New Diagnosis of Seronegative Rheumatoid Arthritis.. I’m confused

[Jadaboo4]

Hello so I went to the doctors and now they are saying that the Avise test is showing I don’t have UCTD and I have seronegative Rheumatoid Arthritis and Fibromyalgia. She increased my methotrexate from three tablets to six and wants me to go to pain specialist to see if he can also add pain medicine to help the pain until the methotrexate start working or I might have to try Humria. Does it take long for methotrexate to work? Does going gluten free help? Any suggestions would help, thank you

[Stoli72]

Hello,

It can take some months for medication to work effectively (and for some it takes a bit to find the one that works) - it can be very hard to be patient but it is important. Hopefully the pain specialist can help you to find something that works for you to help get you through the waiting.

In terms of going gluten free - for some people changing their diet is helpful - but it is never going to get rid of the disease. I try and eat healthily - the Mediterranean diet - and I have cut back on alcohol and cakes and the like (although the next few days aren't going to adhere to that 🤣). It hasn't changed my pain levels (I have constant low level pain even if the swelling and inflammation is gone) but I do feel better generally for eating well and also trying to exercise more. And I know that being healthier is good all round for coping with RA, including my mental health.

Good luck.

[Jadaboo4 in reply to Stoli72]

Thank you for your response! Even though it is hard, I do understand I have to be patient and except that I have limitations. I’m just so used to doing a lot and this fatigue is a lot to deal with. I can’t eat garlic, beef, shrimp and sugar for sure it really makes me inflamed. Reading your post I’m happy to know that it will get better eventually it just takes time.

[Stoli72 in reply to Jadaboo4]

Accepting the limitations was/is, for me at least, one of the most difficult things. I have only been diagnosed for about three years - and the fatigue was so hard to deal with. People would say 'be kind to yourself', but all I did was feel angry. It took me a long time to realise that being angry wasn't helping - and I still have days when I have fatigue and I am angry all over again. It took me some time to find the medication that worked for me - and there are still good and bad days - but it should get better for you at some point - and, as I very (very) slowly learnt - it is ok to be kind to yourself and say 'I'm fatigued, I'm going to have a quiet day today'. Find something that you can do on those days that brings you pleasure - reading a light hearted book that doesn't take too much concentration, watching a guilty pleasure movie, just something that makes you feel like you are spoiling yourself rather than feeling angry and upset at what you cannot do.

[Jadaboo4 in reply to Stoli72]

Thank you for all of the insight I really appreciate it! It makes me feel like I’m not alone and someone understands finally . As far as exercising I’ve tried but it caused more pain so my doctor said she wants me to do physical therapy . I have learned to space out activities with rest breaks in between but driving is still the worse for me no matter what.

[virtualreality]

Hi Jadaboo4 , I'm glad your symptoms are being fully investigated and that the diagnostic picture is clarifying for you. As Stoli72 said, it can take a few months to see the full therapeutic benefits methotrexate is going to have, but depending on how long you were on the lower dose for, you may already be well into that process. I really hope the increased dose helps, and that the support with pain management also helps soon.

Generally people are prescribed folic acid alongside methotrexate because this helps with possible side effects, especially gastric ones. This may already have been discussed but if you're increasing your dose then you may need more folic acid too, to balance it. It's worth asking if not, as it can make a big difference. I've always found it helps to be really well-hydrated for my methotrexate doses - the day of and day after. Also, when I was taking the tablets it seemed to help to take after a carbohydrate-rich dinner. I don't know why, it's a tip I picked up and tried and it definitely helped!

I haven't made any changes to my diet overall, but was already gluten-free by the time I was diagnosed with RA and started methotrexate. I just try to eat a healthy, balanced diet with a few treats here and there and keep moving as much as I can. I really hope this revised diagnosis will unlock the right treatment for you, and gets your symptoms under control. Wishing you all the best.

[Jadaboo4 in reply to virtualreality]

Thank you for responding! Yes I take folic acid everyday except for the day I take the methotrexate. I started both in August but the Avise test showed that my body wasn’t able to absorb the methotrexate so my doctor increased it two weeks ago. The folic acid does help with symptoms but the day after I take methotrexate I’m always fatigued and in more pain. I hope it works as well and I’m Wishing you all the best too!

[virtualreality in reply to Jadaboo4]

Thank you so much! It sounds like you're on the max folic acid already then, which is good.

I had what seemed to be a similar problem with absorption, although no test was ever done to investigate - prednisolone tablets never had as much effect as the doctors expected either. I later switched to methotrexate injections - I can see  Boxerlady has mentioned those below - and definitely got better results. Might be worth considering if your dose increase doesn't do enough.

[Jadaboo4 in reply to virtualreality]

Yes I’m currently weaning off of prednisolone now. It didn’t help me either only gave me yeast infections every month. I’m still taking the plaquenil too

[Boxerlady]

Dealing with RA is definitely a marathon rather than a sprint but try to stay positive and hopefully you'll find "your" medication regime. I started on 15 mg Methotrexate and Hydroxychloroquin back in 2019, changed over to the injection form (which means that more gets into your system) and even went up to 25 mg but still had some issues, despite being much better than when first diagnosed. At that stage Sulphasalzine was added and the combination works well for me. I've dropped back to 15 mg Methotrexate and still doing well. Only side effects for me are feeling tired/off colour 24 hours after taking it.

[Jadaboo4 in reply to Boxerlady]

Thank you for sharing! This is good to know. I will definitely talk to my doctor about the shots if the increase doesn’t help. Best wishes to you!

[J1707-]

my diagnosis is the same as yours . Unfortunately all inflammatory arthritis meds take up to 13 weeks to work . Some times quicker sometimes longer . Patience is the name if the game either this disease. Although seronegative arthritis is not as quickly aggressive it is often harder to to find the right meds or combination

[Jadaboo4 in reply to J1707-]

Thank you! Yes I’m realizing that patience is something I definitely need. Hopefully with the diet changes and one of these medicines I will start feeling better soon

[Jadaboo4]

Thank you! I have cut out sugar, dairy, and beef. I have not gone gluten free yet but I don’t eat carbs either, and I’m still having pain