Hi there, hope everyone's ok? Just a update, I had my first rheamy appointment on 1st June, as been poorly for a few years now, pain, chronic fatigue, weight loss, and doc sent my bloods off and all came back positive, rf, ccp ,esr, and few others my rf was 47, and ccp was 123, doc, put me on steroids so hid a lot of my symptoms when I went to f2f with rheamy, xray on hands and feet revealed mild oa, on the joints both, hands and feet, last 3 weeks I've been in agony when I wake, I have to pull myself up by grabbing my mattress, pain in neck. Shoulders,back, hips knees, ankles, feet collarbone, they have also found fluid round my heart, I've been left like this till my ultrasound scan of my hands 2 weeks ago, only naproxen, and pregablin for my fibro, they wanted to see me raw before they diagnosed me which I understand, on fri nurse rung and said off the record its deffo ra, the scans said tenosynovitis and corrosive (does anyone no what that means) I've got a telephone consultation on 30th July with a specialist nurse and starting me on methotrexate, I'm in agony all over its all happened so quickly I only found out on fri and cant belive how I was told, is this how it is for everyone? I've started to take some steroids only 5mg that I had left in cupboard and already feel the pain easing, sorry for long post think I'm a bit dazed by it all jo x
Well finally got my diagnosis on fri : Hi there, hope... - NRAS
Well finally got my diagnosis on fri
Not a good idea to take steroids you had left in your cupboard…might mess up the drugs your Rheumatologist is thinking of prescribing for you.
Now you have been diagnosed …to get your RA under control it really works best to stick with the drugs you are prescribed….even so called “health supplements” are often contraindicated unless your rheumy nurse OKs them.
You really will get things under control faster if you stick to what the doctor prescribes.
Hope the Methotrexate works well for you…I had many good years on it.
Hi agedcrone, I was in so much pain I couldn't move, swellings and stiffness, I told the nurse on fri I will take just one 5mg tablet I live on my own and couldn't move, nurse phoned me today, I told her what I'd taken she didn't tell me to stop, she's phoning again tmrw, do you think I should stop them? Thanks for reply
I can’t advise what meds you can take…I was diagnosed over 20 years ago & thankfully I reacted very badly to Prednisolone…so I was never tempted to take it….I too lived alone & I was grateful that I did, because it meant I could deal with the pain without well meaning folk trying to “help”.Once you get started on Mtx ask your rheumy to give you some different painkillers so you don’t get to rely on the Pred.
It will take a few months…but you will get through these first few months……although at the time you think you never will.
If your nurse is contacting you again tomorrow ask about prednisolone. It is not unusual to be given a short course to see you over until the meds kick in. It could be 12 weeks before you feel the benefits of MTX, you cannot live in such pain for that length of time. But best not to self medicate.I take prednisolone everyday with no side effects I could not manage without it.
Thankyou Mmrr, I will when she rings today🙂
Hello, I’m sorry you’ve been in so much pain. I have done the same myself with Pred, only because my GP prescribed it when I first had problems (after all the bloods and X-ray etc had come back from the hospital), she called the rheumatology department and spoke to a Consultant who said 100% RA, give her steroids too tide her over), my appointment came back as a 4 month wait. I too live alone and need to work, so the steroids helped me do that until I actually had the f2f appointment. When I did she berated me as she wanted to see me at my worst 🤷♀️I know it masks the symptoms, but sometimes you just want a bit of relief. In my case I pointed out that it was unreasonable to leave me in pain for 4 bloody months, and she’d have to take my GP’s word for it that my joints were very swollen. So don’t beat yourself up about taking Pred.
I hope you get yourself sorted soon. 🙏
X
Hi chockyuk, that is exactly what has happened to me, been off work 8 weeks already.. I really need to get back, I hate being at home but can't move much at moment, hope your feeling better? Work are being really good, but I've got a mortgage, and my money has gone down to ssp now. Really wish I could speed things up xx
Bless you, it’s so difficult, trust me I know! At the moment I have a rotator cuff shoulder injury, and to top it all off, after 3 years, mostly in remission, my RA has decided to come out in sympathy with my shoulder 😂. This morning extreme pain in my hips, knees, feet etc, I could hardly get out of bed. Luckily enough I work for a school, so I’m on 6 weeks hols. I called the nurse helpline, not sure what they will do, as the Consultant told me last time both nurses had resigned with stress and they only have Admin people manning the answerphone now and relaying back to the doctors!Feel free to PM me if you like, as I definitely know what you’re going through.
Stay strong 💪
Where are you from chockyuk? When the nurse rung me yest she told me she was run off her feet, lots on annual leave... the consultant has been off also 🙄 so sounds like it's the same everywhere... also there's diffrent nurses on so mis_ communication I feel so sorry for the NHS feels like they just can't cope with the work load I work in pharmacy (boots ) a pharmacy advisor dispenser my colleagues are run off there feet also... I hope you get your call back and given some relief bless you xx
I don't no how to private mesg not done it before 😂
Haha, me neither!I’m from Herts, Watford.
It’s very sad the NHS is going through this, having no specialist nurses over all their 3 sites (Hemel and St Albans) isn’t good for the patients.
😔
Wow that's not good at all, I'm east midlands nottingham
Hi Mmrr, I will mention it again tmrw when she calls, it's even given me some energy back, thanks for reply
I've been on prednisolone a long time, tapering off at the moment.Like all meds it can have side effects, personally I'm good on it, but I could not tolerate many, and I mean many, routine RA drugs that others do well on.
