newly diagnosed with rheumatoid arthritis

stellabean

Hi everyone I was diagnosed a couple of weeks ago, I had no opportunity to ask any questions but was given a couple of leaflets to read and told a nurse would ring me at some point. It was all a bit of a rush and before I could get my breath back I was given an IM steroid injection and sent on my way. I feel as if it hasn't really happened at all. I saw the consultant at the beginning of September and have just received an appointment for the nurse at the beginning of November. Is it always like this? Sue

[Deleted User]

Hello stellabean

Welcome to Versus Arthritis, you've come to join us at a new an exciting time as we have recently merged Arthritis Care and Arthritis Research into one charity supporting arthritis.

I've found a link that may help you re pain management, you will find that we have many forum users who will come along trying to support to support you in the various topics. Versus Arthritis Helpline number is at the top of the page.

https://www.arthritisresearchuk.org/system/search-results.aspx?keywords=Rheumatoid+arthritis

Good luck and enjoy the forum

John

dreamdaisy

Hello, it's nice to meet you and I am sorry you have had to find us. Were you diagnosed by a GP or rheumatologist? I am one of the lucky ones who has dealings with both, the GP ignores my psoriatic arthritis (PsA) and my rheumatologist ignores my osteo-arthritis.

I have had a number of intra-muscular steroid injections which achieved very little but after twenty-two years of it I am used to meds not doing what they do for others. I was born with auto-immune troubles so the PsA was no surprise unlike the osteo. I hope you find the forum to be of interest,, Don;the be afraid to ask any questions you might have, we all get it because we've all got it. DD

stickywicket

Hello Sue and welcome from me too.

I wonder if you could be a bit more explicit about what you mean when you ask “Is it always like this?” I've read your post several times and I'm wondering 'Like what?' You seem to have been diagnosed quite quickly. That, actually, isn't usual. I was diagnosed quickly too but some people, whose symptoms and blood tests don't tick all the right boxes, can be months or even years without a clear diagnosis.

Being diagnosed quickly is good as it means you can soon start taking Disease Modifying Anti-Rheumatic Drugs (DMARDS) which help to keep the disease in check and the sooner we get on them the better the outcome. Perhaps the leaflets were about these.

Perhaps things weren't explained very clearly. If you've been told, by a rheumatologist, that you do have RA then the steroid jab is probably to ease the pain until you can start the DMARDS. You'll probably need a chest x-ray first to ensure you've no problems in that area.

It's quite normal for us to see a rheumatologist at one visit and a specially trained rheumatology nurse at the next. The nurse will be able to answer any questions you have so have a good think beeforehand. And please ask away if you have more questions.

stellabean

I was diagnosed by the rheumatologist I have been seeing my GP for a long time with joint problems but have been either told "I don't know why that is" or "give it time". My feet have been very painful for years and there are some distorted joints but I had given up mentioning them to the GP. It has been frustrating getting to be referred as I already have osteoarthritis, crohns , and 3 damaged discs in my neck I have been told to expect to be in pain. It was at the beginning of the year when my hands became swollen I went to see the GP who was not sure what was wrong again but did refer me. I half expected the consultant to say there was nothing wrong with me I was surprised when he just looked at my joints and said it was rheumatiod arthritis, they have been enlarged for so long I had come to think of them as normal. It is not having any idea of how this clinic works and how long it is before you are contacted. In the past I was referred to a clinic which lost my notes for over 11 months so I feel happier when I know time scales.Thanks for your replies it is good to have someone to talk to who has been where I am.Sue

frogmorton

Sue welcome to the forum from me it's nice to meet you

I think I get where you are coming from my own clinic is very like that in and out and the first time I went with a jab in my rear end too :oops:

I would imagine they are all different, but with your notes having been lost in the past you are bound to feel anxious.

Hopefully you can talk to the nurse about how it will work at your own clinic in November. Do let us know how it goes.

Best of luck

Toni x

stickywicket

You have a lot on your plate and, yes, we can all expect to be in pain but there is pain and then there is way too much pain, right?

