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very knew to this would like some adive.

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ben52877
ben52877

hello, im very recently diagnosed with RA, im a 26 year old male. 4 months ago i had a knee operation, when inside they saw how bad my immflamation was.they tested a piece and thats when they told me it was arthritis. i realised then it must of been there a long time years and years because i had the symptoms for that long.they have put me on 3000mg of sulfasazine a day which i have been on for 12 weeks with little affect. recently it has got alot worse very quickly my knee keeps giving out and i have had to get it drained a few times to ease it and this morning i also started taking prednisolone as they said hopefully it will ease the discomfort giving the other medication time to work. just wondering if these drugs have helped anyone and how long they take to work. i have been getting a lot of other areas of my body like fingers and elbows becoming sore and it happening very quickly which is worrying. is there any advice on diet thats  helped? i eat a clean diet apart from fish and few eggs i dont consue any animal products which i changed at start of year as i was gettting all kinds of stomach issues which they are relating to the RA. i was a big gym user before finding this out a lot of heavy weights but i always listen to my body so i find it strange why all these other areas are showing signs of being affected so quickly like just in last 2 months? sorry for long message i have a millions question the people i have seen at hospital dont have time to answer them any advice is greatly appreciated. thank you

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  • Guest
    Guest ben52877

    Posted

    Some people have it progress more quickly than others. Hopefully you can get it under control. I think 12 wks is long enough to tell if the meds are going to work so you may tell your doctor to try something different. Also on the prednisone, if you take it for over 30 days in a row your body will become dependant on it and you will have to take it or have withdrawals. See if your doctor will put you on pain meds. I hear that prednisone withdrawals are horrible! Google prednisone dependence. I don't know where you live but in the US you have to try DMARDS for so long and then they will put you on biologics which work better so the quicker you try out different DMARDS, the quicker you can get to the biologics. They will probably put you on Methotrexate next. It does wonders for some people and then people like me it was horrilbe! Everyone is different with different reactions. I am taking Enbrel now and swore I would never take MTX again but after researching it, I am going to take a low dose of it along with Enbrel to enhance the Enbrel. I should start this next week. Also some good advice is to be your own advocate. Research all you can and don't be afraid to tell your doctor what you want. Sounds like you are on a good path with your diet. Most of the doctors I have seen don't really have an opinion on diet with RA and sometimes I wonder if it helps but a good diet can't hurt anyone at anytime smile If you have questions this is the best place to be. There are a lot of people here with years of experience and knowledge that should jump in on this. Good luck

    • Guest
      Guest

      Posted

      Also when you have a question, write it down and take it with you to the doctor. Try to take control of the exam by whipping out your list of questions and telling the doctor you have questions that need answering. Then go through each one and write down what he says. If you are overwhelmed it is a good idea to take someone with you to repeat what the doctor said. 
    • ben52877
      ben52877 Guest

      Posted

      Thank you for your reply. Im from the uk. yeah i have researched prednisone im a on 28 day course which starts at 20mg a day then every 7 days you take 5mg a day away so you taper down . Im not a fan of taking any tablets let alone 12 a day which im on now! but its to that point i need some quicker relif.Im looking for a private expert as the NHS are so busy to fit everyone in i get why they cant spend a huge amount of time on every patient. Its things like flare ups i dont know what they feel like but im guessing it what ive been having the last month my knee has been on and off for years issues since i had a patela dislocation but the lasst few weeks im shocked how it feels like every joint it my body is reacting which i have never had before and its quiet worrying how bad it feels and you say to people and they shrug it off like its no big deal everyone has it which to be honest until you feel how bad it feels and start reading like you said i didnt take it that seroius when they told me . As for someone who worked out as much as me and lifts the weight i lift i thought i would have noticed joint issues through the years of training and yet apart from my knee ive never had a problem anywhere else until the last few months. thanks again
    • Gloria814
      Gloria814 ben52877

      Posted

      Ben,    I hope you can get an appt with an RA specialist soon--that medication should have been working to give some relief.   Try and read as much as you can--I have gotten a book on RA which has helped me in addition to this site which has been great.   

