Just need to let off some steam

As some of you lovely people know, I was diagnosed mid December with RA after months of pain and stiffness and put on Methotrexate. My mum had severe RA for 30 years preceding her death in 2009 so I've seen how severe it can be. I saw my consultant today (still private due to NHS waiting list...) who agreed that my RA was totally not under control on 15mg of Methotrexate. So, he's upped my dose to 20mg and added in hydroxychloroquine and amitriptyline to help me sleep. He'd like me to start methotrexate injections once I'm on the NHS. All very positive. Then he gave me my DAS. I've not had mine done before but I understand how important it is to know and to aim for a lower score. So mine was 4.85. I was actually quite shocked. My blood tests had been normal. He mentioned biologics. I was expecting in the 3's. Medications don't frighten me but I just really wish my mum was hear to talk to about it all, she knew all about RA and knew the NRAS ladies (some came to her funerals). I can talk to my aunt but she's not well with her RA. My husbands great but doesn't know what to say. I can't communicate easily with my dad over FaceTime...I'm not seeing him until the summer. My sister is really busy (lives 3 hours away) and sometimes I just really want my mum to be here to hold my hand. Mind you, she was so ill the last few years she found the whole disease so hard to see in her daughter. Not sure how she would have felt about all this. My twins turned 2 last Sunday and this week has been the hardest week. They've been poorly with a horrid virus which has led to ear infections and conjunctivitis and I've picked it up on top of it all. I couldn't send them to nursery yesterday as they weren't well enoug but they weren't ill enough to be in bed all day either! A long week. Thankyou for reading. I'm such an upbeat, busy person but occasionally I find these moments a bit overwhelming but nowhere to turn too.

9 Replies

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  • Hi Jimack, it sounds as if you've been having a really rough time, no wonder you need a bit of support, especially when you've had to watch your mum battling with the same wretched disease.

    I feel so lucky, not that I have RD, but that it didn't rear it's ugly head until after I had brought up my three daughters. I am filled with admiration for anyone trying to cope with young children, while trying to fight this disease, and with two year old twins you certainly have your hands full! I find it difficult enough to cope with grandchildren....who go back to mum and dad!

    It's dreadful that you have had to resort to private treatment, particularly when you have your family history. Unfortunately, it seems that some people have a tremendous fight to get the treatment that they are entitled to.

    You mentioned the NRAS ladies, is there a group locally where you could get some support? There's also the NRAS helpline, where you would be able to access support, and advice about your lack of NHS treatment.

    I do hope that the extra MTX helps, and you all get rid of the bugs. Please don't underestimate how much you are coping with, and try to get a little time for yourself......easier said than done I know.

    You're in my thoughts, do look after yourself. Mavis xx

  • Jlmack good morning. I understand how you feel about the loss of your mum. Mine would have been devastated to see me suffer and i am sure your mum would be the same,and i bet she would feel guilty that she has passed this horrible disease onto you. I will be you mum in absenter if you like,i will give you hugs and lots of support if you want. Just message me on here if you don't want people to know what your saying.Just go to your name and use the drop and it will show you where your message button is. When you have your RA is under control you should be able to live fairly normally. HUgs from me.xxx

  • Hi jlmack

    I can relate so much to your post. My son is now 10 but I had RA when he was born and it was such a struggle sometimes I remember celebrating each milestone with glee especially when he could climb into his car seat. Now I'm waiting for him to be able to make me a cup of tea lol : )

    You are not alone we will support you and NRAS have a fab helpline and volunteer support system. If you are needing help ring NRAS and they will talk to you and also arrange for a person with RA ( maybe me) to ring you and listen.

