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The vortex of insanity!
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Discussion Starter · #1 ·
Because it's just my luck!!!!!! I've been flare-free for almost 3 years, but I'm starting to get into one 1 week into a month long trip. I'm in Ireland, originally I'm from Chicago. I'm on plaquenil but it (STILL) isn't doing anything and my doctor doesn't listen to me when I tell her this. She brushes it off and won't even explore other options so basically all I have here is plaquenil and aleve.

I'm trying to decide if I should be trying to walk around more or less? My legs are really achy but I feel lazy sitting around inside. I haven't been sleeping well for the past week, and I'm very stressed being away from my best friend who lives in Seattle because of the time difference so none of that is helping. Previously I was trying to run to lose weight that I gained after surgery, but there's no way I can keep that up now. So suggestions? Run, walk, or sit? Chocolate? I also just got over food poisoning so please don't suggest cheese (I don't know why you would :p just don't)
 

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You poor thing...what a welcome to the UK! I know the weather and air pressure here can affect us Lupies pretty bad. I am on Plaquenil but it doesn';t seem to do much, so I mainly rely on diclofenac painkillers, or nurofen if I run out of the others. I find that if my joints are really swollen then resting is best to let the immune reaction burn itself out, then when the swelling goes down I walk a bit just to get the joint moving again. Be gentle on yourself though...sitting inside can be very rejuvinating! I also like to drink ginger tea, made with fresh ginger if you can get someone to make it for you...just calms the system down a bit...
Hope the rest of your trip goes well,
RM
 

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Hi there and a great big welcome to my part of the world :)

Im really sorry to hear you are flaring though. What an absolute bummer for you.

Im really not sure how best to advise you while you are here. If you are flaring then rest is really the best thing to do - certainly from my experience. I wouldnt keep pushing myself if I were you. I wonder though do you need to seek any medical attention? Are you staying with friends? What part of Ireland are you in? Do they have a family doctor that could see you or advise you?

Its very difficult being so far from home but as you say, your own Rheumy probably wouldnt be doing an awful lot to help you anyway:( Have you ever considered trying to change doctors? Sometimes our docs can get complacent when we have been with them for a while and it takes fresh eyes and an understanding specialist to have another look at things and see what else might be needed if your disease isnt being controlled well. Mind you, you do say that you havent flared for three years so maybe its just bad luck that its happening now and you might need something temporarily to try and knock this flare back quickly?

Can you contact your Rheumy anyway to let her know that you are unwell? There might be something she can do or suggest which would help until you get back home? Even stronger painkillers might help some of the pain?

In the meantime, go out and get yourself a nice big box of Cadburys Chocolates and, if you can, rent a few DVD's, put your feet up for a day or two and then reassess things. If you think I can be of any help (knowing the medical system here) just let me know.

Much love
Joan:rose:
 

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Hi there,

I'm sorry to hear that you are rather "stuck" and not being in the Irish medical system might make it more difficult to get some help.

As a short term solution for your trip you could maybe try one of the "drop in" clinics that are privately run and where they don't mind patients "dropping in". Mum has used them at times as her GP is criminally negligent. They are quite dear at around 90 euro a go but Mum found that she got extremely good care and advice and actually got examined (something her regular GP never does). They might at least be able to prescribe some pain relief... but as Joan said, it would be best to at least inform your rheumy even if it does sound very much like you need a new one.

As to the chocolate. I love Twirls, you can't get them here. All the yumminess of flakes without the flakes if you see what I mean!!

Katharine
 

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I don't suppose you purchased travel insurance? I'm not sure if we lupies would even be eligible! My grandmother got insured though or her last big trip to Norway to see her homeland and we were very grateful they got her the insurance as she has a month long hospital stay after a stroke there!

I would definitely advise rest as much as you can and try to get a little walk in if you can tolerate it. Too much rest can be just as bad on my joints as too much activity, and this will keep your stamina up a little bit.

