My battle has been hard the last couple of weeks. I've been to see rheumy today and they are going to change me from methotrexate 20mg(8tablets) a week to injections what can I expect..?? Being in that office was over like a flash, wish could pop back tomorrow to ask her questions. I also take hydroxychloroquine and
Also been put on steroid tablets today as I'm really struggling with the fatigue side lately more so than the pain, some days are horrendous as I have a 4 year old and a 2 year old to look after.
Thanks x
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Cat111
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I've changed to injections. Obviously I would rather not have to do them but saying that they don't hurt and the me to jet pens are pretty fool proof. I use the instruction book and try and be mathodical and try not to get distracted. It's a huge leap forward for me. Good luck Mary
I can certainly sympathise having a 7 & 8 year old, it can be exhausting. I find myself going to bed at the same time as them some nights.
Before I was on sulfasalizine I was taking the mtx injections, I got on much better with this than the tablets and for a lot of people there are none or few of the side effects you get with the tablets, I was unlucky in this respect as I still had side effects hence being changed. It can take time to get the right meds for each person.
the rheumatology nurse should go through the injections and what to do; they may do it for you at first but I was encouraged to do it myself after the first time (saved a trip to the hospital for the injection) They certainly weren't a bother once u get used to the idea of injecting yourself.
take care
Ruth
Wow, you have a lot to cope with! Mothers are incredible and then when you add RA to the picture you somehow have to come up with more energy to cope. I am sure your clinic will support your self injections. I am a nurse and it still took me time to get used to doing the self injections, I am not used to being the patient! Take care & all the best, Doreen
I couldn't take the tablets they made me ill so I went onto the injection, which has been a lot better, very easy to do yourself now they are pens, I have mine on a Monday try and take it about lunch time, I feel a little crappy the next day bad head ect, but then I'm fine, don't worry about the injection it is a lot better than the tablets.
Thanks everyone. think I'm most concerned about having to go up to hospital one a week for a few times till they let me do it myself.
They have said it will be done on a Wednesday which is one of the days I do actually manage to get out to work( work don't know of my illness, if I have a bad week I blame it on the kids not sleeping!)Also I'll have to take the 2 year old up with me.
I seem to be in a much better place if I haven't had to visit hospital for bloods or check up etc... I guess it's a reminder I'm not well as normally I sweep it under the carpet to struggle on being a mum. X
I dont know anything about your lifestyle but do you eat well? I mean do you eat foods that give you energy rather than take it away?
I start the day now with 5 blended bananas, a heap of cinnamon and a pinch of nutmeg (tastes gorgeous). I am now totally addicted to that and cant see myself eating anything else other than raw food for breakfast. If you are eating stuff like milk and cereals for breakfast then you should investigate the nutritional nature of those foods (and not from the diary farmers website).
Honestly the best way to start the day is with a dawn meditation. You may feel sleepy and tired, but at least you know you are relaxed and giving your body the best chance it has to do its job of healing. If you do this you will be so much more composed and able to deal with fatigue better. After all its our minds that tell us we are tired, not our bodies.
It has been said 15 minutes of practiced meditation is equal to an hour or two's sleep!
If you would like to know more about meditation send me a message I would be pleased to help.
I can't imagine having had to cope with two tinies before I had really got the disease under control, so no wonder you're struggling. Poor you.
Fatigue can be a sign that your inflammation levels are rising - do you keep track of your blood results? That can be helpful in managing the disease. But the steroids should kick in quite quickly and will give you a boost. I hate the oral steroids as the make me so manic and give me awful mood swings, but have had them in the past when I've been really struggling.
I also swapped from tablets to injections, and as well as reducing side effects it was also like increasing the dose as it's much more effective. Apparently you lose 20-30% on the stomach if you take tablets. So hopefully that will have startedto work by the time you finish the steroids.
I hope you won't think this a bit pushy of me, and if so just tell me where to go. But it sounds as if you haven't really come to terms with having this disease, and that can stand in the way of getting it under control. To me, managing my RA is about more than just taking the tablets and hoping it will retreat into the shadows and let me live my life as I did before. I didn't really cope well until I accepted that I had to change more about my life, and pay more attention to looking after myself. Hard I know with two kids to care for, but rest, proper food and exercise are important. You need to help the drugs work, and also help your body cope with the potential side effects from the drugs. And wouldn't it be better to tell your work as you should get time off for medical appointments and so on.
For me the turning point was to stop thinking that I was ill (which I couldn't separate from thinking I was weak, pathetic etc etc) and recognise that I had a disease that needed to be managed. No different from a broken leg really, in that you manage that by not walking on it. Unfortunately RA doesn't go away like a broken leg, but once I'd got used to coping with it things got loads better. Trying to sweep it under the carpet doesn't sound very sustainable to me.
It varies, but if you get your blood tests done at your GP surgery then you just ask them for a print out of the results. I get mine done at the hospital so it's a bit more complicated. And then I write down the main ones in my monitoring booklet.....here's a link to one.
Over the years I've found that knowing more about this has really helped me. At first it cheered me up hugely to see the blood results slowly getting more normal. And since then it's helped to keep track of how I'm doing, and also to reassure me at times as when I feel rubbish there's a reason for it as it shows up in my bloods.
I also think that taking an interest has helped build the relationship with my rheumy and she now discusses more with me because she knows I'm trying to help manage the disease as much as I can.
My experience was very positive. The tablets made me nauseous and that stopped as soon as I was on injections. They now come a pens and it only takes a few seconds to inject. No fuss, no pain. Try to embrace it and do not worry. I wish you the very best.
Hello! I've been in your shoes. Or you are in my shoes? My kids are now 4 and 6. I was diagnosed when the youngest was 10 months old. I'm taking Humira by pen and Methotrexate by pre-filled syringe. I find the pre-filled syringe less painful than the pen, though I started with the pen. The nice thing about the pen is that you're not watching the needle be inserted into your body, but I was surprised to find that the syringe could be painless when inserted properly. Take a deep breath and exhale as you inject; it hurts more when you're all clenched up. It's over quickly and eventually you'll get used to it. I had two natural childbirths because I hate needles and now I am injecting myself weekly (plus the Humira bi-weekly). I wouldn't have imagined this in a million years 5 years ago.
DEFINITELY go to bed as soon as your kids go to bed. Ignore the laundry/dishes/mess. Get your hubby to help if possible. I discovered I had much more energy and could tackle much more going to bed at 7:30pm. It was even nice to do the dishes in the morning while making breakfast because the warm water felt good on my finger joints and helped loosen them up when my RA was less controlled. Things are much better now but I try to put myself first as much as possible and I know that I absolutely MUST get to bed by 9pm. 9:30pm is pushing it.
Thank you for your advice like you I have had my hands in the washing up bowl. I do get to bed early but I find I'm more tired in the afternoon and then wide awake at 9pm.
Thank fully my husband does a lot around the house and most of the cooking. thank you x
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