New with the RA disease

Vanessat
Vanessat Member Posts: 14
edited 21. May 2019, 06:29 in Say Hello
Hi i'm new with the diasese.
I'm portuguese my name is Vanessa and i'm 27 year old , and i still need to go to the hospital to make sure that is RA but the doctor that did the scan told me he was almost 100% was that.
I have several pain most in fingers in my hands and feet.
I want know what i can expect with this deasese and if i can have childrens, if with the time and the treatment i will get worst anyway or not.
Thank you so much

Comments

  • moderator
    moderator Moderator Posts: 4,088
    edited 30. Nov -1, 00:00
    Hi and welcome - it must be a very frustrating and worrying time for you.
    you might want to look at https://www.arthritiscare.org.uk/do-i-have-arthritis
    but I'm sure you will receive advice here.
    Al
  • stickywicket
    stickywicket Member Posts: 26,356
    edited 30. Nov -1, 00:00
    Hi Vanessa and welcome from me too. I'm sorry to hear that you almost certainly have RA but, honestly, it's not all doom and gloom. I've had it for near to 60 years and, although there have been bad times, there have been many good ones too. Right now I'm in California visiting my son and grandson.

    No one can say for certain how anyone else's RA will progress but getting onto the right medication quickly will help.Having children or not will be a decision for the future. We shouldn't try to conceive while on some medication but others are OK. There is a potential risk for our children in that they might, or might not, inherit a pre-disposition to autoimmune diseases. Even if they do inherit that there is no saying they will have any autoimmune health issues themselves. Not enough is known.

    My RA started in my hands too and then progressed to feet. You will probably have questions for the rheumatologist when you see him /her but if we can help in the meantime do ask. Living with Arthritis is the most popular forum :D
  • dreamdaisy
    dreamdaisy Member Posts: 31,557
    edited 30. Nov -1, 00:00
    Hello, I am sorry things are so uncertain for you at the moment. I have had arthritis for over twenty years but was not in good health before so the decisions I made about my life have been right for me. I am deliberately childless and do not regret it for one moment.

    Although we all have the same disease how we are affected varies so widely. For some the meds really work (they are the people we never hear from because they naturally assume it's like that for everyone) for others they are not so effective: you will not know until you try. Please let us know how you get on, we all get it because we've got it. DD
  • Vanessat
    Vanessat Member Posts: 14
    edited 30. Nov -1, 00:00
    Thank you so much all of you.
    Yes like you said at this moment is everything confused and i dont know to much about the disease.
    13 May i will go see the doctor again and then problably she will tell me what is really and which treatment i need to do.
    I didnt know about some people get well woth medication ans others no :(
    I'm cleaner so probably i will change my job but honestly i dont know which job can i have and dont hirt to much or get worse.

    Thank you all t4591
  • stickywicket
    stickywicket Member Posts: 26,356
    edited 30. Nov -1, 00:00
    Try not to think too far ahead, Vanessa. Take one day at a time and let's hope the rheumatologist will be able to help a lot. Please let us know how you get on.
  • Vanessat
    Vanessat Member Posts: 14
    edited 30. Nov -1, 00:00
    Yes of course.
    As soon as i know something from the rheumatologist i will come and tell you all
    Thanks 😘
  • SteveSetag
    SteveSetag Member Posts: 6
    edited 30. Nov -1, 00:00
    Hey Vanessa, My name is Steve and have been recently (in last week) been diagnosed with Osteoarthritis and finding it hard to come to terms with. Its very normal to question our future and what we will and won't be able to do as i am in that process now? Where are you living? Have you family nearby who can support you?
  • Vanessat
    Vanessat Member Posts: 14
    edited 30. Nov -1, 00:00
    No Steve actually my family is all in Portugal i only have my husband family here is like my family.
    But i already found aswell some books that i want to buy to lesrn more
  • stickywicket
    stickywicket Member Posts: 26,356
    edited 30. Nov -1, 00:00
    Be careful where you learn from, Vanessa. Lots of people make money from any disease that cannot be cured. If you want accurate information use the tabs at the top of these pages and / or look on NHS Web pages.
  • Vanessat
    Vanessat Member Posts: 14
    edited 30. Nov -1, 00:00
    Thank you so much i will make sure i get the right information 🤗 and i know you are right some people do money with this things/anothers

