Newcomer 😁

[janny55]

Hi, I’m Janny, I have only just been diagnosed with RA, and would value any information or advice anyone can give me.

[oldtimer]

I'm sorry to hear that you have had to join us here but a warm welcome! There is a lot of information about Rheumatoid Disease on the NRAS website and well worth looking at for reliable information about how to manage and about treatments.

If you have any specific questions it's worth putting any key words in the search box as there are often previous posts on a subject you might like to read.

Don't forget that mostly people post because they are having problems - the others who are well controlled are mainly just getting on with their lives and often don't post to say how well they are doing!

We would love to hear a bit more about you and how you were diagnosed.

[janny55 in reply to oldtimer]

Thank you for replying 👍well it’s a long story but I’ll try to keep it short 😊 I was due to have a knee replacement operation on the 8th May but after having the pre op blood test they cancelled the op because I was anemic, so since then and after various tests , visits to hospital and two weeks stay in hospital I was diagnosed with RA, unfortunately I’m still slightly anemic so still can’t have have the operation at the moment.

[hawker955]

Don't despair, it is very unpleasant if not controlled but modern therapy is very effective and a normal life should be possible. Whatever "normal" is!!?

[janny55 in reply to hawker955]

Thank you, I appreciate your reply 👍🤗

[janny55]

Thank you 😊👍

[medway-lady]

It really can be well controlled these days, so don't worry or think life is over. I lead a normal life do all the stuff I always did and apart from a small pill every day its not a condition I'm in any way mostly concerened about. Having said that because of a few issues such as its affected my lungs and blood and got more aggresive so I'm going onto biologics. But no worries RA consultant, and nurse are lovely and GP is great too. The nhs really does look after most of us, sure some may not agree but I can only speak as I find and i've never had any issues. I'm so glad it is controlled and modern meds can do so much. Best advice don't read the PIL or you'll frighten yourself to death and in my experience diet reducing inflammation advice is contensious and I'm Celioc so not eaten gluten for many years I still have RA and some other auto immune conditions too. Still no problem as no gluten in fudge !

I believe that being posative helps and keeping active is vital, it may not always be possible though and if your fatigued then rest too. Sometimes its hard to say no but you must and look after yourself.

[janny55 in reply to medway-lady]

Hi Medway-lady

Thank you so much for your reply wow only one pill 👍😊 I’m on steroids, methotrexate co codamol and folic acid at the moment but hopefully when they get it settled then the tablets will decrease 👏 I was originally going to have a knee replacement operation but blood test showed I was anemic, operation cancelled ,various tests, hospital appointments and a 2week stay followed they found out I had RA.

That said it could be a lot worse so I’m keeping positive that I’ll be up and about soon 🤗😁😊👍

[medway-lady in reply to janny55]

Steriods taper off usually as the MTX works and folic acid goes with the MTX. I take Lefludamide, actualy with a shedload of other stuff for other things Riveroxaban (blood), Thyroxine for thyroid, B12 by injection (that hurts) for Pernicous Aenemia, and Omprazole. Not to mention Doxycycline (antibiotic) as a rescue pack. Still I'm healthy and active and RA is very treatable and with the nhs there is so much to be gratefull for. I hope your up and about soon. My foot was done last year so dancing feet and shoes again. lol x

[janny55 in reply to medway-lady]

Ahhh yeah B12 I forgot that on 😁& omprazole 🙄😊 I’m glad your dancing again that gives me hope 👍😊and hopefully when my anemia sorts itself out I will have my knee op 😊it’s nice to hear from you thank you 😊

[AgedCrone in reply to janny55]

Hi janny......Take heed of Medway-Lady about tapering off the steroids once the Mtx is working. It is far too easy to stay on it & get hooked. When you feel the Mtx is working its magic.....do ask when you can lower the Prednisolone.

It helps many people...but in my book it's the drug from Hell!

Hope your meds all kick in soon..

AC

[janny55 in reply to AgedCrone]

Oh really thank you for that information they have mentioned about weaning me off, but I will remember that thank you AgedCrone for your advice, it’s all very confusing, although the nhs staff were amazing no one told me much and I didn’t really know what questions to ask, so I value all information 👍🤗😁

[AgedCrone in reply to janny55]

I still don't know very much & I was diagnosed in 1999....it is a minefield to get your head around.

I have chosen to listen to my rheumies & their well trained nurses & they have served me well all these years.

We have "discussions" & once I am convinced I have understood their reasonings .....we get along fine......but if you have doubts - do speak up - the Rheumy nurses are excellent at explaining things.

Just don't let the RA take over your life ......I know it can be dire at times......but it's a condition...not a life style.

[janny55 in reply to AgedCrone]

Yes it does seem like a minefield & I guess it differs from person to person, I’m determined not to let it ruin my life and I’m hopeful that when I have my knee replacement I will be able to get about better, I will listen to my consultant and rheumy nurses 👍thank you 🤗🤗

[AgedCrone in reply to janny55]

You will do fine janny......it's no walk in the park...but when the upside appears & you at last find your drug regime it makes you more determined not to give up!

