NRAS

Feeling scared

I was just diagnosed with ra recently

In need of someone to talk to you

Any advice you have for me would be a big help

101 Replies
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Hi Terri

I am sorry about you having RA but hope you will find a path through that suits you.

NRAS website has loads of information.

It is UK based but on here, there are others suffering AI diseases and they don’t all live in the UK.

I must go and finish drying my hair, it is -1°C here, high of 4° expected, so not going out till all damp is gone and I can put a hat on!

Take care of yourself!

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Thank you for your response

I live in the us and it's been very cold here

I haven't been out much

Does the cold affect your ra?

What type of medicine

Are u on for ra?

Doctor just started me on sulfasalazine and I am finding it hard to tolerate

Making me depressed

Can't sleep nasesus

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I replied to your other post re medication.

Unfortunately, I am among those with a less easy to treat ie more severe RA with two lots of autoantibodies on the rampage.

But it responded well to DMARDs.

The only way cold affects me with RA is causing increased pain in already damaged areas (due to RA) eg mastoid bone behind the ear.

If secondary OA starts in RA damaged joints there will be worsening too in cold weather/damp conditions.

But there are ways to help your body by maximising health and therefore your chances of dealing with auto immune (AI) disease.

I use turmeric curcumin, Boswellia (frankincense capsules), astaxanthin, boron and magnesium in various ways.

Wishing you success in getting on top of RA. :-)

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Thank you for your advice. After a sleepless night, I needed someone to talk to and I am glad I joined. It helps to have your support.

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Hi Terri!I live in OH and yes its cold here And the weather does affect me at times.I also have palindromic rheumatism and that is affected by the weather all the time

Iknow this is all worrisome but in time once the drugs take affect you will feel better able to cope with all of this.

I have been on this journey for 25 years.

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Hi Bev,

It was -3 this morning here in Vermont. Had a breakfast date with family so had to go out in it. My ra was bothering my fingers a little. I have been trying to stay in when its real cold. Don't want to get sick.

So what kind of meds are you on?

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Now I am taking low dose prednisone ,leflunomide,and folic acid.I was on orencia up until a year ago.off biologics now because of serious infection followed by surgery.

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Hi!

The cold totally affects you ra, personally it depends mostly on the humidity.

I’m on methotrexate and humira, but i started just like you with sulfasalazine... sadly it didn’t work for me. I was also depressed during that time and i was feeling nauseous but not too much, however i hardly could finish any of my main meals.

If you feel like you can’t bare with the side effects, tell everything to your doctor! He will find the right solution.

Don’t worry, i’m 18 yo (diagnosed at 15/16) and right now i’m in remission, but i had to find the right medications for my body. When you start it’s hard, but it’s gonna get better. Stay strong x

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Join the NRAS and talk to one of their advisors for informed advice as we are not medically qualified to to do that.

If it helps for me RA is not a life changing disease more like a minor inconvience as I have to take medications every day. But it can take a while for the medications to work and for some there are side effects for others there are'nt. I think that you must be optamistic that the worst is over and now treatment can begin. There are a lot of medicaitions available and be guided by your health professionals. If your in the UK, the NHS treats RA well and you'll be referred to a consultant at your local hospital. But do look up the NRAS website the info is up to date and very helpful.

Please don't think life is over or be scared, so many illnesses are much worse and remember that if 10% get side effects then 90% don't and therefore the odds are good that you'll be in remission. Don't be thinking that its no more swimming, running or walking etc a few minor adjustments might need to be made and you'll know when to rest if fatigue is a problem. RA is different for everyone and so is treatment. I like to say that I'm sorry your scared but don't be, RA is not the dreaded disease for most people it once was . It may well be that for the unfortunate few but mostly not all.

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Thank you for your advice. I needed to hear from people who are dealing with the Ra. I was talking to my mother and fiancé this morning and I don't think they really understand what I am going through sometimes. My mother keeps telling me exercersize and keep moving. She is right but there are days I don't know what to do with myself. I have been in a rut the past 3 months. Lost my job due to this disease . My boss couldn't deal with this. No sympathy at all. I have been looking but nothing yet.

Any suggestions what I can do to occupy my mind? I make money online throughout the day but I really need to start moving .

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You can't loose a job becauce of illness these days ring ACAS for employment advice. This isn't a death sentance and your mum is right but take it at a pace that you can enjoy. It will get worse if your depressed as well. Talk to your GP asap.

Learn a new skill, or join a club, but don't stay in looking for aches and pains they'll find you and being afraid is not good either. RA is contronable and life continues on. Get out and walk if nothing else you'll feel better in yourself and try yoga.

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Terri is in US....ML

I'm sure there is the equivalent to ACAS over there....any ideas US posters???

