Newby - ?RA

munglebungle
munglebungle Member Posts: 30
edited 12. Apr 2009, 11:50 in Living with Arthritis archive
Hi

I was diagnosed with seo-postitive RA about a year ago (RF 97, CCP 330) and have been on Methotrexate for about 10 months, this initially help but over to last 6 months things have got worse again. I saw my Rheumatolagist yesterday who has now started me on Sulphafalazine as well. I also had a steroid injection which hasnt helped much.

I am still not convinced that i do have RA as not only do i get a lot of joint pain i also get a lot of pain and weaknes in my muscles. I dont get any swelling.

Has anyone else had a similar experience or should i give it more time?

I would be interested to learn of any alternatives to RA.

Thanks

Munglebungle

Comments

  • mistywillow
    mistywillow Member Posts: 711
    edited 30. Nov -1, 00:00
    Hi

    I was diagnosed with seo-postitive RA about a year ago (RF 97, CCP 330) and have been on Methotrexate for about 10 months, this initially help but over to last 6 months things have got worse again. I saw my Rheumatolagist yesterday who has now started me on Sulphafalazine as well. I also had a steroid injection which hasnt helped much.

    I am still not convinced that i do have RA as not only do i get a lot of joint pain i also get a lot of pain and weaknes in my muscles. I dont get any swelling.

    Has anyone else had a similar experience or should i give it more time?

    I would be interested to learn of any alternatives to RA.

    Thanks

    Munglebungle

    Hi Mungle
    Welcome to the site, there are loads of really nice people on it who have helped me loads. Sorry you are suffering so much.
    When i first had RA, mine was also a bit non specific, quite a low RF and non of the inflammatory markers were particularly high, but i was in agony. I was pretty sure it was RA as i used to be a physio
    and the affected joints and symptoms were typical of RA and my rheumatologist was also sure it was. However i did'nt really have much in the way of red swollen joints either apart from my hands and 1 knee. It was a bit hit and miss at first with the meds, still is but hopefully they will get you sorted soon.
    Take care of yourself, others will be along soon to give you their
    ideas
    Gillx
  • page35
    page35 Member Posts: 1,081
    edited 30. Nov -1, 00:00
    Hi
    i have just been diagnosed with RA so dont know much about it yet but have painful joins feel achy tired and weak. the only swelling i get is my fingers.
    i also had injection in bottom took about a week to work, has helped take the edge off it all.
    best wishies
    page
  • averyniceman
    averyniceman Member Posts: 75
    edited 30. Nov -1, 00:00
    Hi

    I was diagnosed with seo-postitive RA about a year ago (RF 97, CCP 330) and have been on Methotrexate for about 10 months, this initially help but over to last 6 months things have got worse again. I saw my Rheumatolagist yesterday who has now started me on Sulphafalazine as well. I also had a steroid injection which hasnt helped much.

    I am still not convinced that i do have RA as not only do i get a lot of joint pain i also get a lot of pain and weaknes in my muscles. I dont get any swelling.

    Has anyone else had a similar experience or should i give it more time?

    I would be interested to learn of any alternatives to RA.

    Thanks

    Munglebungle

    Tell me, do you know if you have the anti-CCP antibody?

    If you do you surely have RA, I'm afraid, even if there's no swelling (yet.)

    And if you do they should be treating your early symptoms -- agressively with Methotrexate.
  • munglebungle
    munglebungle Member Posts: 30
    edited 30. Nov -1, 00:00
    Hi

    I was diagnosed with seo-postitive RA about a year ago (RF 97, CCP 330) and have been on Methotrexate for about 10 months, this initially help but over to last 6 months things have got worse again. I saw my Rheumatolagist yesterday who has now started me on Sulphafalazine as well. I also had a steroid injection which hasnt helped much.

    I am still not convinced that i do have RA as not only do i get a lot of joint pain i also get a lot of pain and weaknes in my muscles. I dont get any swelling.

    Has anyone else had a similar experience or should i give it more time?

    I would be interested to learn of any alternatives to RA.

    Thanks

    Munglebungle

    Tell me, do you know if you have the anti-CCP antibody?

    If you do you surely have RA, I'm afraid, even if there's no swelling (yet.)

    And if you do they should be treating your early symptoms -- agressively with Methotrexate.

    Hi

    Thank you for your reply.

    Yes, i am strongly positive for the anti-ccp. I have been on Methotreaxte for a while with little effect and just about to start Sulphasalazine.

    Many thanks for your interest and advice.

    Tracy
  • averyniceman
    averyniceman Member Posts: 75
    edited 30. Nov -1, 00:00
    Hi

    I was diagnosed with seo-postitive RA about a year ago (RF 97, CCP 330) and have been on Methotrexate for about 10 months, this initially help but over to last 6 months things have got worse again. I saw my Rheumatolagist yesterday who has now started me on Sulphafalazine as well. I also had a steroid injection which hasnt helped much.

    I am still not convinced that i do have RA as not only do i get a lot of joint pain i also get a lot of pain and weaknes in my muscles. I dont get any swelling.

    Has anyone else had a similar experience or should i give it more time?

    I would be interested to learn of any alternatives to RA.

    Thanks

    Munglebungle

    Tell me, do you know if you have the anti-CCP antibody?

