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Rheumatoid Arthritis

RAwarriorRAwarrior Member Posts: 469 Pioneering
Does anyone in the online community have Rheumatoid Arthritis? I would be interested to know about the sorts of things other people have said to you about the condition? The most common one for me is “you are too young to get it.”

Replies

  • CressidaCressida Member Posts: 489 Pioneering
    Yes unfortunately I have had it for 30 years. I've got used to people saying ridiculous things like oh yes I've got rheumatism too.  :/
  • vikingqueenvikingqueen Member Posts: 141 Pioneering
         I take my hat off to you @Cressida 30 years is some going, i have only had this crazy disease for 3 years and apart from my daughter and partner everyone else seems to think a paracetamol will cure it, the amount of people that have said "oh i have a touch of that "... NO YOU DON'T... and does the weather affect you ..."NO IT DOESN'T... You have to keep a sense of humour at times. :neutral:
  • RAwarriorRAwarrior Member Posts: 469 Pioneering
    Hi @Cressida and @ vikingqueen.
    Thank you very much for your replies. 

    I have had RA for several years and I heard so many ridiculous thinks including:
    Did you have a fall?
    My grandmother/
    grandfather has it.
    Turmeric will cure you.
    Is it treated with pain killers?
    Does the cold weather make it worse?
    Have you tried alternative medicine?
    You don’t look ill.
    I have a bad back. 
    If you follow a particular diet you will be cured within three months.

    I could go on but a big problem is the confusion with Osteoarthritis which I also have but as you know it very different. I am on a biologic and I have lost count of the number of people asking me when is my next blood transfusion? I think many people just don’t understand how serious RA can be if it’s not treated. In my case fatigue is a big problem especially when my next infusion is due but try telling people that when they expect me to be able to function in the same way as people who don’t have RA. I just try to raise awareness about RA because I think it’s a disease which sometimes doesn’t get highlighted very much.  
    Many thanks again😁
  • vikingqueenvikingqueen Member Posts: 141 Pioneering
     @RAwarrior
     i must admit until i got it i knew nothing about it, my daughter has an inflammatory disease that  is completely different so that was no indication of what was to come, i am now on a dmard and a biological and "touch wood" am doing relatively  ok. What people need to understand is that RA is incurable and can manifest in many ways. 
     
      The "you don't look ill " makes me angry and i usually go into a rant, people don't want to understand what they can't see .
    .
      I don't even bother to try and explain anymore i just smile and walk away ( especially when i use my blue badge and i hear people mumbling and tutting)  :wink:
  • CressidaCressida Member Posts: 489 Pioneering
    @RAwarrior
    @vikingqueen
    Hope you are both doing okay today in the heat. The change in atmospheric pressure affects me greatly. I am also on biologics and methotrexate and they have controlled the development of the disease somewhat (according to the x-rays). Unfortunately I have also developed osteoarthritis in my knee over the past 2 years. I think the key is to develop coping strategies and not to push through the pain, easier said than done I know. Pacing yourself is everything. I attended a 6 week course for inflammatory disease which I found really helpful. As a side note I have suffered from Myasthenia Gravis since my early twenties which is also an auto-immune disease. Most people have no idea of the pain and debilitation it causes but I don't let that bother me any longer, my skin has grown thicker over the years :)
  • Cher_ScopeCher_Scope Administrator Posts: 887 Pioneering
    I have an auto-immune condition too and have had the luck of being on the receiving end of similar comments!

    Just a word to say, if you are on immunosuppressants make sure to put lots of sun cream on during this warm weather.  I might sound like your mum here :D but some medication makes you more susceptible to sun damage so be careful people.  Here's a link to an NHS leaflet that explains more https://www.ouh.nhs.uk/patient-guide/leaflets/files/11710Pimmunosuppressants.pdf
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  • vikingqueenvikingqueen Member Posts: 141 Pioneering
         Good advise @Cher_Scope, not everyone knows about staying out of the sun, i didn't at 1st .. not that i sat in it much.