Unfortunately, all hospitals, and even departments, seem to have their own rules re appointments. I liked the old system where I had a little card and my next appointment was written on it before I left. But, I guess, too many patients just failed to turn up which made this very inefficient. Now I get a written letter about two weeks prior to an appointment. It works but I never know when they'll arrive.

dreamdaisy

I remember my first appointment with a rheumatologist, I was told to go away because I did not have an auto-immune inflammatory arthritis: I went on to prove him wrong.

Rheumatology is an unusual department in that it rarely says good bye to its patients because they have a disease that cannot be cured, only controlled. GPs are (believe it or not) improving in recognising the symptoms of an auto-immune inflammatory condition but it is not something that they deal with. When I troubles began back in 1997 my then GP had not one clue which sounds very similar to your experience. At rheumatology I have also had leaflets thrust at me, told to go home and decide which drug I want and to let them know - it's not a satisfactory way to treat people but reflects the increasing pressure the department faces as more and more arrive for treatment with less and less resources.

Once on the auto-immune spectrum it is not unusual to have multiple conditions to manage but sometimes this possibility does not occur to those who we think should know better. GPs know a little about a lot, we need those who know a lot about a little. We on here are not docs but we do know our stuff. DD

stellabean

Hi again everyone I haven't been on here since last time as I had a nasty stomach bug that knocked the stuffing out of me.I did see the nurse on Nov 2nd had my bloods and an x-ray. Despite having crohns that is a bit excitable at the moment ( every morning at 3 am I start with runs) I have to try oral methotrexate with the concession of starting on a half dose and gradually working up. She said I could expect to hear from them and start my treatment on 12th Nov. but as yet have not heard anything or got meds. I have tried the phone number for their advice line but only got an answer machine so I am still none the wiser. The nurse made me an appointment to see the nurse who looks after the patiants on meds for the end of Nov. when I should have been on treatment for 2 weeks. I don't want to have to make extra visits to the hospital it is a 60 mile round trip. I feel like I should be grateful I have been to a clinic but it is hard when nothing is happening.

stellabean

Hi again just had a phone call from the nurse start of treatment delayed until 26th November.

daffy2

It's difficult being in this kind of limbo, especially when initially it looked as if some kind of progress might be happening. The demands on the NHS mean that much has to be limited to managing clinic waiting lists and reducing medical input to what is absolutely necessary, so the niceties of keeping patients informed, answering queries etc(what might be loosely called pastoral care) are expendable in the priority scale. As we often remark it is a tiresome and often upsetting irony that at the times when we feel least able to do so we have to put time and energy into battling with 'the system' to keep things on track and get the help we need.
The link between Crohn's disease and arthritis of various forms is reasonably well established now so you were unlucky that it wasn't considered earlier, but that is the difficulty with the amount of information that GPs are expected to know - it is purely chance a lot of the time whether what the patient presents with is something that might be on the GP radar. On the plus side meth is one of the drugs used for treatment of Crohn's, so starting it for RA might prove beneficial - if not what was intended! However it can't be assumed that the rheumy dept will be thinking about the Crohns nor the GI medics about the RA - you are two separate conditions as far as the system is concerned, so it will be up to you to ask the questions.
I hope your appointment goes ahead and that you start to get the information and treatment you need, but in the meantime there are many old hands on here who have a considerable bank of experience and knowledge between them.

dreamdaisy

I endorse every word, Daffy is so right. When we overlap hospital departments the only communication route we can rely on is ourselves, we cannot expect people to know things about us because it is (or might be) on our notes: in an ideal world one's notes would be read before each appointment but who has the time or inclination for that with a waiting room full of grumbling patients? DD

stellabean

Thanks Daffy and DD I never imagined it would take 12 weeks from seeing the consultant to starting treatment. My frustration has been made worse due to increasing pain and lack of sleep at least I should now start on 27th Nov. so fingers crossed I start to get somewhere because I have adapted to a lot of pain in my life but this extra lot is just a bit too much. Thanks everyone it is good to be able to look on here and find snippets of good advice from those in the know.I'll let you know how things go when I see the nurse again on 10th December( had planned a day out for our 35th anniversary but that is now on hold)

dreamdaisy

Three months is nothing in rheumatology terms, I now routinely go at least a year between appointments with a rheumatology nurse: when rheumatology finally accepted me as one of theirs I was seen once every three months, alternating between my consultant and a rheumatology nurse. I last saw my consultant in 2015. DD

