Just been diagnosed

SimonC04

Hi to you all.

w

Was diagnosed about two months ago and still waiting to go onto my long term drug for this currently taking steroids which have been reintroduced since a break of a few weeks . Finding this painful and frustrating not knowing how successful this will be , prior to this I was fit and healthy and it’s put pressure on my relationship as I’m not currently able to walk like I used to and have had to cancel a couple of holidays too.

Just wanted any feedback on how to keep positive early days getting to an upright position was a real struggle and now still is. Now I get the odd day when it’s slightly easier, walk-in g is currently a shuffle which I’m hoping will improve but right now my right knee just doesn’t want to bend and the swelling in my hands makes turning a key or peeling potatoes a challenge .

Sharon_K

Hi @SimonC04

firstly welcome to the community it is lovely to have you here. Being newly diagnosed is a difficult time and the repercussions of this cannot be underestimated. This is a time when being open, honest and both listening and sharing with your partner is critical. It is a tough time for you all. If you would like to talk 121 to our helpline team this is a good way to get some extra support you can call them on 0800 5200 520 in confidence.

For you this is going to be a huge time of adjustment so take your time, try not to compare how you used to be but focus on where you are now. Things will change and you need to give yourself time to adjust as each change happens. Rest assured that nothing stays the same and a flare, which seems to be your present situation is a phase. Be gentle with yourself and give yourself time. There is a huge array of medication so rest assured that your health care professional will be working for you. Your best contribution at this stage will be to be honest with the impact that arthritis is having on you and feedback on the medication you have been prescribed. We have a whole section of the website to support you

https://www.versusarthritis.org/about-arthritis/newly-diagnosed/

Our members are also wonderful at sharing their experiences of living with arthritis and I am sure they will share their stories with you. Please feel free to share your questions and keep us updated

Best Wishes

Sharon

SimonC04

Many thanks Sharon

kind regards

Simon

Fif

Hi, Simon. I assume you've been diagnosed with RA. When do you get started on medication? If it is RA, there should be some urgency, as early intervention gives the best results. I got my 'official' diagnosis at the beginning of November and started on methotrexate three weeks later. I had a steroid injection at the time of diagnosis and that helped with the pain and swelling. I'm now on my maximum dose and things aren't bad. Some of my hand joints are a bit misshapen and they're still not as strong as they used to be, but getting better. My knees are still stiff but I have OA in those joints as well. At the beginning I wondered if I'd ever be able to walk properly again or do all the other activities I was used to, but little by little I'm getting there. I know it's difficult to stay positive, but please grit your teeth and persevere. Even if you only do a bit more every day, it's still progress and over time and with proper medication I'm sure you will get back to some sort of normality. Any exercise is good, so if walking is difficult just now, think about cycling. I have a stationary bike which does seem to ease up the stiff knees. I also do stretching exercises and have carried on with yoga which does help with flexibility. Good luck and let us know how you get on.

Spider

Hello

Brynmor

Hello @Spider welcome to the Online Community, happy to see you joining us. Do say a little about yourself and how you are affected by arthritis. You will then be able to join in across the Community.

Best wishes

Brynmor

Spider

Hello, I am 72 yrs old, married with 1 daughter and 3 Grandson's.

I have been pretty active during my life but recently had tremendous pain in my right knee. I could barely walk and when I eventually did get to see a doctor, she sent me for an X-Ray which should that I had osteoarthritis.

This has curtailed my way of life for the past 3 months. The GP gave me Naproxen which relieves the pain somewhat but now I have just read that Nice is saying that we should not be getting pain relief medication for arthritis!

I am shocked at this as it's the only thing that's keeping me relatively pain free.

AndyT

Hi Simon,

I'm similar to you in that I am close to getting diagnosed by a 2nd Rheumatologist, my main problem is permanent swelling in my fingers so they won't flex (may be tendons rather than joints) and pain in forearms/hands. I did have pain in my feet for 18 months that made walking difficult running (and running/sport impossible) but that has gone away by itself for the last 4 months.

Does your hand swelling come and go, is it around the finger joints or the whole hand?

Hope your treatment starts to improve things for you soon.

Andy

Terri1234

Hi Simon

i am recently diagnosed too - in Dec. I feel your pain! I’m 50 and was healthy and active before this. Mine started in October with my feet and then went into a full flare up a few weeks later. It was incredibly painful - could barely get out of bed, couldn’t lift or open anything. I hadn’t had any symptoms or indication this was coming. GP put me on steroids (I couldn’t function without them atm but they come with their own issues and wish they’d offered me injection tbh). I was put on methotrexate which I didn’t get on with. I’m about to put on rituximab so we’ll see. It can take a few different meds till you find the right one. It’s a lot to take in and I’m still coming to terms with it. Mine affects my hands and shoulders mostly - my hands get v swollen and the pain moves around on diff days. I put ice packs on them for the swelling and then hot water bottle for the pain. Really helps. And long warm showers in the morning esp. Take the meds - they will stop it progressing and keep talking to your partner. Mine has been helpful - he does all the cleaning and cooking atm - but he didn’t understand about the pain - I look alright so can’t be that bad. I would suggest taking them to an appointment at your rheumatologist. How to keep positive- its hard - I’m not there yet. I have moments of sadness that this thing is going to ruin my life and then I think about the meds and I will find the right one. Other people have felt better so I can too.