          When the sun shines you will find me inside in front of my tower fan :) I love going on holiday but i am the one that hogs all the umbrellas round the pool, covered in factor 50  and then can only manage half an hour :smiley:
  • Cher_ScopeCher_Scope Administrator Posts: 887 Pioneering
    @vikingqueen I am also a SPF50 fan! For a long time I didn't realise that my medication increased my risk of sun damage so now I make sure to lather it all over! Best to be careful isn't it?
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  • RAwarriorRAwarrior Member Posts: 469 Pioneering
    @vikingqueen
    I am also on a DMARD and a biologic after the conventional DMARDS didn’t work.
     I am sorry to hear about the problems you have had when you have used your blue badge. I have been told that I cannot park in a disabled space until I get out of my car and they see walking stick. Unfortunately there is a lot of blue badge misuse with family members using the blue badge to avoid paying for parking when the holder is not in the car and this means that those of us who actually do need to use a blue badge get the “looks, comments and tuts” It is a big problem especially because RA can be an invisible illness. However, people should not be letting people who are not disabled use their badges. I heard of someone at work who used his father’s badge daily to avoid paying for parking so it does people like us a disservice because blue badge miss-use is a big problem.

     I am glad the treatment is helping you and going onto a biologic for me has made a big difference.
    Many thanks for your reply 😁
  • RAwarriorRAwarrior Member Posts: 469 Pioneering
    @Cressida
    Thank you for your reply. As per previous post I am on a DMARD and a biologic. However, I cannot tolerate Methotrexate as it made me very sick. I even used to take the injection form and I wasn’t bothered about the needle but I used to feel sick twenty minutes after doing the injection. The nausea used to last for two days and then I actually started to get sick.
    You make an excellent point about pacing yourself which is difficult because many people don’t see fatigue and often don’t believe me when I say I am exhausted so they expect me to be the same as someone without RA.
    Many thanks for your reply😁
  • RAwarriorRAwarrior Member Posts: 469 Pioneering
    @Chloe_Scope
    Thank you for the information about protecting ourselves from the sun. Many DMARDS and biologics cause photosensitivity and I didn’t realise until I got sunburnt on my legs several years ago in the garden. I don’t tolerate heat very well so I sit in the shade. Many thanks for the link you have posted😁
  • RAwarriorRAwarrior Member Posts: 469 Pioneering
    @vikingqueen
    @Cressida
    @Cher_Scope
    Many thanks for commenting on this thread as I know I am not alone👍

  • RAwarriorRAwarrior Member Posts: 469 Pioneering
    @Cher_Scope
    Please accept my apologies as I incorrectly tagged Chloe instead of you in relation to your advice about the sun! I am still new to the website and Chloe did tag me about another subject and I replied to the wrong one! Many thanks for your comments😁
  • chiariedschiarieds Community champion Posts: 3,457 Disability Gamechanger
    @RAwarrior - Initially my GP thought I had sero-negative rheumatoid arthritis, but it turns out I have osteoarthrosis (OA) due to a genetic disorder involving hypermobility, & subsequent wear & tear on my joints.
    In a similar vein (as I shouldn't have had OA at such an early age), this is also poorly understood....some people will say, 'I have a touch of arthritis,' which unfortunately shows their lack of understanding as far as either disorder goes (RA or OA).
    I've also had (kindly) taxi drivers ask if I'd had a fall & fractured something, as I need to use elbow crutches outside. The only good thing about my disorder is that we look younger than we are, so perhaps I'll take their comments as a compliment!
    Difficult to understand that people think RA only attacks people of a certain age when there's Juvenile RA.
    @Cressida has made a very important point.....pacing helps, not just with RA, but many other disorders that cause fatigue/pain, mine own included, due to additional neurological problems. Despite knowing about this, I was my own worst enemy for quite some time. I just thought push through the pain, get everything done, then collapse at the end of the day. I now manage way better by pacing myself, & no longer feel frustrated by it. Pacing really can help. :)
  • RAwarriorRAwarrior Member Posts: 469 Pioneering
    @chiarieds
    Thank you for your comments. Unfortunately I have had OA in my hip since I was 30 and I got RA afterwards. The pain caused by the OA when it flares up can be worse than the RA. I also wear wrist splits/ supports so along with my walking stick I often get asked if I have fallen. I used to get asked that a lot at the supermarket checkout pre-Covid as I no longer feel safe to go to the supermarket and the comments were often followed by asking me if my condition was controlled with pain killers. However, trying to explain what exactly RA is can be quite difficult and I would often hear “I have a bad back or have you tried Turmeric which will cure you?” As a warning to others another patient ended up in intensive care because they followed an alternative medicine regime. What many people don’t understand is that many herbal remedies or even things like garlic capsules can make the medicine people take for RA toxic. I heard about the interactions from herbal remedies or certain vitamins when  a RA specialist pharmacist gave a talk at a RA support group I attended. I stick to what I am told by the Rheumatogy team however, I was surprised to learn that something seemingly harmless as garlic capsules could be toxic if taken whilst being on RA medication. 
    Many thanks 😁
  • Beanie71Beanie71 Member Posts: 8 Listener
    Hi All  Im 47 years old and have recently been diagnosed with RA - 3rd week in on Methotrexate, any advice would be great on anything that i may need to know, 