        You are young but try and get the doc to pay attention to your questions and in the telling of  the amt of pain you are having.   

         I don't know the in's and outs of medical care in the UK--I am from the US.    I am going to start a biologic but only cause my husband has good health ins.  They are very expensive.  We could not afford them when he retires so I will need to try another pill.   I take low dose methotrexate,  higher dose made me sick

        I don't really have stomach issues--I have Crohns' disease which is a gastrointestinal disease.  People with RA can have other autoimmune disease

           The docs here from what I gather don't pay much attention to your diet regarding RA but some people swear by certain foods making them much worse.  You could search RA diets but i think you are doing a good job with diet -   Also the Arthritis foundation has a great website 

         Best of luck

    • Gloria814
      Gloria814 Guest

      Posted

      Hi

        Just wanted to add that I am on a low dose of MTX --7.5 mg as 10mg made me quite sick.  Finally got approval for humira and I mentioned to my doc that I read low dose MTX helps the biologic drug to work longer 

        He agreed it oculd help  so I will stay with 3 MTx with the biologic. 

    • ben52877
      ben52877 Gloria814

      Posted

      hello thank you for your reply. yeah they havent been that helpful it like you got this so take this and that it. i have been doing my own reading but most books are always from the specialist side and obviously everyone will be different in the way the body reacts. My main concern is the last 2-3 weeks as i have never had anything like this where all my joint suddenly felt like they were tight and sore very strange. did or have your symptoms suddenly got worse in a very short space of time ? thanks for your time.

       

    • Gloria814
      Gloria814 ben52877

      Posted

      no, my pain has progressed slowly and I don't have any fluid or much swelling but i was just diagnosed this year.   I wonder if you are seeing an RA doc and have they not given you anything for pain--you need to have another medication added --I hope that the prednisone does provide some help.   But you need to tell them that what you are taking now is not working

  • lynn15111
    lynn15111 ben52877

    Posted

    I had to have my knee drained multiple times and I was already on medication, so when it does that, whatever you are takind is not working.  You need to have an RA doc give you something else or more meds, whatever the case may be.  Sulfasalazine is not enough but if you were on a biological you would still stay on it along with the biological.  MTX works for some people, did nothing but make me sick.  Stomach and intestinal problems go along with RA in some people.  Sure hope you are able to bet the help you need.
    • ben52877
      ben52877 lynn15111

      Posted

      thank you lynn. i have had my knee drained so many times and i always have fluid in the back of knee popping out nothing seems to keep it down. when it feels sore it always feel like it wants to give out and ive noticed it gets worse over night like this morning i could hardly bend my legs when i woke up as there felt like so much pressure behind and around the knee.
    • lynn15111
      lynn15111 ben52877

      Posted

      That's RA for ya, worse in the morning.  My RA doc told me that it's in the evening - the stiffness can be from normal use or overuse, but if it is prolongedly stiff in the morning, it is a medication lack, or inefficiency.  You just need some different meds on board.  Best to get on Biologicals.  They at least have the greatest likelihood of putting you in remission.

  • patyrod
    patyrod ben52877

    Posted

    Ben, my rheumatoid arthritis came on suddenly.  It was almost overnight.  I noticed that my hands were swollen.  I wrote to my doctors right away since I was on a couple of medications for another autoimmune condition.  They thought it might be one of the medications and took me off it.  But, after a few days, my hands continued to swell and became deformed.  Luckily, I took off all my rings in time because my knuckles became huge. My hands and wrists were horribly painful.  The rheumatologist  had me in for an appointment and tested my blood and told me it was RA.  It all happened in less than two weeks.  It is a systemic disease that can disable you suddenly, so it is very different from the wear-and-tear arthritis that develops over years.  Although I am taking methotrexate, I have not had much improvement.  Now, the little joints at the fingertips are getting very painful and are getting little bumps on them.  I am having problems with my neck, arms and one knee.  Also, my arms and hands get numb a lot.  The neurologist thinks it is carpal tunnel syndrome and has referred me to Physical Medicine.  All this has happened in the last seven months.  So, keep a good eye on yourself.  You may develop additional symptoms.  Good luck with that poor knee.
    • ben52877
      ben52877 patyrod

