Hello everyone, I feel like a new member of a club that no one wants to be in but hey ho here we are. I went to my GP mid May to discuss my suspicions that I have RA (middle knuckle of one finger swollen so that my finger won't straighten and a lump on my knee which may or may not be related to the RA). I then followed the path of bloods, x-ray, referral to rheumatology, more bloods, ultrasound on hands/wrists, steroid injection in bum (ouch and now sporting a lovely colourful bruise) and then diagnosis. It has only taken around 9 weeks to go through all of the processes and I am pretty impressed with that time frame considering how many people are having to wait for appointments etc. I consider myself lucky that it has all been so quick (thank you universe). When I received my diagnosis the consultant immediately told me that that I have to go on methotrexate and hydroxycholorquine. The reason my head is in a spin is not the diagnosis as I fully expected it, it's because I have a tablet phobia. The biggest tablet I can take is the contraceptive pill. The reason for my phobia is that I got a vitamin tablet stuck in my throat several years ago and it scared the life out of me because I live on my own and have no help if this was to happen again. Now everything I take is liquid (vitamins, painkillers etc). The consultant said that these meds are tablets which can't be halved or crushed and since she told me this my anxiety has been through the roof. I cannot do tablets, I would rather go without. Just the thought of it is making my throat close up to the size of a pin head. I have also read of all of side effects of the meds and that doesn't help me either. My logical head tells me that you will always hear the failure stories rather than the success stories as human nature makes us good complainers. I can't have the meds yet anyway as I have to have a chest x-ray first so I have some breathing space. I think what I am looking to hear here is any success stories of these meds together. If anyone has any advice it would be greatly appreciated and thanks for taking the time to read my long essay.
Newly diagnosed and my head is in a spin - meds help... - NRAS
Newly diagnosed and my head is in a spin - meds help please
Those meds were/are brilliant for me!! I have moved on from hydroxy, but am still on MTX many (11?) years later. I wouldn’t be without it!
MTX is a teeny, tiny pill - possibly even smaller than the contraceptive pill and a cute sunny yellow. They like to start on tablets, as moderates reaction, but you can also inject it.
Hydroxy is pretty tiny too.
But being blunt and a bit “tough love”ish, if you are diagnosed with RA you need to get over any medical phobias. I was completely needle-phobic in a massive, massive way and have been sincere a little kid. I now inject twice a week without problem, and my family are amazed!
You will get used to it, especially when they take the pain away and allow you to live normally again!
Lots of water, and stand up - makes them slip down easier.
I like that you are trying to sell me on the sunny yellow colour of the tablet haha. I don't actually have any pain with any of this which apparently makes me a rare and unusual person according to the lovely nurse at the hospital. Thank you for telling me the size of the tablets, if the consultant had said this I would have felt better but I have a call with the nurse next week to talk through the meds so I am sure they will go through it in more detail and I appreciate that you have had great success with this regime so I am hopeful for the same but understand that all of our experiences may differ. Thanks for the tips, I will remember to stand 😊.
Oh dear, was I coming over as being bossy? I do have a tendency 😶
You won’t have pain with steroid in your bum, doesn’t mean it’s not going to happen. That’s one of the most irritating things about this disease - no-one can predict anything. Fingers crossed you have a non-aggressive version.
You weren't being bossy at all and I did appreciate your reply. I feel like I am being a petulant child, 'you can't make me do this' kind of attitude. I just need time to get my head around all of this. I didn't have any pain prior to the steroid but maybe I just got used to it so didn't feel the pain anymore. I am used to being strong and independent and long may it continue.
Welcome to the club! At one time in the good old days we weren't given effective medicine but progressed onto it when the damage to our joints had been done. Now we get them from the start to effectively knock back our immune system from attacting our joints which RA does. I inject not methotrexate which I did once and initially was a wreck but I had to tell myself you do it. Don't let a phobia stop you from causing further damage to your body. Talk it through as believe me in time you'd rather have meds than go without.
Welcome to the club. Helixhelix has given you great advice above. Just wanted to add that you may find CBT (Cognitive Behavioural Therapy) useful to get over your tablet phobia. The rheumatology department may even be able to refer you. My teenage daughter had a massive needle phobia and her rheumatologist referred her for CBT and now she injects herself.
