New member awaiting confirmed diagnoses of RA

[Gaz227]

Hi All , my names Gary , just thought I would introduce myself to the group, I have had auto immune issues for the last 5 years treated with pred currently on 3mg but struggling. I was being treated for PMR but I don’t think that has been the issue for some time now, started getting severe knee, wrist, shoulder and lower back pain , other joints hurt to but not as severe . Been struggling with chronic sternum pain for nearly 2 years MRI showed inflammation in all the small joints and clavicle SC joints. I also have really dry eyes and at night a very dry mouth. I noticed on other posts people on here get like lumps on their palms of hands I have had them for a few years now and curly fingers. I also get upset stomach a lot gurgling and nausea plus my joints creak and clonk like crazy every time I stand up, is that also a symptom ? It’s such a minefield . My profession is a martial arts instructor for nearly 40 yrs so you can imagine a diagnosis of RA is bad enough for anyone , just hope I can carry on in some capacity not sure if that is a viable option. Hoping to hear that there is a light at the end of the tunnel , Can you lead a normal life with this condition . I guess my meds are going to change , do RA folks take pred is that an option at low dose if it controls the symptoms , or are D-mards and biologics a must to prevent further damage I have been avoiding methatroxate as a sparring drug for pred like the plague as you hear so many bad things about it , so confused at the moment any advice would be greatly appreciated . Wishing you all a pain free day . 👍😀

[sylvi]

First off Gaz get a referal to a rheumy and get some bloods done as well as good luck. Things will be different for us all. I can be here if you have anything you want to know. I am just a lady with RA/Fibro and other things.xxx

[Gaz227 in reply to sylvi]

Hi Sylvi, I’ve got a Rheumy that I see once in a blue moon , I’ve actually Got a telephone app next Wednesday With him, never found him to impressive to be honest, just says get off the pred every time I speak to him not how is the pain or to discuss any new symptoms. I’m writing an SA of questions for next week so I don’t forget anything , I recently had some bloods done I am one of those people that never shows up raised markers ie ESR and CRP but I don’t think I have ever had bloods specific to RA . It was the MRI radiographer that suggested I possibly have RA , so will be interesting to see what the Rheumy makes of his report . Thanks for getting back to me 👍

[sylvi in reply to Gaz227]

Like me your sero negative, nothing shows in your bloods.xxx

[Gaz227 in reply to sylvi]

It just complicates matters , sometimes you just want a definitive diagnosis. Do a lot of people get the dry eye problem with RA , I have had dry eyes for 18 months now and the Rheumy just ignores the fact it’s really is a big problem for me I wish he would understand how sore and frustrating it is after so long, I have an Eye test/examination tomorrow just to check there is nothing else going on in my eyes .

[sylvi in reply to Gaz227]

They can cauterise your tear ducts to stop the tears from draining out.xx

[Gaz227 in reply to sylvi]

Does that stop tearing all together in which case would you have to use sprays like eye mist all the time ?

[sylvi in reply to Gaz227]

I still have drops for my eyes, but i have a lot of other problems, but they do help.xx

[Fruitandnutcase in reply to Gaz227]

Hope your eye test went well and you have had some help.

In case you haven’t - get yourself some good preservative free eye drops - HycoSan or Theolose Duo for day time and something that is thicker for night time - I use VitaPos, get yourself an eye bag that you pop in the microwave for a minute or so then put over your eyes, then massage your eyelids after you have done that, I also bought a bottle of eye wash Visualize or something like that - it is intended for contact lens wearers, comes with a little eye bath.

The big thing about dry eyes is that you have to keep using the drops regularly throughout the day rather than morning and night - your eyes will improve a lot with that but don’t stop them when your eyes get less dry or you go right back to square one. I know because I’ve done it.

Hope your phone consultation with the rheumatologist can help you. It’s not a good condition to have in your profession.