      Posted

      hello ,thanks for your response. thats how i feel at the moment, i know now it has been there for years and years but i have only had problems in my knee then suddenly last few weeks i have noticed my one of my thumb joints and middle finger tips is much bigger on my right hand than my left. if i put even a small amount of pressure on them its like a sharp pain through the bone my hands feel numb and both my elbows feel sore. its very strange.  i have emailed a few private specialists today as in the uk my next  nhs appointments are not till march 2017.  im on my second day of prednisolone so hopefully that will kick in quickly. (at least i was told it should)!!! what  other medications have you tried and has it helped? 
  • ihavenonickname
    ihavenonickname ben52877

    Posted

    Hi Ben,

    I have the time,

    I have the willingness, and

    I have 54 years of living despite having damnable juvenile (since age 11) rheumatoid arthritis,

    I will share what I have learned with you.

    Big gym user...betcha lived by that number one gym rule:

    No Pain, No Gain...betcha pushed your biceps to do just one more curl...betcha look mighty fine with chiseled musculature.. rheumatoid is different.

    Lesson One...No Rest, You Lose

    When your fingers feel like breakfast sausages, REST your fingers.

    When your knee feels like it could squirt fluid, REST your knee.

    When your elbow won't extend, REST your elbow.

    When your whole body is shouting, REST your whole body.

    When a rheumatoid body speaks, even in a small whisper, your body is telling you that the rheumatoid is active. When you work an inflammed rheumatoid joint, you both damage the joint and extend the damaging inflammation process.

    You can not work rheumatoid out...

    REST means treating an inflammed rheumatoid joint with care and deliberation. REST means gently doing your range of motion exercises. REST means that you do not subject inflammed fingers to help your best friend move. REST means using elevation, heat, cold, and compression to reduce the disease activity.

    REST does not mean giving up all of the activity that you enjoy forever.

    REST means you give up doing something today so that you can continue doing that same something for many more years.

    You masterfully denied and pushed rheumatoid away for years...your knee is testimony to your strength of mind over matter. Strength of mind is an excellent asset to use when it comes to living well despite having rheumatoid.

    Rheumatoid Arthritis is a systemic disease. We have 8 different body systems. While rheumatoid arthritis is capable of playing havoc in all 8 body systems, the good news is that capable and probable are two very different things.

    Just as sleep and rest are two very different things. You will develop an ability to know when you can push and an ability to know just how far you can push without causing an exacerbation or damage which we term flare.

    Rheumatoid is a dynamic disease that morphs....this is why a medication that helps today may not help tomorrow.

    By observing a person's reaction to a drug, we can learn a lot about the rheumatoid in that person's body...Both Enbrel and Humira are TNF, tumor necrosis factor. Individuals whose rheumatoid responds well to either Enbrel or Humira are said to have TNF driven rheumatoid. Rituximab is a monoclonal antibody against the protein CD20. For those who respond favorably to Rituximab, we say their rheumatoid is CD20 driven.

    Sometimes rheumatoid arthritis can be successfully treated with an NSAID...non steriodal anti inflammatory drug...such as Orudis, Feldene, Naprosin, Naproxin, Motrin, Indomethacin, Butazolidin to name just a few.

    Steriods...not to be confused with anabolic steroids...prednisone, budesonide, methylprednisolone are three of many. Many decades of study have taught us to use steroids judiciously because steroids cause unwanted side effects such as bone density loss. Today, steroids are prescribed using a burst approach...high dose fast start, immediate graduated decrease, off.

    DMARDs & Biologics... disease modifying anti rheumatic drug...

    This class of medications modify, literally change the way rheumatoid behaves... Methotrexate (now the gold standard), hydroxychloroquine, sulfasalazine, Orencia, Remicade are all typically oral.

    Rituximab is delivered by infusion.

