It’s another I feel sorry for myself post . I’m in top dose methotrexate and just been out upto 6 tablets sulphasalazine a day well 5 this week and then onto 6 next week. Struggling still with stiffness for quite a lot hours during day and uncomfortable most of the time with flaring in hands shoulders and wrists and feet . On steroids now for 6 weeks which are not great to take and being put forward for biologic humira I believe and it all petrifies me . I’m not good with needles so filling me with dread.
I have been on these meds since last June and dose has slowly gone up , I just thought st the beginning it would all be ok . Like I said last time don’t know what’s normal or what’s not . I feel like my life is ruined and RA absorbs my thoughts all the time x. Just feeling sorry myself . How do you all cope . Thanks for reading x
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Teddyboy17
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I hate reading posts like this as I get how you feel and you were probably told get these meds in you and get your life back as your first few consultations
For some of us it can take a long long time to find the balance of medication and the body acceptance of it all and your mindset. It took me almost 4 yrs and now too many steroids have reached and ruined the body so it’s a learning curve all the time.
I would have a chat to your RA team, a call to NRAS for any ideas on how to tackle any of the big issues and even for your mental space a self referral to The Wren Project to have some sessions to sort mental space as well.
It is a long game RA so find things you love doing too and then tackle the not so good to try and find some even keel. Good luck and big hugs 🥰
. I think it’s the time it takes to all work andnif it’s going to work and life is ticking by so quickly .
I have spoken to wren project but I felt like I was going round in circles with what I was saying and not helping me. I’m looking at other counselling and speaking to NRAS .
I don’t want to keep taking g steroids but they help a little but really don’t want to cause more issues either so it’s Difficult .
I need a way of accepting it all . I loved gym and Zumba and haven’t been now since last March . I am plodding on each day absorbed with it all .
Can you do more gentle exercise pilates or those via versus arthritis they have on line chi mae sessions seated help you mentally too try and do what relaxs you a warm bath if it helps
It is a really hard adjustment and feels so devastating when a medication doesn't have the positive effect you're desperate for. Deeb1764 has already given great advice, but I'll just add that the injections are really not as bad or as daunting as they sound. I have had the injector pens for Methotrexate for about 7 years now and just started with Amgevita too. They'll give you training to help you feel confident and comfortable with what to do and it will feel like second nature after a surprisingly short amount of time. I was also pretty terrified about injecting initially, but it just feels normal now and I barely think about it.
it’s hard coming to terms with getting this diagnosis, so don’t beat yourself up over it. And the first year is often the worst so try to believe it will get better soo. All these drugs are so slow acting that it seems interminable!
It took me a year to stabilise, and ended up on max doses of MTX, sulpha and hydroxy - but went into remission! The drugs can work, so keep hoping.
After 8 years of remission things went a bit downhill and I swapped onto biologics. I defy anyone to be more terrified of needles than I was, and the first weeks were emotionally very difficult. But now I don’t think twice about it, and neither will you
Good luck, keep going, and don’t feel bad about feeling bad. It can be a rollercoaster of ups and downs, but should end up with more ups than downs. Keep telling yourself that you won’t always be like this,
Just to add to above injecting isn’t like getting a normal injection. You don’t even see the needle. It’s all encased. Biologics can be a game changer; try to keep hope. There are lots of drugs available. Took 5 years to find one that worked for me. Hang on in there. Xx
I don't like the pens, don't have control how quickly or slowly it delivers the injections. Am much better with pre filled syringes as you can pause for a couple of deep breaths if it stings.
Hang on in there Teddyboy. It took 18 months of steroids,MTX and Sulphsalazine to get me out of hell, but now I mostly don't think about RA as it doesn't really affect my life.I would recommend that you contact NRAS. They have a peer to peer chat line where you can talk to someone who is living with RA . They are specially trained and I'm sure this would help to alay your worst fears. All the best and keep posting.
I’m so sorry to read this. I too am struggling and wrote a post last week called ‘wading trough treacle’ and was given some good advice on there so it may be worth a read. I agree with you about just how long everything takes and grieve for my old life too. I miss diving in the pool at 7.30am and find now that if I’m even dressed by 9.30am I consider it a good day! But there are success stories on this forum and I have been reading many of them in the last week and they do genuinely give me hope. I hope you and I can post on this forum in the not too distant future saying it was difficult but we have found what works for us too!
The one big thing with RA is to accept you have got it…& accept it is probably not going to go away….. so like all of us, you need to work out your own way of coping with it.
There is no magic switch you can press….unfortunately the drugs we are prescribed work at different speeds for all of us ….you say you have only been on DMards for 6 months….& that your rheumy has slowly been increasing your Mtx up to ?25mg… & that you are being put on Humira shortly? A lot of people on this site would love to say that ….they rarely get to see their Rheumatologist, and when they do, they are not very satisfied with the treatment they receive!
Why don’t you sit down and read some posts on here…. concentrating on those of us who have had RA for a long , long time ? Yes there are some having a very bad time…..which is rotten….but that won’t necessarily be the path you take.
Those of us long term diagnosed have not had our lives ruined. We have wanted to kick the cat a lot …but on the whole we get to do everything everybody who hasn’t got out RA can do …maybe with a few adjustments….and as long as we can get it into our heads, that accepting that although RA probably won’t go away……once we are settled on the medication that suits us…thing do look up…& in time we lead good lives.
But as I am probably well known for repeating myself,…. RA a is a marathon, not a Sprint. you sound as if you have an experienced and knowledgeable Rheumatologist - so you’re on a winner there. Just try to get your head around it and this time next year, I hope you can write saying you are on the right medication & you are beginning to enjoy life again….but you have to accept & believe that…..no pill does it….we have to do it for ourselves.
A piece of advice I was given was 'Take one day at a time'.
I say to myself: 'Today I am going to do one thing that needs to be done. Other people have managed to get through this and so will I.'
Over the many years that I've had this disease it's varied a lot. Sometimes I've managed a near normal life, other times I'm sitting with my feet up looking at the birds in the garden, not able to do anything. Since I've been on the biological treatment adalimumab (Imraldi biosimilar) it became so much better for a while. I'm not doing well currently (I've developed another auto-immune condition, vasculitis) but this too will pass (one way or another!)
Good morning. If you would like support, information or just someone to talk to, our NRAS helpline is open every weekday from 9.30am to 4.30pm nras.org.uk/helpline/ 0800 298 7650. Or have a look at our website nras.org.uk. Kind regards.
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Fed up
Fed up
fed up
Just a rant!!! So fed up. 