Welcome to the club . I think we have all viewed starting on the meds with reluctance - perhaps part of the difficulty of accepting the implications of the diagnosis. The MX tabs are really tiny but if you still have a problem speak to a friendly pharmacist or your rheum nurse for ideas.
Good luck!
HAve you thought about getting hypnotised to help your tablet fear darling. It mght help you with taking MTX. Welcome form me we all are in this club and we are in it together.xxx
Dont forget too that they wont choke you, because they melt. Good Luck
Welcome to the club . As the others have said the tablets are really tiny, but also they really do help and will make you ..hopefully feel so much better . The methotrexate does come by means of injection if you do struggle though. Talk this through with the rheumy team I am sure they will help you see a way through it all. Good luck and have a nice day.
Also a trick for tablets is not to throw your head back. But take a mouthful of liquid, pop the tablet in and actually look at the floor. The tablet will float to the top and closer to the back of your throat. I could never do tablets, and one day I had to have them, I practiced with smarties over an empty sink. Sometimes it wouldn’t go down, and I’d have to spit it out and try again. But most times it would. 
good luck, stay calm, you can do this!
I have trouble swallowing so I take all my pills with banana. Bite a bit of banana and chew it slightly until mashed, then pop the pill in my mouth and coat it with the banana then swallow. Don’t even feel the pill going down!
Brilliant tip!
What a great tip!
Hi and welcome to the site. I was put on mxt and hydroxychloroquine when first diagnosed. After various combinations I am soley on mxt now and have been for many years. I have taken mxt for 20 years and it has been amazing for me. I have had no sickness or side effects from it. Phobias are not to be taken lightly. They are very debilitating in themselves. I know, I have suffered from a very aggressive phobia for almost 50 years and it has been hell. It has nothing to do with RA or needles or anything like that but it has made my life very difficult so I understand completely how you feel. On saying all that I would suggest some form of relaxation technique before you take your tablets. I don't want you to feel worse but it is imperative that you take the meds because your RA will soon become more of a problem. One of the things about RA is the speed in which it needs to be treated to avoid further damage. The more you think about your phobia the worse you will feel. Believe me I know how difficult it is but I also know the only way to deal with it is to do whatever it is. It is true that the more you do it the better it will be because your stress levels decrease each time. I really feel for you, my phobia isn't so 'easy' to deal with but you can do this. Put the tablet in your mouth, have a big gulp of water and throw your head back. You can't choke on it, they dissolve very quickly, just taste horrible. I wish you all the best and I believe in you. Love and hugs. x
I’m sure someone else will tell you this, but methotrexate a tiny pill not much larger than a pin head, and it also comes in injectable form. I’ve been on it consistently since I was diagnosed in 2004, although my other meds have changed. I can’t offer any other help because I take several other tablets that are like bullets!
Hiya PAwithRA, welcome. Some good tips, especially the banana one. My m-i-l used to have difficulty swallowing tablets with Parkinson’s, so she used to have to eat a bit of something & then add tablets before she swallowed. She didn't have a fear of them being stuck but just couldn’t get them down, a different problem but may be worth a try.
Another option which may be helpful is if you could be prescribed enteric coated tablets. I've just changed to ec co-codamol (which are a reasonable bullet-shaped size) & the difference is quite surprising & so much easier to get down.
I hope some of the suggestions left by us help. You'll find your own way of coping I’m sure. We’re always here, someone will recognise whatever concerns you so don't be afraid to ask anything. 😊
Along a similar idea of banana - a smoothie or milkshake help might help! Something thick which means you don't even notice you are swallowing pills. MTX pills are super tiny too. I echo what everyone else says, CBT therapy may help here in the long term or you might get on better with injections. Good luck and make sure to reach out to others in the same boat, it's a scary time but there is a really supportive community waiting to help you. X
Hey, welcome to our club.I'm delighted your not sore at the minute. I've been in the club five years and have had very few pain free days.
Taking medication at the beginning is crap, you have your reasons to not take tablets and combine that with denial that you are in the club and the fact that currently you are well I can fully understand why you would consider not taking them.
