New member: Hi everyone 🤗my name is Jill I’m 60 andI... - NRAS

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JillWeim profile image

Hi everyone 🤗my name is Jill I’m 60 andI’ve just been diagnosed with RA am seropositive and I’m waiting for Rheumatology appointment but unfortunately there is a backlog of 72 weeks!!!!!!!!! I’m on Prednisone at mo but I’ve got to take Methexotrate ( when I get an appointment) which I’m dreading. Any advice and reassurance would be great as this diagnosis has come as a shock to say the least.

37 Replies

Hi Jill

Sorry to hear about your diagnosis and the 72 week wait for a rheumatology appointment!

I was diagnosed with RA/JIA at age 6, about 40 years ago and it’s been a roller coaster ride since then.

The great news for you is that treatments today are amazing, many with very few side effects. I’ve taken methotrexate for nearly 20 years and it’s been great. Yes there is blood monitoring and keeping an eye out for infections but all in all it could be much worse.

I hope you’re not in too much pain and get seen ASAP. Good luck!

JillWeim profile image
JillWeim in reply to Rachhfost

Thankyou 😊 It’s a horrible disease I’m researched out!!!!!! But you give me great encouragement Dr Google can be very scary. My RA started after my 2nd Covid jab a bout 3weeks afterwards. Coincidence????I can’t prove otherwise but I went on Gov website and reported symptoms on Yellow card.

AgedCrone profile image
AgedCrone in reply to JillWeim

The vaccination may have brought out your RA..symptoms but it won’t have caused RA……your immune system did that all on its own.Your best option now is to get started on Methotrexate, ask lots of questions here, & ignore Dr Google until you have more information on your own particular condition.

A lot of people feel unwell & start to panic when they read of all sorts of rare conditions they will never ever experience….so just don’t read too much.

There is a good life to be had with RA, but you need to accept you need patience …& understand your Rheumatologist will decide how to proceed once he sees how you react to the drugs he initially prescribes.

So cheer up…..you will feel better…but don’t panic if your first medication does’t miraculously make you pain free overnight.

JillWeim profile image
JillWeim in reply to AgedCrone

No maybe jab didn’t cause my RA it was coincidental but you never know I worked with colleague after her jab whose hands became painful like mine did and I have no family history of it whatsoever anywhere in my family.So it’s started with me🙄 got to start somewhere 😂

JillWeim profile image
JillWeim in reply to AgedCrone

I’m sure I’ll be fine no pain at mo as on steroids.

AgedCrone profile image
AgedCrone in reply to JillWeim

That was no doubt your colleague’s explanation. But do you really think the NHS would be continuing giving people with no symptoms vaccinations…if a sizeable number suddenly developed RA?

Do you see now what is meant by acceptance?

Our RA is individual to each of us….we don’t catch it….sadly we just develop it……from babies to oldies…there are no rules about who gets it.

Once you are diagnosed ….the best thing to do is to get on the best disease modifying drugs available and head towards settling & accepting your RA.

Everybody wonders why me …& 99% of us never find the answer.

So concentrate on getting well….not the whys & wherefores that might happen to others.

You do know you need to get off the Pred ASAP don’t you?Because the longer you take that drug….the longer it takes to get off it….read back on some of the posts here describing how difficult it is to quit.

Hi Jill, sorry that you had to find us, but welcome aboard. I was diagnosed with sero negative RA almost 20 years ago. Firstly try not to panic, the modern treatment for RA are many and varied and very effective, though it can take a while to find the right medication or combination of meds. I took methotrexate for a number of years but now take one of the modern biologic meds which has given me periods of remission with no symptoms. I remember my grandmother having RA when I was a child and aspirin was the standard treatment, it was of limited use and caused horrible side effects, by my age, 63, she was literally crippled and used to rock in pain. I was so scared when I was diagnosed, but in fact apart from when I have a flare I have a full and varied life, walk my dog for about 45 minutes a day, do my own housework, enjoy a range of hobbies........in effect what I hope I'm saying is though it's a lifelong disease it's not the end of the world. Research keeps finding new treatments, we learn to pace ourselves to deal with the fatigue, and adapt the way we do some things. For me one of the hardest things was accepting that sometimes I need a bit of help with things like carrying heavy stuff and opening jars.

Keep talking to us and asking about stuff you need to know. The NRAS do some excellent information booklets that you might find helpful ,including when you're trying to help your nearest and dearest or your employer to understand what the disease involved and what reasonable adjustments you might benefit from.

Sorry this is such a long answer!!!!!

