Hello everyone. I am new here and live in the mountains of Nevada in the US. I was diagnosed with RA in 2004--ironically the year I retired. The middle joints of all my fingers are ruined. I feel so tired all the time. I take Methatrexate once a week, and I haven't really had an increase in symptoms since I started it. I feel foggy headed the day after I take it, and it exacerbates the fatigue, but that's about the extent of it. I hate the fatigue so much. I thought joining a forum might help me find ways other people cope with this disease.
I'm new here: Hello everyone. I am new here and live in... - NRAS
My RA started in 2005. I was started on Methotrexate but it didn't suit me... mainly it gave me tummy cramps.
I then went on Leflunomide. My consultant was keen for me to go on the anti TNF drug Etanercept [Enbrel] and this has really put me on the feet so I am back walking with the ramblers [but 5 miles is my limit]. I do have days when I feel more tired but also I find getting out and walking helps this. I do think it would be a good idea to talk to your consultant to see if some other medication might suit you better. Like you, my fingers are a mess and my toes and feet are bad too. The RA has made my feet flat which has put the toes out. Not much that can be done about that now. I do hope you get some help to feel better xxx
I have had no side effects that I have noticed. For me Enbrel is the miracle drug and I am so grateful to be back on my feet, more or less free from pain and feeling so much better all round. Give it a try, You can always stop it if it doesn't suit you. I do understand the fear, though, I felt the same at first.xxx
I live in Oz so I am often up when everyone else in UK is asleep! Welcome and I hope you find good support as I have. I am on Plaquenil just started on drugs last year it has taken them nearly 2 years to sort of figure out what is wrong with me and they still aren't sure. I am hearing you about the fatigue it is a crippler at times. I work fulltime and some days I just barely drag myself through the day.
I'm sorry to hear that your retirement has been spoiled in this way.
The fatigue often seems to be linked to the level of inflammation - are your inflammatory markers down? if not a review of your medication is needed.
Apart from that I think the key advice is to pace yourself. I think of myself having so much power in the battery in the morning and I have to ration it out during the day. If I use too much up, then I have to rest to recharge the battery.
There was a link on here, last year I think, to the "Spoons theory" which explained it very well - you could search for that.
We have some things in common--I too live in the US and my RA arrived the year I retired. The fatigue is the worst, but that might be the good news. I think if the pain was the worst, we'd be in worse shape. I can't take methotrexate because of my liver so the put me on sulfasalizine with steroid injections every 3 months. The best advice is to list your priorities each day, pace yourself, and rest often. Best wishes to you!
Welcome to this site you will get a great deal of support and information on this site.
You will realize that fatigue you feel comes with the territory, as it is part of the immune system.
We can learn from you how the USA deals with this condition and the medications you take
I have Psoriatic Arthritis that I have. had now for over thirty years We take NSID medications with pain medications, and DMARD and BIOLOGIC medication.
The medical staff we have dealing with our conditions is a GP, RA Nurseest and Specialists, I understand that your system is different to ours, will be interested to know the system you have over the periods you visit this site
All the best
I am from Illinois in the USA. I began suspecting that I had RA last year. Went to my GP who ran tests. Since all but one were negative, he dismissed the RA even though all my symptoms seemed clear. I asked for a referral to a Rhuematologist, who finally diagnosed me. I can tell you that our treatments sound very similar as far as medications go. I was started on prednisone and hydroxychloroquin. When the swelling and pain came back after pred, I started mtx pills and folic acid. I have switched to injections now and also take an nsaid. I am hoping it will be effective soon as I was just diagnosed last October. I don't see my GP at all for this. However, the course of treatment sounds similar so far.
Do you have RA Nurse who checks up on you and your bloods? How often do you see your GP and Specialist?
We have regular bloods and also see our RA nurse at a longer period, we may see our Specialist every six months or so.
If we have problems we have to call the nurse, who will make day to day decisions regarding the taking of DMARDs and BIOLOGICS. if we have severe contraindications
All the best
The nurses work for/with my RA doctor, but I always see the doctor when I have an appointment, which has been every 6-8 weeks. I have blood work done just prior to that appointment and the doctor reviews them with me. If I have a concern, I can call the nurse. She usually has to talk to the doctor about my concern and then calls me back.
