Rheumatoid arthritis

[plymouthmaid]

Hi All,
I’ve just had a diagnosis of rheumatoid arthritis. I was just wondering if anybody had any experience, that they could share, or tips to help managing the condition. Thanks.

I've had it since I was 31. I'm 53 now. My hands and feet show visible deformities but i manage ok. Some days worse than others. I ditto using a cane, collapsible stool or cane chair. Rest when you can.

Hi I was diagnosed about 15 years ago and started methotrexate about 10 years ago. My hands are the worst still and I do have some aids for home such as gadgets to open bottles and cans and jars. I have very few flares and they are hugely minimised thanks to the mtx and I’ve not yet required any more than that.

The main thing that I would advise is not to ignore the fatigue in I tried to for many years and old crash hugely eventually. Now I take life more steadily altho lead a very busy life!

Beautiful! Lovely looking dog too.
Lymes can take months to develop. May well not be but just a possibility.

I was diagnosed last year after increasing joint flares. I had it with cutaneous vasculitis which two rheumatologists refused to consider was part of the problem but it definitely was as they happened at the same time, treatment resolves both at the same time and relapse in both happens at the same time.

I am lucky that the joint flares are palindromic. They come on four 24-48 hours then stop as if nothing had ever been wrong. On crutches on Monday, on a 4 mile walk on Wednesday.

Hydroxychloroquine went straight for my eyes. Rare but not unknown. Plus I was overdosed. Maximum "safe" dose is 5mg per kg.

Then my rheumatology department was so completely overloaded it couldn't even talk to me about methotrexate for 2 months.

I was relapsing quickly so I researched every non prescription substance that has been tested on RA. I started a cocktail of:

4mg a day MSM. A private Rheumatologist told me they know exactly how this works but can't prescribe it because there are no authorised dose rates. My NHS Rheumatologist said "what's MSM?" !

Almost 1g a day of pure curcumin. Not turmeric, it must be the 95% extract of curcumin. Some versions have gone in, that makes my acid reflux worse.

1g a day of liquorice root. This was magic, it just turned off my gastric acid reflux overnight. I have to take the version without glycyrrhizin in, sold as DGL, because it affected my blood pressure as it does many people. I haven't touched a PPI since I started taking it.

1g a day of cats claw. This one has an anti TNF factor action like methotrexate does. It's widely used for RA in south America.

I am in compete remission with perfect blood scores and was signed off from Rheumatology this week after 10 months on that regime. I last had a flare 6 months ago triggered by stress cortisol + autumn cortisol rise + glycyrrhizin induced cortisol rise all at the same time.

I don't know if that will help anyone.

Please insist on a Dexa scan if you don't already know your bone health. RA is a big risk factor for osteoporosis. I asked and was refused one. I paid £250 for a private one and it came back with osteopenia in my hips but serious osteoporosis in my spine.

Above message should say "some versions have ginger in"

Same. Methotrexate does apparently work for the majority but didn't for me. The third thing I tried, biologics injections, have had the most success.

You may need steroids while the other stuff kicks in.

Does anyone get random nerve pain around the body, not just the joints?

Are they sure it isn't polymyalgia rheumatica? How high is your anti CCP score?

This is so helpful, thank you. I also have acid reflux, please could you tell me the exact products you have for cats claw, liquorice root and the curcumin?

I did get a lot of random nerve pings like someone had just stuck a pin in me. That was likely to be the vasculitis though.

My version also attacks tendons and ligaments, not always the joint itself.

Cats claw, DGL from ecovits on ebay. Don't worry about the platform they are selling on, it's a great supplier.

MSM from whoever has it cheapest in 1g or bigger tablets today.

Turmeric from Just Vitamins. Their subscription service is dodgy and they have to be prompted but the product is bang on.

Acid reflux is a common comorbidity with RA.

This thread is so useful. I'm about to see a private rheumatologist as I have weird painful symptoms. Awful pain and tenderness in both hands and balls of feet. Problems with embedded rare strain of thrush, bladder problems, dry eyes and mouth, also fatigue. I need to take painkillers an hour before I get up in the morning, otherwise I can barely walk. It's great to read this thread.

Yes I get nerve ending tingles and over the body.

Yes @Imdunfer i have hydroxychloroquine effect (retinopathy) on my eyes - I’m still on it but on a reduced dose. Seems a bit better at the moment but I’m monitored very closely.

My husband had a very rapid onset too. He is a year and a half down the line.
Hands are slightly deformed now, but the pains and needles are getting better.
Medication and diet seem to be the key. It can be really different from one person to another. And you need to keep chasing your rheumatologist.
He had a knee replacement. Waiting for the other one.
Shoulders are really painful too. Hoping to find a combo of med and diet that hets him stable. Flares are less often now.

Sjogrens?

My DM gets pains in her hands and wrists but she’s diagnosed with RA. What she’s found is eg she broke her femur last year (same leg as knee replacement) so now can’t walk down hills unless with support (railings or holding onto someone) she was fine though after the knee replacement. She also has to sleep properly so now in double bed by herself (without stepdad). It has a special large wedge pillow. Uses shoe horn to get shoes on. No need for a stick.

My DM has acid reflux and now gerd. Avoids tomatoes, onions, garlic.

The one thing I would say is exercise is good. My mum only walks and does t’ai chi and qui gong.

Sadly my CCP antibodies score of
189 suggests RA not Lymes. I will mention to Drs though.

That's high, I hope you are successful on getting that down.

I don't avoid anything since I started taking liquorice. It's well known to work it's not just a fad.

Join NRAS. They’re very knowledgeable and helpful and they have an excellent advice line.

Oh I’ll tell her to try that then, thanks!

I have RA, diagnosed 8 years ago at 31. Just moved to my third biologic. I have good and bad days. One biologic was amazing and I was able to work full time in a very full on job but now I don’t think that’s possible and I need to work part time in something less demanding.

The painful feet was one of my first symptoms. I like it to walking on a pebbly beach in bare feet. So painful.