NRAS
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Newbie introduction

Newbie introduction

Hi I'm new and just like to introduce myself. I was diagnosed with RA about 2 years ago and it came as quite a shock - never had any serious illness all my life.

I am retired and used to lead an active life (walking, gardening, car repair), now I'm struggling some days to do basic activities, but slowly adjusting to what I can do.

My first symptoms were sore elbow / shoulder joints, it then progressed to wrists, knees, hands and some muscles.

Recently lost the use of my extender muscles in the right hand, the RA specialist (is that the appropriate use of the term) was not very helpful, but the RA physio gave me lots of useful info and a splint that has helped. The function is slowly returning now after about two months, thank goodness as I'm right handed.

Anyway, still learning lots about RA and treatments, my symptoms now are much better than previous. I look forward to keeping in touch with you on this forum.

PS my meds are Quinoric (2 x 200 mg), Naproxen (2 x 250 mg), Omeprazole (1 x 20 mg), Prednisolone ( 5 x 5mg decreasing to 1 x 5mg) along with different analgesics.

Chris_O

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Hi there Chris. Not a club we really want to be in is it.It is so painful when you can't do the things you always did.I feel so pathetic at times when I can't do just simple things. Have you never tried methotrexate or any other DMARDS or biologics

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Hi Fra 22-57, thanks for the reply.

No, only used the meds I listed in my post. I was beginning to think that the quinoric wasn't working as well as it used to, hinted to the RA specialist about changing but he was having none of it. After reading such a a lot about RA I think that as long as my symptoms are bearable he wants to keep me on a low dose.

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Hello Chris & welcome to the forum. You'll find a lot of very friendly people on here, most of whom could give you some advice that you seek. We have sad times & a lot of fun times. Also your welcome to rant as much as you like, if you feel the need. We're all listening.

Ruth :)

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Hi Ruthytootie2

Thanks for the reply, my hands are struggling to type, thank goodness for autosuggestion. It's nice to realise that there are people out there with help and sympathy. No rants just yet, but my faith in my RA specialist has been dented!!

Chris_O

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Hi Chris, welcome to this very helpful and supportive forum. Sorry to hear about your diagnosis . I hadn’t heard of quinoric before but after googling I see that it is another name for the DMARD hydroxychloroquine.

It sounds as if you are going in the right direction as you say you are much better than before and your hand has regained most of its function. Your rheumatologist can always add in another dmard if you feel that things start to flare up again on a regular basis.

If you need support or just to let off steam, we’re all here to listen.

Best wishes

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Hi Downtime,

Thank you for your reply, my hands are not doing as they are told at the moment when typing (improves later in the day). My specialist is not very commutative, so I guess it's up to me to suggest any changes to my treatments. Sounds as though I need to read a lot more posts about symptoms and treatments.

One thing that has I've thought about is drug costs, these must be figured into treatment somehow?

Chris_O

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Hi Chris. Welcome. But I am sorry that you have this, as it can be very hard to deal with.

I am very similar to you in that I also started out in my shoulders. It was quite peculiar and my GP thought it was bursitis. Anyway, when the pain jumped all over, such as my other shoulder, knees, hips, feet, hands, well it became increasingly obvious that it was no longer bursitis. Sent me to a rheumy and after a ton of bloodwork, I was finally diagnosed a few months later. Although at the time, my rheumatologist didn't tell me I have seronegative RA. He just said I had RA and put me on MTX. I believe the harshest of the DMARDS.

Anyway, enough about me! LOL. I am happy to hear that you have been able to get a hold on it. As mentioned already, you have many options if something starts to flare really bad. But I am very happy that you were able to achieve the right mix of meds that seem to be getting you on the right path.

I just want to remind you, that treatments are YOUR choice. Your doctor may suggest something that you dont want to do. After doing a ton of research, you may choose to move forward with the advice or not and that's OK too. I feel like I learned that the hard way, but I am at a point where I feel in control of my life because I did massive research on many things pertaining to RA, the blood work necessary in diagnosing, DMARDS & biologics, and natural remedies as well, etc.

I am kind of doing my own thing, and amazingly I am doing better than before. I am not advocating going rogue but we all just react so differently to treatments that it is quite amazing what can work for one and not the other.

I have probably bored you out of your mind. I hope this was somewhat helpful :-)

We are here for you. Take care!

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Hi Jesnahkah

Thanks for the reply.

RA seems like a difficult disease to get a handle on, I've only realised recently that you must be in the control seat ( too much trust in specialists ). To do that you must be informed, and I've a lot to learn. My wife is ex NHS and knows a lot more about procedures / drugs etc than me.

