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T57
T57 Member Posts: 3
edited 28. Nov 2023, 14:04 in Living with arthritis
Hello Everyone....
I was recently diagnosed with RA 5 months ago and also ankylosing spondylitis. I am just overwhelmed by so much coming at me so fast. I have not gotten myself to even think of taking any meds yet because of all the scare side effects I hear about like toxicity to the liver and dangerous drops in cell counts and mouth sore etc.. the lists go on. But I also hear RA can attack vital organs too.... so im all over the place with all of this and really got so scared just thinking of it all that I was in th ER twice last week for panick attacks. I would love to hear from anyone who has had RA while and how you don't let it all scare you so much and how you are coping withit all . and the best meds to take, Thanks for reading my post. :)

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  • [Deleted User]
    [Deleted User] Posts: 3,635
    edited 30. Nov -1, 00:00
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    Hello T57,

    Welcome to the forum! A new diagnosis can be very overwhelming and I am really sorry to hear you are having such a difficult time. All the members and moderators here either live with arthritis themselves or care for someone with arthritis and are a great source of information and support.

    Navigating the medical system and understanding the medication options and potential side affects is complex and will take some time to get used to. I recommend speaking to your doctor about your concerns to help create a treatment plan that works for you.

    The following link has some information about the various treatment options that you may find useful as well.

    https://www.versusarthritis.org/about-arthritis/treatments/

    I see you are also suffering from anxiety and panic attacks which is completely understandable given what you've been through in the last 5 months. I find practising meditation and mindfulness really helps my anxiety. The following link provides some tips and information on mindfulness techniques.

    https://www.arthritiscare.org.uk/about-us/blogs/1712-getting-started-with-mindfulness

    Also, here is the number of the knowledgeable & supportive Helpline team who are available to talk to you in confidence.

    Helpline: 0800 520 0520 (9am - 8pm, Monday - Friday).

    Take a look around the forums and jump in where you feel comfortable.

    Please do let us know how you get on.

    Best Wishes,
    Alice
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Hello, it's nice to meet you and I am sorry you have had to find us. My situation is very different to yours as I have had auto-immune issues since birth and been taking regular medication since the age of 12. I have psoriatic arthritis (I began in 1997 when I was 37) and osteoarthritis which was diagnosed in 2011. I am now 60 and used to it all. I've stopped wishing I was pain-free and that things were different, I'm not and they never will be so I always try to make the best of what I have.

    You name the medication, I have probably tried it and have had very little trouble with any of them. Tablet methotrexate gave me a skin rash which, after years of dreadful eczema, did not bother me in the slightest but it was stopped. I now do the injected kind and occasionally feel extra tired a day after the jab but nothing more. Being so used to medication I never think about taking a new one, never research it (other people are not me, do not have my physiology, combination of conditions, share my medical history or experiences so the relevance of their 'horror' stories to me is . . . non-existent). People are often scared witless when they discover via the net that some of our meds are used in treating cancer but a) our doses are a tiny fraction of those used for that and b) many cancers are curable: arthritis is not.

    I take the meds because I know they reduce disease activity thus reducing the risk of extreme joint damage. If my doctor had been better informed I would have begun them sooner and would not be in the mess I am now but she wasn't, I didn't and now I stand out at my appointments as I am the one using walking aids: everyone else strolls in and out of their appointments with ease, not a stick in sight. :lol:

