1. Community
  2. Bones, joints and muscles
  3. Arthritis

Seronegative inflammatory arthritis and methotrexate?

Posted , 7 users are following.

igloo
igloo

Hi,

I've been suffering with intermittent pain and swelling in the joints of my fingers over the last 5 years. Nothing groundbreaking but odd and I had a fair few visits to the GP because my fingers would stiffen up and be quite sore. This has been say 1-2 bouts (lasting a couple of weeks) in the winter. So nothing major. Last February I had a much worse bout and I would wake in the night from pain in my hand. GP referred me to a rheumatologist who I first met with in August. Well I never have symptoms in the summer so I was totally fine at that appointment and he scheduled the next for December. Come december two of my finger joints had started to swell up and I had the worst bout yet. I was put on Naproxen which didn't remotely stop the swelling in the fingers. They were painful and difficult to bend. This lasted about a month and calmed down just before Christmas. Its now fine but my rheumatologist is talking about putting me on Methotrexate.

Well everything I read about methotrexate sounds terrifying and it seems like overkill when I'm only experiencing these bouts in a few fingers (and maybe the odd toe) like twice a year. Everyone I read about who takes it has much worse symptoms.

I'm 22 and all x-rays, ultrasounds and bloods come up negative everytime. I have raynauds and get chillblains when its cold too. 

Just wondering if anyone else has experienced similar difficulties in diagnosis and/or been put on methotrexate for such minor symptoms?

2 likes, 9 replies

9 Replies

  • Jan999
    Jan999 igloo

    Posted

    Hello igloo. I'm much older than you but have had a positive Rheumatoid factor and serum protein. Just because your blood tests were negative it doesn't mean you don't have RA. Mine was only slightly raised but I have a lot of pain in my shoulders, ankles and elbows. I see a rheumatologist next month for my first appointment and like you I'm concerned they'll want to put me on Methotrexate. It will be interesting to see if other people can tell us their experiences. I also have Raynauds and since my GP prescribed Nifedipine in the summer this will be the first winter in almost 50 years I don't hVe chilblains. I had one in August but it cleared up after 3 days of Nifedipine.
  • tina-uk_cwall
    tina-uk_cwall igloo

    Posted

    Hi ladies, I don't know why all of a sudden I am being sent the arthritis thread when I'm registered on the PMR/GCA thread. However, I wanted to answer your query simply because there are some rheumatologists out there who are using methotrexate for our condition (PMR/GCA) which isn't in accordance with clinical guidelines and it seems to be coming more and more used.

    pmr/GCA is controlled using prednisone, yes not a nice drug but far, far nicer with less  side effects than mtx. Many of us suffering from PMR/GCA are adopting the line that unless the consultant has a bloody good reason for changing our drugs, eg, prednisone intolerance, drug simply not working, we are not going to be put on mtx come hell or high water. rheumatoid arthritis is obviously different and mtx is often used for that condition. But I agree if I only had a pain that occurred a couple of times a year mtx does appear to be over kill to say the least. And I would not agree to such medication, but that is me. You've obviously looked up this drug and you don't like what you read, so tell them! Also the potential side effects are permanent side effects that will effect major organs in the body, no thank you, for a pain a couple of times a year.

    you must also be very firm but polite to your consultants otherwise they walk all over us prescribing medication that only we end up suffering the side effects of.

    i agree with you, ask if he'll consider a drug that does not have such toxic side effects first, then work up. Good luck christina 

    • eileen64__UK
      eileen64__UK tina-uk_cwall

      Posted

      Hi Christina

      You are being sent wrong posts.

      Me.......I'm not getting any notifications at all now.....well not for the past couple of weeks....any idea of who to get in touch with?

      Sorry this is off topic

      Love

      Eileen  UK

    • tina-uk_cwall
      tina-uk_cwall eileen64__UK

      Posted

      Hi Eileen, I think I have reported it to the moderator? But I could be wrong! I clicked on the report flag at the bottom of your post and under other informed them that I am now getting threads for arthritis and not you. Let's hope it does the trick! Christina, but any additional problems just do what I did.
    • Emis_Moderator
      Emis_Moderator tina-uk_cwall

      Posted

      Hi Christina,

      Sorry for the delay in replying and yes, using the Report flag is the best way to contact us. You are receiving notifications for the arthritis group because you replied to one of the discussions in the group or a discussion may have been moved to the group from the PMR group. If you don't want to receive these you can leave the group by clicking the button at the top of the group page here

      https://patient.info/forums/discuss/browse/arthritis-241

      The emails are not "mixed up" - I have replied to Eileen via email explaining why she was not getting the notifications which should now be sorted.

      Regards,

      Alan 

  • igloo
    igloo

    Posted

    Hi both - thanks for the speedy replies!

    I think his logic for methotrexate was my age, the fact that it seems to be getting worse with each bout and that naproxen didn't really help. Nip it in the bud or something I guess? 

    I feel like a total hypochondriac now as its really not that bad (although its easy to say that when I'm not having a flare up). I wanted to take it to the rheumatologist in the first place because I was worried about its potential to worsen especially because it mostly affects my fingers. But now I feel like I'm running backwards going "no no its fine please I'll manage with NSAIDS!"

    I don't fit the profile for RA apparently. Which is obviously good. But it is frustrating not having a proper diagnosis sad

    I'm seeing a rheumatology specialist nurse today to discuss the methotrexate although I think I'll be saying no and asking about other options. 

    • tina-uk_cwall
      tina-uk_cwall igloo

      Posted

      Hi igloo, that's another reason for not accepting the drug- a clear diagnosis. Heavens, putting you on such a drug and he's not even made a  definite diagnosis!! When he has made a definite diagnosis then you can look up the condition online and decide for yourself if mtx is the recommeded course of treatment or if there are other options, eg, a one off steriod injection as and when you have a  flare up. Also, you don't even know if this is a condition that gets worse or spreads to other joints, etc. Either way information is power so don't be smoothe talked by drs. I say just because they're drs doesn't always mean that they're good drs!! Christina 
  • h33919
    h33919 igloo

    Posted

    Hi Igloo,

    i am new to this forum. I am 28 and was diagnosed with sero negative inflammatory arthritus 5 weeks ago. I had had painful swollen hands since September. Before my diagnosis I was told about methotrexate and after reading the information it really concerned me. At my appointment before Xmas I was given a steroid injection after a previous course of steroids to get me though the flare up. In January my hands flared up again and my newly extended wedding rings became tight. I agreed to the methotrexate and for me it was a good decision. The side effects have now all but disappeared and I'm getting used to my blood tests. My condition is also stabilising and my hands finally look better.I have a fantastic nurse and consultant who explained everything to me - including that I won't be on it forever as the condition can sometimes disappear after being on it. Fingers crossed! 

  • maree09235
    maree09235 igloo

    Posted

    Hi Igloo,

    I am 49 and have been recently diagnosed with Sero Negative Arthritis or Psoratic Arthritis ( I dont think they really know). I just have inflammation mainly in my knee. I had surgery 6 months ago on my knee and it never got any better and has been painful and  bery swollen since. I am now seeing a RH and he put me on Salazopyrin but sadly I am having a skin reaction to it although the swelling is going down. They now want to put me on Methotrexate and to be honest I am petrified. My GP, my RH and my Knee surgeon all think this is the way to go but my gut tells my not. I'm with you, I just dont want to take it but they are cant beleive I wont try it. Thye keep telling me its a wonder drug and why would I opt for a knee replacement over a drug that can correct the problem. I am so confused and stressed over it and I certainly DO NOT want to lose my hair! Surely there must be a way to bypass this scary drug!

Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.