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Things are different here with work

Do you pay unemployment

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Join the Arthritis foundation .For 20$ a year you'll receive a magazine with a wealth of information.

Also I think its very important to have a rheumatologist you like ,is good,and you can help guide your own journey.

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Thank you for your advice. I appreciate it!

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Hi, I'm from Maryland. If you contact either by phone or online the U.S. Equal Employment Opportunity Commision ADA(Americans with Disabilities act) was passed in 1990 so that you can't be fired/discriminated against if you are still qualified to do your job. I hope they can help you!

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I tried but they told me I wasn't at the job long enough. In order to qualify you need to be at the job at least a year.

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Wow, really? The EEOC site stated these reasons:

"Employers can fire workers with disabilities under three conditions:

The termination is unrelated to the disability or

The employee does not meet legitimate requirements for the job, such as performance or production standards, with or without a reasonable accommodation or

Because of the employee's disability, he or she poses a direct threat to health or safety in the workplace.

I know very small companies may not be held to the same(I think those that are under 50 employees).

It's unfortunate they could get away with that because of a time frame. That is terrible! I hope in the future you find work with an employer that shows more respect and compassion.

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You are right and I am not going to let this get me down

You have given me great advice

I need to fight this

Disease

Have u heard of ra lung disease

They say I have that

Don't understand how

Never smoked

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.

Don’t know if this’ll help, Terri1020: here’s some discussions (& NRASers) with lung issues 🌬: healthunlocked.com/search/r...

There’s also a stateside RA forum, ‘Cure Arthritis Community’ ( healthunlocked.com/cure-art... ), if you’re interested in participating there as well. 😌 ☺️

Very best wishes to you, Terri1020. 🙏 🍀 🌺 🌞

.

🎄 🔖 🎁 🎅 ❄️ ☃️ 🌨

.

Oh, there’s also the British Lung Foundation(BLF) forum which also discusses RA-related lung issues: healthunlocked.com/search/r... ; healthunlocked.com/search/r... 🗣💨

.

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Thank you so much for that link. It was a big help

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I've had unexplained clots in the lungs related to RA in probability as having RA makes some people more at risk of other conditions. ILD is the same, but you need to talk to a medical doctor really for proper advice that is applicable to you. I stronglybelieve RA cannot be controlled or cured by diet but being a healthy weight and getting excercise is benefical.

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I have that Terri...mine is called Bronchiectasis, or Rhuematoid lung, RA unfortunately can attack soft tissue such as liver, kidneys etc...but they can usually spot problems with all the blood tests and x-rays we have which are so important...the thing I have to watch is that im prone to chest infections & find I get breathless easily walking up hill.

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yes, I have the bronchie also. my pulmonologist did a bronchoscopy to clear out my lungs and said I have a mild case of this. have you had this procedure? I also have to watch out for chest infections. Did you get your flu and pneumonia shots? I did - this was the first year I got them .

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Though I have very mild asthma, I am just like you-never smoked a day in my life, but I am dealing with rheumatoid lung too. It feels so unfair. I had a nodule in the lower left lobe, which they at first thought was cancer and kept asking me if I or any of my family smoked, to which the answer was no. After 2 years of tests and watching they saw it wasn't growing at all I escaped having a lung biopsy thank goodness. I deal with fibrosis(scarring) in that lower lobe. My pulmonologist told me that my RA manifested first in my lung, when she saw my first x-ray in the ER she gasped-my lungs looked like shattered glass inside. It was pretty scary and many are not aware of this. She aggressively treated me with high dose prednisone and got it under control. I was told to inform my family to be aware for their own health. Once weaning from the pred was starting I started having joint pains. That's when my primary referred me to a rheumatologist and after testing of course I was diagnosed with RA in 2008.

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They told me I didn't qualify because I wasn't at the job long enough. You have to be employed 1 year at a job. I am currently on unemployment and I am also making some money online. Hopefully I can get something soon. My boss was a nasty man. Right before I was diagnosed , My legs and feet became so swollen - I had to go to work with a walker. I could hardly walk. I was terrified I would be crippled. Thank god for cortisone shot in my knees. Swelling went down. I think my boss was embarrassed by my appearance. No matter what was going on, I showed up for work.

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Hi terri1020...I was diagnosed 5 months ago, with pain in hands feet & left knee..I have been on the highest amount of Methotrexate tablets for 12 weeks & though it seemed like forever, they are just begining to work for me & thankfully, no side effects except being really tired couple days after taking it, It hasnt sorted my knee pain completely but this week I am starting on the Methotrexate Medipen which my nurse says could give me 10% better relief so im looking forward to starting that. Regarding keeping moving, I go 3 times a week to my local pool for "Muscle & joint mobility classes" in warm water & I feel amazing when I come out. I also use an exercise bike at home but only very gently for about 15 minutes a day &of course i walk whenever I can!. Please dont be scared as I was at first, talk to your Rhuemy Nurse & read some of the helpful advise on here...if one medication doesnt suit you they will find one that does. But just as they kept telling me, its taken 12 weeks to start working. Ive been lucky that my first one seems to be the rignt one but you may have to keep trying others (& moving) haha.