The whole system is changing though with Obamacare, (I am NOT a fan) so within the next 12 months, the current way of doing things may be different. =/
Yes I have heard regards Obamacare, I thought that was having some real problems, and some other things are really going pear shape. All seems to be falling apart ?. Getting concerned.
Again welcome to our site and hope you will find the chat and support useful.
I live in Northern England, 8 miles from the Scottish Border, I come from Border Riever stock as does my wife.
All the best
Obamacare will turn healthcare upside down here in the US. It has had nothing but problems and will completely change life in this country. It is just another example of a government takeover gone bad. Sorry for the rant.
Thank you for the welcome. I have found lots of good information here. The support I get on this site is much appreciated!
We all can be good ranters here, enjoy, we do not complain
Despite what they might tell you, medicare has never worked out here in Aus and I believe Obama used our model so I dont think it will work there either.
My hubby and I have worked in health all our lives and we think all it has done is encourage the people to shop for bulk-bill only health places. 5 million out 23 million aussies are on some sort of social security benefits and anyone receiving welfare is usually only charged the medicare rebate... so because they are not paying anything, they go to the doc for the tiniest and stupidest things ie. things they find on their bodies that are normal structures, or another favorite is that they go back time and time again despite the doc saying there is nothing wrong. Then because the doc wants to make money, (obviously getting just medicare pays less than gap docs get) they shift them quickly through like cattle which means its easier to just order loads of unneeded tests (because its free). Even when tests are warranted, they order the wrong ones or tell radiology the wrong place to look because they failed to examine the patients properly so their tentative diagnosis is way off. And at the end of it all, there are waiting lists in the public hospitals like 4yrs for a knee replacement or where I am, at one point there was a big stink because even children with brain tumors were waiting for 5 mths to have them out!
Well that's my rant for today...haha... sorry I got carried away But welcome to the forum!
Hi, You were in the same position as me. I retire at the end of the month and was diagnosed with RA last December so have not started treatment yet, next week is start week. I find your comments about methatrexate actually comforting because I've read so many stories where it makes people nauseous. I can't offer any advice because I was thinking this morning I start every day in pain and stiff then spend the day managing it. Take care x
Hello. I did feel a little nauseous when I first started the methatrexate, but as my body adjusted to it, I just feel tired. I take it at night so I sleep through most of the side effects. I just don't plan anything for the next day because of the foggy head feeling. I am scared of the biologics' side effects, so I hope methatrexate continues to work. I also take a low dose of an antidepressant because if I didn't, I would ruminate about my pain. I find the antidepressant helps me accept my condition.I hope it all works out for you.
Hi Nevadawoods, welcome! I am in Central England. I started off with polymyalgia rheumatica in 2010, but that changed to RA after a while. I am on methotrexate and take folic acid for nausea and mouth ulcers. Am going through bad flare at the moment, my rheumy team have started me on sulphasalazine as well but have only been on it for 7 weeks and it is supposed to take 12 weeks to kick in. I have also been put on 8 weeks of steroids to help, but I am still in great pain and cannot walk far. When suffering from fatigue, I just rest for a while then try again. Good luck! Anne
Thank you everyone for the kind welcome and the advice. I haven't found any forums from the US. like this. My medical system is that I go to a doctor--a rheumatologist --every six months. I have my blood checked every two months. I have been at about the same level since 2004 as far as the destruction of my joints, but I also have developed degenerative arthritis on the ruined joints. I love to craft and even sell on an online shop, so I try to ignore the pain and still crochet. I was doing water aerobics quite frequently, but then life got very complicated. We had a major forest fire, were evacuated, (our house was saved), and then I had to do lots of traveling in the fall. I have a horse and used to ride 4-5 hours, Since the RA, I am always frightened of being thrown and being severely hurt), so I am not confident and rarely stay on my horse for more than a half an hour. I think the hardest part of this disease is knowing its limitations. I don' t know anyone else who has this disease, so I was searching for some answers and some support when I found this forum.