    Many thanks 😊

  • vikingqueenvikingqueen Member Posts: 141 Pioneering
        Hi @Beanie71, welcome to the club that no one ever wants to be in. I think everyone is different in their RA journey, i was extremely poorly in the beginning but thanks to a wonderful doctor and a great rheumy team i got through the initial weeks.

        I will say bear with the methotrexate it can take a couple of months to kick in, but  if it doesn't work there are plenty of other options. Listen to your body, fatigue is one of the things that will raise its head, if you need to rest then do so.
     
      Ignore what people say who don't understand the disease, they'll either learn or they wont.

       Do not be frightened of ringing your rheumy team as often as needed, or your doctor, that's what they are there for. Don't put up with pain.

      There are  lovely people on here with RA so if you want to have a rant or just ask a question someone will always answer.
      
  • chiariedschiarieds Community champion Posts: 3,457 Disability Gamechanger
    Hi @Beanie71 - I just wanted to welcome you to the community. I have OA, rather than RA, so others here will be able to comment better with their thoughts & help. I hope you find this community a friendly & supportive place to be, & the advice given helpful. :)
  • Beanie71Beanie71 Member Posts: 8 Listener
    Hi @vikingqueen

    Thank you for your quick response to my email.
    I can honestly say I've not quite felt myself for the last few years, fatigue (feeling like I'm walking through water day in day out) picking up every bug that was doing the rounds but put it down to my father being very poorly with cancer, he passed away last October.

    It all came to a bit of a head back in May when my wrist started to give me a lot of pain, this continued to get worse so i phoned the GP who requested bloods, my CCP level was at 340, I've not driven since then as i cannot change gear as to painful.

    As you mentioned above i feel like most people just don't understand and i feel that I'm constantly trying to justify being off work etc etc.

    So glad i joined this group it has really helped reading all your comments xx
  • vikingqueenvikingqueen Member Posts: 141 Pioneering
          You are very welcome @Beanie71
  • RAwarriorRAwarrior Member Posts: 469 Pioneering
    @Beanie71

    Welcome to the online community😁

    Thank you for posting on this thread. I have found this online community to be very supportive and I only recently joined😁

    I am sorry to hear about your father😞

    As @vikingqueen and @chiarieds have already said this community is very supportive😁

    I agree with the comments that have already been posted by other members of the online community and Rheumatoid Arthritis is a very  misunderstood disease. 

    I have had RA (as a lot of people call)it for several years but I still have to explain to people what RA actually is as per my previous posts.

    The positive part about RA is that Rheumatology is a constantly evolving area of medicine because research is ongoing especially in relation to new treatments. Many of the drugs that are available to treat RA were not around many years ago so the treatment was limited. 

    Rheumatologists are excellent doctors because they work in a challenging field of medicine covering many different diseases not just RA.

    It will take a while for Methotrexate to start working as it isn’t a drug which starts working instantly.

    I agree with @Vikingqueen about not listening to people who don’t understand the disease. 

    It’s really important that you obtain the information you need from a recognised source and I speak from experience. I have given examples of the sorts of things people have said to me from telling me that Turmeric will cure me to alternative medicine.

    I am repeating myself as I have mentioned this in my previous posts however, it is really important that you don’t start taking any vitamins, supplements, alternative medicine before you speak to your Rheumatologist or Rheumatology Nurse if you have one. I am trying not to give medical advice but it’s really important that the information you get comes from your Rheumatology Department.

    Members of the online community in my experience will give you proper advice and be supportive just be wary particularly of strangers when you are out and about (I’m not joking😁)suggesting all sorts of things. A colleague at work said if I followed a special diet I would be cured in three months!

    I probably sound very cynical but in the case of RA I have heard so many silly and some dangerous suggestions.

    The Rheumatologist who treats me says don’t check with Dr Google😁

    Two very good sources of information are the NRAS Charity which specialises in RA. They have a helpline, you can order leaflets or get them online. They also have videos on YouTube. NRAS is an excellent source of information for RA.