So good luck on this frustrating journey..sending "gentle" hugs!

Best wishes, Tricia

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Hi I was diagnosed with RA in October this year after 4 months of pain and unable to move I had trouble getting up from chair I'm now on medication and now it's starting to ease so hope you start feeling better soon

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Hi. What medication have they put you on? How long did it take for it to start kicking in?

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Hi Terri I'm on hydroxchoroguine sulfate (400 mg pre day) methotrexate (20mg pre week) and 10 mg of prednisone (per day) . I've been on them for 6 weeks now and and the last 2 weeks the pain is bearable it dose ease throughout the day with a little exercise like short walks

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Hi! I am currently on 10mg prednisone and the 1000mg sulfasalazine. Having a hard time with the sulfa. It has helped with joint pain but I cant seem to get my left foot to go down . Also been experiencing nausea, sleepless nights, and fatigue.I know it takes time for the meds to work so trying to stick it out before telling doc I want to stop.

I would love to be able to go for a walk but its been very cold . I been trying to avoid the cold as much as possible.

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Sorry your feeling so bad I would go back to doctors there are other meds you can take. I've been lucky I have just got back from RA clinic and they are starting to reduce my steroids She said I'm doing very well in new year I have to start building my body back up but you do need to go explain to the doctor how your feeling

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I go back to doctors January 9th. Trying to wait till then. See how I do. If I need to call him sooner, I will. He wants me to cut back on prednisone to 7.5 but when I called him last week and told him my foot was swollen. He said stick with the 10 for another week and try going back to the 7.5. When do you start cutting back? What dosage ?

Yes, I need to do the same. Been very inactive lately.

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I start cutting back tomorrow morning down to 7.5 I'm hoping it's going to be ok the last time I cut them out I was worse. Is the swelling water retention? I have that a few weeks ago

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Hi. Well hopefully you will do better cutting back this time. I also tried to cut back and couldn't do it. So, doc for now said its ok to stay on the 10. Not sure what is going on with the left foot. Doesn't want to go down. How did you get yours to go down?

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Hi

When I was resting ( witch was most of the time ) I tried to move it like gentle exercise and when lying had my foot raised it took a while.i hope you feel better to be able to enjoy the season

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Hi,

Had a busy day today at doctors. It took all I had in me to go out in the cold weather . My dad convinced me to go and I am glad he did. I also have been very inactive like yourself. I felt weak and scared to drive . I don't know if it was me being active or if the sulfasalazine is finally kicking in but my swelling has gone done finally. No joint pain either. My concern is my ra lung disease. Have you ever heard of that?

Have a wonderful holiday!!! What are your plans?

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Hi pleased you went to doctors and your pain has eased and your swelling has gone down just take it easy don't to to much and wipe yourself out build it up gradually. I have only driven 3 times in six months so I know how you are feeling about that .I have heard of RA lung but I don't have it but from what I do know it can cause shortness of breath. I'm spending the holiday season with my daughter's and grandchildren looking forward to it.have a lovely time and hopping you stay pain free .

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Hi.

How are you feeling? I am doing ok. Yes, I am trying to take it easy. Are you working at the moment? I have been unemployed since September. I have been looking for a job . I was supposed to go for an interview tomorrow morning but it is freezing here . I don't want to go out in the cold with the ra. I am going to reschedule next week and hopefully it will warm up a little. How was your holiday? Are you doing anything special for New Years?

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Hi Terri I had I good holiday thanks hope you did to. I finished work end of August I was a sewing machinist making sort furnishing I'm looking to go back when I'm feeling better at the moment I can't lift and the curtains are heavy. Got nothing planned for new year will see when I feel better. I hope the weather warms up for you and you manage to get to the interview have you any plans for the new year

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The methotrexate I'm taking are making me feel ill the day after I take them the RA nurse said that I can have injections so I'm waiting to be shown how to inject it myself do you have problems with your meds

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Sorry your having problems with the metho. So, what kind of injection are you doing ? Metho? Is there anyone that could do the injection for you? They offered me the option to. If I need to get an injection, I am going to have someone help me.

Yes, I have problems with the sulfa meds. I keep trying to stick it out . I have been on them a month .

How did you make out with cutting back on your prednisone?

