Hi

abbigayle123
abbigayle123 Member Posts: 5
edited 16. Aug 2018, 08:45 in Say Hello Archive
:animal_busy:

Hello
my name is Abbi , i have r a and was diagnosed 18mths ago, my medication is 20mg methotrexate weekly injections and lefludomide 10mg daily this combination is the only one that was working after many months of trail and error , my pain killers are co codamol and morphine patches as i have severe allergy to nsaids so am limited as to what i can take.

I am looking forward to chatting with other people struggling with this nasty condition who may have ideas on how to better cope with the everyday challenges .

kind wishes to you all t115006

Comments

  • stickywicket
    stickywicket Member Posts: 27,101
    edited 30. Nov -1, 00:00
    Hi abbi and welcome from me too.

    I also have RA but, as there were no modern DMARDS around in my early years, I also have OA now. I get by very well these days on methotrexate and hydroxychloroquine. I normally only take a couple of mild co-codamol going to bed as I find I can manage better with pain than I can with the brain fog of painkillers.

    I get the impression, on here, that there are as many people who can't take NSAIDS as there are who can :lol: I can't because they did so much damage to my stomach in the days before stomach-protecting meds were prescribed with them.

    We'd love to help in any way we can. If you tell us what your problems are we're all pretty good at coming up with ways of making life easier. best to put up a thread on the Living With Arthritis forum, though as more people look on there.
  • abbigayle123
    abbigayle123 Member Posts: 5
    edited 30. Nov -1, 00:00
    hi again stickywicket,

    thank you so much for the lovely reply , it is good to talk to someone who has an understanding of this condition , it sounds like you have really been through the mill.

    I am really struggling at the moment with pain and swelling , i also have multiple stomach ulcers and gastritis which is apparently related to the r a i have lost over 10kg in weight ,just for good measure i have been diagnosed with a carotid tumor in my neck and a meniginoma in my brain so feeling pretty low really.

    i would like to know if it is appropriate to contact the r a helpline at the hospital or if i should wait to see if this flare will settle on its own , it is the first major flare that i have had since the medications were settled on.
    thank you again and i hope you have had a good day.
    abbi
  • [Deleted User]
    [Deleted User] Posts: 3,636
    edited 30. Nov -1, 00:00
    Hi abbi
    my goodness you are having a rough time. I would certainly suggest phoning your ra helpline at the hospital as it is useful for them to know when you are flaring and they may well want to get you in a bit sooner. Don't sit in pain. Let us know how you get on we are here to listen to you and support you
    Best Wishes
    Sharon
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello, it's nice to meet you but I am sorry you have had to find us. I have an auto-immune arthritis (psoriatic aka PsA) plus OA. After many years of trial and error for the PsA I am taking weekly injected meth and fortnightly injected humira (an anti-TNF medication) which is controlling matters pretty well: the peculiar joy of the OA is that I can exercise some degree of control which is refreshing.

    As a veteran of 22 years I think you need to ring your Helpline ASAP, to me this doesn't sound right and they need to know that this is going on. My PsA has been flaring despite the meds and I don't have the issues you do. Fallling between two or three departments when it comes to health issues is not ideal but it's not unknown. I firmly believe in telling those who need to know what they need to know, I call it 'medmin' (medical administration). I tend to do it better than those who are employed to do so because I think I matter whereas to them I am one of far too many. Please let us know how you get on and I wish you well. DD
  • stickywicket
    stickywicket Member Posts: 27,101
    edited 30. Nov -1, 00:00
    Definitely contact your helpline. You have quite enough to deal with without anything extra. In fact I'd say contact them today as the weekend is nearly upon us and there'll be nothing happening then until Monday.

    I remember my first endoscopy report which said there was evidence of several former ulcers plus gastric erosion but all of this was due to NSAIDS not the RA.

    It might be that your medication needs tweaking a little and that everything will then settle down but, in your shoes, I'd want to get it dealt with as soon as possible. Please let us know how you get on.
  • abbigayle123
    abbigayle123 Member Posts: 5
    edited 30. Nov -1, 00:00
    OH my goodness thank you all so much for the rapid replies and helpful advice , i will ring the helpline in the morning , i just wasn't sure if that was the purpose of the helpline as no one explained when to use it they just gave me the number in the back of my MTX blood book .

    I have never taken nsaids but was told by Gastroenterology that the problems were related to inflammation of the stomach lining , i can only imagine how fed up and unwell you must have been to find out the meds were responsible . As for the endoscopy i never want to do that again !!!

    I have heard that PSA is very similar to RA but you have the double trouble dealing with skin as well and to put oa on top must be awful.

    thank you again for all the advice i will let you know how i get on .
    Hope you are all ok today and not in too much pain.
  • stickywicket
    stickywicket Member Posts: 27,101
    edited 30. Nov -1, 00:00
    God luck :D
  • abbigayle123
    abbigayle123 Member Posts: 5
    edited 30. Nov -1, 00:00
    hello again ,
    sorry not had any update on the situation but i rang the helpline on Friday and still have not had a reply.

    My fingers are causing the most pain today and i seem to have developed a small very painful lump on the underside of my ring finger along with bright red palms(that is something completely new).

    I am thinking that i will have to ring again which makes me really uncomfortable as it feels like i am being irritating .

    Hope everyone is doing ok and making the most of the dry weather. m0150
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    No, you are not being irritating, you are a patient who is new to all of this and you need medical support. Ring them until they get back to you, making sure you leave all your details: one of my friends was a rheumatology nurse and found Helpline messages such as 'Hello, it's me, Linda, can you ring please?' less than helpful. :lol:

    Things have changed since I became a frequent flyer at rheumatology, back in the bad old days of the disease and good old days of the service I had an appointment every three months and the Helpline was always answered by a rheumatology nurse. Now I have an annual appointment, hear nothing about my bloods unless there's a problem and rarely ring the Helpline but that's fine because I have been playing the game for 21 years and know what's what. The reason for this is people are being diagnosed far quicker thanks to GPs being more on the ball so patient numbers are increasing unlike the resources.

    Feel free to ask us any questions you may have, we cannot give medical advice or recommendations but I am sure that between us we have experienced everything you are, we get it because we've got it. DD
  • stickywicket
    stickywicket Member Posts: 27,101
    edited 30. Nov -1, 00:00
    I can't relate to the bright red palms. The lump might be a rheumatic nodule. I've had several in the past and am currently sporting a couple of beauties, one on a knuckle and the other on a kneecap. There's never a dull moment with arthritis :roll:

    Believe me, you are not being irritating. You are new to this and this to you and things are not as clear cut as they might be with us old hands. Keep on ringing and please update us when you get through.

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