    Psoriatic arthritis damages the joints differently to RA. I know that if RA remains untreated then yes, after some years it can affect other parts of the body; if disease activity is reduced by suppressing the immune system then the likelihood of that is decreased. I know that in the UK (your terminology suggests you are elsewhere in the world?) we are carefully monitored with blood tests to nip any potential trouble in the bud and, from experience, I know this works. As for recommending meds there is no point; what is helpful for one person does nothing for another. I wish you well and please let us know how you get on. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • DavidMG
    DavidMG Member Posts: 1
    edited 30. Nov -1, 00:00
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    Hi,
    I am David, have suffered from OA for twenty plus years.
    Unfortunately, my high blood pressure only allows pain killers to treat the complaint, The result of which I am half drowsy for most of the day. Looking forward to VA group sessions to highlight alternatives.
  • [Deleted User]
    [Deleted User] Posts: 3,635
    edited 30. Nov -1, 00:00
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    Hi David
    welcome to the forums it is lovely to have you here. I am sorry to hear you have osteoarthritis, what joints are affected. It's not nice to feel drowsy on pain medication, it might be worth having a chat with your pharmacist as they are very helpful. Also we have some great information on managing pain here https://www.versusarthritis.org/about-arthritis/managing-symptoms/managing-your-pain/
    I am sure our members will make you feel very welcome and share their experiences with you too. Let us know how you get and and what plans you have in mind for making changes. Most people post on the living with arthritis forums once they have said hello so please feel free to join in to any conversation.
    Best Wishes
    Sharon
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Hello, my OA was diagnosed in 2011 and came as a result of the joint damage caused by my other arthritis which began in 1997. Some joints have one, some the other and others both;. I began with one and now have around forty affected joints so pain is constant and unremitting. I keep my pain relief to the minimum so I have room to maneouvre when things worsen and use distraction as my major coping strategy but I am fortunate in that being female I have fewer pain receptors than a male, you guys definitely feel things more keenly and have a harder time adjusting to this horrible situation. Exercise is also important, the stronger and more flexible the muscles the better they work in supporting the joints. It seems counter-intuitive to place further stress on painful joints but it can and does make a difference.

    The meds for the psoriatic arthritis have caused my BP to rise so I have medication for that, as is the way with medication you 'fix' one thing only to cause another thing which requires attention. I'm not sure what other meds you're referring to, NSAIDs maybe? DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • frogmorton
    frogmorton Member Posts: 29,551
    edited 30. Nov -1, 00:00
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    Hi,
    I am David, have suffered from OA for twenty plus years.
    Unfortunately, my high blood pressure only allows pain killers to treat the complaint, The result of which I am half drowsy for most of the day. Looking forward to VA group sessions to highlight alternatives.

    David I did one of those courses! My advice is to go on it with an open mind and try everything they suggest :) Best of luck

    Toni x
  • frogmorton
    frogmorton Member Posts: 29,551
    edited 30. Nov -1, 00:00
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    Hello Everyone....
    I was recently diagnosed with RA 5 months ago and also ankylosing spondylitis. I...............….and the best meds to take, Thanks for reading my post. :)

    Hello T57 and welcome from me too.

    Am right thinking you are from America? We don't have ERs that was the clue...oh and gotten! :D

    Seriously though tell us which meds you have been offered I am thinking maybe methotrexate as your first option? There are side effects listed even for paracetamol (Tylenol??) but we all take it without thinking don't we?

    You might not get the side effects at all and bloods are monitored frequently to make sure you are ok.

    Talk to us and we'll do our best to help.

    Toni x
  • stickywicket
    stickywicket Member Posts: 27,725
    edited 30. Nov -1, 00:00
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    Hi T57

    I've had RA for well over 50 years so, if you have questions, just fire away.

    In my early years there were no modern DMARDS so it was just aspirin (Until you get a buzzing in your ears :shock: I was 15!) then NSAIDS and occasional steroids for many years. Which is why OA set in too and I had my knees replaced when I was 35.

    I understand the thing about scary meds, especially if you're not used to taking them, but RA, as you've discovered, can be a very scary disease. I finally got on to DMARDS and my life improved enormously but, by then, a lot of irreparable damage was done. Believe me, the sooner you take the meds the less likely that you will end up like me. And do remember that manufacturers are bound by law to list any potential side effects. Most of them remain only potential for most of us. But, untreated, RA damage is actual.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • stickywicket
    stickywicket Member Posts: 27,725
    edited 30. Nov -1, 00:00
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    Hi DavidMG

    I can so identify with the 'half drowsy most of the day' thing. Briefly, when a bit of cement dislodged from one of my hip replacements, I had to take oxycodone day and night. The result was mostly night for me as I couldn't guarantee to be awake at any time after lunch. My surgeon had told me that sometimes these bits can move on somewhere less painful so I determined to see if mine had. And I was successful. Now I have days again :D

    I've always taken some pain relief but always as little as possible because (a)they never do kill the pain and (b)how, in my younger days, could I safely look after my kids if I was drowsy?

