Flare up after a pretty settled period

[sazkabaz]

Two years ago I had a massive flare and was in a lot of pain / extreme fatigue. I was on prednisolone which was like a magic cure initially and then caused a host of gastric problems. I also trialled methotrexate tablets and methotrexate injections and really struggled with the side effects. After about 4 months I just stopped everything and went on a very strict Keto diet which within 6 weeks had me feeling like a new person. However I’ve had a lot of gastric problems and haven’t been able to stick with a strictly low carb diet. However a lower carb diet and intermittent fasting has kept me in a pretty good place. Until now. The last two weeks have been awful - fatigue levels through the roof, swollen glands and stiffness. I got bloods back today but haven’t been able to speak to the doctor yet. Rheumatoid Factor was 34 and ESR was 36. Are these high?? What to try next?!!

[Neonkittie17]

Sadly-once-you-stop-the-RA-meds-for-a-while-the-horrible-symptoms-usually/return. I-hope-you-can-speak-to-your-rheumy-or-nurse-about-starting-another-med soon. Please-ask-the-rheumy/GP-re-your-blood-results-as they-need-to-take-everything-into-account-but-a-higher-than-usual-CRP-would-more-often-go-hand-in-hand-with-uncontrolled-RA. Good-luck.🙏🏻

[sazkabaz in reply to Neonkittie17]

thanks! I am so sad to discover that this is the case; really thought I had put it in remission…

[tanya1981 in reply to sazkabaz]

Hi Sazkabaz, it may be that you’re going through another flare driven by an infection or something else. Have you tried naproxen or diclopram to temporarily control the swelling and pain? The latter has been really helpful to me in the past. Also, might be worth trying a vegan diet with intermittent fasting (skipping breakfast or having only fruit) - I’ve heard this has a good effect on putting the disease In remission.

Of course, there are a number of other alternatives to methotrexate, Including biologics so don’t give up on the 1st option. You just need to find the one that works for you (we seems to tolerate and respond very differently to medication). Best of luck!

[Neonkittie17 in reply to sazkabaz]

The-RA-inevitably-returns-if-you-remain-unmedicated.😑😥Hope-soon-you’re-steady-again-on-a-new-med.x

[Libluce8]

husband was diagnosed with firstly paladromic rheumatism in 2000 then RA in 2009 - he was put on a cocktail of RA meds including methotrexate which caused so many side effects that his quality of life was so bad he lost his job and could hardly function - he tried various other RA Dmards and wasn’t considered for biologicals as RA not serious enough - a change of specialist in 2017 and also a serious bout of itchy skin (caused by the methotrexate) led to him being put on low dose steroids - he also was taking high dose turmeric - in 2019 the RA wasn’t active and still isn’t - change of specialist in 2022 and she took him off steroids saying his joint pain is osteoarthritis and RA not active but now wants him back on methotrexate which he’s refused - he’s now 70 and fit for his age - coming off steroids has been a long painful process but he’s getting there - even on RA demards he took Naproxen and gabapentin for the pain, which he continues and from his experience he won’t go back on any dmard which as he keeps getting told, may stop the RA damaging the joints when he’s older but he takes the view his quality of life is more important - this is his experience/view

[sazkabaz in reply to Libluce8]

Thanks for this. Yes- the dilemma between side effects and quality of life vs long term impact is what I’m struggling with. I can hardly face trying something else as I have a young family and life is very busy. On the other hand, I’d love to find something that controlled the RA and stopped flare ups! Must do more research as I wait to speak to the Rheumatologist.

[oldtimer2]

Unfortunately this often happens - that it's OK for a while and you think that you have cracked it, but then it returns. Prednisolone only dampens down the inflammation (very successfully) but does have awful side effects if used long-term.