I am hopeful for you that this flare is a short term consequence of the stomach flu. I've had the stomach flu far too often the last few years (having a young daughter now!) and I always flared up following recovery. I was usually better within a few weeks - in terms of back to my "normal" state for me at least.
 

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The vortex of insanity!
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Discussion Starter · #6 ·
Thanks everyone. Joan - I'm just 18 now, so I'm sort of between doctors right now, I have to find a new one for college in any case (sort of trying to find my old doctor who moved to the same area as I'm going to college in, if he'll have me back!). I keep saying I want to switch doctors because this one drives me nuts, but my parents don't want me to because they like her, apparently. Also, we're in Galway, my dad's workign at the university for 6 weeks.

Maia- I don't think we got travel insurance, my mom's going to contact my doctor in chicago on Monday if I'm not any better. Hopefully, like you said, it's a stomach flu issue, I know viruses are often a huge trigger for me, but we also had a very stressful trip involving lots of missed flights and lost passports so that could be it, too.

Going to try and rest as much as possible, though my mother drags us all around because she loves hiking and site seeing. But I will try and take it easy even on these outings.
 

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First of all please say hello to Ireland for me. I have family there and have not been over to see that part of Europe yet but believe me I will get there soon.

Now, I am sorry to hear your flaring and in another part of the world away from your doctors and what is familiar to you. That is scary. I am sure your mom will get some answers when she talks to your doctor on Monday.

I think you need to rest, eat chocolate and let the rest of the family go sight seeing. Do not push yourself too much. You may regret it if you do.

I am leaving for France Monday and I am nervous about becoming ill while over there also. The thought of it scares me.

Good luck and keep us posted.:wink2:
 

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The vortex of insanity!
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Discussion Starter · #8 ·
My doctor just told me to go on a higher dose of plaquenil despite the fact that it makes me nauseous, dizzy, and has yet to do a thing. She promised me it would prevent a flare up, and yet here we are, so I do not trust that going on a higher dose will do anything. I am in a ton of pain but she won't discuss stronger meds and here you apparently need a prescription to get aleve?! So I'm stuck with the tylonel w/ codein I have left over from my foot surgery, really down today, I haven't slept in over a week, I have a friend visiting me here and I can't do anything with her and she doesn't understand and I think she's mad at me, so this is just bad right now.
 

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Hi again,

I would urge you to go and see a doctor there. Even if a higher dose of plaquenil was going to help, it wouldn't help fast enough. You obviously need help fast. They have to be able to do something for you in such a situation. You can't stay there, in a foreign country making yourself iller and iller which may have consequences for a long while to come.

sorry I can't help more :(

Katharine
 

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Hello Applesauce

I am so sorry you are struggling just now. :(

Friends can be a bit frustrating sometimes and you have to really spell things out to them I find -- saying "I am in pain, I find it hard to walk, I feel miserable" might do to start with. This is especially if you look Ok whilst feeling rough - lupus is a bit of an invisible illness if you don't get the face rash. Can your friend not just visit with you if you are not well enough to go out and about?

I agree with Katharine, you need to see a doctor in Ireland. Plaquenil can help at higher doses but in my experience is rather slow acting so would not deal with these pain symptoms you describe very quickly. If you can deal with the pain a bit better you might feel more cheerful, pain is very depressing I find.

You can get prescriptions as a visitor no problem. Are you in a hotel? If so they should be able to call a doctor for you or give you or your mum a number. Just getting better pain medication or something else to damp down the inflammation will make you feel better.

Other thing is to keep resting, and I mean resting, legs up head on pillow, chilling. It may help more than you think. ;) even if you can't sleep. You could discuss your lack of sleep with the Irish doctor too.

Sorry I can't do more to help,
gentle hugs
Sara x
 

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The vortex of insanity!
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Discussion Starter · #11 ·
I got five days worth of prednisone, and am scheduled for yet another rituxan treatment when I get home...They don't want me taking too much steroids since I've already got bone problems from being on such high doses for such a long time...but maybe it'll help, I don't know.
 

