New bloke

Hi I'm new here and this is the first time I've posted anything anywhere.I was diagnosed in April after inflamed joints in my hands particularly in left thumb and right little finger which was initially thought to be gout.After various anti inflammatory drugs and blood tests my GP referred me to a rheumatologist.I saw him in April and was diagnosed with RA.After xrays on hands,feet and chest,ultrasound on hands and feet he prescribed prednisolone,60mgs daily reducing by 10mgs a week,methotrexate 25mgs weekly and folic acid.Last week I saw my theumatology nurse for the first time and she went through everything and said she will probably prescribe sulfasalazine and hydroxychloroquine soon.So far I haven't had too many side effects apart from not sleeping and a raging appetite. I'm working full time in the building industry and I am a bit worried about the future and how this illness will progress.I've never been ill in the past and can't believe that this has happened.It seems like this all kicked after I gave up smoking,my rheumatologist blames smoking for the illness,mind you they blame smoking for everything!Mind you 40 fags a day for forty odd years can't do any good.Any tips and advice would be most appreciated.

21 Replies

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  • Hi and welcome to the club, I like you had worked all my life until 2014 when I was diagnosed with RA and OA and it's a lot to take at first but gradually with the help off your Rheumy team and all the wonderful people on this site who are in the same boat you will come to terms with it so don't be frightened to ask for help there are plenty off people on Here Who can give you great advice take care

  • I gave up smoking in February 1999 then in 2000 a got RD ,so it make you think, in 2003 I had to give up work because it got so bad,I haven't work since,this arwfull conditions never get better just gets worse Iam sorry to say

  • Hello Johnnyr, welcome to this awesome and informative support group. My advice to you is to take a deep breath and relax, trust your doctors. Being newly diagnosed is quite overwhelming. In time you will be in a drug induced remission.

    I wish you well

    Sue

    PS I had to look up the word "fag"..and then I giggled....40 fags aday means something else in North America. :)

  • Hi Johnny, welcome, let me start by saying i wish you were not here. Im a 56 year old male who was diagnosed just over 4 years ago following exactly the same symptoms as you have. I was also in the building trade most of my life and also a smoker until 4 years ago. Best advice I can give you is to ask as much as you can about ehat you dont understand and listen to your rheumy team, the best early intervention is critical now to try and put the brakes on this now to slow it down. Many people cope well and respond well to the right treatments but remember it can take time to find the right combination for you and unfortunately many of the meds can be slow burn and take many weeks to show results. Im not going to bombard you with facts or good or bad stories, you will find those in time. If there is a way to get you my direct email i will and having had such a similar experience you are welcome to any help I can give you as a fellow sufferer 4 + years further down the line.

    One change i eventually made which made a huge difference for me but may or may not work for you or others is that i eventually stopped ALL processed foods. That had as positive effect as many of the meds and i have had most including 2 bio-therapies, Its a hard diet to live with for many reasons but for me that change really helped.

    I wish you well in your journey my friend and I hope you avoid the speed bumps. Regards Leon.

  • Leon if you private message him with your email he will have direct contact with you.xxx

  • I gave up drinking 14yrs ago and the next year i devolped ra and i have heard that i could have had it a lot longer,but because of the alcohol it kept it down. Not that i regret stopping drinkng as there is alcolism in my family and to be honest its the best thing i ever did. I can't blame you for being worried,but if they can get the drug regimen sorted out right you should be alright for a few years.I had to give up work six years ago and have had ra thirteen years. There is hope for you so try not to worry. Hugs.xxxxx

  • Hi mate, like you, I'd never been ill, never had time off work and in 2013 I stopped smoking and started running!! Due to my work, I'm a Prison Officer i had to get some hep c jabs, due to them not taking I had them 3 times and boom RA. I've tried a few meds and for now I'm on sulphasalazine and hydroxychloroquine and im doing ok, I hate taking tablets but having seen an uncle have nothing for years I know I have to take them. I've never taken steroids, just the odd jab when I've been bad but I read they can cause you to be hungry. I work full-time and have 4 girls so I have to get up and carry on, I have however been able to get myself to a jail that is basically on one level as I had spent the last 20 years running up stairs in the old Victorian jails and basically my feet won't let me do that no more. It does come as a shock and it's taken me ages to get my head around things and admit that I have to change how I work and what I can do but it's part of the course. Any help and advice you need, this is the place.

