Recently diagnosed with Rheumatoid Arthritis

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I was just recently diagnosed with Rhuematoid Arthritis a year ago.  I have two dogs and got two lyme disease tests with the result negative.  I've done research online and symptom checker through WebMD and National Arthritis Association which gave me a final conclusion that I have been diagnosed with this chronic illness.  

I turned 40, my major joints inflamed, my finger and feet appeared sign of deformity and so on.  At first I thought I have fibromyalgia then I asked my family about hereditary diseases and only women had oesteroarthritis and diabetes on both side of my grand-mother.  I then learned that it happens to anyone as young as 14 and 40 without that defective genes becaue of lifestyle and diet in our everyday living now.

I quit smoking way when I was very healthy in the mid 30s and always been a light-weight with normal diet for the rest of my life 109-116lb.  I walk everyday morning and afternoon with my dogs.  

I went in to see the Rheumatologist after I went to see Orthropedic doctor thought I have this capel tunnel syndrome like symtoms that returned after went in got surgery done two years ago.  It did not go away my hand especially the right hurts when keyboarding everyday from morning to afternoon.  It's weird that my primary care doctor I went for physical check-up can't tell when I told him about the symptom that persisted after lyme tests.  The orthropedic doctor mentioned about seeing Rheumatologist.  I didn't really pay attention for a few month and deal with the pain by using hot cold and OTC pain relived.  

One morning I can't barely roll out of my bed and my feet swollen so badly that I fell back on my bed.  My brain and my heart both working fine and I check my pulse thinking to myself "I have no fever!" what happened to me.  I managed to get to work with few fingers holding on to the wheel.  I called my insurance company, primary care doctor for referral to the Rheumatogist that accepting my plan and asking to see the doctor immediately.  

I showed up limping and crippling while my Rheumatologist tried to pull up my medical history (thank god everything is on portal now makes it easier for him to learn new patient's history in a quick snap).  I told him I definitely have rheumatoid arthritis and pointed-out my reasons I am so certain 100%.  He sent me to the lab and prescribed me Prednisone which I was hestitant to take any forms of powerful medications possbily can as I heard so much side-effect than good.  He scheduled me to come back in a week.

I can't take the pain and need to be able to function so I took the steriod and boom the next day I was up and running like I was 15 again.  I have tremendous energy the whole week and half when taper off on the dosage.  I returned to my rheumatologist and he said that "I nailed it right to my head and the blood tests did show I have Rheumatoid Factor over 79ul than standard 29ul.  He prescribed methetrexate for a month which did not work as well as Prednisone.  I was put off the med and another three months my pain came back every time I'm not on Prednisone.  I dig deeper in research online and asked other which diet and physical therapy could help.  I got rid of all my sauces high in sodium and eliminated sugar entirely.  I ended up losing muscles instead and pain still invasive.

My blood work after 6 months long came back this morning after on totally diet and low-impact exercises for over a month and a half and almost fell off my chair.  My Rheumatoid Factor went from 79ul to 225ul.

I realized that might be also from the booster shots I got around the time I changed my diet and exercise plan.  

At this point, I'm waiting to find out with my doctor on my next appointment how to manage this pain and reduce the progression of my disease.  It seemed medication only stops the pain, but does not treat the illness.  I supposed to be on biologic drug as planned since my doctor works on methetrexate and prove the insurance company that nothing work so the cost can be a little less of a burden ($12,000 a year and they allow you to do an installment, but still that bazaar to inject powerful agent into your body not knowing it's going to work or not)  

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  • Posted

    Biologics work because they introduce something that binds what is attacking your joints.  Be thankful you can get on them, many are denied.  You just usually have to get pre-approval from your insurance who typically will  drag their feet.  So I advise you to get all the pertinent numbers for precert and member services and push it through by calling them daily..
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    • Posted

      I was asking my doctor for one of the biologics, Enbrel.  Then one of my closest friend told me to be really careful with the side-effect because his friend was on it for about a year and he lost his taste bud and never recovered since.  

      I was wondering would Humira better off.  My doctor said I have this window of opportunity to get better than prolong the deteriation joints lead to loosing sinovial fluid completely.  I followed the Grace documentary that the women lost her ability to walk because the medication back 15 years ago are not as advance and it came too late by the time her disease went into remission.  She has to be in the wheelchair the rest of her life.  Very unfortunate really.

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  • Posted

    Hi there,

    Im sorry to hear that no medicine is helping. While reading other people's posts, they seem to say that the biological works a lot better than anything else.

    I'm 26 and I was recently diagnosed with RA back in April of this year.