    Www.nras.org.uk

    0800 298 7650

    My son and I have both been plagued with bugs since he went back to school last September there is so much going about isn't it. I hope your twins are better soon. Do you have anyone to have them during the day for an hour or two? I know there is now free 2 year old provision in schools now. Next year will be a bit easier when they are at nursery but you must rest while they are there. I'm like you and have no family support. My sister is abroad and my parents hundreds of miles away. When your twins start school you will make great friendships with the other mums and they will be a huge support to you. My fingers are crossed that the extra mtx and added hydroxy helps calm your sore joints. You would have to fail on mtx to be eligible on anti tnfs but your private doc was prob letting you know there are lots of other drug options. There are guideline on the nice website if your intertested.

    Www.nice.org.uk

    Take care gentle hugs

    Kikideelili x x

  • So sorry to hear about your situation. My mother developed ra in the 1950s when the treatment was very different. She died more than ten years ago and in the last few years was given methotrexate, new wonder drug! Her situation was much worse than mine now, there are all the biologic meds. It's not easy with children either, so I hope you can find a way of resting when they're not around.

    I don't think my mother really faced up to me having RA. I expected her to know what to advise but things had moved on so much. I think the best thing I can say is that treatments have moved on in the last few years, so your prospect is likely to be better. I really hope so!

  • I'm sorry things are rotten for you just now. I'm hoping that once the HCQ starts acting plus the increase in MTX has an affect you'll start to feel a bit better. I know just how it is at times, just having your mum hold your hand makes things right in the moment, you must miss her dreadfully. I lost mine in my early 20's & was rushed into hospital as an emergency the following year. I also found it hard being very poorly & her not being there. Oddly though & purely by coincidence when I was admitted the single bed room I was put in was the same one she died in almost exactly to the day the previous year & I drew peace from that, even though I was so ill, almost as if she was watching over me. I'm not a spiritual person but there you go!

    Fingers crossed your transfer over to the NHS goes smoothly, you may find you react to injections better, I did but too well at 20mg so had to come back down to 15mg & HCQ was withdrawn at the next appointment 3 months later. That was in March 2011 & with the addition of low dose steroids more or less where I was then I still am now med wise. I'm also prescribed amitriptyline, recently increased to 50mg & it's making a big difference, I'm sleeping well now so hope it helps you too.

    Do you think contacting your mum's NRAS friends would help you, or phoning the helpline to speak to someone who's been in your position?

  • Hiya lovely ladies. I realised I never responded to all your kind replies. I had a good cry on my husbands shoulder over a bar of Dairymilk and we had a good chat and I feel better emotionally. Just got to work on the physical part of me, but at least one thing is on the way. Kikideelili I took your advice and rang NRAS yesterday to ask whether someone could call me back with young children etc, so that's a positive step. Everytime someone asks why I'm wearing my wrist supports and I explain, it's a step closer to accepting my diagnosis (which is better then denial) and generally I've had support. The obvious comparison to my mum happens a lot, but at least people are trying. Not sure about contacting mums friends at NRAS, they are all so busy and I don't want to disturb them or embarrass them if they don't remember mums name! This support group is so lovely and its a relief to be able to pour out emotion, unusual for me!, like that in a forum and have such lovely messages back. Thankyou all. Will start the HCQ once I've had my eyes tested (although only tested in October, my consultant won't let me start unless done so I have to pay to see my optician grrrr) and have started to up the MTX gently as it makes me feel terrible. Gentle hugs, xxx PS I'm finally there with the shorthand of the drugs ?

  • That's ok, life happens thank you for letting us know you're ok. One thing though, if your mums NRAS ladies came to her funeral they obviously cared a lot about her & I'm reasonably sure they'll remember who you are & be only too pleased to help you. You know if you need them or you think it's wise but please don't think or assume people are too busy, they've probably thought of you since if they're anything like me! I was given such kindness after my dad died from people who attended his funeral, people I didn't even know & they told me things he never did, all good I should add! x

  • Yes. What you say is very true. I know one of the ladies has recently left NRAS. I Love talking to anyone who remembers mum. I'll have a think about the best way of contacting them. Thankyou for the vote of confidence.

  • No probs! Do let us know if you do make contact won't you. x

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