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Hi... did this prednisone come from the Irish doctor?
You sound a little more positive. Lets hope it works for you.
Love Sara :)
 

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The vortex of insanity!
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Discussion Starter · #13 ·
Yeah, and actually the nicest thing about it is it's coated pills! Am I the only one who has been forced to swallow non-coated prednisone?! It's disgusting. You can still taste it even if you swallow it right away and if you get it stuck it takes a full day to get rid of the taste!

You know your life is weird when coated pills make you this happy :p
 

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Hi Applesauce

I think you got some of the old stock of prednisone ;) They stopped manufacturing the coated steroids a while back but Im sure some pharmacies still have some stock. Lucky you! :)

I hope they help you over the next few days. It's always a risk taking steroids especially when you already have bone problems but I should think that a five day burst in your circumstances is a risk worth taking.

I hope you pick up over the next day or two and enjoy whats left of your holiday. Let us know how you are doing.

Take good care and I'm sorry your trip to Ireland had to be like this.

Love
Joan:rose:
 

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Hi again applesauce
You should try the taste of mepacrine... yuk yuk yuk, bitter and revolting and taste lingers. And the yellow dye.colour gets everywhere.
Have a good day tomorrow.
Sara
 

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same thing happened to me - currently holidaying in Canada, live in New Zealand. I have brought extra prednisone along with me, so I emailed my rheumie in NZ and she increased my dose. Bit of a bummer seeing I have so recently had rituxan, but it hasn't been too bad and the extra pred has really helped.

hope you feel better soon

raglet
 

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The vortex of insanity!
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Discussion Starter · #17 ·
Officially out of prednisone and I don't think it did anything. Shockingly, the plaquenil still hasn't kicked in (I've only been on it for 6 months, she keeps saying "oh just give it time it'll work, the side effects will go away, just be patient"...). So I'm back down n' depressed right now, I am supposed to go horseback riding again tomorrow and I've refused to let my mom cancel it but either I'm going to have to or I'm going to have to really push through to do it, and I'm not sure which I want to do. I'm getting nervous about having more rituxan when I get back but that's so far off anyway there's no point in worrying. Sorry, slightly sad update there. I'll work on getting better and give a happier one later, hopefully.
 

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Oh dear :sad:

Im really sorry you still feel so poorly. To be honest I would be very mad at a doctor who told me after six months taking a medication that the 'side effects' would get better :(

It certainly is true that Plaquenil can take up to nine months to make any discernible difference for some people but I would have thought in the meantime that the doctor should be trying to treat your symptoms to give you a better quality of life.

As you have turned 18 now I hope your parents respect your wishes to try and find a new doctor. They might like your current one but it doesnt sound like the relationship is working for you. As an adult now you really need to have a say in this and I wish you the best of luck.

Personally I wouldnt try the horse riding tomorrow if you are in so much pain:hugbetter:

Much love and hugs
Joan:rose:
 

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Oh am so sorry that you are still struggling like this. On holiday too, what a *** deal.

I think all of Joan's advice and comments are really really sensible. And I definitely agree about skipping the horse riding. I have learnt my lesson in this flare I am having to stop pushing things and think I can handle more than I realistically can.

I do hope you feel a little better when you next look into the list. When do you go back home? Is it worth speaking to the Irish doc again perhaps if you have to stay over here for a lot longer.

Much love
Sara x
 

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(((((( applesauce ))))) What a booger of a holiday you've had! I've gone back and read all your posts and see something that leaps out at me: sun. If I was spending so much time out in the sun (regardless of sunblock, hats, long sleeves, etc.) I would be very sick and nothing would help. Can you try staying out of the sun for a bit and see if at least things don't get a lot worse?

Otherwise, it's time for a new doctor when you get home. I'm so sorry you're having a tough time while you should be having fun. It just isn't fair! :worried: Please take it easy -- yes, cancel the riding -- and find a good chocolate source and a decent novel to spend the rest of your vacation with. I hope you feel better soon.

Sunny
 
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