[janny55 in reply to AgedCrone]

Thank you so much😊 am feeling it today not a good day 😧but keep telling myself I will get there & your words have reassured me 👍🤗

[cerilisak]

Hi Jenny not sure where you live but we have an RA support group in Caerphilly. We meet every 2 months and invite speakers share experiences new treatments etc. Have a cuppa and raffle. We have had laughter therapy, nordic walking, yoga, crystal healing, tai Chi occupational therapist etc. There may be one in your area or if you live near us you are very welcome.

[janny55 in reply to cerilisak]

Hi cerilisak 🤗 thank you for your reply that’s very kind of you and sounds fantastic just what I could do with meeting other people in the same situation, so you don’t feel so much on your own, unfortunately I don’t live near you, I live in East Sussex, so if anyone knows of somewhere near me would appreciate it. Thank you 👍😁

[cerilisak]

Yes it is very positive and about things we can do. We have a laugh and have all become friends. If you contact NRAS they will be able to tell you where your nearest group is.

[janny55 in reply to cerilisak]

Yes sounds exactly what I need as at the moment I feel a bit like a rabbit in headlights. Thank you I will contact them 👍🤗

[nablur]

For me it’s one day at a time and I try to go with the flow of info,meds,reactions.

This is a fab place for support and info. Welcome!

[janny55 in reply to nablur]

Thank you nablur 🤗 yes trying to get my head around it all 😁

[Millysmum]

Hi Janny

Hope all goes well for you now you are on the meds.. I'm also new to RA diagnosed in May. The steroids are great for short term, I tapered off them completely by mid July, think the methotrexate is working, but may need a tweek, when see rheumy in 2 weeks, as left hand swelled up and sore, apart from that it's all good! There's loads of help and kind support on here. X

[janny55 in reply to Millysmum]

Thank you Millysmum we’re newbies together 🤗 feels like the first day of school 😊 scary and unsure of what’s going on 😧😊

[Millysmum in reply to janny55]

We certainly are, I know the bunny in headlights feeling. And I'm still getting to grips with it to. Can't wait to see my rheumy in 2 weeks, a bit disappointed that it seems to be coming back, after 3 months of next to no pain, but was warned. I fit gas and electric meters in my job, and been on light duties for months, keep thinking I will get back to it, but using a torque screwdriver at mo isn't happening. Hope you are finding the meds okay, and they start doing their thing x

[janny55 in reply to Millysmum]

Yes it’s definitely a lot to take in, ooooh I bet that’s hard for you and very painful 😖 exactly mines coming back too I had intravenous steroids in hospital, was a bit worried about it (side affects etc ) but they did make me feel amazing 😉 hope you get some relief when you see rheumy, keep in touch 👍

[Millysmum in reply to janny55]

Sorry to hear its coming back for you, are you on steroid pills aswell? Mines bearable, hoping just a tweek on the methotrexate will be enough, dread the thought of an add on!! We shall see. Hope your comfortable this evening. Have they said when they going to try for your knee op again? X

[janny55 in reply to Millysmum]

Hi Millysmum

Yes on steroid pills, & methotrexate going up to 15 mg, I hope the added dose of methotrexate will work for you, I’m better in the evenings, really difficult in the morning, it’s just a shock because I have always be very active last year I was doing a colour run this year I can’t walk, but hopefully when my meds are sorted and my knee operations done, unfortunately they won’t do it at the moment because I’m still anemic. I really hope you get sorted soon let me know how it goes 👍🤗x

[Millysmum]

In know its a shock to the system isn't it. My symptoms started in March with hands and feet, a month later my knee, in May I couldn't walk either. I was getting married in las vegas in June, such a panic!!! Within 2 days I could walk after steroids, rheumy promised I would get to Vegas, and we did! I'm on 15mg at mo, but think it may go up. I was active just like you, did the shine night walk etc... Still with the right meds, all will be good fingers crossed x

[janny55 in reply to Millysmum]

Oh god what a shock congratulations on your wedding, but very panicky, yes it’s a very weird disease, here’s hoping we will both be active again 🤞🤗x

[Mandalou]

H janny

Welcome and good luck on your journey with this frustrating and painful condition.

Just a complete minefield of information at the beginning but you have come to the right place for advice and support from people who really understand.

It can be overwhelming and scary but you aren't alone.

My advice is to keep a record of your blood test results and learn what each test is for then as you become more familiar with the drugs you are taking these results can really chart your progress as well as any unfortunate blips.

It's all about owning your particular version of auto immune disease , I say it's like becoming your own expert and this site is invaluable.

Good luck, I'm sure the anaemia will sort itself out and then you will be new born after your knee op.

Best wishes to you.

Mx

[janny55 in reply to Mandalou]

Hi Mandalou

Thank you for you kind words and advice, must admit my mind is going in all directions, good idea I will definitely keep a record of my blood results because at the moment they just look like gobble de goop on paper 🤗x

[pauluk60]

hi janny lovely pic wife as banned me from smiling and laughing ilook like that irish singer who always sounded drunk Shane MacGowan what i great song streets of new York Kirsty MacColl if he had rheumy he wouldt of felt it but i partial to being drunk and daft ishouldt b to complain but little miricles are happening hopefully i better quiet or it will snap back its cruel that way bye jan

[janny55 in reply to pauluk60]

Thank you Paul 🤗 ahhh yes that song will be playing all over the place soon 😁🎄

[pauluk60 in reply to janny55]

i think i am drunk with my posts takes me all the time to read them must b a pill for it