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Hi Terri

The injection shouldn't be to bad it's just like the ones diabetics use so I think I will be ok doing myself.the prednisone is up and down I have to cut a tablet in half and it dosnt always cut it equal so one day I get more and other days less it's my own fault I balance the cutter on my knees instead of a table.

What problems are you getting with your sulfa meds?

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Hi,

Good luck with the injection. What kind of injection is it? I still have not cut back yet still at 10mg. When I tried the first time, I wasn't feeling well . I need to give the sulfa more time to kick in. Plus , I didn't want to ruin my holidays. Been on sulfa a month now. No joint pain which is a big relief. Still have some stiffness in right hand in morning and some swelling on my left foot. Doesn't last that long though. The problems I am having are nausea, insomnia, fatigue. What problems are you dealing with ?

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Hi Bain,

Stayed in all day. Not going to be above freezing til late next week. I am a Bookkeeper/Office Manager. I was in shock when my boss let me go. He called me one afternoon and told me. It was because of my illness. He even told me I was a good worker. I think if we both got jobs it would help the both of us. It would take our minds off the RA.

I have not made any plans for the New Years yet. Probably just spend it with family . Maybe make a nice dinner and have some snacks.

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Don't be scared. It is a nuisance but is usually well-controlled nowadays and then you can live your normal life. HTH?

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what is hth ?

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Internet shorthand for Hope that helps! So hth as well for this reply!

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Yes got it

Thanks

How are you feeling with your ra?

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Me? I cope well thank you, because my Humira is so effective. I was back to normal within about three weeks of my first injection way back in 2009. I returned to being an active competitive cyclist and could not have done that without the Humira. That is notwithstanding my life-threatening injuries in 2012 that stopped me working etc. But the RA is well-controlled thanks.

My injuries etc. are described in my thread Inspirational...maybe?

Good luck with yours as well.

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I am sorry to hear about your life threatening injuries and I wish you the best.

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Thank you. Have a good Christmas.

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It may take some time to find the right treatment - and each medication has to be tried out for several months before knowing whether it has made a difference. Sometimes having a boost from a steroid injection or prednisolone by mouth can help while waiting for a result from the Disease Modifying Anti-Arthritis Drugs (DMARDs for short).

And it is well worth looking at life style factors - keeping up moderate exercise regularly, or asking for help from a physiotherapist if you can't manage it yourself, asking for help with daily life from an occupational therapist. Some of us have needed help from a counsellor to sort out the grief at losing our previous good health and fears about the future.

And you will find loads of advice about diet, some good, some overstated, but eating a good varied and healthy diet is the mainstay.

But you have made a good start - asking for help is often the most difficult first step to take!

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Thank you for your advice. Do you know anything about RA lung disease?

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Diagnosis is scary, but it's a good turning point. You were ill before, but now you know what it is and have some things you can try to improve it. You also have a great community of people to support you.

Biggest advice I can give you is to know yourself. RA and pretty much any chronic condition are very personal to you. There are common traits and triggers which can guide you a bit, but you need to work out what triggers you, what helps you etc. There are a lot of things that can affect it like pushing yourself a bit too much on a day out, having a cold, a sensitivity to some food or even just a late night or a bit of an argument with somebody that made you stressed.

Although it's your joints that will get the brunt of the effects it's your whole body that's involved. Get to know how that relationship works for you and see if you can work with that. It might help to use a symptom diary where you can write down how you feel each day and what you did. That can be useful for spotting patterns.

There's probably going to be a lot of trial and error involved with it, but keep remembering that you are worth it and that whenever things don't go well it's not your fault. Try your best to stay positive and look for the good things. And don't feel bad about treating yourself. Your mental health is just as important as the physical stuff so if sometimes you need to push yourself a little so you can do something you want to do then go for it. And if that means occasionally not doing something necessary like going to the shops or doing the washing so you can have the energy to have a drink with friends or something then so be it.

Oh and remember online shopping is a thing. I haven't been feeling too great recently so I've done an online Tesco shop to be delivered. That'll save my knees a bit of suffering and mean I have the energy to enjoy lazing around and watching TV/ playing Xbox with bf rather than sit trying not to fall asleep. :)

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Thank you so much for the advice. How long have you had Ra? What meds are you currently on?

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I have Palindromic Rheumatism (like RA, but more random and between attacks the joints are fine and there's no sign of any condition). Diagnosed a few months ago. Not on any medication cos the pain is manageable and I don't want to be going through all that if I can avoid it (since there's no damage with PR it's just a matter of symptom management).

I do take CBD oil for the pain though which helps cos normal painkillers have no effect. For me having some temporary pain relief and just knowing it's not all in my head is enough to keep me going.