    NRAS also have a leaflet about working with RA which contains important information for you and your employer.

    There is also Versus which you might have heard of and they cover the many forms of arthritis.

    I also suffer from fatigue and it’s a difficult part of RA especially when other people including work colleagues don’t believe me when I say I am exhausted.

    RA can be an invisible illness so many people don’t understand and confuse it with Osteoarthritis. I am not demeaning OA because I have OA as well which can be more painful at times than the RA. I would suggest that you pace yourself in relation to fatigue but it’s easier said than done😁

    I am trying not to turn this into an essay about RA however, I was in the same position as you are now once so I actually try to help other patients with RA if I can.

    Thank you again for posting about your RA.

    Thank you to everyone who has posted on this thread. My hope when I started this thread was for members of the online community especially people with RA or OA to help each other so I am really grateful😁
  • scotleagscotleag Member Posts: 83 Courageous
    RAwarrior said:
    Does anyone in the online community have Rheumatoid Arthritis? I would be interested to know about the sorts of things other people have said to you about the condition? The most common one for me is “you are too young to get it.”
    Diagnosed in 1994 and I heard much the same as you. I was 'too young' (38) and male so I "couldn't" have it. Felt very sorry for myself until I had a consultant's appointment and the three people in front of me were all young women under 25. Stopped wallowing in self-pity there and then. 

    Severity varied over the years and I managed to keep working until around three years ago and after years of putting it off because I'd heard so many bad stories about it started to take Methotrexate as it was just getting too bad. It's definitely improved things but I haven't been able to return to work and I doubt very much if I ever will, 

    As for what other people have said, well I still get some funny looks on trains when I show my disabled railcard. Simply because unless someone looks really closely at my hands there it no visible disability. 
  • RAwarriorRAwarrior Member Posts: 469 Pioneering
    @scotleag
    Thank you very much for posting on this thread :)
    I'm glad the Methotrexate is helping you. Unfortunately I can't tolerate it. I used to take the tablet form of Methotrexate which made me feel sick. I was then switched over to the injection form which made me actually get sick. I was then put onto Leflunomide which in my case doesn't make me sick. I am also on a biologic. 

    I am sorry to hear about the looks you get when you show your disabled railcard :(

    I have had a lot of abuse when I park in a Blue Badge space. I have given details in the Room 101 thread if you're interested.

    I have often been told that I can't park in a disabled space BEFORE I have even got out of the car because some people expect all disabled people to be elderly which particularly in the case of RA affects people at a younger age. However, people have no right to assume that someone is not disabled. However, I have mentioned this in Room 101, a big problem is Blue Badge misuse which then affects people who are actually disabled and do need to park in a disabled space.
    Thank you again for posting on this thread. 

  • Beanie71Beanie71 Member Posts: 8 Listener
    Thank you @RAwarrior for all your information, im sure ill be back for some more soon

    xxx
  • CressidaCressida Member Posts: 489 Pioneering
    edited August 29
    @Beanie71 welcome to the forum. A bit of background on me, I've had RA for over 30 years now and the drug regimes available nowadays are SO much better.  I'm not sure if you posted how you are taking your methotrexate whether it is by tablet or injection. I  was on tablets for some time and felt quite nauseous so my rheumatologist changed it to the injections. I don't get any nausea now and also take folic acid every other day (not the day of the jab). Different rheumatologists will recommend different amounts of folic acid. In the USA I believe the regime for folic acid is every other day in many cases. Over the years I have taken most of the drugs available but now well settled into Methotrexate and Imraldi (a biosimilar). 

    I hope you live in an area where you will be funded for the biologic drugs if necessary as they can be life changing. You will be closely monitored on the Methotrexate and I imagine are having bloods done monthly at the moment. My GP won't issue a prescription for the Methotrexate unless I have had a blood test so there is a failsafe system. I cannot remember how long I have been on the Methotrexate but it is a few years now and in all that time I have had one blood test which showed a problem with the liver function and the drug was immediately stopped for 3 weeks. I went back onto it on a lower dose and since then everything has been fine. My crp is always elevated but that's my 'normal'. I would encourage you to ask for the injection, I am still on the metojet as they are smaller syringes and easily fit into the sharps bin. The only issue I have with the injections are obtaining purple topped sharps bins as the methotrexate is cytotoxic. 

