new drug

mig

morning all,a few days after xmas i posted "not been too good"i thought after being on lef for nearly 7 months i found a drug that suited me,then i started to feel really anxious and worried all the time to such an extent i didnt want to get out of bed in the morning so i phoned rhemmy clinic and spoke to nurse who thought it was not the lef but would send me an appointment and to see my gp in the mean time,so gp thought it could possibley be lef as its one of the uncommon side effects and advised me to stop the lef and wait to see consultant gp was really concerned that i was in such an emotional stste that she gave me diazapam for a few days.
So yesterday i went to clinic and saw a very young doctor who listerned to what i said and then went to see her "boss"who came storming in and said it could not be the lef she had never seen any-one with this reaction not have any of her colleges,to cut a long story a bit short i would not give in to her insistance that i carry on with the lef,she finally gave me a drug called Hydroxychloroquine,got to go back in three months.any one heard of this drug or had a reaction to lef. :sad: Mig

dreamdaisy

Oh mig, poor you, and what a horrid doc. There is nothing worse than the 'as I've never heard of it it doesn't exist' stance that so many docs seem to take on matters. I have heard of hydroxy (many on here are on it) but I have never tried it. When I was on lef I had crippling headaches so I didn't stay on that for long.

It takes time, mig, to find the right med or combination of meds, and there will be 'bumps and bruises' along the way, but hang on in there and I am sure things will begin to improve for you soon. Wear your cardi with pride, yes? DD

mig

Hi Daisy,thanks for your reply,you always seem to know the right thing to say,i was beginning to think it was all in my imagination,im not the sort of person to let things get the better of me,hopefully when the lef is out of my system i will be back to my usual self,wear cardi to read in bed darent go out in it i would be a laughing stock then. Mig

julie47

Hi Mig

Sorry that the dr you saw yesterday was so awful to you. She should not have stormed in and spoke to you in that manner.

I have been on leflunomide for a good few years with no problems (touch wood )
I was introduced to hydroxy about 2 and half years ago and it really did help me. (i am on meth and celebrex and lef)
I hope it helps you too and that you soon feel better.

Love Juliepf x

mig

thanks .how are you doing?havent been on for a good while so lost touch with people.Mig

jillyb1

Oh , Mig , what a ghastly ignorant doc ! Why can they never appreciate that we know our own bodies and how they react and function better than anyone else does ; we don't all conform to the textbook ! I had the same problem with a reaction to methotrexate years ago : all my hair fell out , I trembled , constantly sick and couldn't even form a sentence as my brain was everywhere ! Rheumy said this isn't usual , persevere with it ! Needless to say , I declined that suggestion ; 3 years later I have hair again and talk sense ( occasionally ) . Jillyb

dibdab

Oh Mig,
So sorry you had a rotten encounter- sadly some consultants seem to think they hover 20 feet above contradiction- when I meet some one like that I just remind myself that they have bad days too-and hope that they get better. I had a horrible rheumy and after 3 years dug my heals in and got a transfer to a delightful man who listened and got things moving for me-maybe you could think of the same.
I have taken the hydroxy stuff for 4 years in combination with methotrexate(that made me reaslly ill so gave up on it) and now sulfasalazine-they help and get few side effects other than a dodgy tummy :???: . Hope it works for you too.
Blessings

Deb x

suzygirl

Mig, what a shame you had such an unpleasant appt. We all react differently to these meds and docs need to remember we are people.

I take hydroxy (plaquenil) and it took nearly a year to kick in fully, but it does lessen the fatigue I find. I took in the evening after dinner to start with to lessen the side effects.

You need to have a full opthamology test every year, just to check it doesnt cause retinal toxicity.

mig

thank-you all for your replies its good to know you are never on your own.Mig