    Take care.

  • Smoking has not been a factor in my case. Never had a cigarette in my life other than passive smoking!

    If they find a combination of medicines that works for you should be able to continue working. I was on the triple therapy ( methotrexate, Hydroxychloroquine and sulfasalazine) and for several years it controlled my RD. Later I started on a Biologic therapy. I am able to swim and cycle to keep myself fit. If the weather is okay next Friday I will be cycling a 7 mile round trip to see the Biologic Nurses.

    It sounds like you have a proactive rheumatologist I hope you get sorted out with effective medication soon.

    Cecil

  • Morning Johnnyr

    In a rush this morning but just to say hello. Sorry you had to join us, and the building game is going to be a tough one with RA.

    Wouldn't read too much into the giving up smoking thing, I still smoked when I got it and for 15 years after. Have since stopped but it made no difference (to the RA) as far as I can tell.

    Will speak more when I have time, busy day and feel like sh&t today 😱

    Good luck and try to stay positive, as hard as it might be for a bit. And don't go near Google for a bit!

    Ade

  • Hi, welcome, think there may be a link with smoking?, but I am a non smoker.. think I heard of a study were smoking can make RA/ pain worse, any way you haver decided to give up and that will be good for all your health in general!. Hoping some effective treatment will mean you can carry on in your trade,. It is harder with a physical job and that is in say an office job.. I cant stand for any length of time.. my feet are bad, but every one is different and not everyone suffers with their feet.

    May be you could become more of a foreman and do less physical stuff on the site, and as people say you have an active rheumatologist who can get you started on something which could turn your life around, the drugs do take some time to work unfortunately.

  • Hi

    Welcome to the group I'm pretty new myself. I've had RA for quite a while now seeing as it took them years to finally diagnose it. You will find your nurses are a great help and you can speak to them when you need advice ect so don't be frightened to ask . You will have Good days n bad ones. But I'm with you on the whole worried about work thing. I'm going to see my GP soon as having never let this thing beat me think I'm Going to take some time out as finally realised my health more important than work. So if there is one bit of advice I can give you is put yourself first .As i haven't n now it's time to do so. So listen to your body. And you will be fine.

    Chin up

    DEE 😊

  • Welcome, Jonny, to the club no one wants to join.

    As a bloke, we are under represented with only about 25% of sufferers being men. I think this inequality needs to be addressed with more men joining those affected. [yes, that's a joke] Or even better, a 50% reduction in women who are affected. Anyway...

    Unlike in the olden days, there are a great number of effective treatments available now. As your experience of the disease is specific to you (your autoimmune system has created this disease just for you!) how others achieve relief may not work for you, and visa versa.

    It will be a case of trial and error to find the combination that works for you. HCQ doesn't do anything for me and neither do steroid injections now - I've had six, 2 have worked and the last 3 haven't done a thing. I'm on MTX now and I'm going to wait for four months before thinking about it's effectiveness - or not.

    Diet is a good approach to think about. Refined sugar reduction is a good place to start and increasing vegetables. I avoid red meat (not had any for 6+ months.)

    Smoking does irritate the auto immune system so will probably make RA worse. I think blaming any one cause is probably short sighted, as while it may be a factor, it does appear there is a combination of factors in different strengths which may cause the condition. Keep your awareness of influences wide.

    There is loads of balanced information on the NRAS web site - go have a look!

    You will find a combination that works for you. Stick with the programme from your rhuemy team and ask questions.