You could always try going totally gluten free and see if that helps. I already had Graves’ disease an autoimmune thyroid condition and a couple of other autoimmune things so when I was diagnosed with sero negative inflammatory arthritis I decided to go totally gluten free. Im in remission from the graves and I’m supposed to be in remission from the arthritis - I still feel like I’ve been run over by a bus at times but not as bad as I was before but according to my rheumy I'm in remission and I think it’s being GF that has helped. It might be an idea to be tested for gluten before you stop eating it - yu need to be eating gluten for the test to work, I wasn’t ever tested before I did it and I wouldn’t want to start eating gluten just for a blood test.

[Gaz227 in reply to Fruitandnutcase]

Thanks I will take on board what you said about the eye drops , I got eye-mist from boots that works but I don’t use it frequently, guessing I should, I’m currently yeast free and dairy free finding that helps, a nutritionist friend of mine studied a food diary I did and came up with me having a food intolerance on one or the other, I suspect yeast as I have had outbreaks of oral thrush in the past most likely due to the steroids I have taken for 5 years , diet is still a work in progress but I will get to the bottom of it , once I remove gluten , I will be virtually on the caveman diet , the problem is it’s just so boring. Thanks again for your help 👍

[Fruitandnutcase in reply to Gaz227]

You’re right, frequent use is the secret for dry eyes and preservative free. I’ve tried that eye mist stuff in the past - it’s easy to use but I really didn’t like the smell, I always think it smells like chip fat.

Steroids are nasty things. I was given a three month decreasing course when I was first diagnosed - the idea being that if they worked I was to start on hydroxychloroquine. They did work, really well. I felt like WonderWoman unfortunately I ended up with steroid induced T2 diabetes which was a bit of a pain.

I dieted and exercised my way out of the T2 but it’s made me very wary of them.

Good luck with the caveman diet and your quest for better health.

[Gaz227 in reply to Fruitandnutcase]

Thanks 👍

[Hidden]

Hi Gary

Sorry to hear of your difficulties. Welcome to the group.

The drugs can be scarey but pred only treats the inflammation but doesn't stop the damage. And then there's the long term side effects.

Methotrexate as you say is a disease modifying drug and can dampen down the inflammation reducing pain and swelling and giving you back more function.

Some of us have gone into complete remission on drugs.

It's up to you but by avoiding treatment you risk irreversible damage.

Nras website has excellent resources and you can also request to get a call from someone with RA.

Best wishes

Kiki

[Gaz227 in reply to Hidden]

Hi Kiki, thanks for the info , I will know more when I speak to the Rheumy next week , I take onboard what you say about D-mards I suppose quality of life is a massive factor in the decision whether to take them or not, I am or was an extremely active person training everyday Most days 2 or 3 times, it was a massive shock when I first got hit with all this auto immune stuff I just thought I was over doing it but unfortunately it wasn’t to be. When you say people go into remission , I presume they still have to take the medications , or is it possible to switch the disease off completely ?

[springcross]

HI Gaz. Welcome to the forum. You've come to the right place for help, advice and a good giggle. Pred only controls the pain, it's the Dmards and biologic drugs that control the inflammation and prevent joint damage and distortion. I am in my first year so I still have a lot to learn, but there are plenty of people on here with far more experience and information than I can give you, two of them have already commented and as Kikideelili has already said, NRAS website is excellent too. x

[Gaz227 in reply to springcross]

Thanks very much as I said to Kiki , I will know more when I have spoken to my Rheumy y next week. 👍

[Rashford20]

Welcome,

Living a ‘normal life’ scared me too. I feel so much better then when I was first diagnosed and that was only 4-5 months ago.

I’m not back to 100% but I’ve been exercising regularly including lifting kettlebells/ running 5ks etc. One of the things that scared me was people saying things like ‘I can’t walk far etc’. Quite often these people are significantly older with other health conditions. I’m not trying to be rude about others experiences but i assume to be a martial arts teacher you need to be relatively fit/flexible/strong etc so hopefully if it is RA it will get under control and you can go back to your sport.

Good luck.

