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dont know what to do,or what to believe?

hi, ive had sle lupus since 2005, during this time i have experienced many different symtoms;

neasea, visual migraines, joint pain (everyday),fatigue(everyday), dry eyes, swollen thumb joints so i cant bend them, my legs are 100 stone each, stomach pain, blurred vision, weight gain,depression,raynalds.....these are a few of them as my memory is horrendous i make "job lists" everyday so not to forget anything no matter how trivial.

my rhuemmy said " its lupus, learn to live with it,adjust your life" but thats easir said than done when i need to work to pay our rent and bills etc. im on 200 plaquenil daily, did try 400 plaquenil daily as told by my rhuemmy but had a bad headache for 36 days so had to go back to lower dose. told to take paracetamol but thats it.

i write lists of how i feel when i see my rhuemmy but im getting no where, she says if im not well inbetween appts to see my GP, i go to my GP and get told "dont know enough about lupus,wait til you see your rhuemmy"!!!!!

im fed up of explaining to people who say i look so well that im not, lupus is a "hidden" condition that sneeaks up on us and can give us different symtoms from one day to the next!

i keep my condition to myself unless someone gets nasty.

i take iron and multi vits everyday as im always borderline anemic, and vit d as im to avoid sunshine as it wipes me out even more..........sorry to whinge but im chasing my own tail, ive been told my rhuemmy is the best i can have in my area and travelling to london (guys and st. thomas) isnt possible as money is sooo tight that we cant heat our home let alone travel there.

just dont know whether just to say stuff it to it all, not go to hospital appts at all? and the cherry on the cake is ive just had a patch of skin taken from my foot and awaiting results!..........anything else! i can understand why my family think im exaderating.

im not a doom and gloom person, i always put on a brave face but i havnt the energy to do so lately......sorry x

7 Replies

Hi - sorry to hear you are suffering so badly. It sounds to me as though the plaquenil is not strong enough. Of course, I am not a Rheumatologist and I haven't seen your blood results, but you could try asking for something stronger, like MTX (methotrexate). This is not a suggestion to be taken lightly, as it is a drug that can have some horrid side effects, but if you are suffering so much, maybe you can just ask, next time you go - for a different drug?

I don't recommend giving up with medical treatment - that would be madness!

Take care,



Hi l too was like you until my rhemmy put me on Plaquinel and methatrexate and tramadol for pain plus many vit tablets vit d folic acid ect, but as soon as l had taken methatrexate for 4 weeks the improvement was tremendous. Dont get me wrong l am not cured but feel half reasonable half the time instead of in hell every day.Please dont give in. if you could get the right medication perhaps you too could feel at least half human again. I wish you all the best and urge you not to give in, (((((BigHUGGS)))) keep in touch let us know how your doing.


No your not whining ! Not at all! We all need & out let, thank God there are message boards like this! I can take plaquinal , messes with my eyes. There are other meds that will help. I think from what and who I've talked to there are someone legs to lupus no two are the same.

I'm on my third Rhemy because I'm tired of hearing that's normal ! It's not normal !

Find another dr, just keep pushing until your comfortable with your dr. Makes the world of difference when dr believes in you and any ailments we have

Hang in there your not alone

David from Tampa


Firstly don't give up fighting. I am surprised your rheumy has not put you on a stronger drug, i started on plaquinel, then mepacrine was introduced. There was some improvement so then put on mycophenolate mofitil which has made a difference along with steroids.

If i were you i would look for a different consultant at a different hospital.

Thats what i took for me to get some real help, its a pain but worth the effort.

Keep fighting and make suggestions to your consultant, don't accept his/her phobbing off answers.

Good luck


It's surprising that you have never been prescribed steroids. I have also found that many rhuematologists have an inadequate knowledge of lupus. There is a list of lupus specialists all over the UK on the st Thomas' lupus trust website. My understanding is that you can ask your GP for a referral to any of these. Hopefully there is one near you. Good luck. X


This is exactly what I did. Looked at the list for the top rheumie in my area and asked for re-referal. I have an appointment with new rheumie next month :-)

Please hang in there caninecrazy, it is hard when you feel like you are not being listened to and helped but please don't give up. If you dont fight for yourself who will?? Stay strong and good luck xxx


Your not complaining your suffering. Lupus is one hard illness to live with. I'm not saying that one disease is easier that the other but at least with the likes of rheumatoid arthritis others can see where your joints are affected and can understand why you are in pain. I'm taking 400mg plaquenil, 100mg imuran and am often on steroids. I was very concerned about taking anything stronger that plaquenil because my lupus is considered mild as I have no organ involvement. The imuran has made a difference I've been flair free since I stated on it.


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