Hi from a Newbie: Hello all, recently diagnosed with RA... - NRAS

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Hi from a Newbie

P0mp3yBlu3 profile image
28 Replies

Hello all, recently diagnosed with RA and coming to terms with it all. Not really understanding how I can suddenly become very ill in such a short amount of time! Currently taking Hydroxychloroquine, Naproxen and codeine. Looking at turmeric and cats claw as an extra. Does anyone have 1st hand experience of these alternatives to medicine. I'm keen to hear as I don't fancy a lifetime of prescription drugs!

Thanks all

Andy

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P0mp3yBlu3 profile image
P0mp3yBlu3
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28 Replies
allanah profile image
allanah

Hi Andy welcome. Yes I get ill overnight and it was awful ! But the drugs do control the damage which may otherwise occur in the joints etc.

If you go on the Nras website there is a lot of information there on complementary medicine.

I must warn you to check what you are using as some interfere with the RA disease modifying drugs. The modifying drugs stop the ptogression of the disease in many cases . You can also check the Nras helpline on their website and they are amazing for quick answers snd support of you need it .

Keep well A

Trouble is, inflammatory arthritis does make you ill. RA and PsA etc. don't really go away, though some may find that their disease takes a relatively mild course and some (though I suspect not that many) go into remission i.e. very minimal symptoms.

I'd agonise over taking one Nurofen for a hangover before my PsA diagnosis (these days I agonise over whether my liver can handle the occasional glass of wine) but I have come to accept that I need the drugs. I was just so damn ill all over before finding a treatment regime that worked, the joints were bad for sure but there was also crushing fatigue, anaemia of chronic disease .. general 'malaise' to use an old-fashioned term. Uncontrolled inflammation can affect our organs, our whole body. Even the way I looked ..... I look so much better these days so old photos are a good reminder to me every time I start day-dreaming about getting off Humira etc.

Having said all that, my rheumy is fine with me supplementing with turmeric tablets. There's research that suggests they may have a similar affect to NSAIDs, though probably not as much. As Allanah says, it's best to check though.

nomoreheels profile image
nomoreheels

Welcome Andy. Sorry to hear of your diagnosis but if you have to have it at least you're amongst others who know just how it is. I only had signs for a month & another fortnight before I was diagnosed so I understand what you mean! I started on HCQ too, plus a couple of NSAIDs & a short course of steroids to tackle the inflammation whilst waiting for the HCQ to take over. Unfortunately we have a chronic disease with no cure yet but we live in hope if not for ourselves for future generations. There's plenty you can do to help yourself but I'm afraid meds are necessary if you're to beat it into remission. I know it seems a lot of meds, particularly if you've not needed much more than the odd paracetamol or ibuprofen before but it'll become routine in no time & once you notice results you'll understand the need for them!

As Allanah says if you're wishing to supplement your meds you'd be advised to check with your Rheumy first as some aren't recommended to take with DMARDs (HCQ in your case). Cats claw in particular is one which warns not to take with meds that suppress the immune system, it should state similar on the label. My Rheumy's ok with me taking Omega 3 fish oil (I'm not a huge fish eater & whilst I do like some with higher natural omega 3 it'd be a restrictive diet). I'm prescribed AdCal-D3, a daily calcium & Vitamin D but all other vitamins I get through a good, healthy & varied diet. I think this is the link A was referring to nras.org.uk/diet-rheumatoid....

I hope you enjoy being here. Ask away if you have any questions, we're a wealth of information & knowledge between us! :)

P0mp3yBlu3 profile image
P0mp3yBlu3

Thanks all for your replies. There is so much to read and take in its overwhelming I don't know where to start. I've found so far that once you're diagnosed it's pretty much take these pills and crack on. I'm glad that I've come across this forum and website as I can see that there is a wealth of knowledge contained in it and all the members that use the forum.

Andy

nomoreheels profile image
nomoreheels in reply to P0mp3yBlu3

Just keep to reputable sites such as our own nras.org.uk or Arthritis Research UK arthritisresearchuk.org. & you'll not go far wrong. I wish more Rheumys gave a list of recommended sites to go to when they're diagnosed. I found the one I was given very helpful & still use many of the sites over 7 years later. Bear in mind information on any overseas sites may differ, treatments may be similar but often have different rheumatology guidelines to the UK & Europe. Branded med names may not be the same either.

bpeal1 profile image
bpeal1 in reply to P0mp3yBlu3

I know how your feeling when I was diagnosed 10 years ago I hardly ever took even paracetamol for a headache.