I do wish I had something to help with the low energy though. Currently I'm just having to not do anything, but I'm hoping I can build up to doing some part time work or something.

How are you doing? Were you offered any medication? How are you managing with symptoms and all?

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Palindromic Rheumatism often progresses to RA, so do keep having blood tests, just in case.I started off with PR & was. diagnosed with RA 2 years later & started Dmards....negligible joint damage...that was 18 go.. ....& I am now in remission on Rituximab..

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Thanks for the advice. :) I will be keeping an eye on things and if anything changes I'll be checking it up with GP and if necessary pushing for a referral.

Unfortunately my GPs aren't the best with the whole thing. I only managed to get the diagnosis cos of a last ditch attempt at a private referral. They've been not so gently suggesting it's all in my head for a good while now after my thyroid levels reached normal range. Their favourite thing to do is tell me that I'm young and should be enjoying life so I should just go out and do stuff.

Luckily I don't currently have factors in my blood so apparently that means I have the same chance as jo public of developing RA right now. And I do have the details for the specialist I saw if I ever need to go back to them (although I will have to pay for that so I'd like to avoid it if I can).

It'm so glad somebody mentioned this site to me. It's so great knowing I'm not crazy and hearing from all of you lot. :)

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Most GP's are useless where RA is concerned..to them it's a boring incurable disease,& they try to fob you off, often suggesting it's all in your Head!

When I first presented in my 50's, my GPtold me I had to expect aches. & pains at my age....I refused to believe that & like you booked a private appointment with a Consultant Rheumatologist...who disgnosed PR.I was lucky in that I saw him regularly, & when my "aches & pains" got worse, my bloods showed Sero+ RA.

Buy a piggy bank & throw in a tenner every now & then,& if you feel you need to see your consultant you'll have his fee ready.With RA & a disinterested GP you have to take charge of your own health.Don't put up with constant pain....get help to protect your joints.

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I hear a lot of this from people that others think its all in your head. So far from the truth. The doctor probably doesn't know what is wrong and is making it seem like you don't know what your talking about.

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Thank you for the advice and good luck to you with your remission.

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Morning Terri,

So sorry for your diagnoses but on a glass is half full kinda view you get to be with us lovely people 🤗

I was diagnosed two years ago but finding the right treatment has been a long process for me. Two days after being diagnosed i found out i was pregnant with my second child. So with pregnancy and breast feeding im only just starting properly with medication. I start enbrel next week which is a biological drug, methotrexate didnt agree with me and sulfalazine didnt seem to have any effect what so ever.

The cold doesnt effect my ra at all as luckily enough i dont currently have any bone damage.

You have a long road ahead but not necessarily a bad one, just a different one. Ra has giving me a different outlook on life. Im the closest ive ever been with my husband, i spend more time with my two baby boys, ive made friends in similar circumstances who i receieve love from like never before. I wish i didnt have to have ra to be in this position but at the same time me life wouldnt be as full of love as it is now.

Ohhhh and the people on here never let you suffer alone, they are the kindest people i have ever spoke to.

Sending love

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Thank you for support/advice. I was diagnosed in August. Since then , I have tried mycophenalate which screwed up my liver levels. Doc had to take me off. Now he has me on sulfasalazine the past 2 weeks. I was having a bad night the other night and decided to join this site .I am glad I joined -you are right there are a lot of kind people to talk to. I think I was having some side effects from the sulfa. Let me know how you make out with the Enbrel. How are you feeling? Are you having any symptoms?

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Hi Terri, I remember when I was first diagnosed with RA, I was so convinced I didn’t have it, I went to the Rheumatology Dept on my own, I was totally shocked and cried when i git home. But after trying drugs am now on Methotrexate weekly injections, got to say am much better now, got damaged to my knuckles, and I do have flare ups but it’s all in trying to manage them. My life is still good, I dont tell people I have RA they never understand what it is. So life is ok, do what you are told, rest when tired and don’t do too much at once. The best of luck with it all.

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Hi,

I was also shocked . I cried too. I was in denial. I didn't believe the doctor. I went for another opinion and was told the same thing. How did this happen? They say its common in the genes or in people who smoke. Nobody in my family has it and I never smoked a day in my life.

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Hi Terri,

I am in CT, it's also very cold here! I was also recently diagnosed, and was in shock. I wasn't sick and just had a couple of sore joints, when my doctor diagnosed me, I cried and cried and cried. I am only 36, I have a 14 month old, how could this happen. And then I found this site and finally felt like I understood. There is a lot of helpful information and people. Besides taking my medicine (I am on methotrexate), I also eat pretty strictly, I follow Paleo AIP. Which does help, for me. But as we are all differently impacted by RA diet can be different too, it's all about finding what works best for you. I know stress is a trigger for my flares, so I practice yoga and try to enjoy everyday. Exercise does help, i notice a difference when i am more active, but if my feet start to hurt, i stop. Try and stay positive and find what will work best for you! Stay warm!