Disclaimer: not trying to offend anyone 😬

[Gaz227 in reply to Rashford20]

Thanks I needed a lift , when I was diagnosed 5 years back with PMR it knocked me off my feet so bad it felt like the end of the world that’s if it ever was PMR, could ha e been the start of RA then . Only 3 years ago I was fighting in the world masters Ju Jitsu in Las Vegas medicated of course but still very fit . I would be happy to just get back to teaching and passing on my knowledge I guess only time will tell , With a positive attitude who knows what you can achieve 👍😀

[Thingybob]

The best bit of advice that I was given on diagnosis was to avoid googling ! I looked everything up on google at the start and it made my anxiety and fear for the future worse. A lot of the information out there is scary and often inaccurate or is offering what may be false 'cures'.

Stick to reputable and knowledgable sites like this one and NRAS.

The other good advice was ...The journey to find a way through, to find a drug that works for you may not be quick, but the sooner it is started the better.

[Gaz227 in reply to Thingybob]

Thanks taken onboard

[Mmrr]

Welcome to the forum.

Some good advice in the above posts.

Do take care with what you exclude from your diet without professional dietary advice, there is little evidence for diet impacting on RA in a significant way.

NRAS suggests a Mediterranean type diet, avoiding anything that upsets you as an individual.

The main thing is to get the inflammation under control, then everything else usually follows on too.

[Gaz227 in reply to Mmrr]

Thanks for the advice 👍

[Mmrr in reply to Gaz227]

Meant to say, my gut has been so much improved by changing my eating pattern. I don't eat anything after 4/5 pm until breakfast the next morning. I have breakfast/ lunch and dinner each day.

Everything is fresh and cooked from scratch, no sugar (ulcerates my mouth) and no alcohol.

I have noticed a significant difference to my gut, less pain and less gurgling.

[casanncox]

Hi Gary, I have been on methetrexate for 20 years. I started off with a very high dose of steroids and then methetrexate. It was 12.5mg at that time once a week and then it was reduced to 10mg, which I am still on. This method of treating RA seems to be OK for me but like a lot of people suffering I still get the occasional flare-up. Also regarding the lumps - I have a few on my ankle and one on my wrist and this is just one of the side effects of having RA. There is not much that can be done about it. As regarding work - I do hope that you can continue. I worked for the Met in London and still carried on my very busy job. So I wish you all the luck in the world and hope that you/consultant finds a solution which suits you. KIind regards.

[Gaz227 in reply to casanncox]

Thank very much , appreciated

[Hidden]

Gaz, I'm so sorry to hear how you're suffering. The best advice I can give you is not to be afraid of Methotrexate. We all were to start with, but lots of people will vouch that they have taken it safely for a long time. I started it 15 months ago, aged 69, and I haven't had any trouble with it. I was declared to be in remission after just over 5 months. It isn't called the gold standard treatment for nothing.

Of course, no-one can guarantee your experience would be the same, but you really should give it a go. You need to be taking something that tackles the RA itself and does not just mask the symptoms. MTX is the place to start. There are plenty of other drugs if that doesn't do the trick, but MTX is one of the mildest. If you have read horror stories I think they may have been about people taking very high doses as cancer treatment. The doses used in RA are much, much lower.

Prednisolone is a stop-gap treatment for when things are really bad, often used while waiting for MTX to start working (it takes a while). It's best to take the least amount of Pred that works and for the shortest time as it's a long slog to get off it if you have been taking it for some time. My consultant made me take about 5 months to slowly come off the last 5 mg after I'd been on Pred (starting at 15 mg and reducing) for the previous 4 months. I'm glad she did spin it out as I had no withdrawal effects.

Discuss your concerns with your rheumatologist. Most are very happy to reassure patients. Just don't keep putting off the MTX because the RA will be attacking your joints.

[Gaz227 in reply to Hidden]

Thanks sound like wise words 👍

[Goldsky]

Hi Gaz, I have just joined the group too and the members have been so welcoming and helpful.

I was diagnosed with RA 4 years ago and put on Methotrexate, which worked well for a time. Since then, to cut a very long story short, I have been prescribed different meds and biologics. I am now on Abatacept which has halted the progression of the disease.

One thing I would advise is if you don’t feel you are getting anywhere with your consultant ask to be transferred to someone else. You have to have total confidence in the person treating you. Also, I agree with others in advising against long term use of steroids as they do damage your body.

I really hope you get the help you need soon.

[Gaz227 in reply to Goldsky]

Thank you 👍😀