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Who or what gave you all the information on rheumatoid arthritis?

When my husband was diagnosed with RA that was it basically, try this medication and get blood tests every so often and see your consultant once or twice a year. I basically had to research everything my self. I was so scared at times! Why was he losing so much weight, bruises everywhere, infections, he has had a couple of lung issues in the past few years! Fatigue and brain fog so bad I actually accused him of taking drugs!! Nothing was mentioned about all the hidden crap about this illness. I admit at the start I just thought arthritis caused pain and misshapen joints. Apologies for me rambling on.

Answers

  • Mike1Mike1 Posts: 1,162 ✭✭✭✭

    Hi Lexi, don't worry about rambling that is something that this site is useful for! I have OA not RA like your other half but the same thing applies, when I was diagnosed I was merely told that I would end up in a wheelchair at some stage but I could not be told when (in the end it took less than 10 years) but basically I had to find out about the problem myself, I don't even remember being given one of the little NHS leaflets. Another reason I am grateful that this site is here, whatever your problems someone else will have experienced it as well so not only can you get help and advice you can get support too.

  • frogmortonfrogmorton Posts: 26,202 ✭✭✭

    Hi @Lexi2015

    I know what you mean. It's such a bizarre set of symptoms in fact sometimes referred to as Rheumatoid Disease not RA because it isn't only the joints affected.

    To be honest I went to Dr google and was lucky enough to get my information mostly from this site. It was called Arthritis care then and the forum was very very active in those days.

    I also rang the helpline and they sent me lots of information which helped alot.

    I am a great believer in getting informed so please do ask away if we can help we will.

    Love

    Toni xxx
  • I don't recognise some of the symptoms to be honest but RA is very different for everyone. The NHS has very good information and it might be the difficult times we live in but usually the GP can help and the RA teams have a lot of information. It's not really try this drug or try that drug as with RA there is not a medication like an antibiotic that treats a certain condition. But a lot which can help some, but not others. Its very difficult to explain I took Methatraxate then Lefludamide that worked great for years now its Azathyoprine with Etanercept ( a biosimiliar ). I am in remission and have no pain or swelling or anything else really. I had to stop the LEF due to an acute kidney injury over 2 years ago. So it's really just about finding the right drug which works for him which can take time. I'm serum positive RA and have had RA for a long time. I live well with it and so it might take time but it will get better in time.

  • I actually thought bruising, weight loss and being open to infections was common with RA wildflowers, guess I still have a lot to learn.

  • frogmortonfrogmorton Posts: 26,202 ✭✭✭

    I lost weight to start with I had no appetite and was mostly asleep or awake in pain @Lexi2015 and bruising is well known.

    Love

    Toni xxx
  • I have had RA for over 40 years and in the past year have been diagnosed with OA and Cervical Spondylosis. I feel that I am coping pretty well so far and acceptance is my first priority. I am fairly new to this site and feel that I am not alone by reading each other's afflictions and to see how they are coping. I always try and stay positive and active as much as possible and most of all have lots of support from my family although we are miles apart. Thank goodness for modern technology for uplifting me when days are bad.

    Hugs for Lexi and husband

  • Hi Lexi2015

    The meds do make people more susceptible to infections as most are immune suppressive in some way or another at the start. More people put on weight than loose it due to lack of activity as moving, can and does cause more pain. And the joints become inflamed and swollen. Bruising no I've never heard that but again some meds might cause someone to become more susceptible to bruising. Its best to report any suspicious symptoms to your RA team and I'd say one like bruising is best to report asap. Worst thing about RA is fatigue, and hot swollen joints but these conditions do improve. But you have to be patient as it can take time to find the right med or combination of meds.

  • I think weight loss and bruising is actually quite common in some people.

  • Shell_HShell_H Posts: 220 mod

    Hi @Lexi2015,

    Bruising is more likely to a a side effect of the medication, rather than that of RA itself. This is the same with susceptibility to infections - this is a side effect of the medications, as they supress the immune response in order to work. Your doctor should have discussed these side effects with your partner when they were prescribed.

    Weight loss could be either - if you take a look at the Versus Arthritis information on Rheumatoid Arthritis weight loss is listed in the symptoms:

    This doesn't mean it affects everyone or even most people with RA, just that it is something which can occur with RA.

    The brain fog you describe could easily be because of the fatigue. Fatigue is a common symptom of RA, mostly because of the constant pain. Being in pain is exhausting, it not only makes it harder to sleep, but it uses up your energy while you're awake, as you have to expend more energy to do anything. It costs a lot more energy to just smile and be nice to people when you're in pain, let alone do anything physical. The pain medications never actually remove the pain completely, they just make it more manageable. Your partner needs your support in this, as it's really very difficult to cope with constant pain.

    It's good that you took the time to do some research yourself. Your partner should definitely have been made aware of the possible side effects of the medication they were given, and this information would also have been in the leaflet which came with the medication. Your partner should also have been given some information on RA when diagnosed, and their specialist would probably be able to answer questions if you need it. There's a lot of information available, but sometimes doctors aren't as good at volunteering it - they need people to ask questions. If it's bothering you so much, make a list of the issues and ask your partner if he minds you joining him at his next appointment with his Rheumatologist so you can ask your questions there.

    My best advice is to support your partner as much as you can and remember that he is in pain, so fatigue and brain fog are normal. Check the medication information and leaflets and bring up any side effects to your GP, as they can be mitigated if they cause distress. It's always good to discuss your worries with your partner, and really listen to him and how he feels, listen to what he say he needs and how he's being affected.

    Much love to you and your husband

  • frogmortonfrogmorton Posts: 26,202 ✭✭✭
    edited 19. Nov 2020, 10:05

    See 'SYMPTOMS'

    WEIGHT LOSS

    Although it does also say if you are overweight you might be more likely to develop it. This was not the case for me being a size 10 at the time which I still am to this day. A proportion of weight gain can also be a result of medication of course.

    @Lexi2015

    Shell_H is quite right bruising is often the result of medication we take for our RA.

    Love

    Toni xxx
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