Sorry if this reply is a bit short but my hands are not behaving well this time in the morning

Chris_O

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No worries! I remember those horrible times when my hands were completely crippled 😫

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Yeah - My doc generally suggests something, we talk about it, she writes a script for it, and then before I fill it, I go check it out. She knows that if I don't like what I am seeing, I will let her know and we will look for something else. She is really excellent about listening to me.. Here's hoping yours will start or you will find one that will.

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That's awesome caerylUSA! I'm eager to find a similar minded doc!

Xx

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Are you taking anything now? I think you’re right - it’s incredibly important to do research and make an informed decision.

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Hi MLC1972

Thanks for the reply. I'm taking :

Hydroxychloroquine 200mg

Naproxen 250mg

Omeprazole 20mg

Prednisolone 25mg decreasing to 5mg ( due to recent flare up)

Last summer I managed to decrease most of the drugs, but recently I've had a flare up and back on full strength.

I don't know if the Hydroxychloroquine is as effective now, but saw my specialist and he didn't recommend changing to anything else?

After talking to forum members I'm starting to keep a very detailed file on drugs / dates / appointments to monitor my progress.

Chris_O

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Welcome Chris i am sorry you need us,but i am glad you have found us,we are a great site plenty of lovely people who will support you,make you laugh and cheer you up as best as wecan.xxxx

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Hi Sylvi

Thank you for your reply, it's nice to here with like minded people.

Chris_O

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Hiya Chris_O, welcome. A quick message as about to pop off to buy the last of food for Christmas but just wanted to say I also started my RD journey (Rheumatoid Disease, preferable to RA for some of us to lose the Arthritis tag) 9 years ago with hydroxychloroquine, an NSAID, steroids & omeprazole though had to change after a year on HCQ as it stopped working for me but it did marvellous work early on. I remain on it's replacement methotrexate having tried double therapy with a couple more DMARDs & steroids. Keeping RD bubbling under with MTX & halted tapering steroids at present.

I hope you find being here helpful. We'll do our best to help with any questions, we've lots of experience between us that we can share. 😊

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Hi no more wheels,

Thank you for the reply, l'm struggling at the moment to type with painful hands (it wears off later in the day). Your experience with hydroq is interesting, that's what I was expecting to happen to me.

Chris_O

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Hi. Same as others sorry you are here but will say when i found this forum a little while ago, i had no idea how much it would help me, especially helps to realise others understand. That is not to say i dont have a great and loving family becauae i do. Its also very helpful to read others experiences and opinions. Hope you get into remission quickly. I have yet to arrive there.

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Hi Ruth 12345

Thank you for replying to my post, I hope that as well as benefitting from advice I can make some positive contributions myself.

Chris_O

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Im sure you will. Its just great to contribute,read others and get replies .... win win.....

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Hi Chris, have you tried Magnesium oil for your painful hands. I too was diagnosed 2 years ago but due to drug allergies I have struggled a lot with pain. I have been given a Biologic called Orencia which is starting to work for me. Along with 10mg prednisolone. Hopefully I will get off the prednisolone by tapering it down. This week though I have a bad cold so I could not use the injection and the pain is really kicking in again.

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Hi Paulajojo

Thanks for the message, I am not familiar with magnesium oil, but will give it a go. It seems easy to make your own, so after the holidays I will be down to a health shop to buy some - then pinch some of the wife's essential oils!

My experience with prednisolone has been good, I was prescribed it several times after a flare and it relieved the symptoms within days. I've heard good things about biological drugs but understand it's an expensive treatment - here in Wales UK most of our treatments are free, doctors don't talk about costs (the system is complicated but each health care centre gets debited) so you can understand that doctors are reluctant to prescribe expensive stuff.

Anyway thanks for the advice

Chris_O

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I am in Leeds west Yorkshire. I understand what yourange about costs. I had to fs on three other DMARDS before I could be referred for a Biologic and even ten the first two gave me allergic reactions.

The Magnesium I use is from Holland and Barrett. £12.99

Seems expensive but it's big tube and lasts a long time.

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Sorry about your diagnosis and pain, but welcome. I, like you, was very actively newly retired when diagnosed -grand. child care, volunteer work, study, walking holidays , craft, gardening, and was mortified to find myself suddenly unable to do any of it. But take heart, though not back to what I was (and I'm 8 years older too), I'm back to gardening (not the heavy stuff), walking (not hill walking), child care (not overnight) and knitting, sewing etc (for an hour or less at a time). More on a good day, less on the occasional really bad day. And that's a lot more than many of my friends without RA can do. So don't despair - it takes a while but does get better...

