New to RA : Hi I have just been diagnosed with RA a... - NRAS

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New to RA

Shazza10 profile image
15 Replies

Hi I have just been diagnosed with RA a couple of days ago. At the moment it’s seems to be only in my left hand ( well only getting the symptoms there. I am going for more blood test and X-rays and have only been put on anti inflammatories. These have. Been causing more problems with my digestive system so I have stopped them and gone onto CBD oil . Has anybody else tried this ?

It seems to be working but I’m not sure if this is mind over matter

I’m also worried about take other drugs long term

Thanks sharon

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Shazza10 profile image
Shazza10
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15 Replies
Elswick profile image
Elswick

Hi I was worried to but it’s all about quality of life and if you get your blood checked regularly it should be fine . I have been on methotrexate now for 15 weeks I am 10 times better than I was got to change to injection s fri not looking forward to it but the people on here assure me it’s fine I have ra in my hands wrists and back were all in the same boat keep your chin up they will do what’s best for you 👍x

Shazza10 profile image
Shazza10 in reply toElswick

Thank you I’m just a little scared of what happen in the future for me now as I like going to Bootcamp and exercising . Don’t like taking medication for a headache let alone anything else

Elswick profile image
Elswick in reply toShazza10

I was exactly the same never took a tablet never went doc always kept fit always eat fresh fruit veg did long walks swimming then one day it was like hitting a brick wall the dreaded ra it took me a long long time to accept it but the sooner you do the better it’s not going to go away but you will learn to adapt I wish I never had it but I have and their is lots of people children worse than me that’s how I cope with it good luck hugs x

popsmith1874 profile image
popsmith1874

I'm waiting to go onto Humira as Benepalis stopped working (biological) I'm also on Methetrexate injections 20mgs and Sulfazalasine 500mgs but I also rub cbd oil on my hands and I think it's helping with the pain, been doing it for a month now

Shazza10 profile image
Shazza10 in reply topopsmith1874

Thank you , i have been taken CBD in droplet form . Appears to take the pain off a lot but hand is very stiff and weak

helixhelix profile image
helixhelix

You should have been offered stomach protectors with anti-inflammatorys as they are tough on the stomach...talk to your GP about it as the CBD oil might dull the pain but won't stop the inflammation.

For many/most of us the diagnosis is a shock, and the idea of taking strong drugs quite horrific. Let alone endless visits to doctors, blood tests and so on. However, my advice would be to focus on the future and getting this disease under control. If you are fit and healthy then you are in a good place to start with and not only should that help you tolerate the drugs better, but also be able to continue normal activities. Getting diagnosed early is also a good thing for you as more chance of getting into remission quickly.

Make sure you continue to look after yourself, with proper sleep, diet and exercise. And hopefully you'll be able to get by with the mildest of drugs and be back to where you were with a month or two.

stbernhard profile image
stbernhard

Hello Shazza, you've got good advice already. I just want to say that the drugs will slow down or halt the progress of RA. Without drugs you may end up with irreparable damage. RA is a systemic condition which can affect many parts of the body. I am not setting out to scare you. I was diagnosed 9 years ago and am in remission for the last five years (thanks to the drugs to a great extent). I lead a good active life with RA and am sure you will as well. You have all the elements in your favour. You'll find a lot of very useful information on the NRAS website and they have excellent people at their help desk. Well worth having a look if you haven't already., All the very best and keep in touch.

Shazza10 profile image
Shazza10 in reply tostbernhard

Oh thanks I’m just very scared at the moment of what the future may hold . I know someone that was diagnosed a couple of years ago and is still in a lot of pain and now unable to work .

I’m going for more blood test and X-rays tomorrow then have the follow up appointment with GP on the 9th .

I just need to speak to people that know

I really appreciate all your advice thank you x

Rubyroo1 profile image
Rubyroo1 in reply toShazza10

I know exactly how you feel, I too am at the start of things and only just been diagnosed, trying to be positive, as things could be worse and could be something more horrific ! It's the trying to get your head round things which is the difficult bit at the moment. I had a steroid injection last Friday which has helped with my feet, but still have aches in my knees and an ache back in my thumb today, just hope the jab keeps working until my next appointment on the 10th. There are lots of downloadable booklets which seem very good, that's my weekends reading, have a look on the NRAS website under the help for you heading ......lots of info there which might be of use ?! Plus there are really nice helpful people here on this forum. Good luck for the 9th !

Shazza10 profile image
Shazza10 in reply toRubyroo1

Thank you and good luck to you xx

medway-lady profile image
medway-lady

Don't stop taking medications without talking to your medical advisors, and to be honest CBD oil ? or snake oil ??? Medications are expensive and are not prescibed without good reason so yes be a bit concerned but whats the alternative a life limiting, painfull disease that causings swelling and fatigue and is actually painfull. So its up to you but are you prepared to risk the faint possibility of some minor side effects, or do you want to be ill and unable to live a normal life. Most side effects wear off and all medications have risks even Asprin. I do sypathise but 2 days is not really any time at all to judge anything. Remember that now it might only be your hand but RA can affect the lungs, ribcage, blood etc etc etc. Look up a well organised website like the NRAS and don't believe all you read on Dr Google and be patient. RA is not pleasant and I for one wish I did'nt have it, but I do, and its in remimision, thanks to the NHS and some expensive drugs. So if your in the UK talk to your GP or hospital team and yes I believe CBD oil is worth trying as long as the risks of it helping by being just in the mind are understood and proper medical advice not ignored.

I do keep fit and a lot of other stuff thanks to being in remission and my life is far from over because of the RA but it has affected my lungs and blood so just beware its not all about joints thats all.

Shazza10 profile image
Shazza10 in reply tomedway-lady

I have only been given anti inflammatories at the moment, they want to carry out more blood test first . I was taking them for over 2 weeks with little affect. I have only just stopped them and gone over to the CBD oil as I read that it will hell with pain , inflammation and slow RA down . If it works that great. My hand is less painful and swollen and I deffently sleep better.

I will always take note of what the experts say say . Just not been given much information so far. I saw the worse Gp in my surgery for the first lot of blood test results. Every thing I read is so worrying from RA and the medications side affect.

I just need the 9th to be here so I can have a good chat with my GP who thankfully specialists in this area.

I’m glad to hear that you and others are in remission. This gives me much hope. I am a little shocked at how many people don’t really know what RA is and truth be said I did not realise much about it x

medway-lady profile image
medway-lady

Your GP will refer you to a Rhumatologist and the meds the GHp prescribed are most likely just a stop gap but please don't just stop them, Anti inflammatories don't usually have any great impact its the DMARDS that are the ones which cause side effects usually. RA isn't so bad and above all stop reading the PIL's its a fact if 10%of people get a side effect then 90 % don't so stastically the chances of not getting any are extrenly high. As bad news sells newspapers, likewise side efffects are talked about a lot although realistically it has to be said those who have no side effects probably rarely post as they are too busy being normal. Try not to be alarmed, just remember that RA is treatable and most medications bring most into remmission even if it takes a while xxx

Shazza10 profile image
Shazza10 in reply tomedway-lady

Thank you so much

thelmar profile image
thelmar

I have been taking CBD since Christmas. It has taken a while to find the right one and to get the dosage right. Hopefully today’s news from the Health Secretary that cannabis will be available on prescription will make it easier to get information. Have you looked at the Facebook group CBD Consumer Group UK/UE? Lots of helpful information.

Although the CBD helps the pain a lot I still take methotrexate, hydroxychloroquine and have infusions of Abatacept. There is no way I am going to risk the damage that RD will do.

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