I suggest that you have a look at the treatment pages on the NRAS website:

nras.org.uk/information-sup...

and do your own careful research looking at reputable websites like NRAS and Versus Arthritis. Be careful of many websites which are trying to sell you magic cures - there isn't one. This condition is your own body's immune system attacking your own body. Your immune cells are programmed to remember what to attack long-term.

I hated methotrexate too, but there are alternatives!

[sazkabaz in reply to oldtimer2]

Thanks for this - that’s a really useful link, will do my research as I wait for rheumatology to get me an appt. I’ve a young family and need to get this under control, just can’t face the process after such a horrible MTX experience!

[Lolabridge]

Was your CRP level tested with the other blood markers? Shame if not.

Do get in touch with your Rheumy team for advice as your ESR is raised. Although I think an infection can cause a rise in ESR too and having swollen glands might mean that's what is happening. Ask their advice as you're feeling pretty rubbish!

If you have a Patient Helpline to which you can send emails with photos attached, send photos of any swollen joints you may have along with details of how you are suffering with the flare.

Good luck.

[sazkabaz in reply to Lolabridge]

Thanks! Just called GP again but they have said all test results not back and they’ll speak to me on Fri so hopefully they have also done CRP. Unfortunately the rheumatology helpline is closed this week due to understaffing but will hopeful get them next week.

[Lolabridge in reply to sazkabaz]

Ah ok. Well take it easy for now and rest lots.

[sazkabaz in reply to Lolabridge]

Thanks. Trying to rest when I can but I’m a full time mum to twin 8 year old boys and a little girl who is 3 and it’s pretty relentless. Love them dearly but theres not much in the way of rest 🤣😭

[Lolabridge in reply to sazkabaz]

No chance of a rest for you then. Hope you can get an early night and they all sleep through 😴😴😴!

Good luck with that! 🤞

[thinkhappy]

Hi , I tried methotrexate for about a year plus and it worked well but I was constantly fatigued. I asked my rheumi if there was any thing else I could try and she prescribed Mycophenolate Mofetil. For me this has not only been successful but I now have much more energy. Not quite an answer to your question but just to say as others have said there are more medicines out there for you to try. I wish you the best in finding something that suits.

[sazkabaz in reply to thinkhappy]

thanks for this - it’s good to hear that there are treatments out there that actually help! Just need to get the confidence to try another one! Thank you

[SteveSi]

I've had RA (JRA) for over 65 years. Luckily mine seems to be milder than a lot of kids/people had back in the 60's. I have been taking only NSAIDs (aspirin/paracetamol) for most of my life (didnt get on with more modern drugs). I now have fused neck vertebrae and two full replacement hips. About 7 years ago I bought a bread machine and started eating lots of nice bread. My RA pain escalated so much I could not get out of bed or walk every day! I stopped eating bread and I improved. Now I eat no grains (wheat/oats/barley/rye), no beer, etc. and my joint pain has pretty much gone! I now take no NSAIDs at all. 10% of RA patients go on to develop celiacs disease and this year I got very ill and was diagnosed with celiacs disease (I was eating a very small amount of wheat every morning and thought it was OK!) so now I have to strictly avoid all grains.

The way I see it is that RA is an autoimmune disease. It MAY be triggered by something we ingest. Tell-tale signs are that your symptoms improve if you fast and if you get flare ups for no apparent reason. I would encourage everyone to try the Auto Immune Protocol diet. It's free! It is in two phases (1=exclude all potentially bad foods for 2-6 weeks and you should notice a marked improvement, 2=slowly re-introduce the other foods until you find one that causes a bad reaction). It is scientifically designed to test for a wide spectrum of different trigger foods. Look up AIP Diet (not the same as Paleo or Keto!) and you will find it.

The theory is that something is triggering or exacerbating your immune system which is why you get good days and bad days and why fasting often helps. It is not about ancient grains or xxx is good for you, it is about finding out what foods your body is sensitive to. It does mean you cannot eat processed foods or ready-meals for a few months though, because you must know what is in the food that you eat.