Hi everyone, I having been on site for a bit to keep up with everyone's news, but I hope you're all as well you can be and looking for to the festivities next week.
I started mtx in August after my diagnosis of RA. I've been slowly increasing and I'm now taking 20 mg a week. The side effects initially weren't great, but wore off I think after my Gp inadvertently overdosed me on folic acid lol, but it did the trick. I had my third steroid injection nearly 3-4 weeks ago to keep me going til the mtx kicks in. The first two were great but this one doesn't seem to be as effective. It's helped with the pain, which is fab but the fatigue is making me feel pretty ill now.
I thought perhaps this was just me overdoing things as a busy working mum of 3 on the lead up to Christmas. Had my safety bloods done on Monday and rang up for result today to find out that my crp is still rising and my esr, which has always been normal, is elevated too, even after having the steroid injection. So, I'm guessing the mtx is not working at all. Don't go back to my rheumatologist til mid February and I'm just feeling pretty fed up now. Want to get this blooming disease under control so I can get on with my life.
I know I'm lucky really as it could be so much worse. At least my safety bloods were ok so I can enjoy a tipple over Christmas. I think my husband and kids are completely fed up with my complaining about being so tired all time, I know it's hard for them to understand.
Sorry to have a moan, just feeling jolly fed up. I've a week off work when I know I'll be charging around like mums do over Christmas, then back to work on the 30th. Work is so manically busy I can't take more time off and I feel I really need it. If I do take more time off, there'll just be more to do when I get back.
Sorry, I really am ranting now aren't I ... I must try and remember a friends humbling comment on FB about her 8 yr old son who has severe epilepsy, her wish for Christmas is that he's seizure free so that her can for once remember his Christmas Day. Maybe things aren't so bad. Rx
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Oh goodness - I'd have hoped that the MTX was kicking in by now Can you email your rheumy or nurse? What does your GP say?
I'm always tired but then I'm not working or chasing after 3 children - I hope that you will have a reasonably quiet, painfree Christmas & are not too tired to enjoy it.
Oh Pauline, mentions of doodles are always bound to cheer a girl up, thank you.
I've an appointment with my Gp on Monday afternoon so will chat things through with him and ask if he can email my consultant and maybe get my appt brought forward, I'll have to see what he says.
I'm sooo looking forward to Christmas with the family and have worked so hard towards it. I'm almost scared to stop going now as I think I might crash n burn if you know what I mean!! I've been looking forward to this weekend as it's the first quiet ones in ages, but don't know if I'll be able to kick start myself again on Monday lol!
Think I'm off for a Boris cuddle (that's my labradoodle), he never says no.
I am sorry to hear you are having such a rough time...always worse this time of year..I hope you find some respite soon and I wish you a pain free Christmas (as much as possible). Take care honey. Maryx
The fatigue is really hard to deal with and can be little understood by others. Your life sounds as if it would be demanding and tiring for a fully fit and healthy young woman so no wonder you're feeling the strain:-{
Is there any chance that you could reduce your hours - even if it's only for a while?
Have you looked at the NRAS publication on Fatigue? It's on the website and you can download it as a pdf.
I do really feel for you, you need a month off to draw breath and allow the meds to start working. Your esr and crp can go up if you've had or are brewing an infection so don't panic that the Mtx isn't working:-}
Be kind to yourself and post on here for support - we understand.
No it's been a bit tough but they have now given me a potential diagnosis which is a auto immune disorder and may be mixed with RA s, so I am waiting on biopsies on my hands and get a proper diagnoses, so sounds like we r in the wars together
Didn't think so last week! I went in expecting a new biological drip to be told I needed investigations ! A quick chat with everyone here and Victotia NRAS and a week later I think I am ok. ! Xxxxx
The problem with RA is that most of the time we look well so people have little understanding of how tired we can get! I think it's the worst side effect of the condition - well apart the pain!