My sister in law is a physio and she said to me that the RA patients she saw the most and with the most damaged joints were the ones that didn't take their medication. That put it into context for me! And eventually I accepted that I needed to take it.

nomoreheels profile image
nomoreheels in reply to bpeal1

I wasn't troubled by the thought of meds, I'd been through IVF but like you I hardly needed much more than naproxen & paracetamol otherwise. My go to were pics of my nan when at the start of treatment I wondered if meds really did work. Her hands were as you'd expect when the prescribed meds were brufen & maybe a pain killer, you know, the pics we see of deformed hands. That was enough to convince me!

Godandme profile image
Godandme

I have gone off all prescription drugs and am on a very strict diet. No gluten, no dairy, no nightshade veg e.g. capsicum eggplant white potato tomato and using mega anti inflammatory spices eg turmeric ginger garlic curry. Have been on diet only for near five months and have only had six panadol and use Arnica cream as required. It is s lifetime very strict diet.

Hope this helps you.

Luisa 🌸

flow4 profile image
flow4 in reply to Godandme

What about sugar, Luisa? I gave it up in November as a sponsored thing, and then discovered in the run up to Christmas that if I have it, I seem to get inflammation...

Godandme profile image
Godandme in reply to flow4

Yes sorry. Sugar as well is a no no.

Luisa

Stephpz profile image
Stephpz in reply to Godandme

I used turmeric and otger herbs with very good success begore it was suggested by a surgeon to investigare possible inflammatory diseases. 3 rheum app and no clear dx for me (but lots of stiffness, loss of mobility abd pain) I take low dose nsaids and going back to turmeric etc.

Patrick holfords book is very good.

Wish you the best

Patsy-57 profile image
Patsy-57

We have all said the same we hardly ever took tablets and now we all happily line them up with our breakfasts, inject ourselves and have hospital infusions. But we would all do anything to avoid joint damage. Years ago these medicines were not available and the prognosis was dire. We all have looked at alternatives and run them alongside the RA drugs but check with your rheumatology team.

Patsy 57

Lucy11 profile image
Lucy11

Welcome Andy! I, too, am newly diagnosed with RA and often find myself at a loss with which direction to go. None of us want to line our cupboards with medicines we find harmful in and of themselves. It scares the wits out of me. And it confuses me. What meds should I take? Why me? How bad will this get? Why don't I personally know someone else with this disease? It's going on month number 2 for me and I take the meds. I also cleaned up my diet big time. No dairy, no gluten, avoiding processed food as much as possible. I also take Omega 3 pills and a combination of Vit D/ Calcium pill. I'm scheduling dental cleanings every 4 months. I will keep doing research on alternative ways to control the inflammation but will still continue the meds until my doctor tells me that I can try to stop. One major consensus is that the earlier you start an aggressive treatment with meds the better chances you have of going into some kind of remission and avoiding permanent joint damage. I may not have any friends or immediate family with this disease but I found a whole new set of friends here that also happen to come with a wealth of knowledge. I don't know how long it's going to take for me to accept this illness but I hope it's soon. In the mean time, I'm going to keep on keeping on.

Godandme profile image
Godandme

Thank you for your encouragement and kind words.

Luisa 🌸

flow4 profile image
flow4

Though beware that some of those marching confidently up the mountain actually forgot their crampons and don't know where the crevasses are! ;)

Mandalou profile image
Mandalou

Hi Andy

Welcome and good luck at the start of your journey.

It's a roller coaster at the start, a shock ( even though some of us looking back did have hints and signs that something was amiss but life got in the way plus a bit of denial possibly In my case two achy fingers on my left hand.)

I was diagnosed at the start of last summer and from climbing 2000 steep steps on holiday and thinking I had pulled my hamstrings became completely disabled in the space of about 3 weeks, so bad that I couldn't walk, dress myself, wash or comb my hair and the pain was as if every bone in my hands was fractured.

The oral rescue steroids given in a very large dose gave me steroid induced Diabetes and my liver rejected two DMARDS and I had a nasty allergic reaction to the third.

