Not a happy bunny :/

felt ill on and off for the last 4 weeks..weird tingling in hands and feet and also cold shivers like cold shower. Thursday night felt very tired and weepy..woke up in the morning with a beautiful red tight rash over my face like a bad face mask and a cold sore. Saw GP and have got erithimycin and cold sore cream. RA clinic told me to stop all drugs until I finish my course and all symptoms have gone..So fed up as feeling worse that I did when I first started on DMARDs.:( gentle hugs..anyone else had this xxxx

12 Replies

  • oh dear did he say what it was?? allergy/ virus? not lupus I hope?. could be roscea?

  • Hi Summer. Thank you for answering my question. He didn't know as it wasn't itchy and was only on my face. Exactly like a red face mask and the cold sore. He thought maybe they could be linked but not for definite. Never had this before seems limp from one thing to fed up. :(

  • I had a butterfly type rash on my face over several days after exposure to the sun - only a little it needed! So you might try not using face cream with any perfume in it. It was to do with the reaction between perfume and sunshine on my skin. Just a thought, sounds like you've got more t han that.

    Hope you get to the bottom of this

  • Thank you for taking time to answer my question Cathie got bloods done today to although off my meds. I hope it is not something else to add to my new resume of disasters. take care

  • If it hasn't already been taken you should perhaps ask for your ANA to be done (blood test for various things a bit like the Rheumatoid Factor) and if it was done a while ago ask for it to be redone? Hope you feel better soon - I feel like a bit of a disaster zone myself at the moment so understand how you must be feeling a little. Tilda xx

  • Hi Tilda. What a shame are you in the wars too..this is totally pants. I had a high Mono the last two times I had my bloods back though nothing was explained. I am sero-neg for RA so not sure what is going on. get a review in May but with the heard RA nurse.Gentle hugs and take care. xxxx

  • Maybe do some research into SLR/ Lupus Rockpool - the butterfly rash and sero negative thing might go together - but don't panic. It's just that if your diagnosis has changed then you might be put on more appropriate medication and might end up feeling loads better for it so worth doing your homework. I don't think an RA nurse would be able to make a re-diagnosis though but maybe wrong and they could certainly fast track you to a consultation. It would be a good idea to photograph your facial rash for the rheumy's record too. Tilda xxx

  • Thank you Tilda. Will look at the information on those you have mentioned. Just seems strange after being almost a year on MTX and Hydroxy that this has started. I also had a reading of 1 in the Mono bloods feel a bit of a loss with it all. I don't feel any better today than I did when I got referred. Gentle hugs xxxx

  • Sorry but not sure what mono bloods are Rockpool? If by any chance this was SLR (a butterfly rash can be a sign but it could also be rosecea or something else) then these may well be the drugs you would be taking anyway I believe - Hydroxy especially. On the other hand if you are off all your drugs now then its hardly surprising you feel bad. I know I feel lousy after a month off mine. Xxx

  • I think you are tired Tilda - you probably mean SLE (lupus) rather than SLR!

  • Yes permanently knackered and working with images off husband's SLR tonight. But at least I didn't say ESR!

    Sorry Rockpool. Not to make light of what you are going through. I do think knowing what blood tests mean and following the clues our symptoms represent is really important with all chronic conditions. If you are told things by heath professionals then make sure you ask the questions you need to know answers for. Don't be put off by their busy "we know best" stuff. Its your body and you have a right to all the information and can learn how to understand it better yourself too. Xxx

  • Ps looked up mono and I think you should perhaps make an appointment to see your GP and ask for an explanation of what your test results may mean and what might happen next for you. Its horrible just being told stuff and then just being left in limbo so I really think you should talk it all though with a health professional as soon as you can get an appointment as it may put your mind at rest more if you understand everything better. I know it would me. X

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