However, this is a marathon not a sprint, you need to accept it's happening, enjoy this time of being pain free and speak to some professionals about how to manage.
You are not going to be able to effectively manage your condition without tablets somewhere along the line and whilst the side effects aren't great the damage to your body by the RA is worse. This is what you need to keep on mind.
If you have bad side effects with any of the meds you can take other ones but there is a limited pool of effective treatments and you don't want to restrict that further.
I get the sense that you are a positive person and I firmly believe we can all do things when we really try...you can take tablets....just need to work out how.
Good luck.
As others say, most MTX tablets are tiny. I have had a couple of manufacturers who supply larger ones though. So I would speak to your pharmacist, to ensure he issues the tiny ones. They are about 1-2mm in diameter. It does come in oral solution, but costs around £112 for about 8 doses if your on 15mg, so you would probably struggle to get it approved, but injections are an option. . Hyroxychlooquine is only available in tablet form. It’s also important to realise that RA doesn’t just affect your joints, but can cause issues with your heart and lungs due to the uncontrolled inflammation. So even if pain isn’t an issue, damage could potentially be continuing without meds to suppress it.
I’ve taken MTX for 6yr, I get no side effects, other than my hair is slightly thinner. I take it with my evening meal so that I sleep through any potential fatigue. I actually get anxious if I have to miss a dose, as my pains quickly intensify. I also inject a biologic weekly. I have AS rather than RA, but they are fairly similar. Unfortunately I went for years undiagnosed so have both heart and lung damage from the years of uncontrolled inflammation. My pains were always put down to my physical job as a trauma nurse. My ribs are fused, my lungs can’t inflate fully, so pockets of lung have collapsed, known as Atelectasis. So I get breathless easily, and so many times wish I’d been diagnosed earlier.
Is it maybe worth considering CBT or hypnosis, it is a wonderful drug at controlling symptoms. I wish you well and hope you find a solution. 🤗
Well as my dad used to say no such word as can’t do lol, none of us want to pop or inject medication but we do it because we are trying to help our condition and I am bossy lol welcome to the club it does make a big difference.
Thank you everyone for your very supportive and helpful comments. Last week I wanted to stop the train and get off but now I have got my head around it all a bit more I just need to put my big girl pants on deal with it.
I understand your fear. I’m newly diagnosed too and I didn’t even take tablets for a headache never mind a life long AI disease! I have emetophobia so scared to literally take anything. I’m now on two meds (hydroxy and sulfasalazine) they wanted me on methotrexate but I said I didn’t want that as if I fell pregnant I’d have to abort.
Good luck xx
A phobia is difficult and you've had some great ideas so I'd just add it is available in an injectable form but it might be a good idea to get some CBT to get over your fear as there are many RA medications and a huge amount are tablets. Might be a good idea to try to get over the phobia now before you actually must take a pill. The risk of joint damage, clots, lung damage etc etc are very real so the risk of not taking a medication could be a huge mistake. So please talk to someone about your fear which I'd add is entirely understandable.
Sorry to hear about your recent diagnosis. I sympathise with you and I see that it’s a real problem as my daughter who has juvenile arthritis really had a tablet phobia too. As she was only a child, and I don’t know if this was why, but I managed to get her sessions with CAHMS for exposure therapy. For those that have never heard of it, they gradually expose you session by session to the object/situation that you’re avoidant to. I was very sceptical as my daughter could not even look at a packet of headache tablets on the kitchen counter! She had about 6 sessions and now, although she doesn’t enjoy taking tablets, she can swallow even the larger powdery ones!! She’s on humeria injections now so it doesn’t apply but it got her through a very difficult and dark period. I’m not sure of your financial situation but if you can get yourself a few sessions of this exposure therapy I would recommend giving it a try! Good luck sending hugs x
Hi 😊 Welcome to the madhouse 🤪Things will settle - try not to worry too much because it definitely helps to try and stay calm. Maybe try hypnosis, a cognitive behaviour advisor or something similar 🤷🏻♀️
The methotrexate are a tiny yellow tablet, no bigger than your contraceptive pill. And for me, it's worth it's weight in gold. Just think of being pain free and get that tablet down! I think the hydroxy was a small pill too. RA pain gets horrendous, it can literally make you not want to go on living with it, it gets so bad that you can think of nothing else and can't move. Please, follow what the RA team say and just take the meds, if necessary, crush them and then swallow them with water.