    So, my go-to things are physio and distraction. They do work and allow me to enjoy life. I hope you'll find they do for you too.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • T57
    T57 Member Posts: 3
    edited 30. Nov -1, 00:00
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    Thank you for all of your responses to my post.... I am still not on any meds yet for my RA .. i go back to the RA doctor in mid may. I need to find a med that i can crush as i have this thing where i cant swallow pills too well. I was thinking of maybe takiing sufasalazine because i think there is 2 forms of that and one can be crushed. Does anyone take this or have taken it and can you tell me how it was withoyu and the side effects of it all?

    I also have ankylosing spodylitis and i used to love to walk a lot .... now i am afraid to take walks since i thinkit may aggravate it more to deteriorate my spine...??? is it okay to take walks withhtis conditon?

    Im so scared with all of this.......... please help with any siggestions at all......... Thank You T57
  • stickywicket
    stickywicket Member Posts: 27,725
    edited 30. Nov -1, 00:00
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    Not only is it OK to take walks, it's positively essential if you want to live well with AS. Have a look here https://nass.co.uk/managing-my-as/exercise/walking/ . Exercise is also essential for RA. What you really mustn't do, with both diseases, is turn into a couch potato as all sorts of things can go wrong then. Of course there will be times when walking / exercising is difficult. Be gentle with yourself then but remember that exercise keeps our muscles strong and supportive. Weak muscles are the last thing we need. Always listen to your body, though, and stop when you have more to give. You'll soon learn how to pace yourself. Do you have access to a physiotherapist? They're very useful to us.

    I've not heard anyone on here mention crushing sulfasalazine. I think that would result in us getting too much too quickly but your docs, or local pharmacist, would be the best to advise. Frankly, I think it's a bad idea to choose your meds by looking at what might not involve swallowing. For quite a few people the first, or even the second med they try doesn't work well and they have to try another. Trying to search for crushable ones would limit you enormously even if it didn't result in no meds at all. Besides, you'll probably need pain relief too. It could get extremely complicated.

    I have swallowing problems due to the OA in my neck. I just sit up straight, place the pill at the back of my tongue and take a large drink of water. It works almost every time and, if it doesn't, I just take another drink quickly. I don't think about it.

    I've never taken sulfasalazine. I take methotrexate and hydroxychloroquine. The methotrexate tablets are so tiny that, even with my swallowing problems, I usually pop two in at once to save time.

    Many tablets are no larger that the pieces of food that most of us swallow. Why not coach yourself into a better swallowing routine by starting with the tiniest pieces of eg carrot or apple and then graduating to larger pieces. I think you'll be glad you did it in the end. Good luck.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    I've always reckoned that if I can swallow food and drink I can swallow teeny-tiny tablets. I took sulph for years, no side-effects and no effect on the arthritis either but it helped to keep my skin clear of psoriasis. A friend of mine is superbly controlled on six tablets per day, no side-effects and is still in full-time work, cycling and running because, as I put it, he has PsA lite whereas I have the proper version. :wink: Exercise is vital, it may well hurt but as stuff does that's no big deal. Our muscles need to be as strong and flexible as possible because the less they support a joint the more that joint will hurt.

    I had to get to grips with doing my own injections so did and do them. It helps that I have never been healthy so am used to the whole farrago of living and dealing with regular medication. I remember trying to be a little precious about it all as a child and my Ma quickly putting me right. :lol: DD
    Have you got the despatches? No, I always walk like this. Eddie Braben