JillWeim profile image
JillWeim in reply to rounder

Thankyou I’m so grateful for your support and I know it’s not the end of the world I m still in denial about it all and people I work with (I’m a HCSW on a very heavy busy ward) just assume it’s Osteoarthritis it’s like take your painkillers and carry on!!!!!!! RA is like an invisible disease

rounder profile image
rounder in reply to JillWeim

I absolutely understand, took me ages to get my head round it. There are some excellent information leaflets for employers about what it is and their duty of care in terms of reasonable adjustments. I was teaching back when I was diagnosed and the head teacher found it useful and informative. You can get an occupational health assessment for advice to you and then which I found a useful process.Life must have been really tough working in a hospital since covid hit. I absolutely admire and am thankful for all health care workers, our son is a paediatric registrar.

Hezekiah profile image
Hezekiah in reply to JillWeim

HCSW Health Care Support Worker

Hi Jill. Welcome, you are amongst friends. Yes it’s a bit of a shock at first. I went through quite a long period of denial because I hardly had any symptoms. There are many many drugs now for us. Methotrexate is a common one to start on. If it doesn’t suit don’t be afraid to say. Pop over to the NRAS website and download their booklet on medication. Most of our drugs have a list as long as your arm of side effects. Don’t let that scare you. Most don’t happen and they will monitor you closely so will pick up anything serious. Chat again. Take care.

Thankyou I’m glad you felt the same as me my pain was in fingers and my feet plus my knees were joining in🙄steroids are helping and I know I’m going to have to take Methexotrate and I’m not feeling so uptight about it now

Hi Jill, so sorry you had to join "the club", you have come to the right place for great advise, a place to rant and rave or when you are feeling better (and you will 1 day) a good laugh. All on here are the best and have kept me going even at my lowest ebb. Fingers crossed you don't have to wait 72 weeks for treatment, here's hoping you get seen sooner. If you feel as if you can't cope speak to your GP for pain relief, never suffer in silence. I really hope you feel better soon, sending a virtual hug 🤗

JillWeim profile image
JillWeim in reply to Bootoo

Hi Thankyou for support so glad to I found this club 😊😊

Sorry you have had to join us, but welcome. NRAS are also starting to offer a few online SMILE courses soon as part of their 20 year anniversary programme which starts soon (check out the website for details).

Firstly sorry you have to wait so long to see a Rheumatologist it’s seems a long time taking steroids only with no other treatment isn’t a good idea. Where do you live and could you ask to go to a different hospital. There is another way get a private consultation and ask if it is the same person you would see on the NHS by doing this you might not have such a long wait and be seen sooner by the NHS Don’t be afraid of Methotrexate many people take it with no problems whatsoever and remember it’s slowing down any damage that might occur to your joints. Good luck on your journey and contact NRAS they have a telephone helpline and loads of info on line. x

JillWeim profile image
JillWeim in reply to JuneRose

Hi I had a private consultation with Rheumatologist when I asked him if I would be seeing him on NHS he told me he’s retired!!!!! So I’m finding out who the Consultants in hospital are so I can pay privately again. I have also spoken to my GPIts worth it when it’s your health

JuneRose profile image
JuneRose in reply to JillWeim

Your best to speak to a local private hospital and ask if there is a Rheumatologist who is NHS who does private appointments.

Hi Jill and welcome. I’m sorry you have had to join our merry little group. This site is a mine of information and help with a few laughs a long the way .

72 weeks .. wow !! Not good . If you can afford it maybe try to get seen privately with a rheumatologist that also works with the NHS. People often ask for a recommendation on here .. I’ve been on MTX for 5 years along side other medications with relatively little trouble . It is a bit daunting at first but ask any questions you have . Someone will generally have an answer .x

Morning and welcome from me. I will just add to what has already been said. Ask any question you like how ever silly it might sounds someone will asked it and they will have a answer for you. xxxxxx

Welcome. I too was diagnosed with seropositive RA at the age of 60 - 5 and a half years ago. I am on methotrexate and sulfasalazine at fairly low doses and my disease is well controlled. A 72 week wait for an appointment sounds far too long as the quicker treatment starts the better. I would be tempted to push really hard to get a cancellation app - via your GP is likely to be the most successful in my experience.

Hello, I was diagnosed at age 66, progressed so quickly my G.P. pushed for an emergency appointment which I received. Now on methotrexate and sulfasalozine and keep quite well on them. Occasionally get swelling of joints in hands and elsewhere if I overdue things, but otherwise live a normal life. You will be closely monitored, best wishes.

JillWeim profile image
JillWeim in reply to Gymcactus

Thankyou so much

The very best place to find good clear information is the NRAS website. There is a section for newly diagnosed too, as well as information on treatments and managing your condition. There should not be a waiting list that long for urgent conditions which Rheumatoid Disease is. Has your GP marked it as urgent?

Sorry to hear about the diagnosis and the wait. I’m on methotrexate (20mg) and, for me, the side effects are minimal, just slightly foggy for half a day after taking it and it works well for me. Side effects do vary for different people, but there are alternatives so, hopefully you’ll find the best drugs for you. Good luck.