    Cheers,

    MJ

  • Hello and glad you found this site. Well everyone has said all there needs to. But I just wanted to say it will be okay. It's frightening at first but as with most things life still rolls on. You know here you can get loads of support through the good and bad times.

    Sending you my very best wishes,

    Cas xx 💐

  • Hello Johnny, Sorry to hear you have joined the club. RA is a horrible and frightening condition when you first get it, but life doesn't stop. It will change and you'll have to adapt and live with it and I hope you have a good medical support team. I've lived with it for seven years and am almost back to how I was before. The NRAS people and help line, we the community are all here to help you all the way. So stick with it and us and I wish you all the very best, strength and keep us up to date with your story. Thanks.

  • I'm not going to comment about smoking except to say that I read somewhere that 5 years or so after stopping it's as though you hadn't, something like that, your body reestablishes itself.

    I would say that if you can keep your muscle tone and body weight down that should help you a lot. The new meds for RA sound scary but they can prevent joint damage. Steroids are usually a stop gap and can give you a raging appetite.

    I think in terms of exercise things like swimming are worth keeping up. As for work, it depends what you do as to how much your work might impact.

    But I hope you've got a mild version of this horrible illness and that you can use your present fitness levels to keep on top of a lot.

  • Hi Johnny R,

    I think everything that could of been said has been said, So just to say welcome this is a fantastic site for support and information.

    Sorry you need to be here. Hope the meds work for you but if not do not give up there are plenty of others to try it can be a slow process and adjusting to that may be difficult but good luck.

    Congratulations on cracking the 40 a day habit not easy to do.

    Best Wishes Smithfield

  • hello, I was diagnosed a few years back, and one of the foremost worrying things, other than this disease itself was whether I could continue to work and support my son. This disease is generally progressive, but there are many, many medications and combinations that can work to help put the progression in remission. Some medications work for some people but not others, so there is usually some trail and error with meds, until they find what works for you. I started on Methotrexate, and it was like a miracle, seriously it gave me my life back and I was able to continue working. I have since moved onto a biologic and I am still able to continue working, I do have a very physical job in health care here in Canada. My best words of encouragement are to read as much about the disease as you can, from many sources, so you truly know what your dealing with, just understanding what is happening in your body is power. There are many helpful people on here, you will find much information.

  • Hi Johnny

    Ditto to everything that has been said. You have found this wonderful forum. You will never be alone. Best wishes

  • Hello! As you can see, there's a lot of us with RA in various degrees of inflammation. Some are quite bad and some are luckier. You might have to go through various meds to find the right one (s) . Don't despair, it's not always as bad as theaedge1 says. Sorry but it isn't. It really depends on you, your drugs and your lifestyle coupled with a good rheumy team. There's loads of info on here, so plenty of answers to your questions from real people! Though I think you've probably guessed that already. My granny had this, my sister had this and now a brother. My sister and I both hold down jobs and brought up kids through it all, and luckily we've hit on a drug that seems to work. Still have irritating niggles and down days but you have to try to be positive. Best of luck to you!

  • Hello new bloke. Don't get me wrong but it's a shame to have to welcome you to the RA club. I don't have RA but my hubby does and I use this site for support. Like you my hubby has worked hard all his life. HGV class 1 driver. A real.grafter. Fit and strong. Took a nose dive just after this Xmas. Well the bad news is that he was very poorly in the beginning. The good news is that 5 months later we have seen big improvements so please don't think it's game over!! From what I gather it's a question of getting the meds that will suit you. I wish you well. Oh and by the way I'm not convinced that the fags caused it. Hubby has been a non smoker for 30 years. Still succumbed to RA. In truth no one really knows what brings it on for young or old. Hang on in there chucks. Sue 😊

  • You are very newly diagnosed and quite fortunate to have had some x rays done so soon. It won't be clear if you'll need to change job yet depending how you react to your meds and how active the R A may get. Take it a step at a time, Read about your condition but keep an open mind. Ask any of us in the group as it's good to get diff views and opinions.Take care xxxx

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