Hello from a New Member

Hi my name is Mary and I am 56, live in Glasgow and I was diagnosed with RA 5 years ago.

I have been reading some of your stories on here and find it all very uplifting finding people who go through the same problems as myself.

I have managed to keep working all through the RA with very little sick leave, although I did have to make some changes on the type of work I do but manage fairly well appart from the tierdness which we all suffer from.

My social life is non existant now and this was my biggest change as I loved going out for a drink and a dance.

I also miss walking as this was a passion of mine all my adult life but due to feet and knee problems I cannot manage to do this any more. i still am able to walk a bit but not the miles that I was able to do before.

I also liked going to my keepfit class but again had to stop this due to pain.

I have gained nearly 2 stone since I stopped the exercise so really need to work hard at shedding some of the extra weight.

I was put on MTX straight away and had Sulpha and Hydroxy added to it.

There was some talk over a year ago about me starting on the Anti-TNF but as my sister was just diagnosed with MS it was decided to leave it just now.

My brother also has Lupus and my dad had AS so there is strong genetic like with auto immune disease in my family.

Recenty I have been having a problem with being out of breath and having a cough so I have been off the MTX since the start of the year.

I had a scan done on my chest which showed 2 nodules on the left lung so this has to be investigated further by a specialist as the cough and the breathlessness is still present.

I was quite worried about being taken off the MTX as I don't want any more damage to my joints as I already have damage on both shoulders. I also have problems with ankles and knees.

I had to get treatement last week for ulcers in my right eye, I had this previously just before I was diagnosed with RA but thought it was wearing contact lens that caused it. I have not wore contact lens for a long time as my eyes are very dry so I am not sure if this has been caused by RA and not taking the MTX.

I have a Rheumy appoint next Wed so I will see what they say about the MTX, not really sure if I want to take this while I am having lung problems.

I am worried about having problems with my lungs but I will just need to wait and see what happens next.

Thanks for listening

Mary

32 Replies

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  • Hello Mary and welcome :) I am pretty new to this place and to RA. Am awaiting my first appointment with the rheumatologist. I'm sorry you're having trouble with breathlessness due to those nodules. I hope they get it all sorted out for you.

    Meantime pull up a chair and enjoy this place which is full of knowledge and caring souls.

    Take care. :)

  • Hi linbin

    Thanks for the reply and warm welcome.

    Mary

  • Welcome to the site too. together we are all stronger in our fight , your rheum team will sort you X

  • Hi summer

    Thanks for the reply and the warm welcome, I am hoping that the rheumy team will have some answers when I go next Wed.

    Mary

  • Hello Mary welcome to the group,There are lots of good people on here to help and support you if its needed.i have OA and some lNFLAMATRY Arth,hands feet and knees.Sorry to hear about your problems, hope you get them sorted soon;Best wishes Pat.

  • Hi nanypat

    Thanks for the reply and warm welcome.

    Mary

  • Welcome mary,we are a great bunch of people on here as summer has also said. You can feel to moan and celebrate and we will share with you all our trials and tribulations. So welcome.xxxx

  • Hi sylvi

    Thanks for the reply and warm welcome.

    No doubt I will have lots of questions and maybe I will be able to help others a little too.

    Mary

  • All the help we can give to each other is always welcome. Look forward to hearing more from you.xxx

  • Hi Mary and welcome. I wasn't quite sure why your sister's MS diagnosis meant you couldn't try anti-tnfs? Great to have another Scottish member - I live in Orkney and am interested to know more about rheumatology services in Glasgow. As everyone says this is a great place to ask questions and get and give support for RA. I have a stinking cold and an having my first night off injectable MTX tonight since I started it 24 months ago. Very relieved. Tilda x

  • Hi tilda

    Thanks for the reply and warm welcome.

    My Rheumy doc was originally thinking of Enbrel or Humria but told me that some of the anti-tnf drugs have a slight risk of you taking MS, so as my sister has this they said it would be best to leave it just now. I really did not want to take the chance of having RA and MS.

    To be truthfull I am a bit worried now that I am off the MTX and wonder if I will be able to go back on it with the chest problems.

    I go to the Glasgow Royal Infirmary and they have a excellent Rheumatology dept.

    I visited the Southern General with my sister as they thought at one stage she had RA but it turned out to be MS and I was very disappointed in their Rheumy clinic but maybe it was just a bad day as the Southern General is the new super hospital in Glasgow.

    Mary

  • Oops I meant to write 14 months ago.

  • Hiya Mary ....you've made a great step connecting to this site ....the support is second to none and the positivity really lifts you if you are worried or just having a bad day...it's helped me and you will make good friends ...welcome love Claire x

  • Hi claireyj

    Thanks for the reply and warm welcome.

    Mary

  • Hello and welcome to this wonderful site, there are so many people to give you help and support, to listen to your moans and to celebrate with you when everything goes right. I was diagnosed over twelve months ago with RA but it runs in my family also as my mother had it and my brother has it, but I have received so much support from the wonderful people here.

    Hope you get sorted when you see your Rheumy next week,

    Take care Wendy xx

  • Hi nellysgran

    Thanks for the reply and warm welcome.

    I see you are a bit like me and have a history in your family with auto immune problems.

    Mary

  • As everyone has already said....a very warm welcome!