All the best and to others newly diagnosed

Terri

Ellen

Hi @Terri1234 A very brief welcome from me, we always welcome new members when they first post, but I can see your post is to @SimonC04 and am reluctant to detract from your message to him.

Thank you very much for posting such a helpful and supportive reply. I very much hope you will continue to join in.

Best wishes

Ellen.

Andrea54

https://community.versusarthritis.org/discussion/57431/just-been-diagnosed

https://community.versusarthritis.org/discussion/57431/just-been-diagnosed

Andrea54

Hi Simon: this year, since end of January, I have gone from an active person living with a messed up lower spine to barely able to walk as far as the gate. So far I have only seen the GP and am taking lots of tramadol which doesn't really help. GP referred me to a rheumatologist in February, hoping for a quick appointment. I got a letter in late March saying they had been asked to send me an appointment and effectively they will, eventually. Today I found out that finally I have an appointment! 16th June, this year. I haven't had any steroids yet, just painkillers that don't work. Like you, I have trouble cooking, cutting up onions or chicken for example. My garden is months behind. Can't hold a pen. Keep having to find easy ways to do things, which involves money of course. I never could run but can't walk now, nor actually drive. Sorry I am not being very cheerful and positive but perhaps take comfort that you have been given steroids, I will have to wait another month.😥 GP has given me a provisional label of inflammatory arthritis but added that this is going to be rheumatoid arthritis.😒😥

Andrea

Arthuritis

@Andrea54 @SimonC04 Like you, I was active before my diagnosis, and because RA patients usually look normal in their early treatable phase, people often don’t take it seriously at the stage when its most treatable. Often confusing it with Osteoarthritis, a disease of wear and tear, vs RA, a blood disorder triggered by the torrential replication of soldier white cells that are trained to attacks your joints, (by misinformed “teacher” cells). The various therapies work by putting a sledgehammer in the immune system works, starting with methotrexate, which puts a break on the torrential replication of “cadet” white cells, so there are fewer for the “bad teacher” cells to mislead!

I personally found understanding how the disease works helps me cope, explain to others and make better decisions on how to avoid “flare triggers”.

As mentioned by various people here, RA is treatable when its hit “hard and fast” as rheumy’s with time to think often say. Indeed, this urgency is included in the NICE guidance to GPs and hospitals ie NG100.

However it is a shame that this disease, like cancer, is treatable when caught early, but gets more expensive & difficult to treat the longer its left untreated. Often patient appointments are prioritised on how close you are to death, instead of how much money can be saved by the state if you were treated early, so you do not become a frequent flyer to the NHS, and can resume normal life or even pay taxes. This is not going to change, so I encourage you to become your own advocate and push for the diagnostic blood tests (ACCP & RF) and an early appointment to get you diagnosed & medicated. The advice I had been given is if these 2 tests have even the slightest whiff of being positive you need to be treated promptly. Unfortunately mine was not tested until my hand had swollen, and my condition dismissed until then because I did not look sick. Eventually got it privately diagnosed. So now I am on the maximum MTX dose, and been told to stay clear of crowds to avoid risk of infection as MTX, an immune suppresant, prevents me from mounting a vigorous response to infection, so a minor infection could become overwhelming.

Its been 6 months, and while I am no longer in agony, I still have hot knees & elbows to remind me its there!

BTW, methotrexate takes time to be effective because it slows the white cell replication process, but the **** of rogue white cells already produced and attacking your joints take months to die, ergo, it takes months for any relief after MTX medication. Also if you stop medication for any reason, the replication process kicks off again, and even if you resume mtx, it will take months for the new white cells to die, so again you have to wait months for relief.

That said, there are biologics that interfere with your immune system in a different way, eg preventing whitecells from receiving the signal to attack. (For all diseases, making you vulnerable to infections and cancer). Steroids too, where they tell your white cells to stand down, so it works immediately, but does not prevent production of hordes of rogue white cells.

The one thing that is not there, is a treatment focused only on RA and the disease causing teacher cells. (Dendritic cells in your bone marrow).

Try to contact your GP & Rheumy, be persistent. Do not suffer in silence, each day untreated your disease cumulates damage, its urgent that you see a Rheumy, get diagnosed and treated.