newly diagnosed with RA and looking for advice

JHud
JHud Member Posts: 4
edited 8. Apr 2025, 06:32 in Community Feedback and ideas

Hi all, my husband was diagnosed in December with RA. He was given methotrexate (6 tablets per week and 1 folic 2 days after) but after the third dose he felt awful, said he just didn't feel right and was getting real bad pains in his back both side under the rib cage which we put down to kidney pain. Spoke to the RA nurse and was told to stop the treatment for a few weeks and try again. He did this but after just 2 doses the kidney pain came back. They have told him to stop the treatment and discuss with the RA dr on his next app which is 1 April, I am wondering if anyone else has experienced this and has any advice on what to try treatment wise. The RA nurse has told him to use Ibuprofen and paracetamol until his app. He has been given numerous courses of prednisolone from our GP just to get over the pain and lack of mobility, it seems to be travelling around his body started in his hands then each day something else was added - wrists, shoulders, neck is this normal? This last week he has had pain and swelling in one knee then the following day in his hip which was really bad, he could barley walk. Sorry for the long jumbled message! I am just hoping to get some advice on what he should do as it so awful seeing him in so much pain. Thanks in advance :)

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  • PJoanne
    PJoanne Moderator Posts: 260

    Hello @JHud and welcome to the forum, it is great to have you here with us. I hope that you will find support and advice from here.

    In case you haven't found this yet here is a link to some RA information:

    https://versusarthritis.org/about-arthritis/conditions/rheumatoid-arthritis/

    https://versusarthritis.org/about-arthritis/treatments/drugs/methotrexate/

    https://versusarthritis.org/about-arthritis/managing-symptoms/managing-your-pain/

    Best Joanne

    Need more help - call our Helpline on 0800 5200 520 Monday to Friday 9am to 6pm

  • JHud
    JHud Member Posts: 4
    edited 20. Mar 2025, 12:15

    Thanks for the links, we have read everything we can get our hands on, but thought maybe some real life advice and experience might be good also 😁

  • Eeyore
    Eeyore Member Posts: 48

    Hello @JHud

    I feel for your husband, the pain is just awful as those of us here know from personal experience! Obviously the methotrexate doesn't agree with your husband and at his appointment on 1st April there are sure to be discussions about trying a different DMARD. Methotrexate is not the only one. In the meantime perhaps his GP could prescribe more prednisolone or at least a stronger painkiller? In my experience paracetamol and ibuprofen don't touch the pain of R.A. so I would suggest talking to your GP, or talking to the R.A. nurse again and stressing that the pain is unbearable.

  • Arthuritis
    Arthuritis Member Posts: 541

    @JHud Don’t lose hope.

    Can you check his blood tests for the results of the following:

    Eosinophils (give latest 10 results), CRP, ESR, ACCP & RF?

    What does he eat? I would suggest he seriously consider a water fast followed by an elimination diet. These are from my life experiences as a drug, pain free and symptom free escapee from RA for 2 years confirmed by my hosp, who had no interest in replicating the escape for other patients. (Apparently there’s no funding for that).

    https://podcasts.apple.com/gb/podcast/zoe-science-nutrition/id1611216298?i=1000696532853

    leaky gut UCL research

    Have a listen & read of both of these together, and come back. I had to figure out my own “elimination diet” which can have surprising things that have to be excluded. eg no poultry or farmed salmon, or any meat that’s been fed soy.

    A lot of fruits were barred as well, including morello cherries and pears. That let me free as a bird for 2 years. (Until I accidentally ingested unprocessed soy and was dumped back into RA, having to take MTX 25mg until I can escape again -I hope).

    https://www.ucl.ac.uk/news/2021/sep/targeting-gut-relieve-rheumatoid-arthritis

  • JHud
    JHud Member Posts: 4

    @Arthuritis - thank you, I will check the blood results when he is home. That's really interesting what you say about diet, he has been on a sugar and carb free diet for around a month to try and bring down the inflammation. I myself have colitis which is an auto immune disease and i became vegetarian 4 years ago and after 2 weeks i was symptom free and have not had a single flare up in that time, so I am living proof that diet plays a part in recovery. We will look at the links - thank you!

  • JHud
    JHud Member Posts: 4

    @Eeyore its awful isn't it! He did stress to the nurse that he cannot sleep, his mobility is limited and he is in so much pain but she just said take ibuprofen and paracetamol and no to the steroids or co-codamol as he needs to be free of that so the RA dr can see him in a 'raw state' 🙁 the gp has given him a phone app for next Tuesday (even after he said he is needing help to get out of the chair and cannot currently work!) He has started back on the Methotrexate today with folic acid everyday as told previously by the RA nurse and is going to try and control the Kidney pain rather than the RA pain. Who knows what to do for the best it is a mine field and really hard to get your head around knowing what to do for the best! Really feel for all you guys suffering with this illness, until we started this journey I had no idea how debilitating Arthritis can be!

  • RW5057
    RW5057 Member Posts: 3

    I don’t know if this will help but it might be worth looking at. I am convinced that my RA is directly linked to dental bacteria.

    I was diagnosed with RA about 1998. The internet was new then but I did some searches and found one that seemed compelling. It was the story of Dr Weston Price. In the early 1900’s he took teeth that had undergone root canals and implanted them under the skin of rabbits. The rabbits developed RA like symptoms. He came up with a theory that you can get what he called a focal infection in the tooth that can affect other parts of the body. This was interesting to me because I had a root canal about 6 months to a year before I was diagnosed. I had no pain in my mouth but I asked my dentist about it. She had never heard about it but did an X-ray just to be sure. It turned out it was infected. I had the tooth removed and had a bridge for several years. I took Methotrexate starting then. After several years a second tooth went bad and had to be removed so I no longer had a bridge. In 2018 I decided to get a dental implant. Within 2 weeks of getting the post put in my hands flared up to be virtually unusable. I had the implant removed and within 2 weeks I was back to minimal symptoms. Since then I have been very careful about brushing, flossing, using a interstitial dental brush and finally using mouthwash every night. I still take the methotrexate and I have almost no symptoms now. 

    When I first mentioned this to my dentist the medical community did not buy into this theory but recent searches I have done show that there may be a connection. Based on my experience I have no doubts that there is.

  • iwannerbeme
    iwannerbeme Member Posts: 40

    That is so interesting! In the years before RA I had root canal, then it failed and I ended up having tooth removed . After the removal I got something called "dry socket" which was awful, very painful. At around the same time I was diagnosed with gum disease. It was a very scary and painful time, the lockdowns were happening at that time too. My gum disease is classed as very mild now but Im careful with flossing ect. Regular trips to hygenist. I did wonder if it was all connected. I know there is research to connect with plaque, gum disease and dementia.

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