I haven't Had ra for a for long maybe a year. Nothing is really damaged right now. I'm on methotrexate, prednisone and hydroxycloroquine

I was wondering since my RA was caught early Will my joints still get deformed. I realize I will have pain A good part of the time and fatigue. How do you know you're on the right dose of medication

[allanah]

Oh Abby, I know How you feel. My family all suffered from hip need hands deformity with their RA. And I was so worried when I got my diagnosis. But rest assured treatment nowadays is very good for keeping your information under control. So when your inflammation is controlled and the swelling is controlled therefore the damage to your joints is much less or indeed none! The key to success is that you receive your treatment very quickly and it sounds like you have been lucky to get onto treatment after your diagnosis.

Patience is essential, as it can take up to 3 months for the medication to get into your system. But then you should see a decrease in the amount of pain, swelling, and fatigue.

Have you spoken to their NRAS helpline? They are very good for advice and support and when I was first diagnosed i phoned them all the time!

Also if you contact your GP, they are very good and specialise in good pain relief, so you can help keep the pain under control with good pain relief.

So I know it probably feels a bit bleak at the moment but with the right care, the right medication and the right pain relief that this is no reason why you won't feel a lot better! Hope you feel better very soon xxAxx

[Dotty7]

Hi Abby

Mine was caught early, and most of the time as long as I take life steady I don't get much pain, and can do pretty much everything I want to - including riding a bike and a horse. The pain I do get is controllable with cocodamol, and I try to manage it actively i.e. taking tablets before the pain really gets a hold, or, if I'm going to do something that will make me stiff or sore, taking tablets in advance. The fatigue was a nightmare when I was working: I was a secondary school teacher, which is so full-on every minute of every working day that none of the advice about pacing made a difference even when I cut my hours. It was too unpredictable for me to be reliably good in the classroom and I couldn't think straight. However, I've now given that up completely and the very good news is that the fatigue is much more controlled too. I need more sleep than I ever did - 8-9 hours a night at least - and I take lots of rest breaks during the day, but I am able to lead quite a busy and active life.

The medication does take a long while to become fully effective, and if you can make changes so that your life is as restful and as stress-free as possible you will probably reap benefits from that, though I know making changes isn't easy. A good rheumatologist would probably say that you are on the right dose of medication when you are able to lead the life you want to lead, though you might have to be a bit patient to get there. When I started taking hydroxy it took about six months before the difference was really apparent. Bizarrely, on good days I probably feel healthier than I have felt in years because I look after myself better than I did before. I used to take my health for granted, as most well people do, and it's only now that I really appreciate feeling well.

Good luck - it's a hard road to walk but things will almost certainly improve from where they are now.

Dotty xxx

[Hidden in reply to Dotty7]

Hi Dotty7

You are are you uplifting! I'm having a hard day today a lot of pain with no pain management. I'm sure it will get better in time

[Dotty7 in reply to Hidden]

It really will. What pain relief have you got? If what you have isn't working it's worth going back to your GP and seeing what else they can prescribe, or what is the most effective way/combination to take them. Or your rheumatology nurse (if you have one) might be able to help. It's hard to keep persevering and chasing doctors when you feel so rough, but it will be worth it. Also there may be other things that will help with the pain - I swore by an electric blanket, until I got a fab mattress from the OT which I now use with a hot water bottle. (Fire risk otherwise!) Ask to be referred to an Occupational Therapist because there are lots of things they can sort out for you that will make life easier.

Really feel for you.

Dotty xx

[Trulyfedup]

I agree with everything my two friends have said. Unfortunately I wasn't diagnosed early on...my fault...I thought I was turning into a baby not coping with the pain so I left it too long to find out what was wrong...you seem to have caught it early on which is very good....I can't really add to what's already been said but just to say this site is wonderful, the friends are lovely, we also have fun on here as a lot of them are wonderfully bonkers!!!!! So keep letting us know how you are getting on. I wish you well.maryx

[Hidden]

I've had RA for 26 years. I had NSAIDS with Sulfasalazine in the beginning. Then Prednisone for 6 months. Followed by Methotrexate for 5 years and a top up of 10 mg Leflunomide. At the moment I'm only having 10 mg of Leflunomide. The only damage/deformity I have is a couple of toes on each foot. Although I can't straighten my right elbow properly and during a flare, my hands look a bit crabby. The only other problem I have are swollen, lumpy knees. Sending hugs and best wishes. xxx

[Hidden in reply to Hidden]

Poemglore thank you so much I feel a lot better now I just hope I'm on the right dosage of medication

Abby

[Tillytop]