Welcome you have done well to be seen in such a short time as it it was 9 month for me , saying that I am pleased you have been seen , I have always had a pro swallowing tablets , methotrexate are very tiny , it sounds as if you are panicking before you take it , what I did always make sure you have eaten before you take tablet , other advice is take tablet with a yorgurt on a spoon , or tablet then spoon of yogurt, make sure you have plenty of water, good luck 🤞
You are correct that I am panicking before I even look at the tablet. I have started to realise that fear of doing something is way worse than when you actually do the thing you don't want to do, if that makes sense. I have never been a sickly person and the last time I was ill and had to visit the GP was 2009 so have never needed to take tablets for anything. I also think it's a control thing, someone is telling me I have to take meds and my mind is saying 'you can't make me do that'. I keep telling myself that I have the option to say no if I feel that strongly about it so ultimately I am in control. I have felt the restriction on my hands that this condition has caused already and don't want to risk further damage so I would be a fool to myself to resist any help that is offered to me. I will need to buy yoghurt now so thanks for that tip 😊.
Pop to NRAS website and download or request hard copies of booklets ‘new 2 RA’ and the one on medications. nras.org.uk/publications/
Hello PAwithRA, I can see you have had lots of great replies and tips to help you, and glad you have found this site or were you recommended by your Rheumatology Team to join? I wonder did they also mention us nras.org.uk? We have a wealth of information and support available for you, you can order our free newly diagnosed pack via our shop nras.org.uk/product/newly-d... You can also ask your Rheumatology Team to refer you to our New2RA Right Start Service, the sooner they can refer you the better and they can do it online and it takes 2 minutes. We also have a helpline if you want to talk to one of our trained information and support team you can call on 08002987650 there are also then other services we can refer you to for support. Finally you can sign up to our free E-News (bottom of our home page) and when you are ready as it can all be a bit overwhelming with so much information overload in the early days, but we would love to welcome you as a Member of NRAS. nras.org.uk/become-a-member take care
I found this site through a Google search and I have already had a look at the NRAS website and had a read through of the info on there. The new to RA pack is currently out of stock so I am not able to order that right now although the hospital have already sent me through a load of info to read through. I will see if the team will do a referral when I speak to them next.
I was diagnosed with Psa, RA & sjorens, and was initially on 25mg of methotrexate tablets, and now on 15mg injection, which is the route you can go to avoid pills. I've always been on methotrexate only and pred/celebrex occasionally to manage flare ups. I was also diagnosed with osteoporosis and chose to try supplements instead of meds. I'm anti meds, and try to use the minimum effective dose together with diet and exercise. Maybe you could ask your doc to try methotrexate injection only first, and see how that works. If going through a flare he could add Prednisone temporary with the methotrexate, which has always helped manage the flare. The pills are very small. In fact studies showed they work well together for people newly diagnosed, and once methotrexate kicks in you could get off Prednisone. Just a suggestion. I was diagnosed since 2006, and had to manage some severe flare ups over the years. I respect docs, but I also think we know our bodies and should learn what works. I believe in trying minimum meds first. I've also tried stopping methotrexate a few times but had to get back on. My doc suggested a biologic but don't really want to go that route. Hope this helps you make the right decision.
I think I know that I will have to take meds initially as I don't want further damage to my hands. It has made me feel so much better now that everyone has told me how small the tablets are. I felt the consultant wasn't really up for a discussion about the meds and my fears and I am hopeful that the nursing team will have more time to talk this through with me and discuss options. The steroid injection that I had seems to have sorted out the main issues so far so maybe I won't need further steroids. Like yourself I would prefer to do minimum meds if possible so will have to wait and see how I get on.
Double whammy: osteoarthritis with my RA.
Advice on holding my head up please ....
Newly diagnosed and first post...
Newly diagnosed new mum please help
Newly diagnosed ... A bit down really