    Xx
  • Vanessat
    Vanessat Member Posts: 14
    edited 30. Nov -1, 00:00
    Hi all of you, so i went to thw hospital and i was diagnosed with RA.
    So at this moment i m doing 3 weeks steroid prednisolone and every weeks is going less until i stop and i taking qith this one sulfasalazine and each week i increase the dose.
    Next sunday i need to do an blood test and after 2 weeks another one.
    Thank you
  • dreamdaisy
    dreamdaisy Member Posts: 31,557
    edited 30. Nov -1, 00:00
    This sounds very usual to me, I missed the initial steroids but remember starting the sulph: one tablet in the morning for a week, then one in the morning and evening for a week, then two in the morning one in the evening for a week, then two twice a day: I built to six per day and stayed on them for years. Initially I had extreme bruising on my legs but that faded after six weeks. A friend of mine has had his arthritis very well controlled by sulph for the last ten years so I hope you follow suit. I had fortnightly blood tests for some time too. I wish you well and please let us know how you get on. DD
  • Vanessat
    Vanessat Member Posts: 14
    edited 30. Nov -1, 00:00
    Oh i see...i think was only for this 2 times that i have the blood test done as is the begining and everting.
    But i'm not sure about the sulfasalazine only as i think if i stop the steroids i could have more pain again.
    But let see how he goes

    Thank you
  • dreamdaisy
    dreamdaisy Member Posts: 31,557
    edited 30. Nov -1, 00:00
    Sadly you will have more pain, it is part of the condition and although it can be reduced by medication it is unlikely to completely go away. Steroids thin ALL body tissues, not just the swollen ones so they thin your bones, your muscles, your heart and lung tissues, everything: this is why we should not take them on a long-term basis.

    The medications can affect the liver and the kidneys so we need regular blood tests to make sure our organs are not being distressed. Sulph works by suppressing our immune system thus reducing disease activity - with auto-immune inflammatory arthritis the immune system overreacts to unknown triggers causing the body to attack itself so reducing the immune system is supposed to stop this happening.

    I had fortnightly blood tests for many years but my situation was different to yours. I began back in 1997 when I was 37 and things have changed since.

    You have to be careful now, keep your hands very clean and avoid people with coughs and colds. When our immune systems are reduced we do not produce symptoms of illness as quickly and can be quite poorly without knowing it. DD
  • 40withKneePain
    40withKneePain Member Posts: 25
    edited 30. Nov -1, 00:00
    Hi Vanessa,

    Im sorry to hear that you have been advisedof RA. I was 27 (now40 ) when I was told I had RA. I was referred to a specialist who said I could never have a family...this news shook the ground I walked on and I couldn't see cleary at all. I was due to get married in 7 months and I didn't know why, what and how.

    My experiences were the same, I was confused, I was lost and really depressed. I opted to see another rheumatologist in London who was more suttle with me and advised to start meds. I did, I was on Sulphazine for 3 months..I was so sick on the durgs. I was losing hair, my skin was awful, I felt worse than I did before them. Now everyone reacts differently...some people don't find these problems. One thing I learnt was everyone has their own experience with RA, don't ever think yours is exactly the same. To do this day, I have not come across anyone who has the same symptons or reactions like me....

    What did I do after 3 months....
    I changed my Diet, became a vegetarian
    I stopped drinking
    I started Yoga (breathing and stretching exercises)
    I slept well
    I ate fresh food every day
    I started taking notes to what I ate and when I had a flare

    All the above was through a guided family member..I was taught how to look after myself. My life was hectic...I was under a lot of pressure, my work life was manic, I worked over 60 hurs a week and slept less than 30 hours per week. I never ate well..things had to change as my body was giving up on me ..