    If you do you surely have RA, I'm afraid, even if there's no swelling (yet.)

    And if you do they should be treating your early symptoms -- agressively with Methotrexate.

    Hi

    Thank you for your reply.

    Yes, i am strongly positive for the anti-ccp. I have been on Methotreaxte for a while with little effect and just about to start Sulphasalazine.

    Many thanks for your interest and advice.

    Tracy

    What surprised me is that the medics let your condition deteriorate without trying Sulphasalazine or even Anti-TNF earlier. Have a look at this:

    http://www.bio-medicine.org/medicine-news-1/50-percent-of-recent-onset-RA-patients-become-free-of-signs-and-symptoms-within-36-weeks-21610-1/

    And thanks for your post. I may be in the same postion as you -- I am waiting for the results of the CCP antibody test. You are the first person I have come across who is diagnosed RA without swelling. (I have no swelling either)

    Best of luck!
  • lindalegs
    lindalegs Member Posts: 5,396
    edited 30. Nov -1, 00:00
    Hi Munglebungle and welcome to the forum,

    I've had RA for many years and you can have it with 'just' pain, without swellings and inflammation, in my experience.

    Sometimes a combination of Mtx and another drug can help when Mtx alone isn't enough.

    Hope it works for you.

    Luv Legs :D

    PS Regarding your posting name - you didn't used to be a fan of Rainbow on TV did you :?: :D
    Love, Legs x
    'Make a life out of what you have, not what you're missing'
  • suziev
    suziev Member Posts: 252
    edited 30. Nov -1, 00:00
    hi

    i have inflammatory arthritis and i have to say that i have very little swelling it's always been that way. :shock:
    suzie x
  • averyniceman
    averyniceman Member Posts: 75
    edited 11. Apr 2009, 13:12
    suziev wrote:
    hi

    i have inflammatory arthritis and i have to say that i have very little swelling it's always been that way. :shock:
    suzie x

    If you don't have any swelling -- does that mean that it's not eroding your bones?

    (Maybe I should save that one for the medics)

    Also suziev -- how did they diagnose you? My docs seem to look for swelling and tenderness and if there's none there say "I can't make a dgiagnosis"!
  • munglebungle
    munglebungle Member Posts: 30
    edited 30. Nov -1, 00:00
    Hi Legs

    Thanks for your input - it is quite interesting to learn how many people dont have swelling. Hopefull things will settle down soon.

    Loved Rainbow as a child!!

    Tracy
  • lindalegs
    lindalegs Member Posts: 5,396
    edited 30. Nov -1, 00:00
    Hi Legs

    Thanks for your input - it is quite interesting to learn how many people dont have swelling. Hopefull things will settle down soon.

    Loved Rainbow as a child!!

    Tracy

    I knew it! It was my eldest sons favourite, wonder where Bungle, Zippy and George are now (because they ARE real) although I heard Geoffrey stacks supermarket shelves - bet you had tapes with Rod, Jane and Freddy singing on them :shock: :lol::lol:

    Take care Tracy.

    Luv Legs :wink:
    Love, Legs x
    'Make a life out of what you have, not what you're missing'
  • milmandy
    milmandy Member Posts: 20
    edited 30. Nov -1, 00:00
    Hi Legs

    Thanks for your input - it is quite interesting to learn how many people dont have swelling. Hopefull things will settle down soon.

    Loved Rainbow as a child!!

    TraRainbow brings back happy memories.. I don't have swelling either ..so join the gang!cy
  • colinone
    colinone Member Posts: 1,039
    edited 30. Nov -1, 00:00
    Hi
    Yes RA can give you the problems you discribe and can effect the muscles in your body. Muscle pain is nessersaly restricted to the area of the arthrits but can be in your chest, tummy and wherever its wants to pop up.
    Colin
  • colinone
    colinone Member Posts: 1,039
    edited 30. Nov -1, 00:00
    Hello munglebungle
    Love to know how you picked that name lol, Anyway i think you have had some good feedback and nothing really i can add apart from see if you can google anti TNF and have a read up on it. I also had xrays and blood test for TB and took about 6 weeks from referal to NICE to starting the treatment. I think if your going to see the rheumy nurse at the anti TNF clinic you may well have already had the go ahead from NICE. Just thought i would welcome you to the site, nice to see you take care
    Colin
    PS i have PA and RA
  • munglebungle
    munglebungle Member Posts: 30
    edited 30. Nov -1, 00:00
    colinone wrote:
    Hello munglebungle
    Love to know how you picked that name lol, Anyway i think you have had some good feedback and nothing really i can add apart from see if you can google anti TNF and have a read up on it. I also had xrays and blood test for TB and took about 6 weeks from referal to NICE to starting the treatment. I think if your going to see the rheumy nurse at the anti TNF clinic you may well have already had the go ahead from NICE. Just thought i would welcome you to the site, nice to see you take care
    Colin
    PS i have PA and RA

    Thanks Colin

    Long story with the name - has something to do with my cat George.

    I havent been assigned a nurse yet, i am still seeing the consultant every 3 months - still on 2 weekly blood tests until things settle down.
    Glad i am not alone with the 'no swelling and muscle aches'.

    Tracy