72 weeks? Why? I am getting really annoyed about all the ridiculous waiting for appointments. I know peole who are very sick indeed with cancer because they weren't even seen by a GP. I am very angry as you can tell as a family member is going through this trauma. I think covid is being made an excuse in some areas.. Rant over. You really need to keep pressing for an early appointment or go privately if you can afford. Good luck.

Welcome! I was diagnosed two years ago at 59 (strongly seropositive) and luckily had a determined GP who pushed very hard to get me seen quickly. She also gave me the great advice to try to only read stuff on dependable sites (which is how I found NRAS 😊) and not to read anything older than 5 years as things are changing so quickly. I started on Methotrexate and Hydroxychloroquine and added Sulfasalazine last year. I've been lucky to only have mild side effects and even luckier in that they're working well and my joints are good atm. I tried to improve my diet and to start exercising (a bit of a shock having avoided it previously!) I found Tai Chi for Arthritis good at the beginning when my joints were still iffy and now really enjoy Aqua Fit which is great as you can do it at your own pace and the water supports the joints.

Lots of friendly support here and a few laughs too 😉

JillWeim profile image
JillWeim in reply to Boxerlady

Thankyou I am feeling so reassured and if I get no results I’m requesting different GP.👍

Worst bit is behind you and you have a diagnosis I'd suggest and I'm aware its probably not going to be popular that perhaps you see an RA consultant privately. At least just for first appointment and he/she may be able to jump the list. I'd not worry too much about drugs as all drugs even paracetamol can have side effects and if you read about them its always frightening. MTX is on a pathway and also remember if 10% get side effects and they can be fleeting then 90% so statistically your probably in the 90%. Its simple a wait and see thing. Honestly RA is a blip and a disease that lasts your lifetime but it is treatable and there are loads of good medication and your life most probably will return to normal. RA has never held me back another medical issue sure has but not RA as remission is the name and aim of the game. So try not to Dr Google or listen to tales of woe or friends who tell you its down to diet, etc . Be optimistic and get on a the treatment pathway as soon as you can. MTX is very cheap to buy so if a private consultant prescribes it its not going to mean selling your house to pay for a months supply. lol. The sooner you get treatment the better it will be for you. I don't know about a link to Covid as far as I know RA and I'm set positive too is a genetic condition and and this is just my private opinion it seems to be much easier to treat than people who have it but are sero negative.

Hi Jill, sorry to hear of your diagnosis. I got emergency rheumatology within 3 weeks via GP (4 years ago & pre Covid) & thought speed was of the essence. My GP said recently they could get expedited appointment if I needed it so maybe yours can do similar? 72 weeks?! Others have said about nras free publications on all aspects of RA; they also have a really good free help line on website 👍they may be able to offer some pointers with your massive delay.

The constant comparison of RA to osteo is something that frustrates us all: they are not medically related, it’s an autoimmune disease & you’ll have to educate them ☺️ Nras do fab little cards pointing this out & symptoms.

Good luck, it’s v daunting when first diagnosed but things can and do improve x

JillWeim profile image
JillWeim in reply to Kerensa21

I have asked my GP it’s so frustrating fingers crossed 🤞It is daunting when first diagnosed I must admit unacceptence etc But glad I found this lovely group.

YOUR GP should be able to make an urgent appointment the inital visit to clinic is so important .it would be worth asking .As others have only get advice from NRAS not google good luck and welcome

JillWeim profile image
JillWeim in reply to 66ra

I have asked my GP to see if she can speed things up for me I’m not holding my breath Unfortunately it’s all sign of the times backlog post Covid. Waiting list has now gone to 42 weeks for urgents from 72weeks I rang again today. It’s terrible.

Debsw_nras profile image
Debsw_nrasPartner

Hi Jill. I am sorry to hear about your diagnosis. I work for NRAS and have had JIA for over 30 years and my daughter has it as well. It is very hard to take in all the information at diagnosis. We have many free publications that can help you learn about the RA journey. Dont read them all at once as it can seem overwhelming. The advice others have given is also great, you are not alone in this. If you have any questions please call our amazing helpline team 0800 298 7650. We are here to help you. Take care

JillWeim profile image
JillWeim in reply to Debsw_nras

Thankyou 😊

Hi,Welcome to the club.

Gosh that is along wait.

RA is complex, treatment and control of RA is equally complex.

Sadly, it is still a 'suck it and see' situation regarding medication. Many of us can testify to the fact that while one med might work for XY & Z it won't for B or C. Then there is the problem that some meds just don't suit your body. That said, we usually end up with a concoction that helps... and some people find that quite quickly or even with the first medication.

Wishing you good luck and a quick solution, lots of relief and a gentle passage through the days ahead.

JillWeim profile image
JillWeim in reply to Brushwork

Thankyou I’m just going with the flow yes the wait is unbelievable don’t know if it’s same in England but certainly is in Wales and I work for NHS!! No perks unfortunately 🤣

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