I'm a registered nurse with a wonderful blended family 3 lovely kiddos between us. I was diagnosed about 3 months ago following months of painful joints and exhaustion. I had made subtle adjustments to daily life such as a lighter coffee mug and flipping my heavy bamboo pillow at night without even realizing what I was doing. I was just getting by and making life "easier".
The hormones were my trigger. I had actually been diagnosed at 23 after a weird wrist and hip pain came on suddenly (and I had started birth control pills). The connection of that was missed, but I was worked up for Lyme etc and told it was RA. Being 23, I thought the dr was an old batty wacko and went about my life. No issues, nothing at all until 6 months ago a few years after a hysterectomy.
I was told by my GYN my estrogen was nonexistent and that joint pain was common in menopause but to see a rheumy. Sure enough (as I knew being an RN it was without doubt there) my X-rays and labs confirmed RA with significant joint damage in most of my fingers. I started on mtx and diflocenac sodium which was rough. I felt after 7 weeks it was manageable then had a terrible flare after picking weeds and doing yard work. That next week I set back almost worse than prior to meds. I started dizziness also and actually blacked out. Could have honestly been lack of sleep vs meds as sleep was impossible no matter what I did.
Now I'm on Arava. Which I'm convinced is evil. My hair is dry and breaking, my pain isn't yet under control consistently at all, I'm so nauseous I pop zofran like crazy.....it's quite miserable. I can't think straight at all and feel I go in circles. I'm going back to rheumy and hope she is willing to work with me. I would prefer the mtx to this stuff and that's not a good fit either.
Being a nurse I'm so tempted to research like crazy and just ask for what I want. But wanted to remove myself emotionally and be guided and these directions made for me by an expert (I tend to over analyze and the stress of it all I kindof let her take the wheel). But I want my life back - so I'm going to try diet changes and start my research. I don't want to switch meds up so much but I'm realizing as my husband tells me to "respect the disease". Not easy. It's really an SOB.
Thanks for listening
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Shanrn
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Hello, where are you? The meds you refer to dont seem famiiar to me (in Scotland). However, the NRAS website does have really good leaflets on most of the common ones which may help. I hope so !
I'm a nurse too (LOADS of nurses on here funnily enough) and I totally get what stage you are at. I'm desperately trying not to try to control everything, especially as my care so far hasn't been great. Its such a painstaking process - I am between DX at moment, ? RhA as I had pericarditis in January but most likely PsA (without the psoriasis) as family history and DIP involvement. However my spec nurse insists on assessing me as though I have RhA and I'm worried to death they are under treating me by ignoring my neck sacral and hip pain.
I'm on 17.5mg mtx and meloxicam and cocodamol. First off you need to see your GP for extra pain relief if all you have is diclofenac, you need sleep. I must admit my brain fog and insomnia are almost gone, so my 3 month flare is definitely over.
Thanks for your reply The diflocenac is doing a pretty good job for me of pain mgt - I'm not pain free but it's dull and intermittent and not at all like it was before. Hard to tell about the leflunomide it's only been 3 weeks, and the mtx prior had me feeling great after week 3 but then at week 6 the horrible stuff hit. I'm hoping she will switch me back, this leflunomide has terrible hair loss S/E for me, along with worse nausea and GI is opposite of what sounds typical - I'm taking colace now and drinking tons of water for relief and adding miralax to my morning juice. This is NOT my idea of my 40's! Lol.
For sleep - I tried to get into my GP (who I'm not a huge fan of but after mine left her practice and my NP girlfriend moved away I was stuck so went somewhere close to home for convenience). I need much more direction than what he offers and he allows even wants me to steer him and I don't like that - I need a strong physician, someone who can keep me calm when my worries sink in and give me a sense of it will all be ok. That's just where I am now. But he would likely give me a sleep aid I'm sure, I did Aleve PM and it has worked ok or I think I just hit a point of falling apart and giving in - hahaha.
I went from taking a multivitamin daily and an occassional melatonin for sleep - to taking a pillminder of stuff, so much I need an am/pm container leflunomide, folic acid, VitD, colace, biotin, diflocenac, fish oil, VitC......it's crazy to me. I'm trying to incorprate those solidly into foods and spent a bit of time at the healthfood store yesterday to make some dieterary changes to help with inflammation. I don't feel like myself yet at all. I feel like I need a good solid day of sleep and to regroup or something. The mental fatigue of it is more than I expected, and as you know we nurses are the ones who help others but when it comes to helping ourselves that's often a different story. It's an adjustment for me for sure! It's nice to find this forum.
Best of luck to you in your journey, I hope to chat with you again soon
It's not unusual to have to work your way through a number of drugs to find the right one(s). Unfortunately there's no way of knowing what will suit you without trying them. And then of course it takes months for good effects to become apparent, while the side effects often kick in immediately. Lots of people end up on a cocktail of 2 or 3 DMARDs. Currently, I'm taking methotrexate, hydroxychloroquine & leflunomide.
Whatever treatment you end up with, learning to pace yourself will play a big part in your management. (I'm having a laugh at myself as I type this - I've been struggling with this disease half a lifetime & still can't pace myself. ) I suppose maybe I should have written that you'll come to realise that doing to much will cost you - and then it's up to you to decide if the cost is worth it. Sometimes, though, with a job & kids, you just have to get on with it regardless.
Maybe better pain relief and some physio might help in the meantime until you work something out with your rheumatologist?