    Try and pace yourself and don't get too hooked on reading about side effects of drugs. I used to do this and it's easy to convince yourself that you are suffering from all the contraindications on the list :)  I have developed some OA in my knee and neck but that is managed with painkilling drugs. 

    Edit: I just re-read your first post and wanted to add please try and see your Occupational Health team at work. I worked for years before I did this as I saw it as a 'weakness' and thought they might use my RA to get rid of me. Since my referral (which I asked for) I have had adjustments put into place and people take my RA more seriously. I also have specially made splints for my hands which are helpful when they are 'clawing'. They were made by the OT in the rheumatology team. This was years ago but they made me 2 pairs, one is lighter and allows a bit more movement and the other is a 'firmer' one. I was also given lots of aids which help in everyday life. I had no idea what was available and struggled unnecessarily for many years. 




  • RAwarriorRAwarrior Member Posts: 469 Pioneering
    @Beanie71

    You’re very welcome😁

    If you have any questions please come back to this thread because as you can see the people posting on this thread have a lot of information which they can share which in my case really helps me😁 
  • RAwarriorRAwarrior Member Posts: 469 Pioneering
    @Cressida

    Thank you for your really interesting comments and for sharing details of your experience😁

    I’m glad you can that the subcutaneous form of Methotrexate has stopped the nausea👍

    Unfortunately as I have mentioned before the injection form of Methotrexate actually made me get sick. I didn’t mind doing the injection because as you say the Metojet syringes are smaller and I don’t mind needles because I am used to them because of all the blood tests I have had over the years. 

    I was switched to Leflunomide which doesn’t make me sick.

    I used to take Folic Acid for six days a week to prevent the nausea but it didn’t work. I was also prescribed with lots of different anti sickness medication but none of these worked either. 

    I suppose some patients can tolerate Methotrexate and many other patients I have spoken to don’t have any problems with it, I am just one of those patients that can’t tolerate it.😗 

    You make an excellent point about using an employer’s occupational health to get the workplace adjustments you need. I have done this and I got the equipment I needed to do my job😄 
  • Beanie71Beanie71 Member Posts: 8 Listener
    Morning All

    I'm currently taking tablet form of methotrexate 20mg weekly (week 5) also daily prednisolone (week 3)  
    My days are still very much up and down, pain now seems to be in my ankles and hips and I'm constantly tired and feel like my body is constantly fighting against something, 

    I've been on sick leave from my job since July and at the moment I cant see myself returning anytime soon, this gets me down as
    I enjoy my job and miss my colleagues, luckily I'm still on full pay at the moment but this will be reduced I'm sure shortly, just worried about my financial position as I live alone and would be unable to support myself if I cant get back to work. any advice would be great going forward.

    Still waiting on PIP assessment etc so unsure where I will stand.


  • CressidaCressida Member Posts: 489 Pioneering
    Sorry I cannot help about the financial side but this flare will pass. When you are in the middle of it it feels like you will never be well again. I have had similar thoughts in the past but I'm still in full time work 34 years since diagnosis. Have you been on biologics? It's a horrible cycle of pain and worry when you are going through it. Keep posting as there's lots of supportive people on this site.
  • RAwarriorRAwarrior Member Posts: 469 Pioneering
    @Beanie71
    @Cressida

    I agree with Cressida’s comments.

    It will take a while for Methotrexate to start working as it isn’t a drug that works instantly. 

    If Methotrexate doesn’t work then perhaps you could ask your Rheumatologist about a biological drug. 

    However, it depends on the criteria for going onto a biological drug. 

    In my case I had to wait until my RA got really bad before I was put onto 
    a biological drug which might seem strange but sometimes the criteria for going onto a biological drug means that conventional drugs on their own have failed. 

    Methotrexate on its own is a first line treatment so many rheumatologists have to prescribe it in the first instance as it works with some patients. However, if it doesn’t work then they might consider putting someone on a biologic but unfortunately it depends on which hospital trust you come under. 

    Biological drugs are very expensive so funding has to be applied for by the hospital. There are also different risks with taking a biological drug.

    There is information about the drugs used to treat RA on the NRAS and Versus websites which you might find useful.

    It’s important that you discuss treatment options with your Rheumatologist or Rheumatology Nurse Specialist. 

    Rheumatology is a field of medicine where there are new developments, there is a lot of research particularly in relation to new treatments.

     I hope this helps😁
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