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Hi! Freezing here in Vermont. -3 earlier. We are warming up to a whopping 14. I went out this morning for breakfast with family. I try to stay in when its really cold but had made plans. My ra started bothering me in my hands a little. Does the cold bother you? Took them almost 2 years to finally figure out I had ra. I found out in August 2017.I cried also. I didn't believe it was true. I went for second opinion and they also said I had it. There are times I still think it may be something else. Did you go for second opinion?

Are you currently working? Right after I found out I had Ra, my boss called me on the phone and let me go. It was a shock and he gave me no reason for letting me go. He even told me I was a good worker. I think it was because I was sick. Worked all my life and never had this happen. Been trying for 3 months to get another job but having a hard time finding something. Hopefully, something happens soon. Need something to keep me occupied. I am not one to just sit around .

I was on prednisone for 2 years before being diagnosed. Currently on 10mg .

He put me on mycophenalate with the prednisone at first. Screwed up my levels. Took me off that and currently on sulfasalazine . I have been on it for 2 weeks. Had some bad side effects. See what happens.

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New England weather, it's 15 here today. The cold doesn't help! Someone told me to sleep with socks on and I did notice a difference. My RA mostly impacts my feet. I was diagnosed about 8 weeks after I started showing symptoms. My rheumatoid factor was high, but I came back negative for anti cup, and I showed no erosion. My rheumatologist said the fact that we found it so early and I have no erosion I have a good outlook. I didn't get a 2nd opinion, I have one of the best doctors in the state. He is treating me aggressively up front to try to put it into remission, I am on my 2nd week of the methotrexate. Luckily so far I have only been tired for a few days after taking the medicine. I do still work, my boss is very understanding, he has even said I can work from home if my meds take a toll on me. I haven't had to do that. I also work in finance so most of my day is spent sitting, and my hands aren't affected so I can still do my job.

I hope you find something soon! I would talk to your doc about side effects, and if you don't feel confident with your doctor a 2nd opinion doesn't hurt.

Most days I wake up in denial, and then I get out of bed and a pain in my foot shows up and I remember. Each day gets a little easier. I just want to be able to chase after my son and play with him, so I will do anything to make sure that happens, so for now that is what keeps me going everyday. I hope you find something to help you through each day.

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Hi,

I have the best socks for your feet- I ordered myself a pair from LL Bean website. They are fleece socks . They are so comfortable. I Need socks without the elastic. My feet go down at night but swell during the day. Let me know what you think if you buy a pair. They say the sulfasalazine I am on helps with the swelling so we will see what happens.

What are you doing for shoes? I have been buying bigger shoes. Wide Width. Try not to wear them to often- start to bother me.Since, I am not working, I feel the most comfortable barefoot. Will throw on a pair of socks if feet get cold or slippers.

I also work in finance but my boss was not understanding at all. Right before I was diagnosed, my legs and feet were huge. I was going to work with a walker and couldn't drive they were so bad. But I always showed up no matter how bad I was. I was so scared thought I would never walk again. Finally, got to see my doctor and he gave me a cortisone shot and I was able to walk again. It was then, he said I have ra. I told my boss my diagnosis and I was on the road to recovery and a week later he called me on the phone and let me go. Gave me no reason. I think he was embarrassed of me and my appearance with the walker. I was not using the walker anymore.

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I will check out those socks.

What a terrible boss! I feel like some how that is discrimination. So frustrating that there are people like that out there! I feel like somehow you should have been protected under that disabilities act, but I don't think that is a covered class. Sounds like Vermont law is similar to Connecticut in that you can fire someone for no reason.

I pretty much have stopped wearing heels, unless they are a very low one. I can still wear wedges. I bought inserts for my flats, those help a bit. I am most comfortable in my boots, they seem to offer the most support. Luckily I can still pretty much wear all of my shoes. I am usually good to go about an hour after waking up. So by the time I get to work I am good to go.

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Hi,

To this day, I still cant believe that he let me go. I loved my job. He gave no reason and when unemployment tried to contact him, he never replied. Currently on unemployment and making money online also to help with bills. Hopefully, I can get something in the new year. Wait to you hear this, my ex-boss let me go on 9/1 and had already cancelled my medical insurance 8/31. I had no insurance. I contacted him via text-no response and then I got a hold of someone in the office and said you cant terminate me without giving me the option to take cobra. I received a cobra letter and insurance was 720 a month. No way was I going to pay that. I ended up qualifying for Medicaid at no cost for a few months and now I am back on the plan I was with assistance. Sorry to ramble on and on. I am just so pissed off and helps to get it off my chest.