You've got the pacing yourself down right.....lol! My husband says I'm so stubborn and joked he is going to start his own forum for husbands of nurses who think they know it all in caring for themselves that is titled "RNs with RA lose hearing when hubby pleads with her"! haha. Doing too much costs me most definitely and to realize I can't even pull weeds anymore without it knocking me on my butt after I felt great is really challenging for me to accept. The setbacks are so frustrating when I keep telling myself I can manage ok. And as you noted - managing ok often means just living life as necessary with a family and kids in sports and activities and a busy career - hard to juggle when I was feeling great and now at times I'm hopeless when.
I'm confident it will get better and having this place is wonderful - I appreciate your feedback and support more than I can express. A big thank you
It's a horribe disease I was on Methotrexate for 4 years then gave up myself as we all know it does not really work well after that and I did not want to poison my system any more but it did help me a great deal at the time ,as always I find we have all been under major stress before we are diagnosed ,so now I have moved to the country ,live a quiet life ,I have had to befriend this R A and carry it with me daily ,say Good Morning to it and tell it to behave in my body !!!on a bad day I throw my pain into the refuse of the Universe!!!!every night I have 2 glasses of red wine and I can honestly say that's the only time I feel really well ..I.Iook forward to it very night !!!friends think I am mad but love the way I look at my illness my RA consultant laughs at me ...good luck to you my friend ....Rhian a pensioner from Wales who still wears her Doc Martens.........xx
Can I ask where you heard/read that MTX doesn't work well after 4 years Rhian? My Consultant was pretty thorough when talking through options & I don't remember him mentioning that or it being in recommended sites he gave me (homework!) or anyone here mentioning it. Of course many years have passed but it's got me intrigued as I do well on it & not come across that before. Thanks.
Wow, another Buckeye here! I'm so sorry to here of all your problems, and while being so young, too. Being so involved with the medical community, you might want to disregard what helped my condition, but I noticed a sense of desperation and a willingness to research in your story. If you approach your problem with an open mind and read my bio, perhaps I can be of some help to you. I truly wish you best!
It's interesting the connection between menopause and RA. Not to cast a shadow over any 'men' out there with RA, but definitely noticed once I got over my hysterectomy and oopherectomy the next few years changed my equilibrium.
As a relative newbie to RA (but probably walkig around with it for ages :{, I am learning a lot from this website.
If you want a laugh about weakness, I couldn't break a 'thin' bar of chocolate for my daughter tonight and she found that so funny! Me, well, I'm starting to take it in my stride and not get too down on myself about it all. There is enough stress trying to stay focused on the meds and getting through the day without adding to it.
Feel your frustration. I was in tears last night and finally decided to join a community and be supportive to others. I was diagnosed 3 yrs ago but suspect had it many years before. Anyway, I went on Arava about 15 months ago when Methotrexate caused multiple infections. No hairloss on Mtx. Well Arava totally destroyed my hair. Lost over 50% and whats left is thin, frizzy and breaks. Not to mention other horrible gastro side effects. I am going off of it and try another med. Didn't lose any hair on MTX. May go back to it. Arava is the worst for hairloss. And hopefully it will come back after its stopped. You have to take chlorastymine to purge it from your system because it stays in your system 2 yrs. Unfortunately no one can definitely tell which meds you will have these horrible side effects. Dr was shocked I never lost hair on MTX but did on this. Honestly, most MDs feel you should not worry about being bald and diarrhea , nausea , vomiting as long as your joints don't hurt that much. You basically are trading off one group of crappy side effects for another when you switch. I want my luxurious, gorgeous hair that people would stop me on thr street and ask me if it was really that curly or if it was a perm. Call me vain but RA sucks everything else out of you so I will try and keep one thing if I can
Hello Shanrn, thank you for your post, it's so comforting to know I'm not alone. I live in Belgium, and there is not much support, even from professionals, and not much understanding at work.
I came across this webisite/forum, looking for more info and understanding. My Rheumy just gives me 10 minutes each time, just takes a look, an writes another prescription. There are just not enough Rheumy's.
I'm on methotrexate and Arava, since one year. Yes, fatigue, headache, high bloodpressure...and worse, just as you, hair loss...luckily I had thick hair, so i'ts rather, well...allright. Skin is dry and a bit infected (yes, in the face..grrrrrr....)
I've been open about it at my job, and was so happy when I then could work one day per week from home. But then a new operational manager came along, and she is pushing me aside, telling me to go on sick leave. While I can still do my job, and everyone is pleased with what I do.
I try to keep on working, mentally it is imortant, I have no kids. And put a lot effort in my job, resulting that I had no energy left to see friends in the evening, or do fun things during weekends. Stupid me, I guess...
But bought an e-bike, so I could still go on bike trips with my lovely husband on sundays. Sometimes I do get out during the week, in the evening with a friend, so not to loose all of my social life, and then I take the next day off, to rest.
But that is what they do not see or realize at work. RA is a 'hidden' desease, isn't it?
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leflunomide, folic acid, VitD, colace, biotin, diflocenac, fish oil, VitC......it's crazy to me. I'm trying to incorprate those solidly into foods and spent a bit of time at the healthfood store yesterday to make some dieterary changes to help with inflammation. I don't feel like myself yet at all. I feel like I need a good solid day of sleep and to regroup or something. The mental fatigue of it is more than I expected, and as you know we nurses are the ones who help others but when it comes to helping ourselves that's often a different story. It's an adjustment for me for sure! It's nice to find this forum.
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how to get a new RA man - part 2
