Hi, my name is Ursula (Ursh), I was diagnosed with RA in 2015. It has literally blown my mind! I wish i had found this site sooner. No one really gets it. I have no one around me who has any understanding of what is or how it feels. As soon a you say the word arthritis, people say, it must be your age (i'm only 48!!). When you say its not your bones, but your immune system going mental, they look at you like your off you rocker.
I think i'm one of the luckier ones. I was referred immediately to Rheumatology by my doctor after one visit where he took my blood & it came back with high inflammation markers. It did take 6 months to get my initial appointment with a consultant. I wish someone had explained right at the start how difficult it can be to get you on a drug regime that works for you. Each time i started a new drug i was told you'll start to feel better in 12 weeks. It has taken two years. I was started on hydroxychloroquine (no effect at all taken off it), then Methotrexate increased to 20mg a week (no effect, still on this), Sulfazalazine (no effect, still on this). My blood results have shown that my inflammation has increased month on month The only thing that has worked for me, until recently, is oral Predisinole (steroid), injections of steroids have had no effect whatsoever. Weird. Then i was prescribed Benapali, (Etanercept) self injections at home, 12 weeks ago. I haven't had to take a painkiller since the very first injection!! I feel like i'm in a dream. I am still getting mild pain in my ankles, but nothing anywhere else. My left elbow, which has been bent at an angle of 30 degrees for the last two years, is straight! Has anyone else been through this? I feel like i'm making it up, or like its all going to come rushing back at me. By the end of next week i will be steroid free again. I know i'm not cured, because that doesn't exist, and that i'll be on medication for the rest of my life, but i feel really good. It all feels very strange. Has anyone else experienced this?
Thanks for reading my ridiculous blather.
Look forward to hearing from & making new friends.
Ursh
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Tazer
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Culprits are often meat, wheat, sugar and dairy, but it varies from person to person. It's something you have to experiment with and find out for yourself what helps.
The first thing I dropped was meat...only meant to do it for 2 weeks to see if it made any difference, and never ate it again and that was in 1982! Sugar also is a problem for me...I vary in how strict I am depending on how my joints are. At the moment I'm avoiding, dairy, and wheat and restricting sugar, and not eating meat of course!
I've fought RA for almost 40 years and mostly, until fairly recently, without the help of drugs, and think it's worth persevering with alternatives to lessen the burden.
There was an interesting 'food hospital' programme a few years back which looked at this, channel 4 I think.
Know what you mean, have had R/A since 18 (nearly 58), but have been laid up now for 23 days, with other back problem, and no one seem to been in any great hurry to help with pain or getting me back on my feet, hospital appointment not until 27th July. need to get back into work, these days they do not like long time off sick. so when you find a way to get "your up beat person" back, pass on how you did it, some of us on here could do with the help as well. stay strong and now you have a place to talk. I also agree with Matilda7 about food, I have find red meat and pork is not good for me, but also weather like the heat above 27oC and the very cold, which we do not have down this part of the UK where I live.
Poor you! That is hard, 23 days is a long old time with chronic pain. I've heard mediation can help with things. Might worth look into. There will be a time when it's not so rough. I know what you mean about sick & work. In the industry i'm in they say never be sick & never be late. I don't get sick pay either, so if i don't go, no money.
I try to distract my down feelings by doing something i really enjoy or have promised myself i will do but never find the time. So for instance if i'm feeling really rough I'll watch a film that i've been meaning to. That way i trick myself into thinking I'm still functioning in some way. At least it gives me something to talk about if i've not been able to go out.
My main frustration comes from people who think i'm being boring because i don't want to do things. No! I'm genuinely not very well, please go away. Just because they can't see it does not mean it isn't happening.
I don't think i'm affected by the weather, which is a bloody good job because it's always raining & we get a bit of snow & cold in the winter up here int' North.
Yes, the feeling that nobody gets it is failrly ubiquitous in the chronic illness world, and definitely the RA world. Hence why lots of people prefer to call it Rheumatoid Disease, because the word arthritis tends to illicit the 'my gran had that' type of response. People don't know the difference between Osteoarthritis and Rheumatoid, and while OA can be a nightmare for some it generally doesn't come with the same systemic involvement of RA.
Good news that you found a medication that works, and it just shows that when we say it can and does improve we're not lying! It took a bit longer for me, about 10 years of [insert DMARD name] and I either had no response or had bad reactions to them all. Then I went on Infliximab and had a similar response to yours, until I developed antibodies to it and had to try enbrel (which didn't work) followed by Humira, which has kept me in remission for about 8 years now. In fact my last bloods were remarkably low. Fingers crossed it carries on that way.
MTX did help somewhat, but ultimately the side-effects were not tolerable for me. Some have no problem with it, luck of the draw.
Thanks Ade. Its a such a relief to hear there are other people like me & have had similar experiences. I have nothing to compare it too so am unsure whether it is 'normal'. My rheumy nurse is fantastic, but they still don't get it, if you know what i mean.
It seems like everyone's experience of RA is uniquely similar - if you get what I mean?! There are lots of strange symptoms that not everyone has, but if you ask on here there's almost always someone that has had a similar experience. Same with the drugs and side-effects.
Although sometimes the line between disease effects and drug effects can become a little blurred...
It takes some getting used to for sure, but this is a good place to compare notes. I wish I'd been more inclined to seek out fellow RA'ers when I first got ill, instead I think I didn't want to know how bad it might be so buried my head in the sand.
Osteoarthritis is often described as wear and tear arthritis and tends to occur in older people often in the knees, but can affect younger people in any joint. Sometimes happens in joints that have been injured.
Rheumatoid is an autoimmune condition where the immune system goes haywire and attacks the synovial joints. It can also involve other parts of the body such as lungs, heart etc and causes many other symptoms such as fatigue, malaise etc.
The only common thing is painful joints, but in RA these tend (but not always) to be widespread and symmetrical.
So pleased for you this RA ruins so many everyday things in life. I also am on oral steroids and have just started Humira which isn't working yet. But could you please advise how you reduced your steroids as this is what I want to do eventually if Humira works. You must be pinching yourself every day .So very pleased!
I reduced my steriods with the agreement of my Rheumy nurse & she advised on how to do it. I wouldn't alter my meds in anyway without the right professional input & advice. I Would have a chat with your nurse & see what she advises. Good luck with the Humira. I hope it works. Hang in there. When they find what works for you it's worth it.
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