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Hi Janmary

Thank you for the reply. I try to do things on smaller scale now, went for walk along sea front today and it was great. Felt rather knackered afterwards but worth the effort. Another hobby was oil / acrylic painting, but after problem with my right hand I've lost good hand control, so I'm painting abstracts!

Chris_O

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Welcome Chris - You will find a lot of information on here if search by the subject you are interested in, and there are a lot of people here willing to help or answer questions as we can, keeping in mind of course that we are not docs and can't give medical advice. sorry you have to join us, but know that you are welcome.

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Welcome to a fellow gardener. I too was upset at diagnosis when I could hardly hold a teacup let alone do anything fiddly with my hands. But now I'm back to be able to garden for hours (as long as I change tasks every 30 minutes or so), long walks with the dog (with a thermos so can stop for breaks), and so on.

You said above that you have realised that you have to be in the control seat. To me that is essential with this disease. Yes the rheumatologists know their craft, but it is a very variable disease and unless you communicate fully they tend to a minimal intervention approach. Which is good if that's all you need, but doesn't necessarily work for everyone.

So from the start I have kept track of my blood results, symptoms and so on. And I kept asking my rheumy if this is as good as it gets. Anyway it took nearly two years to find the drug cocktail that suited me best, and I've been in remission for most of the time since (5 years now). I'm on triple therapy, but no longer need prednisalone or things like naproxen except on rare occasions. And I have improved my lifestyle hugely, so am basically they healthiest I've ever been (apart from the small matter of the RA).

Presumably if you are only on quinoric you don't have frequent blood tests? So how do they know that your disease is getting under control? How do they determine your DAS score? I would be asking my consultant those sorts of questions right now as he/she doesn't sound like Mr or Ms Proactive to me. Of course it's entirely up to you, but after 2 years it doesn't sound as if it is fully controlled yet.

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Hi helixhelix

You're right I don't have my RA under control yet, in fact I only get to see my RA specialist every six months!

The way the referral system works in Wales seems to be very hit and miss, so it's difficult to know who to talk to sometimes. My GP has been very good in helping get emergency pain meds when the need arose.

I didn't know what a DAS score was until I googled it, but I think it must have been done about a year ago - no not informed about it, and never get a copy of my blood tests. I really do need to take control and start asking lots of questions.

I have an appointment with my RA phsyio next month so I'll start asking her (she is a lot older than the specialist so presumably more experience).

Anyway thanks for the reply and advice.

Chris_O

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Hi helixhelix

Something I forgot to tell you in my first post. I've been semi retired now for sixteen years (retired full time employment at age fifty two with a pension).

During those sixteen years I worked part time as a gardener and another job related to my full time employment, I'm really glad that the RA didn't hit me until now, but it makes me realise how fortunate I have been. Looking back I think very small RA symptoms occured and I've just ignored them, still you live and learn.

Chris_O

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Hindsight is a wonderful thing....and I think many of us can relate to ignoring symptoms for a long'ish while.

But never too late to take charge, and it's a sad truism that people who shout the loudest get heard. That plus the equally sad fact that sometimes the health service is a bit ageist, and thinks it's ok for older people just to be able to "manage", mean that it can be a struggle to get full treatment. Maybe this is as good as it will get for you, but worth trying to double check just in case you can improve.

I only see my rheumy at 6 to 9 month intervals. But when I was in the UK the hospital rheumatology department had a specialist rheumatology nurse who operated a helpline for queries. Find out if your hospital has one as she was very useful in between appointments.

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Hi Chris, yes not much fun, but since being on Methotrexate weekly injection my symptoms are much better, I do have flare ups then Naproxin comes in handy. Good luck with it all. Merry Christmas to you.

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Hi Lyneal

Thanks for the reply. Did you go straight on to the methotrexate or was it after progressing from something else?

Chris_O

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Hello Chris and welcome

Marie

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Hi ya and welcome. You're still very new to having R A. However I must say that it sounds like you are dealing with it very level headed. I know that's not easy so "well done" to you. Take care xxxx

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Not a question for me I know but just thought i would say after steroid joint injections and tablets, methotrexate was first med. I was put on hydroxychloroquine but not started yet as a bit bothered about the problems with eyes if it occurrs. Also husbands had cateract removed and got to have other one done in Jan so both cant have eye probs. So if anyone has expwrience on taking that id like to hear it. Also im now on a lot more and hoping to be in remission soon.

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Hi Ruth 1234

I've been on hydroxychloroquine since October 2015 - I was told to get regular eye checks. Been to my opticians twice since then and told him about it, no problems so far.

Chris_O

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Thank you. Its my 4th/5th DMARD . I wonder whats next. Its good to hear what you said.

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