Let me know about the socks. So, you only have swelling in the morning? Are you taking anything besides the metho for swelling?

On a happier note- Merry Christmas! What are your plans?

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Sent you a PM

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Hi Terri, I'm in the UK, was started on Sulphasalazine and the drug has been working for me, so it can be quite affective, just takes a while to work.

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Hi. How long before you noticed any benefit?

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Hi. Any benefit? What are you referring to?

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Hi. I am in US. How long have you been on it? How long did it take to start kicking in?

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Hi, must of taken about month or two, I had a steroid injection at the same time, so wasn't convinced it was the sulphasalazine working till it was well over 3months, that's how long a steroid injection can typical last, but it does vary a lot. Have a look at some of my previous posts if you need more info. Merry Christmas 🎄

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Hi Phil,

My third week on sulfa. Doing ok with pain . Swelling in left foot. They say that the sulfa helps with swelling but haven't seen a change. I was reading one of your posts and you said you were not yourself on this drug and they wanted to check your vitamin d. What happened with that? I haven't been myself lately also. I also read you are in remission. Are you still taking sulfa? Merry Christmas to you also!

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Yes I'm on 3tablets a day still, 1in the morning and 2 in the evening, side effects are minimal now if any at all, is every twinge or feeling due to medication or illness? My swelling was never that bad, so can't help you with that one. But my vitamin D was low, and can say I'm not feeling as fatigued as I use to since taking Vit D tablets , been on them couple of weeks now. I still do get aches and pains, but nothing to bad.

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Hi ! How was your holiday? I am on 2 tabs of the sulfa and 10 mg prednisone. Doc wants me to go to 7.5 prednisone but have had no luck cutting back yet. I hope he doesn't increase my sulfa having a hard time with it. Its been a month and I have seen some improvement . I am waiting for lab results on my vitamin d - see what happens.

So, what are your plans for New Years?

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Hi Terri 1020

Not sure how old you are.. But I can tell you there is lots of help out there.. I started with RA at age 46 and now 68.so had it for 22yrs. You will have various Meds and you will have to experiment what works. You will have good and bad times. You will discover the foods, the climate, your thoughts, stress,.... How these effects RA... You will have to battle with your doctors.....

They will try to help you as best as they can but it may not be suitable so stand your ground and don't be afraid....

So these are my experiences and I write to you as a RA sufferer who is carrying on with life busy with grandchildren and enjoying my hobbies....

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Thank you for your support/advice. Just signed up and what a difference in my attitude. What meds are you currently taking? How are you feeling? Do you still have joint pain, stiffness in morning, swelling?

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Hi I am relatively new too

Was diagnosed mid September and started on methotrexate which didn't do to well as it made me short of breath. Now I'm on leflunomide and all I can say is sometimes I throw up. This weekend I had a horrible flare up. Hope this stuff works I've been on it 3 weeks now. I do get depressed but that could be me and not the meds I just don't know.

I live in Texas a relatively warm state but when it's cold I've learned to stay warm. I used to love the cold .

All I can say now is follow Drs orders, the people on this site have been great w questions I have had --so ask, and try not to stress. It is scary when you look at internet too much!!!

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I have been on a low dose of prednisone for past few years. Took them a good 2 years to finally figure out I had ra. Diagnosed in August- He started me with an ra medicine called mycophenalate - did blood work while on me and it was effecting my liver . He took me off that and waited for me levels to get back to normal. During that time I had a flare up. He put me on prednisolone for a week and it cleared me right up. Now he has me on sulfasalazine for the past two weeks and is trying to ween me off prednisone,

Felt terrible a couple of days ago- depressed, naseaus, couldn't sleep and that's when I signed up for this sight and it has really helped me. However, I am going to stick with it and see what happens .

I hope you find the right meds that work for you and feel better.

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I was also recently diagnosed, in early October. I had pain in my hands, feet, wrists and elbows...progressively worse over 6ish months. Went to the doctor pretty convinced i had RA, my family doc didn’t think that was it but ordered a rheumatoid factor anyways (basically just to appease me i think)....well it came back strongly positive so i was then referred to rheumatology. I am currently taking 20mg of methotrexate weekly. My CCP numbers were really high so my doctor wanted to be a bit more aggressive to start. I’ve been on the methotrexate for 6 weeks now and i haven’t had any pain in any joints but my feet in over 3 weeks now! And my feet are gradually getting better! I have had 2 pretty bad colds since starting the methotrexate but that’s the only side effect i have noticed. So far pretty happy with my treatment plan.