Hydroxychloroquine very subtly began to work after about 10 weeks I suppose, enough for me to reduce the Prednisalone ( steroid)

I am now on the Biologic Enbrel for the last 8 weeks and am doing so well that I am able to go back to work in March after 9 months and my job is extremely active, the total opposite of a desk job.

Honestly, I don't mean to rattle on selfishly about myself but it's just to give you an idea that there is hope.

Everything you are feeling, you are not alone.

There is great advice on here from your fellow sufferers and of course NRAS as an organisation are fabulous.

My advice is to read everything you can, stick to reputable websites as has already been mentioned and never think any question or worry is too small to ask your new friends here.

I wish you all the very best, I understand that in this day and age we all are extremely aware and bombarded with diet and health advice.

I would say and in my limited experience to look after yourself and be kind to yourself. You are going through big changes and upheaval and to add in to the mix drastic changes to diet is too much for the body in my opinion, though psychologically it does give you some sense of control , self help if you like, just follow a diet with plenty of fresh oily fish and fruits and vegetables and nuts and seeds.

Pomegranate for example is known to have anti inflammatory properties.

Mx

Juliev320 profile image
Juliev320

I'm newly diagnosed and feel exactly like you. I got ill instantly so that I couldn't move my arm more than two inches without screaming. Put me on methotrexate which isn't a fun drug. Only took it three times and hoping the side effects get better. All joint pain is gone, though! Want to see how it helps long term joint damage. I think it will take time to get used to it

Will talk to dr. About natural remedies. I have found to stay away from certain websites because some people can be So negative.

Keep us posted

nomoreheels profile image
nomoreheels

Now, play fair, Andy is newly diagnosed. At this point what is needed is support & balanced viewpoints not "if you want ....". What has been asked for is experience of two supplements as alternatives to meds. Take yourself back to this first rung of the ladder. Although you've not shared anything about your RD timeline I'd like to think you at least saw & listened to a Rheumy & did what each of us did & tried traditional treatment before choosing not to continue. That's where Andy is just now.

Jacki08 profile image
Jacki08 in reply to nomoreheels

Very well said NMH.. x

Mandalou profile image
Mandalou in reply to Jacki08

Seconded, well said indeed NMH.

Give the poor bloke a chance to get his head round his diagnosis.

It's understandable to be evangelical about a system of alternative/complimentary therapy if it has worked for you individually, however, the process following initial diagnosis is like swimming through treacle and for Andy to reach any sense of equilibrium he should be supported in a balanced manner IMHO. Bearing in mind every individuals differing disease path.

calamityjane1971 profile image
calamityjane1971

Hi Andy,

I hope that you find this forum helpful, I do but only tend to read posts.

Stick to reputable websites for research, and you can contact NRAS on their helpline too.

I heard that diet too can help, but it's very individual thing that I tend to read.

You'll have to let us know how the turmeric works for you.

I hope you find a treatment that helps very soon.

Janie

flow4 profile image
flow4

Welcome Andy :) I'm fairly newly diagnosed too - in late October after about 4 years of problems. I'm on Hydroxy too, plus Arcoxia (another NSAID) and the occasional paracetamol or codeine, and I'm another person who used to resist taking even a paracetamol. I was previously living a fairly healthy lifestyle, with a good diet, but I had a period of intense stress in the year before I became ill, which stopped me looking after myself properly and may have contributed to my illness. I'm sero-negative (normal blood tests) and already had osteoarthritis, which confused and delayed my diagnosis. I had about 4 years when I knew something was wrong, but not what... I do think it can be harder for people like you who get diagnosed quickly, because it does take time to get your head round what's happening and accept it... And of course if your RA has been caught quickly, you probably don't have any physical proof of it, whereas in my case I already have small erosions in my hands, deformities in my hands and feet, an artificial hip (replaced last year due to OA), and lumps and bumps all over the place, which show very clearly that there's something wrong!

I think most of us have misgivings about the meds; but because I was untreated and now have permanent damage, I am now someone who thinks it's wise to follow medical advice and take them, unless/until you become an expert in non-medical ways of managing RA. There's a lot of nonsense out there to wade through to find the good suggestions. And the dietary advice - which I do actually think makes a lot of sense - can be followed alongside conventional meds. That's what I'm doing...

