even had a general (not just RA) open day a few weeks ago with the staff and charities, physio, occupational health, researchers etc... there, great afternoon! There are always lots of leaflets around too but most can be ordered from NRAS/Arthritis UK.
Always good to speak to others who have it too though, it's not a very well understood condition by people generally who tend to confuse it with osteoarthritis, be prepared for all that :)
Another thought, what dose of pred are you on? If a higher dose of oral pred then it may need stepping down slowly and worth checking about that as your body needs to adjust back.
I find steroid injections enormously helpful, have had them as general ones, in the bum! They have got me through quite a few times when really bad and waiting for meds to kick in.
I have also had both my hips done and both shoulders joints done twice. Amazing stuff!
I find it much better to tolerate than the tablets as I don't get the side effects with them I do with oral pred on a high daily dose.
Give yourself time to settle and don't push it too much. I know what it's like not to want to be on lots of strong meds but this isn't a condition to be played with and it can take time to get your bearings with it and know more about how it affects you and get a handle on what you need when.
I've been there and have had to give in in some respects as it can make a big difference to how you cope with it on a daily basis.
I find routine and rest times are key, gives my body a good idea of what I need it to do when and can go on autopilot at times.
Occupational therapy can be very helpful to help you adjust and ideas to make life easier, so you could consider asking for a referral to them if you need it.
Physio can also help and my department has specialist rheumatology physios. Have had treatments like acupuncture and hydrotherapy and got exercises to help from them and my walking sticks too.
If you are struggling coping at any point, speciality rhumatology nurses can be a godsend!
I find steroid injections enormously helpful, have had them as general ones, in the bum! They have got me through quite a few times when really bad and waiting for meds to kick in.
I have also had both my hips done and both shoulders joints done twice. Amazing stuff!
I find it much better to tolerate than the tablets as I don't get the side effects with them I do with oral pred on a high daily dose.
Give yourself time to settle and don't push it too much. I know what it's like not to want to be on lots of strong meds but this isn't a condition to be played with and it can take time to get your bearings with it and know more about how it affects you and get a handle on what you need when.
I've been there and have had to give in in some respects as it can make a big difference to how you cope with it on a daily basis.
I find routine and rest times are key, gives my body a good idea of what I need it to do when and can go on autopilot at times.
Occupational therapy can be very helpful to help you adjust and ideas to make life easier, so you could consider asking for a referral to them if you need it.
Physio can also help and my department has specialist rheumatology physios. Have had treatments like acupuncture and hydrotherapy and got exercises to help from them and my walking sticks too.
If you are struggling coping at any point, speciality rhumatology nurses can be a godsend!
Hi Eve! I was hoping you would see this post and thank you for your great answer. I am too stubborn about the steroids , I will only take the minimum to get me by as I don't want to balloon, but am finding it difficult . Things are bad in the morning as you know. I have to take paracetamol to be able to get out of bed and downstairs but its no good really as an effective painkiller. Ibuprofen works OK in higher doses but I've read you are not supposed to take it with Methotraxate. I'm seeing my GP tomorrow so will check that with him. I've got a RA nurse who I will be seeing every 2 weeks and the Consultant every three months unless the nurse thinks I need to see him. Its been a big shock to go from someone very busy running around organizing businesses and family life to not be able to get up in the morning without pain and unable to function properly until about 2 pm. I took, OH with me to the Consultant yesterday as he was in 'denial' and convinced himself it was something I would get over quickly as I rarely get ill and usually try and work through it -GP said it was 'life changing' and it certainly will be but I'm fighting it best I can. I'm not sure an RA forum would be much good for me as I'm not one for dwelling on things but would like to chat to you now and again off AB if thats ok? -I will contact the ED with my email address to pass on to you and if you want to you can contact me -I'll leave that up to you I don't want to sound pushy. Thanks again for your support and advice.
Hi Eve we've crossed posts thanks for the extra advice -I'm down to 15 mg (three tablets) a day of pred, I tried 10 mg but couldn't cope. I'm going to lower my pred as and when the methotax kicks in. I'm on the start of this journey -it has started all of a sudden and very aggressive. The GP said my RA factor was the highest he's ever seen on first presentation . I've asked ED to forward you my email address . Thanks again.
hello, rwgarding getting steroids down, perhaps a gentler step down might help. After i had my baby, i was on 17mg per day - it took me 2 years to get off them completely ( i had been on them for at least six years) and i had to do a really slow come down (for example i took 16.5 one day and 17 the next then 16.5 again for 2 weeks, then 16mg per day for 2 weeks etc)
Regarding MTX, i was one of those people who couldn't tolerate it - i had to come off it eventually - ihad both tablets and injections but could not tolerate either. It does however work for many people. I think it's meant to take around 12 weeks for the full effect.