Hello Abby,

I'm so sorry you are struggling so much. Like poemsgalaore I have had RA a long time (18 years so not as long as him though) and although I was diagnosed in the beginning with "aggressive, erosive RA with a bad prognosis" early diagnosis and meds have kept my joint damage to a minimum. Although my RA has affected pretty much all my joints over the years, my only significant joint erosions are in my hands, wrists and feet, and the deformities are minor so I like to think that nobody except me would notice them if they didn't know they were there if that makes sense. Also please don't think you are always going to have pain and fatigue because I know from experience that, if you can find a combination of meds which works for you, these things really can be improved greatly. I was lucky enough to have 6 years or so of complete remission so I know that it is possible (although not everyone is as lucky as I was in that respect). You ask about how to know if you are on the right dose of meds - well I always think that the aim of the meds is to keep the symptoms under control as well as possible and to minimise potential joint damage. And if you are still struggling so much on the meds you are currently taking, I think it is important to discuss this with the rheumatologist to see if there is something you can try which might be more helpful for you. I agree too that asking your GP for some pain meds might also help you. It can be a real rollercoaster ride in the early days of RA, trying to find the best combination of meds and, because RA itself changes over time, there may be times when meds which have been working well for you, become less effective. But there are many meds out there and more new ones becoming available all the time so the outlook these days is much better than it was, even 10 years or so ago.

I really do hope that things improve for you very soon.

Thinking of you.

Tillyx

[Hidden in reply to Tillytop]

Thank you for sharing that great information. Every bit helps

[Hidden in reply to Tillytop]

Tillytop, sorry to correct you, but poemsgalore is a lady, not a man. Very short hair is due to having chemo earlier this year, and it hasn't grown properly yet...lol

[Tillytop in reply to Hidden]

Oh I am so, so sorry - and very embarrassed. Please accept my sincere apologies. I will go away and hide in a corner now.... Tillyx

[Hidden in reply to Tillytop]

No probs Tillytop. It is the first time I've ever been mistaken for a man. Even when I had no hair. Will change photo to avoid more confusion and embarrassment. xx

[Tillytop in reply to Hidden]

Thank you for being so gracious - I can't apologise enough... Tillyx

[Hidden]

Hello BOB here

When they catch RA soon enough they can slow the process down with medication, although over time depending on how the condition is presenting itself, how aggressive it is you will most probably, not always suffer swelling and joint damage. This sadly is part of the problem. Good care can help You will possibly make choices regarding treatments

Your GP and Specialist will keep you right regards treatments that will help

Good luck you know where we are for support

BOB

[Hidden in reply to Hidden]

Thank you for sharing and your support

[helixhelix]

As others have said, the modern treatments are completely different from what used to happen with people with RA so pay no attention to some of the horror stories on the Internet from years gone by. The damage/deformities I have happened before I started on the drugs, and since then it really hasn't progressed in terms of permanent damage and That's been several years now. My rheumy has told me that it looks as if I'm lucky enough to have a fairly non-erosive type of RA. It still hurts from time to time, and I get the usual morning stiffness and aches when I overdo it. But otherwise I'm virtually normal.

It took a long time to get to a position when I was stable, and I'm now on 3 DMARDS plus the usual extras. But I did find I had to push my rheumy a bit and keep asking if this was as good as I could get, as once my bloods had improved she seemed to think her job was done even tho' I still had much more pain and swelling and tiredness than I do now. But having the extra drugs really made a big difference, so I'm pleased that I nagged. I'm no doctor, so can't give you any medical advice, but I would suggest that you ask your rheumy if there's a better alternative than staying on prednisalone as long-term use of steroids isn't usually recommended. Anyway, I reckon that you should be aiming to get back to nearly normal, with no further damage , so keep talking to your doctors. Polly

[Hidden in reply to helixhelix]

Helixhelix

The Computer is the worst thing when you find out you have an

illness I feel so relieved with all that information from you and everybody else on the front forum

You are all my faraway friends

Abby

[oldtimer]

Recently I saw a podiatrist who was amazed that I had had RA for so long with so little deformity. It has always been treated promptly with DMARDs (and I have been lucky enough to have had several periods of remission) and I exercise like mad between flares!

[mattcass]

Hi Abbey, May I ask what daily mgs of Prednisalone are you on, Matt

[jolahodson]

hi im 39 and have just been diag with ra . the first sign i had was in aug of this year with my dr taking no notice of me . i was crying with pain and cudnt get out of bed . at my first appoint apparantly my levels of anti nuclear antibodies wernt high enough for the dr to be concerned but he booked me in for a ultra sound on my hands anyway . i have eroisions in 6 fingers and was diag with ra and although dr said i had malar rash on my face wont diag lupus just yet . i am on hydroxychloroquine and methotrexate and also had a steroid injection im dreading it waring of to be honest as dont like the pain this ra is giving me . im alergic to anythink with codeine in which sucks ( sorry for all my spelling mistakes and untidy writing as my hands suffer more lol