Are you "sad" like me & are on any of the doodle forums? P x
No I'm not but I think I'm about to be!! Can you recommend any, particularly those with some very cute pics ... I do love my boy, he doesn't care how I feel, just loves to be with me
this is the 1st time I have posted on the forum although I have been lurking around and reading for a while ! I really feel for you , I too was diagnosed in August and have had 6 weeks of MTX so far so no change. it's miserable isn't it ? so tired and fed up too. nice to know I'm not alone. people don't really get how soul destroying it is. on oral steroids but doc seems too think they're not suiting me so slowly trying to reduce them so I can have depo-med injection. not the best week to be doing this I feel ! love to labradoodles ' I am a vet nurse and really missing the animals , can't do the job at the mo so off sick , at least I don't have to struggle at work too x
Hi Julie I'm so glad you've posted for the first time, but sorry you're not having a lot of success yet either. What a lovely job you have and I really hope you get yourself sorted to return to it soon, but I can imagine it's quite a physical job. I've had so much support from this site, everyone is always so kind and it's good to know you're chatting to people who really understand how you're feeling. I've also had so many laughs on here, so keep lurking!! Rx
thanks Rosie. yes love my job but tiring when you're healthy , not one bit of it I can do at the moment. look on the bright side , I get Christmas at home for a change. I will lurk no more ! everyone seems lovely and supportive x
Don't feel sorry for having a rant,if it helps you get it off your chest well all well and good. Sad to say it will take time to get your ra under control and to sort out the drugs out to suit you. WHy don't you get your children to help you out with the chores round the house,eg; getting things for you when your sitting doing a bit of resting. Explain to them all that at the moment they can't get your ra settled and you need all their help including hubby.Tell them you can't help moaning as you don't know what your body is doing to you and you can't explain to them how you feel. Also tell hubby if your crying just cuddle you until you stop,don't go and say stop crying you just want his arms round you until you feel calmer. Tell him it is a big service to you for him to cuddle you.
Get everyone organised before the big day.like get everyone help you get the vege and the meal all ready before the day. Get the children to set the table for you,so it saves you a job. I don't know whether this would help you or not,when our children were small we didn't cook on christmas day, we cooked the sunday or evening closer to the big day. We did that for several years.We had a buffet all day long and if anyone wanted something to eat they got it themselves. We always had a big breakfast,if you did this you could give this job to hubby.
I hope this has helped you and i wish you and your family a very merry and pain free Christmas.xxxx
Oh Sylvi thanks for your kind words and very sensible ones too. I really hadn't realised how low I was until last night. I'm sooo emotional. My children are 7, 9 and 10 and they don't know that I have RA. They know that I have a bit of a problem that can make me a bit tired but I've not been too sure how or if to explain it to them further at this point. They are helpful, particularly my 2 older girls and all have little chores too.
I do need to speak to my husband too and try and get him to understand.
What a fantastic idea for Christmas Day, I really like that idea. My mum and stepdad are coming Christmas Eve to Boxing Day so I'm not sure I can do that this year tho. My mum is struggling too as she has polymyalgia which isn't controlled either right now, and she has some other health issues too. I think we will probably sit preparing brussels on Christmas Eve and do as much prep to take the pressure off. I've nothing on at all this weekend except for taking my girls carol singing this afternoon for a couple of hours, so I'm going to be very self indulgent and do nothing.
Thanks again Sylvi, you've really helped. Have a great Christmas Rx
If you don't tell them they won't be able to support you,they are old enouth to know something is wrong and they can understand if you explain it to them. Why don't you do the main meal on the evening before xmas then you will have all evening to enjoy the meal then on the day you can all relax. I wish you a very merry xmas and a painfree one as well.xxx
Not much I can add to all these other comments but rest when you can have fun with the kids and if the house looks a mess. Will the kids remember that." I think not" they will remember the cuddles on the blanket with mum.
Oh bless you so sorry your having such a horrid time of it, Really not much i can add to all the lovely advise you have received apart from best wishes and a very large cuddle xxx
I've just had a depo injection on Tuesday to tide me over, and it is really working. I am wondering if how they give the shot makes the difference as the last two shots I had made no difference at all but this one I feel as though I do not have RA at all The biologic nurse gave me this one and it was different to the others. She definately made sure it was going deep into the muscle and took about 30/40 seconds to deliver the shot. It was the most painful one I have had but my goodness the difference. Think I will ask if I have to have another one for her to do it.. Rosie my nurse said if it made no difference to get n contact with gp and ask for short course of steroid tablets. Wishing you a merry christmas and hope you do get some relax time, make sure you ask for help. Jeanette
Hi Jeanette, it's really funny that you say that. The first injection helped a bit, the second was fab as you're describing and much better than the first. When my GP gave me this one, she just stuck it in and didn't feel for the right spot like the others did, and well, my bottom is quite big!! Anyway, it bled loads, I'm fact the GP was really surprised as is was literally dripping into the floor. The effects have been not nearly so good.
I will mention to my GP when I go in and see what he says. I nearly posted on it earlier to see if anyone had similar experiences.