    I was first prescribed prednisone because I was going on a trip and I needed something quick for the pain. It helped a lot and like you I fely really good but my doctor said he wouldn't want me on that forever and th game plan was to slowly get off. Then I was on methotrexate (for a week, got scared of my liver possibly shutting down) .. then asked him to do something else cause at th time I was would go drinking with my friends every weekend.

    He had put me on sulfasalazine and prednisone for a month but it wasn't working so I decided to suck it up and try methotrexate again since I don't go out as much as I used to. As of now I've been a little bit better. My feet are still sore, hands feel a little bit better but I've had tons of side effects every day so far.

    I hope you are able to find the right medicine soon.

    Take care (:

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    • Posted

      I stopped beers after found out on my second tests that it effects pain due to refined sugar of wheat in beer while on both meds.  I learned before that beer a week helps women away from arthritis, but I guess not when you diagnosed with it.  My live tested for three tims and came out very good.  

      I even think now that I ate more fruits than ever and natural sugar still gives me the inflamation bad.  

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    • Posted

      I'm getting a referral to see the nutritionist.  I took online course to learn about diet and indeed sugar in fruits although better than fruit juices still a sugar which not working with people that already had rheumatoid.  Vegetables seemed to be most health benefits and protein from meat.  I read also depends on our blood type.  I'm a type B and lately I pound on white meat from chicken and tomatoes and found that I loss more muscle mass than before.  I don't like to eat meat, but I will see if protein in beef or thiamine in pork will help more.  

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    • Posted

        I am glad you are seeing a nutritionist.  Please post the advice you receive.   My thought is that we need to get the disease under control with medication and  add diet, exercise, rest, relaxation to help to control the condition

         Studies have not shown that disease is greatly affected by diet from what I am reading.   The arthitis foundation has some useful information on their website.   Many folks however do believe their diet greatly contributes to their flares/ symptoms so for those that do see a difference using a food diary I think they should adhere to their own body's reaction to various foods

          My thoughts are eating a heart healthy diet is the ideal situation.    I am going to be tested for celiac disease this week since I read that RA and celiac often occur together.  For now I am trying to stay away from any processed food and try and eat natural whole foods.  It's hard when fatigue is such a huge problem and so you just want to grab a frozen meal and heat it up

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  • Posted

    Hi Ben Japan

    I too like you was diagnosed in my early 40's 14 years ago

    During that time have tried many different combinations of

    medications through it all I have been on Methotrexate

    constantly, I live in the UK so I receive NHS treatment.

    At the beginning I was diagnosed via a blood test which

    confirmed the painful joints I had was due to RA i was started on a low dose orally which was increased every 3 months when seeing the rheumatologist.

    Nothing seemed to be forcing this disease into remission ,

    To access new drugs I volunteered for drug trials but none of them helped.

    I have since tried biological but again no joy or little relief from

    the pain and I was still having active periods where it is near

    impossible to get out of bed some days.

    The past 2 years I have been having treatment with a different

    drug called Retuximab which is given intravenously in 2 doses 2 weeks apart. Which can give relief of up to 2 years.

    Mine lasted 11 months so I have just had 2 more infusions but as yet this flare up has not yet gone away.

    Through it all my RA has never been in remission for very long.

    You are right methotrexate is the cheaper option and when my

    dose became so high I could no longer tolerate it orally I started

    taking it in weekly injections, followed 3 days later with 30 mg of folic acid. But over the last 14 years the swelling and fluid I have had in the joints have damaged them, despite swimming 3 times a week but the RA causes the greatest pain.

    Methotrexate though is not a pain killer and can take a few

    months to see any benefit. But pain killers and NSAIDS's are a

    constant in my life now particularly in the mornings. At the best

    time during this desease I have gotten it down to 90 minutes of a morning for proper mobility.

    On bad days the pain never goes away, I have taken an

    anti inflamitory called Lodine along side codine/paracetamol

    On some occasions I have used oral morphine but this has little

    efferct as a pain killer.

    Another medication I have is Amytriptaline 75 mg which

    origanally was an anti depressant but was found not to be very

    effective as an anti depressant but was a good muscle relaxant

    And somewhat pain relief.

    So my GP introduced this into my regieme this helped the cramping in the muscles because of the extra work they do. And at

    times I find I have restless limb syndrome for which I take

    Quinine.

    Some of the biological sciences I have taken over the years have suppressed my immune system too much in fact dangerously so I was having kidney infections. Quincy, for which I was

    hospitalised it became a kill or cure choice

    But after 14 years you do become a guinea pig as specialist still know very little about the disease.

    And you could very well have had grandparents that went

    undignosed

    This disease won't go away especially as we get older all we can hope for are long periods of remission.

