Although this is my first post I have been reading here for the last couple of months.
I was diagnosed with RA just a few months ago, been on prednisolone since August and on Methotrexate since October, The prednisolone initially helped reduce the pain when on 20mg a day but not so much now on 5mg a day, the methotrexate has not seemed to help very much at all. I am still in pain and struggling.
RA is all very new to me and I really don't know much about what to expect, As I was diagnosed during this pandemic I feel that I have fallen through the net regarding 'normal' treatment plan and care. I have not been given details of who to contact for help.
I also have hypothyroidism and Hashimotos thyroiditis.
So sorry, it sounds like I am having a moan.
Written by
msp66
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Hello and welcome. I’m pleased to hear you have been started on treatment for your RA and it’s a shame the methotrexate is not yet working fully for you. I think you may need to give it a little longer as I’ve seen some say it can take 6 months.
I think you should be having regular blood tests whilst on MTX and the results would show, amongst other things, whether your inflammation levels are coming down.
Most of us either have a patient advice and information line telephone number to call or a number for a specialist nurse. If you have neither I suggest you phone your hospital’s rheumatology department and ask for a contact number so you can get advice. If that’s not forthcoming email or phone your consultant’s secretary and ask for help.
Thank you for your reply.I did have weekly, now monthly blood tests, my CRP and ESR came down slightly in December but increased again in January I have another blood test booked for tomorrow.
I sent an email to the rheumatology department about a month ago but got no response so I will try to phone the department again to ask for a contact number. last time I called and left a message on their answerphone I also got no response. I will just have to keep trying.
I know the NHS is extremely busy right now with covid patients who are a much greater priority than me which makes me feel that I shouldn't be troubling them with my problems.
Welcome! This forum is absolutely the place for a moan 😂 You should read my recent posts...hahah!!
Sorry to hear about your diagnosis and that because of COVID your treatment plan is maybe not what it should be.
Do you have any particular questions you’d like answered? Any areas you need help/advice on? Ask away! We’ve all been where you are and are here to support you x
Hi LoneEra, This seems like a safe and friendly place to vent.This disease is so frustrating and came on so suddenly, one day I was relatively normal the next my hands didn't work properly, The pain, weakness and inability to pick things up make me feel useless and I have lost count how many cups of coffee I have spilled all over myself.
Every joint in my body seems to be affected, but not all to the same degree or necessarily all at the same time.
I hear you. Frustrating is the word. And at first it takes a long time to adapt to the things that you can now do (and not do).
I won’t lie to you, there are going to be tough times. And that’s ok - you should get angry or cry when you need to. Don’t bottle it up.
But there will be good times too. And often, some more or less normal days. Hopefully you’ll find a treatment that works for you (maybe the MTX, maybe something else).
The disease will also give you a different outlook on life. I used it as a kick up the bum to start my own freelance writing business so I could work from home.
That led to many new opportunities for me. And loads more time to hang out with my dog 🐶 Silver linings and all that.
oh yes, there have been a few tears.That's great that you have started you own freelance writing business, I wish you every success.
I am very lucky in that I already work from home and spend lots of time with my 2 dogs.
I guess I need to learn to be more patient and wait for the meds to work, but also try to speak to specialist about anything else I can do to help.
It is tough waiting for the meds to kick in how about calling your Gp to see if upping your steroids to 10mg for example whilst having a bad week etc. My RA a d GP clinic have given me a sort myself out route ie bad week up steroids and when ready start tapering. This way not on the phone to them all the time.
Ok big thing are you resting enough? Rest is crucial in the beginning and one I struggled with BIG time.
Finally it could be you need to go higher on MTX but again your RA Clinic can assess over the phone. Mine have an email and call system but tend to sort things via email which is great too.
MTX is a great drug I unfortunately am one who suffers serious side effects so still looking for the one that works! However don’t go for too long without chatting to someone at RA clinic even if you feel you are calling regularly to get someone to call back. They will get there in the end.
I hope you find the right meds for you soon.I too struggle with rest however pain in both hands and feet tend to force me to rest, my normal routine has gone completely out the window.
I was always so independent and hate asking for help, now I am forever asking my poor husband to open bottles, jars, cans etc for me.
We are due to move next month from a house in Bedford to a bungalow in Norfolk, maybe I will have more luck when I get there, I know me knees will appreciate no stairs to climb.
I am Norfolk Lincs based so hoping the bungalow helps, its hard I know went from fiercely independent to needing so much help etc but I now choose which battles to fight! Housework got dropped quite quickly for some reason ...............
I must admit I now do a lot less housework but I hate it on the days I can't do anything and it starts to look messy and grubby. I try to do a little bit each day to keep on top of it.
Once was house proud 🥲 now have no choice but to live with dusty surfaces and manky bathroom. Now getting back on my feet after 3 years I’m taking it slowly but the urge to have a good spring clean is killing me but I know I will be bad if I do 🥺
Hello and welcome. You are in the right place to have a moan. There will always somebody who's had a similar experience and relate to you. As you are still relatively new to RA my advice is to learn as much as you can about this illness. NRAS is an excellent reliable source of information about everything to do with RA. I found dealing with this easier the more I knew. It also helped me when talking to my care team. You can also find an app called "MyArthitis" by Ampersand which I find a very useful tool. In my experience my contribution in dealing with RA was as important as the drugs. Good luck and big gentle hugs. Stay in touch, please.
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Hi I am posting for the first time looking for advice/reassurance
First Post!
Hi everyone, new here.
First Post