    I have found this site and all the lovely people here help me understand ra, meds and what they go through with their own experiences.

    They are all such a fabulous group of people and without them alll (especially at the minute) i dont really know what i would have done.

    They are all so very caring and helpful.

    Hope you get sorted soon.

    Take care

    Jo

    Xxxxx

  • Hi Josie2

    Thanks for the reply and warm welcome.

    Mary

  • Hiya, welcome to this wonderful site, It seems to me you have had a lot to deal with, i hope things improve, we are all here for you ShirleyXx

  • Hi shirlthegirl

    Thanks for the reply and warm welcome.

    Mary

  • Hello I'm in edinburgh, welcome to the site

  • Hi cathie

    Thanks for the reply and warm welcome.

    I love Edinburgh and go there quite a lot to the Edinburgh Playhouse as they get all the best shows.

    Mary

  • If you ever need a coffee and chat before the play let me know. I live not far from playhouse, in marchmont. Dont get to glasgow enough but we watch out for good events as an excuse!

    Snow falling steadily now so im staying in today

  • Cathie

    Thanks for the offer, thats very nice of you.

    They are building a new venue in Glasgow for the Commonwealth games which should allow the bigger events to be held here.

    I do not like the SECC but the Clyde Auditorium and the Royal Concert hall are really good.

    It is snowing here in Glasgow this morning, we have been lucky so far a and missed most of the snow.

    I am at work just now and managed to get here with no problems so I have my fingers crossed it wont get too bad for the journey home.

    Mary

  • Hi All, I am a new member and this forum makes me realise that I am not alone!!! I was diagnosed with negative RA 13 months ago and had 4 reactions to medication. One put me in hospital for 7 days, another enlarged my liver and I was rather poorly. I also have bronchiectasis which means a lot of the drugs are not suitable for me. I am waiting to be retired on ill health and have had to go through 2 ATOS medicals which were traumatic. If someone had told me a year ago my life was going to change this much at 51, I would not of believed them. I used to run every other day and cycle 20 miles a couple of times a week. Now I hobble around and take lots of pain killers. On the positive I have a wonderful husband and two kids who are fantastic. Friends who love and support me. So it's not all doom and gloom. Her's hoping this year they can find a drug that suits me as on nothing at moment. So thank you for all your stories as they keep me going and make me smile a lot. We will all get there but in the meantime try and keep smiling!!! :)

  • Hi uist51

    I am new to this site and reading your post made me think of how I felt when first diagnosed nearly 5 years ago. I was really fit and heathly and had just turned 51 then my whole world was turned upside down. At the begining I could hardly walk and struggled doing simple things as my hands were so sore and weak.

    Once I was put on the drugs and they kicked in it made such a big difference.

    I have had problems over the last few years but have been able to stay on at work but saying that I don't really do that much if I am honest, most of my work I can do from my desk.

    Like yourself I have a lovely understanding husband and two grown up kids along with 2 grandkids.

    I hope they find something suitable for you so that helps and makes things easier for you. Its a shame that you had a bad reaction to the drugs as it is hard enough trying to cope with this horrible disease without the drugs causing you problems as well.

    I try to keep positive and you should too and not given in.

    I am worried about my recent breathing problems but I know I will get help.

    Sending you a hug

    Mary

  • Hi Mary, Thank you for your reply. Really hope you get your breathing problems sorted out quickly. That will also make you tired. Take care and sending a hug Michelle. PS I am from Glasgow though don't live there now but very proud of my roots .

  • Belated welcome, (have only just read my emails). Your story has some similarities with mine - diagnosed last year aged 49. Also had to give up lots of things I loved, but am slowly getting more active. Now on MTX since May, seems to be working pretty well. Found it interesting about your sister, as my brother was diagnosed with MS at same time as my RA (but we have no history that we know of in our family).

    Hope you get something sorted out asap re your lung problems.

    Take care.

    Caroline.

  • Hi cazh

    Thanks for the welcome.

    We thought my sister had RA as her symtoms were similar to mine at first then she started having problems with her eyesight then they said she had MS.

    I went for the screening for the anti-tnf drugs and it looked like I was going to be put onto one of them and it was just by chance that I mentioned that my sister had been diagnosed with MS recently that the nurse said oh we will need to speak to one of the consultants about this. They knew my brother had Lupus when I was first diagnosed with RA but my sister was fine at that time.

    The consultant thought at that time it was too much of a risk for me to be put on the anti-tnf drugs and said that we would leave it for a little while and look at it again but I know I will not be offered Enbrel of Humria but maybe something else but not sure what.

    I am glad the MTX is working for you and hope it continues to work for you.

    Mary

  • Shame anti-Tnf is not an option, but better safe than sorry, Ra is bad enough without MS too. Hope you get something sorted.

  • Glad to listen. It's the least we can do. Hope you get lots of support & find an exercise activity that suits. Why don't all hospitals organise exercise groups especially for us? Good luck with your appointment x

  • Hi selina

    Thanks for the welcome.

    I really need to do some exercise and cut down on what I eat.

    Its strange that simple things you took for granted before are now difficult. I was always a bit of a fitness freak but now I would be glad to just be able to do even just a little bit. I am going to watch what I eat but until I can get this thing with my lungs sorted I am unable to do any kind of exercise and like you I wish the hospitals could help us more by organising some type of fitness groups.

    Mary

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