BlueGiraffe

Hello all
I have recently been diagnosed with RA. I had my first rheumatology appointment on 02/11/18, where the doctor did a full exam and explained the treatment plan. I had a chest, hand and feet x-ray and blood tests (including anti-ccp which mysteriously got missed being done after I got bled for tests for the initial diagnosis). I also signed up as a research participant and last week had bits of my inflamed synovium in my very swollen left knee sampled. They had to drain the fluid before taking sample so not to overload the knee as they had to inject a local anaesthetic inside the knee too. Unfortunately the knee was still swollen after the procedure but it did feel a little lighter.

Anyway I have started methotrexate and also have hydroxychloroquine twice daily. with folic acid and vitamin d tablets.

I have been finding it hard as I have had a chronic illness before and also I had only just got into running did my first and last park run on Harry and Meghan's wedding day as my knee just got too swollen.
Sorry for the long post. I am trying to give myself tasks to help with this condition for example I have spoken to my occupational health to get some physiotherapy. I try and do the exercises recommended on the arthritis website which I try and do daily but after work all I want to do is sleep!
I'm trying to think positively

[Deleted User]

Hi BlueGiraffe and welcome to the Versus Arthritis forums.

I'm sorry to hear of your diagnosis for RA - but you have come to exactly the right place to ask for help and support. Your doctor sounds really good

If you need any additional information on your prescribed DMARDS then you can find that here: https://www.versusarthritis.org/about-arthritis/treatments/drugs/hydroxychloroquine/

Interesting that you have signed up as a research subject. It would be great if you came back to recount your experiences as it goes along as I'm sure others would be interested to read about them.

I look forward to reading your posts on the forums.

Best wishes
Brynmor

BlueGiraffe

Thanks Brynmor
Yes I will keep you posted on the research.
Thanks for the link. This forum and the website have been useful.

stickywicket

Hello and welcome from me too I love your username. I've never actually met a blue giraffe but I'd love to

I, too, take meth(otrexate) and hydroxy(chloroquine) and they work really well for me. I hope they do for you too but it's early days yet. It might take a few weeks. The folic acid helps us not to get side effects from the meth. I have calcium in with my Vit D but I'm much older than you.

Please don't apologise. Yours isn't a long post by our standards and it's much better if you tell us more as it helps us to understand.

I think you seem to be dealing with things really well. Don't push the exercises too much at this stage. I've always been told that, when flaring, I should only do the range of movement exercises not the strengthenng ones. The time for the latter is once things are picking up a bit. Of course you will be exhausted right now. It must be very hard trying to cope with all this plus work.

I think you ARE being positive. That will help. And, if you've any questions, we're here to help too.

dreamdaisy

Hello, your post brought back memories of having my knees drained (large amount of synovial fluid were involved) then injected with steroid: it never worked as a treatment but never mind. I have psoriatic arthritis which began back in 1997 but was not officially diagnosed until 2006 because it did not begin in the right place and my skin was OK. The lack of diagnosis did not affect the meds I tried because they are used for all kinds of auto-immune inflammatory arthritis. I also have osteoarthritis.

I'm not sure how many people will spot your post as it's added to an old thread but I hope you find the forum to be of interest. I've been nursing a sick Spouse and am now showing signs of what he had (being immuno-suppressed is challenging at times) and I am very tired so will go now, I'll try to reply better when I am back to my usual energy level of moderately grotty! DD

BlueGiraffe

Thanks for your replies!
Today I have noticed what I think might be a nodule on my right forefinger
This middle joint of this finger started stiffening almost soon after my knee swelled up.
Are nodules permanent or do they disappear? Do they cause damage?
It is rather small and almost looks like a pimple.

And I think I maybe having a side effect from the hypochloroquine. I will mention both things when I call the nurse tomorrow. Just wondered if anyone else had a side effect.

dreamdaisy

As far as I am aware my flavour of auto-immune arthritis does not cause nodules (I say that because I don't have any) but people I know with RA nodules have had them for years.