Sorry to hear of your diagnosis - i remember when i was first diagnosed - i went from an active 24 year old nurse doing double shifts, to not being able to get out of bed in the mornings. Have you seen an OT? It's really important so that you can start doing joint protection
Regarding MTX, i was one of those people who couldn't tolerate it - i had to come off it eventually - ihad both tablets and injections but could not tolerate either. It does however work for many people. I think it's meant to take around 12 weeks for the full effect.
Sorry to hear of your diagnosis - i remember when i was first diagnosed - i went from an active 24 year old nurse doing double shifts, to not being able to get out of bed in the mornings. Have you seen an OT? It's really important so that you can start doing joint protection
Just emailed you from my phone, didn't know you could get in touch through here like that, that's useful! :)
Having internet issues but hope this works! I was in my 20's too, a lawyer working mad hours and a great social life. Had to make some huge changes but it is what it is. Got a nice little part time admin job where they have been great with adjustments to help me and it's important to me to keep working as long as I can.
It can be difficult as I'm on my own but, you cope with what you have and I think it can surprise you just how resilient you can be and what you learn to cope with. Not saying it is easy but even when changes have to be made, it is not necessarily all bad.
Having internet issues but hope this works! I was in my 20's too, a lawyer working mad hours and a great social life. Had to make some huge changes but it is what it is. Got a nice little part time admin job where they have been great with adjustments to help me and it's important to me to keep working as long as I can.
It can be difficult as I'm on my own but, you cope with what you have and I think it can surprise you just how resilient you can be and what you learn to cope with. Not saying it is easy but even when changes have to be made, it is not necessarily all bad.
Ps, so agree with bednobs, who has been a huge help to me. Early joint protection is a big thing and OT's are great for that. Might take a while to learn how to adjust to it, using bigger, less affected joints/other body parts like the side of your arms, to do the work and such but you do adapt and I do things without even thinking now.
Sometimes it's good to raise an issue, rather than struggling with it, as other people in the same boat (and OT's etc...) can have some great ideas as to how you can approach things better.
Sometimes it's good to raise an issue, rather than struggling with it, as other people in the same boat (and OT's etc...) can have some great ideas as to how you can approach things better.
Oh wow! I haven't seen a pair of tights for a long long time :) Leggings are my mainstay these days, buy them a size bigger so easier to get on!
Someone recommended these pill popper things the other day, need to get some ordered as they help get your tablets out without all the pressing! So need some of those, I hate the weekly ordeal of trying to get all my meds into morning and evening doses into those weekly things.
Just been on a course day and had to get an wear office smart stuff, had an absolute nightmare with shopping and trying things on, had to get big stretchy black trousers and the jacket was a pain to get on and off, let alone the faff of trying to get a blouse buttoned! Glad that's done an I'm back to my no button or faffy stuff easy to get on clothes!
Someone recommended these pill popper things the other day, need to get some ordered as they help get your tablets out without all the pressing! So need some of those, I hate the weekly ordeal of trying to get all my meds into morning and evening doses into those weekly things.
Just been on a course day and had to get an wear office smart stuff, had an absolute nightmare with shopping and trying things on, had to get big stretchy black trousers and the jacket was a pain to get on and off, let alone the faff of trying to get a blouse buttoned! Glad that's done an I'm back to my no button or faffy stuff easy to get on clothes!
Hi -I've just got back to the thread,I've been submitting Tax Returns and had to turn AB off as its too much of a distraction. It is early days but will mention about OT when I see the RA nurse on the 29th. I'm still in a bit of denial at the moment thinking I'll get over this like a bad dose of flu . Bednobs -good idea about the steroids -I have tried taking just 10 mg but can't cope so maybe I'll try 15 one day and 10 the next see how I get on.
What sort of things (side effects) would stop anyone being able to use MTX ?
What sort of things (side effects) would stop anyone being able to use MTX ?