Hi Nevadawoods, welcome! I live in the US, in Nebraska-all my life. I have JRA (Juvenile). I like to meet others from the US because we don't have a site like this there.
I take Mtx & Arava & prednisone & plaquenil, and several other pills for IBS, kidney stones, Sjogrens, and osteoporosis. I'm lucky, in that the only symptoms I've ever gotten from Mtx is mouth sores that I combat with Folic Acid.
I saw my Rheumatologist just last week, while in the midst of a full-body flare, and he said that I am getting to the age (45) to where I may suffer from OA too. NOT what I wanted to hear. I am feeling better-except for my index knuckle on my left hand.
I have learned a lot on this site from others' experiences & questions & hope that you do the same.
Well I'm also a mountain dweller, but in Europe not the US, so maybe a slightly lower altitude than you. I'm also on MTX (plus sulpha & Hydroxy) and have foggy Wednesdays, but now I just plan around them and try to avoid needing to get up too early that day. The thing that's helped the tiredness most for me is diet & exercise so really do try to live a wholesome life. I reckon if it wasn't for the RA I'd be in the best shape I've ever been. I've also learnt to stop regularly, even if only for 10 minutes. And the worst is getting overtired, as it can then take days if not weeks to recover. So I hope you've learnt to stop? It's frustrating if you want to finish something, but I've found it makes a difference. And my latest one is a new mattress! Don't know why I didn't do something about it before, as our mattress has been soggy for ages now. getting a new one seems to have improved my sleep hugely, and I wake up with a slight sensation of having some energy! Polly
Hello Polly, I bought a new mattress a couple of years ago. I figured any comfort I could get would be helpful. It has made a difference. I was exercising regularly and was on Weight Watchers most of last year. I think you are correct in that it helps give more energy. I will be going back to both in February.Where in the mountains do you live? I have been to the Swiss Alps and the Pyrenees. I live at 7200 feet, which I don't know how to translate into European measurements.
Hi and welcome. I was diagnosed with RA in 2011 and live on the mainland of Orkney, an archipelago off North East Scotland. Our house is sited near the top of a steep hill - but I'm sure it would be like base camp for you (and Polly too)! I can do most things physically these days but I'm often ridiculously tired. I stopped taking MTX after 18 months due to troubling side effects and am presently only on Hydroxichloraquine - but I think I'm doing well for the time being. Most of my present problems are with dry eyes and icy feet - not exactly RA but thought to be RA related. I can't do European measurements either!
Thanks I'm fine - just a bit of Raynauds in feet and Sjogrens in eyes they think. Apparently these can come secondary to RA (mine seems to have done a vanishing act just now however - yippee!). Tilda x
HI there and welcome to the site... I'm an Aussie so yes there are people from all round the world on here. I also couldnt find a forum like this from my country so the poor Brits have ended up putting up with me and to be honest, they are a wonderful bunch of people with lots of useful hints and a good ear when you need it
Hope you enjoy it!
Hello fellow USA'ers: I din't realize there were any others her from the states. I've been here for over 2 years. Hav had PsA for over 30 yrs, RA for bout last 12 yrs. Have taken the usual gammat of DMARDS nd NSAIDS, now taking Arave (leflunomide), MTX and the biologic Simponi, a once a month injection. So far, I can do most of what I want or need to do. Have had PsA of spine and hnds and feet and have had 8 spine surgeries, both knees replaced, 3 hand surgeries and a reconstruction of right wrist. Other than that I'm in great shape lol.
I live in Northern Ohio, just half way between Toledo and Cleveland.
If you have been reading all the posts this week, you would have seen the incredible group of people on this site stand together to honour our dear friend, Ronnie aka Fiona, who passed away Saturday afternoon. She was a very special lady, very intelligent, with an awesome sense of humour. She had RA very badly, but always had kind words for others, and always found humour in so many points of every-day life. She will be so very missed by all of us. Some of us were close with her,I have been honored that she took a liking to me and we emailed several times a week. It breaks my heart that that will no longer be.
But, I wanted you and other newbies to know what a tremendous group you have just joined. Welcome.