I have had some side-effects from medications - hin order if occurrence heavy bruising in the early days of sulphasalazine, a rash with methotrexate, blinding headaches with leflunomide, growing excess body hair with cyclosporine and an anti-TNF tried to explode my liver. The most bothersome were the headaches, the others caused no physical discomfort whatsoever so I wasn't bothered or upset by them.

Untreated RA is far worse in what it does to the body than taking the meds and dealing with everything they may bring in their wake. When I first went to rheumatology the joint deformities were horrendous, now they are non-existent in the recently diagnosed. People fear the meds but they are not the enemy. DD

stellabean

Hi everyone, sorry it has taken me time to get back, I started treatment on 26th and have had 3 doses of methotrexate so far
saw the rheumatology nurse yesterday after some confusion with cancelled appointments and ones not made. The confusion goes on as she was under the impression I am on 10mg of folic acid but I am only on 5mg. As far now my crohns seems to be coping with the meds my mouth and throat are sore but I often suffer with ulcers anyway. I still can't quite get my head around the fact that I have this condition and there are times when my daughter seems to be either in denial or just ignoring it in the hope it goes away. She even accused me of making more of it as an excuse for not wanting to go shopping with her,
if I had enough energy I would have had a go at her but I didn't I just walked out of the kitchen with the reply "think what you like I don't care" she apologised later but things should not be said sometimes.Thanks for your everyone

dreamdaisy

Arthritis not only affects just, it affects those around us too. I know that my husband, even now, feels frustrated that there is nothing he can do: it's far harder to be on the outside looking in than on the inside looking out. Obviously I do not know your daughter or how your relationship works in a day-to-day basis but she could be feeling apprehensive, frightened, worries and helpless.

Two articles on the web which might be of interest are 'There's a Gorilla in my House' and 'The Spoon Theory' - both explain in clear and concise ways the difficulties of living with ongoing health conditions. One of the particular problems we face, especially in the summer, is that we can look well but be poorly while on other occasions we look dreadful but are actually quite well. DD

stellabean

Thanks DD my daughter is used to me having health problems but up till now I have managed to deal with them and have adapted to them.But it is early days since my diagnosis and she seems unable to accept that I have no control over how RA affects me. I feel guilty enough that I can't fight it's limitations on me and that I can't stop falling asleep when ever I sit down too long but I am trying my best. I don't want to be like this but I have no choice she isn't some little kid and at 34 should be able to understand I am not like this for the fun of it.

dreamdaisy

People do not understand how a disease can affect someone until they have their own experience of it - the human qualities of compassion and empathy are required but are hard to master. The general misconceptions of arthritis run deep in the general populace (and still some GPs), I know I thought the same about it until I began (viz. it comes in two kinds, you have either one or the other and it only affects the elderly). Wrong, wrong and wrong again.

Your daughter is old enough to respond more kindly. An auto-immune arthritis, which is not under proper control, can cause intense and immense fatigue, another thing which is not generally known. Even us old hands can be taken by surprise by our arthritis, sometimes we seriously overdo things and have no payback, other times we do nothing and are wiped out: auto-immune arthritis is a cunning, devious and sly beast. DD

stellabean

Thanks DD your right about people not knowing enough about arthritis some think if you have one type you can't have the other. Things can be so hard just dealing with the affects of the disease with out having to use up energy explaining yourself. I must admit the GP's need drastic training I know they can't be experts in all things but to tell someone with swollen and deformed joints "I don't know why that is" or give it time and refuse to investigate as they don't think it is warranted they are in need of education.I have to admit to having a history of being misdiagnosed on several occasions I had eclampsia when pregnant my brother ( a Vet) recognised it the hospital only when I fitted and was in a coma,my "nervous stomach" 10 years later was crohns, a minor neck injury -3 damaged discs, spinal pain degeration not my mind making it up. Not all of these happened with our present GP but now we would have to move from this rural area to get a different GP so I will have to try to educate them little by little in the 10 mins you are allowed. They close the surgeries for 2 days a month for staff training I wish they had a suggestion box for subjects that I could use! Well it is bake the last of the Christmas cakes today presents for friends and neighbours.Take care and thanks for your reply