    To my surprise, within 2 months, I was clear of any pain. I was on no drugs, and I had no pain. I went to see my rheumatologist who was amazed at my results, he didn't understand it as my bloods still showed high levels of inflammation, but it wasn't seen or felt anywhere.

    I married 5 months later and became pregnant within 3 months, with which during the pregnancy I was cleared medically of RA. My RA was in remission.

    It was a miracle!

    4 years on and no pain, I fell pregnant with my 2nd son and after delivery, I fell weak. I had stopped all my natural healing by then and surprisingly enough, the RA came back, the RA seem to have only affected my knee tho. I feel sometimes, the diagnosis of my condition wasn't always accurate. I do feel like I had oesteo, but maybe I was in denial. I was in denial for a number of years after my second son. unfortunately I didn't go back to my Natural healing methods, which I wish I never stopped.

    the disease in the knee got quite bad and over the last 6 years have suffered with knee pain, only 4 weeks ago I went for a knee replacement. I don't seem to be effected as much in other joints but keeping a close eye on it.

    Advise I would give you:
    -Look at what you eat, take note and see if you flares/pain are worse on some days than others
    -Clean your gut, Eat a lot of green veg, do fresh shakes
    -Streeecccthh those fingers and feet of yours with breathing. I find the Indian yoga videos on youtube are good, try specific ones to RA
    -If you feel a drug is making you worse, advise your rheumatologists, not all drugs suit all
    - If you want a family, again, we don't know if the disease replicates in the next gen ( I have no family members who have it)..you need to be off the drugs to ensure no risk to child or yourself. You have to start looking after YOU
    - Its hard on your partner to see you like this, you are very young and have a whole life ahead of you. If he wants to help, take him along to your appointments, it will help him understand how he can help you. You will need the support of your partner
    - Keep a clean and positive mind. Don't let this take over, its controllable, YOU have to control it.
    - if you feel your rheumatologist isn't listening, you can always ask to change. You want to be seeing someone who listens to you and is giving you the best advice.
    - Keep away from sick people, (not in a bad way) but the drygs will suppress your immune system so be mindful
    - most of these drugs do what they say on the packet but they also come with all sorts of side effects. Keep an ey eon this and ask to change it if they don't work for you. Leaky gut can cause all sorts of problems for you..

    As most have shared, WE ARE ALL HERE to support you through this. Be POSITIVE, You will recognise how string you are through this process.

    good luck x
  • stickywicket
    stickywicket Member Posts: 26,356
    edited 30. Nov -1, 00:00
    Hello again :)

    Thanks for the update. It's good that you have a diagnosis and can get on the proper Disease Modifying Anti-Rheumatic Drugs (DMARDS, such as sulfasalazine). I'm afraid you probably will have pain again when you stop the steroids but it's important not to take them long term.

    DD has made some excellent points, as she usually does. Anyone can get reactions to any meds, even aspirin but, thankfully, most don't. Sometimes people become so scared of the meds we must take for our arthritis that they opt not to take any. This is a big mistake. Those medications weren't available when I was first diagnosed and I have the body to prove it :roll: My RA is everywhere and all my joints are twisted so please do give the medication every chance of success. Don't expect it to take all the pain away. The steroids might do that but, as DD so wisely says, long term they do other, invisible damage.

    I see that '40withkneepain' has told you of her remission while pregnant. This can happen. It happened to me during my first pregnancy. But, boy did it return afterwards! And my second pregnancy was very difficult painwise.

    Just take one step at a time. If the steroids are currently taking the pain away then enjoy it. But not so much that you don't want to come off them. You might have a few initial problems with the sulfasalazine but try to persevere as they usually go with time. If not, get back to your rheumatologist as you might need a different med. And, yes, the blood tests are very important as they can show up potential problems long before they become actual so we have to have them regularly. I only have them every three months now.

    Good luck with it all and do get back to us if we can be of help.