    On a final not I have never taken steroids orally I usually have

    Depomedrone in junctions in my bottom for a blanket effect on all my joints

    Or there is another one for the individual joints in wrists shoulder ankles and knees when these are administered they also include an anesthetic which gives almost immediately relief and can last 16 weeks or longer.

    Hope all this helps I feel privileged that I have the HAS in this

    country

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    • Posted

      You must have a much more aggressive form of RA because I had never heard of someone that did not respond to biologics, except for remicade which is the one to go after TNF, which enbrel and HUMERA do also.  Enbrel and humera can also be given as infusions. I know infusions are a much more expensive way to have them administered, is that why you can't these others given this way continuously every 2 months or whatever the interval is?  When I switched from one to the other I had to stop the first one for a couple weeks before starting the second so I wanted it infused to get it into my system sooner to avoid a flare.   Now I'm on Orencia, which is so expensive that when I reach a certain age and have to go on our version of gov't health coverage, they won't cover it.  I will go back to using the Humera then.  The only problem I had with TNF blockers is getting tumors.  Nothing that needed to be removed but there are several small ones in my lungs.  I found out the Depomedrone is a steroid and before you mentioned it, I didn't know about this shot.  I'd be interested in knowing what your C-reactive protein level is and your sed rate.  Do you change your diet or have you found out different things to avoid in order to feel better?  I just know sugar is like gasoline to inflammation.  As far as biologics taking down your immune to the point of infections, this has happened to me.  I know how to avoid this problem now, 

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    • Posted

      Hi Lynn

      It has never truly been in remission for longer than 9 months in

      one go

      Orencia never helped at all Humira helped alongside the MTX

      But the side effects on my health after 12 months was very

      detrimental.

      After numerous UTI it was decided to take me off all Meds

      for 3 months

      ( the longest and worst 3 months of my life) MTX was introduced again but took another month before started feeling the benefits

      Thank goodness for steroids.

      The down side of steroids of course is the aperture increase and the last thing I need is to carry excess weight,

      I try to avoid highly processed food/ sugars

      I swim x2 weekly

      Aqua zumba 1 weekly and tai Chi 1 weekly

      Trying to strengthen the muscles so to suppoting my joints better

      Of course the routine suffers when during a flare up

      Sept 2015 I had 2 infusions of retuximab 2 weeks between doses which lasted 11 months and have just completed 2 more

      infusions however the flare up continued to worsen this past

      month and I was on NSAIDS'S paracetamol ,tramodol and Oral morphine. Although nothing this time seemed to work.

      Last week my GP gave me a Depomedrone injection since then I have gone from needing help to get out of bed to managing it myself now my smaller joints (fingers,shoulders, ankles ) are 90%

      better my hands and knees are slowly improving each day

      enough for me to consider going back to swimming.

      The problem I find when trying to keep fit is when you're laid up for any longer than 3 weeks it's like going back to square 1 to build up your fitness again. Very frustrating

      But the short answer to your question about diet lynn. Nothing

      too specific just well balanced and moderation in all thing but

      not processed. I have started taking forceval multi vitamin for

      immunity boost, and each year I have flu injections I have always found that apart from RA i am quite a fit person.

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    • Posted

      I don't do tthe flu shots because I think in auto-immune illness it may make things worse.  I do know the shingles vaccine is off limits - something about it including a live virus or something, and anyway, I've had shingles as well although I guess you can get it more than once.  When I do have times of feeling ill or less well, it is usually because I'm coming down with something like a flu or cold.  But if I go vegetarian, then I am sure to feel best because there is very little to add to the pain, although beans seem to do that, to some extent because of their protein content.  Now I remeber the specifics about remicade - it takes out the memory cells, the B-cells.  No wonder you do well with it.  It takes time but your body obviously builds them back up and as I have found with these biologicals, you also start making anti-bodies against the medicine too.  Must be why you haven't seen the same result with it this last go around.  Maybe you needed to repeat it more often, as in every 6 months.  One of my RA docs listed this med as the protocol if one came down with Lymphoma, a side effect of the other tnf meds.  The other thing I have found helpful is heat, whether its a therapy pool or a hottub.

      Sure hope you feel better soon.

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    • Posted

      Hi Lynn

      I can already feel an improvement , although I know these episodes do pass the time seems endless. Night time is the worst being unable to grip covers and turn over in bed is a daunting task

      Something people don't even think about.

      I like these forums, it's good to talk our local hospital has started

      Our local hospital has started a RA talk group. But they only meet up every 3 months.

      It amazes me how so many people have the same disease but

      expierence it in many different ways but the journey is always

      Riddled in pain.

      I find I can become weepy ant times and I don't know why.

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