So sorry to hear you're having problems. It sounds as though you've been on mtx for long enough to have an effect but from my (ten year) experience it is variable. It doesnt always work in a straightforward way and sometimes if you have a cold or something that's inflammatory I get pain. I hope you get some results and can also avoid stress over the holiday period.
Yes I am thinking I've given the mtx long enough, I'll see what my GP say on Monday. Thanks Cathie for your support and a very merry Christmas to you too xxx
Hi Rosie, how are you feeling today? Hopefully a little better. It sounds a little similar to when I tried mtx, the main reason I stopped were the side effects but I knew it wasn't really working as it was only the continuous steroid dosage keeping the RA at bay. If you feel you are really struggling don't wait until Feb....if you can try and get back to see you're rheumy sooner.
The fatigue can be so crippling sometimes.....we must all wonder how on earth we carry on feeling the way we do!
I hope you manage to get some rest over Xmas.....I know tell my family.....a little bit more forcibly now.....that they have to help out more. Take care of yourself....xxx
Hi luthien, thanks for asking today. I think I've almost reached my limit today. Haven't tried to do too much, although I did do a last minute tesco dash ... not good!! I really just feel so ill. But the thing that has just lifted me today is my middle daughter who is 9 and has just spent half an hour tidying up without my asking and making the house feel so much better, love her. Just that bit of helping from her has been amazing. I do want to tell my 2 eldest, but I'm so emotional right now I don't think I could do it without getting upset and that might scare them.
I am going to have a good chat with my Gp tomorrow, I'm not sure what he can do to give me some immediate relief, as I had a depo im injection on 28 nov. I don't think I can any more steroids, although he might let me take a very short course of oral steroids just for 4-5 days to get me over Christmas. I will definitely be asking him to try and get my rheumy appt brought forward.
The mtx has been making me fell quite sick again, has been giving me reflux and heartburn, so I really need to get something sorted.
I've just got to try and get through the next few days as best as possible and I will definitely be dishing out the chores to my family.
I hope you're feeling well. What did you take after you stopped the mtx, and is it working well for you? Thanks for asking after me today and I hope you have a really great Christmas Rx
Tiny step by tiny step. There is no shame in admitting to family that your are not supper woman.
Just a thought. I used this idea in a slightly different way.
In the hope of motivating every one and also letting them know how I felt and how important they were.
Re children and hubby.
Advent Callander of thanks for acts of kindness and why you appreciate them.
You could use post it's, envelopes, bits of torn paper.
Numbered affirmations for every one. Even if you have to search hard to find one!
Actually that would take too much precious energy.
So. When you are up to it.
Write a short note to everyone and why that helped you so much. pop one of those chocs your going to get for christmas and stick it under their pillow. Sometimes writing feelings down is easier. It also gives you space to reflect on what you have said and avoids feeling guilty for howling or getting or loosing your temper.
Keep on trucking
May you get sorted sooner rather than latter.
God Bless.
Ned
Ps life's too short too stuff a mushroom.
Get frozen veg. It was a revelation to me that you can even get frozen onions.
And for heavens sake stay away from the large supper markets today the queue in Waittrose yesterday was miles long. I abandoned me trolley. The co op will provide. The bake beans!
I shall start a new tradition I think. After all we all like beans.
I went onto a combi of Sulfasalizine & Hydroxycholorquine which helped for almost a year without any side effects. However, the RA broke through again. I'm now on anti-TNF's and just waiting for my 2nd go as the first one didn't work....!! :/
I'm sure that if you explain exactly what this is doing to you to your husband, then get him to sit with you to talk to your children you will be surprised at how supportive & understanding they will be. It's amazing how resilient and perceptive children are and they just surprise you.....!
I shall keep everything crossed that your GP has been able to help you and that you have a little more energy over Xmas.....but don't knock yourself out overdoing things...you need to take care of yourself. Sending big hugs xxx
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Can you email your rheumy or nurse? What does your GP say? 
The biologic nurse gave me this one and it was different to the others. She definately made sure it was going deep into the muscle and took about 30/40 seconds to deliver the shot. It was the most painful one I have had but my goodness the difference. Think I will ask if I have to have another one for her to do it.. Rosie my nurse said if it made no difference to get n contact with gp and ask for short course of steroid tablets. Wishing you a merry christmas and hope you do get some relax time, make sure you ask for help. Jeanette
Feeling fed up.
Feeling a bit desperate
First big flare
When will I feel a tiny bit better 
Ok, as it's coming up to Christmas I'll start with this one:
