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hey guys,

I am in so much pain, have felt like this for two weeks since coming off methotrexate a month ago and switching to Arava(proving to be useless). I am exhausted, dizzy, feel sick, painful joints, painful muscles in tops of arms and thighs (feel bruised cant even be touched), costochondritis..really bad chest hurts all over aswell as in normal costo places!, headache, cold sweats...like all my lupus symptoms at once really bad...have been on prednisolone for past two weeks and keep trying to taper it down but any less than 30mg and i cant even walk as my ankles swell up and so do my fingers! but my ESR is 9!! how can this be?! i feel the worst ever and all my blood work is fine! My gp probably doesnt believe me at all...have brought forward rheumy appointment to next tues(18th)but is he going to believe me when my blood work is so perfect? why is it not showing up?! theres got to be something making me feel so ill..i havent been able to work or anything. has anyone else had this problem? sorry really long post..but i am actually feeling really down now..is this in my head?! xxxx:(
 

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Hey there,
Sorry you're feeling so rough. Tis definately possible for it not to show up in blood tests (sometimes they take a while to catch up etc). The fact that you feel so awful, to the point of taking time off work, should be more important to any decent doctor. If I was you I'd stay at a fairly high level of pred, so you feel at least semi-comfortable, load yourself up with painkillers, and ride it out until your appointment. When you see the doc, don't leave the office until you've got something other than avara to try - have azathioprine or cellcept been mentioned?

Take care :hehe:
 

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Many of us here NEVER have an elevated sed rate yet still have gotten diagnoses and treatment for lupus based on our symptoms. Do you know if they have tested complements? My c4 tends to go low when I'm flaring, but not always; and my sed rate is always normal even when I've had visually swollen joints. I am treated largely based on symptoms, as my bloodwork is usually pretty normal with the exception of high ANA, low c4 and occasionally mild neutropenia.

So a good rheumy will not bat an eyelash at normal bloodwork while you report severe symptoms. He/she will treat you accordingly, and will hopefully teach your non-believing GP a thing or two in the process. ;)

Hopefully something else will be tried and will prove more helpful to you.
 

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Discussion Starter #4
hey guys thanks for your replies...my esr normally goes up to the 40s so i guess i just assumed it would. its good to know it doesnt always show on bloodwork, although i did only have fbc,esr and crp done. Thanks for the advice fairy I will do just that, although i just hate pred cos it gives me a fat face!!! aza has been mentioned before but for some reason he just decided on arava. i will say i dont think it works though. and im not giving it any longer i cant cope!! maia thanks for the reassurance...my rheumy is great im sure you are right and he said he always know as soon as i come in the door if im bad or not cos i get really down when its bad and im all bouncy and happy when im fine lol. My boyfriend was also really sweet and said he knows im poorly because im sleeping about 20 hours a day! lots of love xxxx
 

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my esr is always normal, but my flares are reflected in my anti-ds-dna's, complement levels and wbc etc. But, my doctors just go by how I feel in terms of my treatment. Blood tests can lag behind a couple of weeks (at each end of a flare - so it can also still look rotten when you are actually getting better).

feel better soon

raglet
 

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Mooks sorry your feeling so unwellfeel better soon hun

((((((((((hugs)))))))))) Lin xxxxxxxxx
 

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Mooks, I had a similar experience recently when was put on Imuran. I was also taken off MTX at the same time and within 24 hrs. I was in terrible pain. Everything came rushing back. So I'm back on the MTX until the Imuran kicks in. My ESR is always normal and my rheumy treats me on my ANA results and symptoms (bless his heart). He told me some people just don't reflect their inflammation in their blood work. He also told me some doctors wouldn't treat me at all based on my low SED rate and ESR (are they the same thing?) but fortunately, he's not one of them. He believes my pain and knows you can have normal blood work and still have a lot of pain.
 

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Mooks,
Has anyone thought that something else might be going on with you? By something esle going on I mean arthritis. I have ra with the lupus and can life pretty hard at times. I know what you are talking about when you say muscle and joint pain all the time. I am sorry that so much is going on with you it sounds like they need to treat one thing at a time and try and find out if there are other things flaring up for you. Gods speed for help with the pain you are in.
Tammy
 

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Hi

My bloods are always completely normal, no matter how bad I am. My rheumy just treats me according to my symptoms, so your normal esr shouldn't be a problem to being believed.
 

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Mooks,

My doctor has taken my blood when I feel great and my sed rate will be in the high 40's.

Then when I feel like I have been hit by a train it will be totally normal.:eek:

Who's to figure with this mystery disease.

Hope you get feeling better soon.:wink2:
 
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