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Good luck to you! Are your feet really swollen? Are you able to wear shoes? My feet are swollen during the day but go down at night? I had to buy an extra wide shoe. I only wear shoes when I go out, When I am inside my house, I like to walk around barefoot. If my feet get cold I wear socks with no elastic on them or slippers. I just bought these really comfortable fleece socks from LL BEAN website. They are so comfortable- I recommend you get yourself a pair.

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My feet are maybe a little bit swollen but nothing noticeable that affects my shoes or anything like that.

Good luck to you as well! I’m happy to have found this site with so much valuable information!

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I know it's frightening, but your medical team will find a way through eventually. We are all different. I reacted very badly to Methotrexate. I'm now on Hydroxychloroquine and Leflunamide and so far so good. It takes time. You may need to try a number of drugs before you find the combination that works for you. It's very important that your family understands the condition, especially the fatigue, because you don't look ill, people can find it hard to get their heads around it. I gave my family information to read about the drug therapies and fatigue, which helped enormously. These publications on the Arthritis Research site are free to download: arthritisresearchuk.org/sho... You should also consider doing the same with your employer.

This is a good place to talk and find out about what has helped others. It's not the end and the therapies are getting better and better. The advances in just the last 20 years have been amazing.

Good luck Terri and take care xxx

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Hi! Thank you so much for your support. I really appreciate it. When were you diagnosed with RA? I was diagnosed in August. Doctor had me on mycophenalate at first and it was effecting my liver levels. Took me off that and waited for my levels to go back to normal . Currently taking sulfasalazine for the past 2 weeks. Not feeling the greatest . Trying to stick it out a little longer before trying another medication.

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I was diagnosed back in April, so it's early days yet. It's hard to be patient when you are worried and in pain, but it might take a while to find the combination of drugs that is right for you.

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I am not feeling any pain. Morning stiffness and a swollen left foot. Hopefully soon , sulfa kicks in.

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Sorry I have not read all the replies. So I may be repeating what someone else has already said. Give the Helpline at NRAS a call. They folks on the Helpline are a wonderful bunch.

nras.org.uk/helpline

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Thank you. Is it available to people in the US?

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Sorry I do not know. Take a look at the website.

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Yes, I just did. No number for US. How long have you had ra? What treatment works for you?

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Sorry to hear that. I am sure there is a US version. Give Google a go.

Me, I was diagnosed in 2012. MTX gave me my life back. But it can take time to find the right combination of meds that work for you and also it takes the meds a few weeks to start performing their magic.

I hope you are in a better place soon - but if not and I know it is easy for me to say - be patient, you'll get there.

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Very difficult to deal with. But I need to stay strong. I appreciate your support.

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Hey and welcome! I am in a similar boat to you, having reached a diagnosis of inflammatory arthritis less than six months ago. It can be scary, and particularly for me was the intense burning sensations which led to panic attacks as it just felt so dangerous and we didn't know what it was.

One of important things for me to do is to find a balance between staying informed and considering minor lifestyle adjustments (I got a stylus for my phone, and put it down on the table/my lap to respond to messages, rather than holding the phone in my hands, for example, to avoid undue stress on my hands) but also not feeding into your anxieties by bombarding yourself with (sometimes, mis-)information right in the beginning.

What I'm trying to say is : Let yourself experience your reaction to this recent news. I personally was scared about what it meant/means for my life and future, mad that I've got yet another chronic autoimmune condition and actually stressed by every one suggesting helpful tips ("have you tried..?") every day - I had to tell family members to back off a little and to help me by listening to my fears and being next to me in my journey - not by offering to fix it with well-meaning advice ( "try this thing") right away. It made me feel like I gave this to myself by not having done those things, and I wasn't ready to start thinking about lifestyle changes when I hadn't processed the news emotionally.

Find a hobby that brings you joy - I took up taking care of a potted plant garden 🌿 when I could not do my art/calligraphy and found that very relaxing - and don't despair if you have to put a hobby or two on hold while you learn about how your body is going to react. Some days all I can muster is watching cute animal videos or a funny stand up comedy, or having time with friends, others I can draw and be creative - but keep doing stuff that takes your mind off this once and a while and remember that attending to your mental (or spiritual, I'd you roll that way) health is important self-care. Mindfulness helps me, and I even found a free group here in Oxfordshire where I'm based!

Sorry for the novel-length reply!

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Hello Terri. Joining this support group was one of the best things you did for yourself during the scary time after diagnosis.

The best advise I can give is just take a deep breath and follow your doctors guidance. You will discover friends & strangers will want to give you advice on how to cure RA. Just smile at them and follow your doctors advice. There are many medications that can control RA and hopefully you will find the meds that work for you soon.

All the best

Sue

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Hi ,

Thank you for your advice/support. When were you diagnosed with RA? What meds work for you?

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