Good luck to you, and I hope you find some relief, and some treatment that suits you, soon. :)

JacquiThomas999 profile image
JacquiThomas999

Hi Andy, welcome to this forum. It has kept me sane over the last 10 weeks. I am on week 8 of MTX. As others have said, do your research carefully, keep off Dr Google. And give yourself plenty time to do things. I personally rest alot, sometimes I think it is willpower that keeps me going. I can't afford to go sick, additional health problems and RA have put me on last chance saloon at work.

I hope that they find what works for you, although it takes time.

kalel profile image
kalel

Andy I can talk to you about this a bit more over the weekend but I was diagnosed with ra a long time ago and now I am like you I don't want to be on meds on any more so I am seeing an integrated health dr and seeing other alternative specialist that are helping me out at the mo.

Also on a personal note I have had friends who have stayed away from meds and now no longer have ra and then there are people like me who are healing there body but trying to come off meds we are all different and need to do what works best for us and our body.

if you can find a good alternative health dr then I would really recommend doing that.

I know that certain Chinese herbs can help with ra but you need to talk to a herbalist and they will tell you what herbs to take.

I do take things like organic turmeric etc in the evening doing things like this have helped me but like I said above either talk to a dr or talk to a herbalist and they will guide you further.

If you want to talk further feel free to message me ok. I will have some more time to talk over the weekend.

P0mp3yBlu3 profile image
P0mp3yBlu3 in reply to kalel

Thanks for that. I'm still in the very early stages of treatment. I want to give it a chance to work and get me settled in to some normality again before I look at other forms of treatment. I will however give you a shout when I'm ready to explore this option in more detail.

Andy

kalel profile image
kalel in reply to P0mp3yBlu3

you have got to do what is right for you.. we are all differnt right?!

Personally I really regret starting on meds they have caused all sorts of side effects and my body seems to have come some what addicted to them and this is why I had a hard time coming off meds. On a brighter note I have learnt a lot about how autoimmune diseases etc etc.

However like I said we are all different and you need to do what is right for you.

No matter what you do just make sure your muscles are as strong as possible this is the best way you can prevent your self from having joint damage. Even if you go through a flare up try and do some sort of light exercise.

If you are ever bored in the evening I would highly recommend looking someone called the medical medium and reading his book and taking a look at this site

nutritionfacts.org/blog/

If you need to talk message me any time.

Good luck on your health journey.

Ali_H profile image
Ali_H

Hi Andy and welcome to our merry crew :)

I use turmeric as a food supplement as it was recommended by my GP - if you're going to take a supplement then take turmeric was the gist of it. Black pepper I have with my meals and it is supposed to help with pain - I am lucky that pain with my RA is not a huge issue - inflammation and fatigue are my crosses to bare!!

I take flaxseed for dry eye and when I stopped it my ophthalmologist said my dry eye had got worse so I started it again and sure enough when I saw her again the dry eye was less.

I stay clear of tomatoes, potatoes and chillies and also try to keep my gluten and dairy down. I try to keep my weight down (but it could be lower!) and get plenty of sleep. I work full time and by pacing myself have managed to keep my sick days down to zero since returning back to work after my RA diagnosis and initial treatment period last March.

Be gentle with yourself in the first six months or so as you are having to make a big physical and mental adjustment and if you are looking to reduce your prescription meds in the future I would look at the pain meds first as the pain itself will not cause bone erosion, deformity or disability but you may not need to take the pain meds all the time (my naproxen is as required now and I rarely need to take it and reach for a warm bath or mug of tea first to see if they help ease things). I find mindfulness meditation helpful in keeping a mental perspective and taking stress out of the equation and thus avoiding the risk of stress related flare ups.

As far as work goes my employers are understanding and make reasonable adjustments to help me manage my workload and Access to Work came in and made some recommendations re computer equipment and seating/desk equipment.

I hope that you get something out of all that 'waffle/info' :)

All the best

Ali

Oops, I forgot to say my dmard is methotrexate (20mg per week) and I took it with porridge first to help keep the nausea side effects down and now I just take it Thursday breakfast time and get on with my day with no hassle.

lainee profile image
lainee

Hi Andy there is alot of advice already so I am just going to say welcome to our site x

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