    Enbrel in the mid nineties was the first DMARD. I still remember watching the television news that night with tears running down my face. Those of you who face rheumatoid today should never face the full fury of this disease. Nevertheless, matching a sufferer with the best medication to defeat their rheumatoid continues to take time. As the class of medication used increases, so too do the possible adverse side effects. Be patient and work with your rheumatologist, only a board certified rheumatologist, to fine tune a treatment effective against your rheumatoid.

    54 years of severe juvenile rheumatoid has left my body permanently damaged and deformed because medicine did not have the wealth of knowledge it has today.

    I am grateful for all of the analgesics, NSAIDs, and steroids that made it possible for DMARDs & biologics to modify even my severe juvenile rheumatoid. Today my JRA relatively quiet. And once my rheumatoid quieted down, I forgot about the really tough times it raged.

    kind regards

    judith

    an adult with juvenile rheumatoid arthritis

    • ben52877
      ben52877 ihavenonickname

      Posted

      hello judith thank you so much for that response. you are correct about the no pain not gain!!! even in the last month i have learnt how much more i need to rest i was only at worked two weeks ago and i could feel my body was not happy but it was the first time i have had this feeling so i kept saying ill phone my specailist and tell him but then i kept saying ill do it tomorrow, the next day i was just walking at work and my knee just popped out and sent me to the floor.

      The hard thing for me is like for many is admitting i need to rest like im only 26, i know i need now my body is the most important thing and not how it looks on the outside but whats going on in the inside.

      im glad i found this place though speaking to people like yourself who have had it a lot worse than me and understand it alote more.

      thank you ben

    • ihavenonickname
      ihavenonickname ben52877

      Posted

      Hi Ben

      As I read your post I caught sight of Granny's minocycline suggestion...I was on long term daily minocycline and for me I did not notice an improvement...but our bodies are the same but different...

      About that knee... Perhaps a neoprene knee compression sleeve...it is specifically made to cradle the patella, knee cap. One should be available from the pharmacy. You will need to measure the circumference of your knee in order to determine the correct size.

      It is best to elevate your knee above your heart while placing a frozen gel ice pack beneath the knee as well as on top of the knee for an hour while you read, telly, chat, knit or whatever.

      Then extend your leg straight up and hold it up for 30 seconds. Now slip the sleeve on. Be sure to properly allow the sleeve to cradle your patella, the knee cap. Flex your knee a couple of times to ensure that your patella is able to properly glide without impingment.

      In about another hour you should have much less discomfort and pain. You may sleep in the sleeve. You may walk in the sleeve. No squats, Ben...lol

      You will be pleasantly surprised at how much easier walking and range of motion exercises will become because the swelling will come way down.

      Kind regards

      Judith

    • lynn15111
      lynn15111 ihavenonickname

      Posted

      You covered it beautifully and completely; we must learn how to take care of ourselves and be advocates for ourselves when we see doctors and know meds are either needed or not working.  
    • ihavenonickname
      ihavenonickname lynn15111

      Posted

      Hi Lynn

      Having JRA is like forever being a student...I love that we can all share what we have learned and learn more from what someone else has learned...if I had had this forum 54 years ago I would not have been so cruel to myself. Mind over matter thoughts hurt my body when I was young.

      kind regards

      judith

    • Gloria814
      Gloria814 ihavenonickname

      Posted

      Judith

         Thank you so much for all your words of wisdom.   It is so comforting to know someone has gone thru all this before and is helping all of us sort of find our way.   My Aunt died of RA in '71 before any of these meds,  She took massive doses of aspirin and gold injections and the side effects from those drugs were severe.   My recall of her was that she frequently was crying in pain.  So progress has been made with all these new drugs and with the internet and so we can share our knowledge.  Yours is very encouraging!  you seem to have been thru it all and come out stronger

    • ihavenonickname
      ihavenonickname Gloria814

      Posted

      oh Gloria,

      I am so sad that you lost your aunt...I too, took gold and aspirin by the handfulls...

      Today I am on Rituximab and it has quieted things way down. So much so that my surgeons are replacing both shoulders, both elbows, both hands, and my right forearm...yes, this is difficult surgery but the outcome returns so much of what was lost. I am so blessed...when I was born this was not even thought of.

      hugs

      judith

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