So...don't be put off, a course of prednisolone for a few weeks could be your saviour, help get a quality of life back.
Remember hot inflammed joints are not good either....you do not know what damage is being done whilst unmedicated.
Do what is best for you, under guidance from rheumatology. Prednisolone is just one of an army of meds, all with benefits and drawbacks.
Thankyou xx
Good you’ve got a diagnosis now you can move forward. Talk about pain relief with your nurse as these medications take at least 3months to work.x
Thankyou j1707 I will do x
Wow ! huge range of emotions for you to handle, so scary and constant pain can bring shadow over your life but this is a very informative site - I don’t contribute much but read regularly and find the information and chats very useful.- take a deep breath and try to take one day at a time and accept a huge hug of support from me.I also felt the same as you and had a similar experience when given my diagnosis but as time as passed I can say that the rheumy team are there to support you with all your concerns so please use them. I struggled at first because all I could do was cry down the phone (which wasn’t very helpful! Haha) but I’m calmer now and can see things differently.I’m taking methotrexate ( I started on a low dose and increased slowly over a few weeks just to monitor side effects etc) now on 15mgs per week. From what I understand, it’s not a drug that suits everyone but if your body can tolerate it can help. I certainly can feel the benefit from this drug. Your rheumy team or consultant can suggest other meds if methotrexate doesn’t help.
I also take steroids which help with pain relief, I have been reducing my dose over the past few months and currently take 2mgs per day.
My advice is to be as open as possible to your consultant, rheumy team and GP at all times and don’t be worried about ask questions.
Please take care, you finally have a diagnosis, the tests you have had suggest that your consultant and rheumy team are thorough - I’m sure with the right treatment there will be good times ahead for you.
Sending warm and kindest wishes to you.
What a brilliant reply. I couldn’t of said it any better.
Same as Caza great reply keep talking dont stay silent to get it under control but it will take time and a hell of a lot of patience!x
Thankyou feelingpoorly, glad you have it under control and your feeling ok, thanks for the post 🙂 xx
It's good that you finally have a diagnosis.Your experience resonates with me as it was almost a year from the onset of the first symptoms that I was finally diagnosed with RA (more info about my experiences on my profile page).Like Aged Crone said, there were times when I thought things were never going to get better- but they did.I was put on Sulfasalazine at first, then methotrexate was added later. When it started working it made a big difference.
At first I was relieved to get a diagnosis, a name for what was making me so ill , knowing that something could be done to help me. Although it did take me a while to come to terms with the situation. But hey- things have improved so much for me and I can do most of the things I used to.
Sending you big hugs and warm wishes 💕xx
Hi madbunny, so glad to hear that things are under control.. gives me hope xx
It took time , but I got there in the end. I hope you will too xx
I’ve just spotted youmention. “ tenosynovitis”. I have had tenosynovitis mainly in my right arm for donkeys years !!!! It’s where the tendons have dried out in the sheaf with wear and tear . You get to learn your limitations with what you can do and what you can’t do , it’s usually a horrible dull ache in intensity going up and down the whole limb . ( just thought I’d answer that bit of your post ). 😊
That’s interesting. I had an ultrasound only yesterday for a suspected rotator cuff tear. But chap said just very inflamed, no tear, it’s bloody painful 😖 I’d never heard of tensynovitis.
Me neither I've googled it ( shouldn't of tho) 🤣
Ok , if you ask a physiotherapist about tenosynovitis or your GP they should explain that our ligaments are covered with the synovial fluid in the sheath , what happens is the synovial fluid dries up in the sheath which means our tendons will then start to grind . I’ve had this trouble since I was 20 years old I am 69 tomorrow !!’ So I have had this on and off most of my life. What you have to do is refrain from whatever it is your doing that is wearing the fluid to be dry. ( tried to explain best I could). It’s got a more modern name of. RSI. I’m other words Repetitive Strain Injury. Good luck , hope I’ve helped a bit.
Ahhh I see I understand now 😀 thankyou, and happy birthday 🎂 for tmrw
Thanks although at 69 yrs I’m not too happy with that!!!!Good luck to you and hope your joints settle down very soon. I’ve learnt to live with the discomfort of arthritic joints . I try to walk my poodles to keep up mobility best I can .
Thankyou rabbits65 yes that's what it's like moving all around my body. X
Oh no! Please don't take any drugs that aren't prescribed. I know you are desperate but you might be prescribed other things that would react. You must do what you are told to do and take what is prescribed if you are going to get some respite from your pain and problems. I know it is hard but please wait.
Hi thinksunshine, I'm on naproxen, and pregablin, paracetamol, it's not touching it at moment, I can't take codeine Makes me sick, hope your ok thanks for reply
Hi Sheila, the nurse does no I'm taking prednisolone as of yest, it only worked for one day, back in pain again today, thanks for post
Good afternoon. 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.
Thankyou Helen
Hi jjih
So glad you are now beginning to get proper diagnoses and treatment. Hang in as it does take three or four months for Methotrexate to work. I had to taper off steroids to see if it was working and during that interval I felt like death warmed up… very very unwell. Typical of active uncontrolled RA. You can always have a moan here. 💐
Hi charisma, thanks for the information.. I no the roads not going to be an easy ride, as the nurse says it's really active at the moment, she says I can keep taking the prednisolone (thank god) and she actually told be to go on the nrsa website... so just praying I can get back to my my old self again 🙏
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