any advice please

HI all i was given a new drug to start 2 weeks ago called rivaroxaban 20mg daily to replace warfarin as i am so unstable on it, However i was a little concerned when the consultant said its fully effected the first 12 hours ! so it seems after this i would not be fully covered he assured me it would be fine. However last week my leg swelled up and was very hot and lumpy so went to GP who stopped the tablet and has put me back on warfarin and everything has settled.

I am now battering with this new consultant who said he reckons its not the new tablet , but i said to him all the side affects have gone and i feel a lot better than when i was taking it, I really am unsure what to do as i feel if i don't do what he says he will no longer see me !

Any advice please i seem to be having to argue my case all the time its becoming a nightmare and i am feeling why should i bother with any of this anymore life is hard enough with this dreadful illness nobody wants to listen to the patient anymore.

sorry for going on but i am so fed up of feeling ill .

7 Replies

  • I hear ya hun,im on my 3 rheumy in 5 years, I asked on the lupus uk page on fb if anyone could recommend a rheumy in my area they did and 4 months which was last Thursday she is my God she used to work at St Thomas im the lupus ward and she listens and answered my 3 pages of questions... They cant make u take the meds, I wrote to my first rheumy as he never listened to anything I said, I said u may be qualified but ur not lupus aware your job was to help me u didnt so I shan't be coming to see u again, and I went on the hospitsl website and found another rheumy im my area he was lupus aware but was retiring in 4 months but I saw him and he was quite good at listening, so I guess im saying research and gind one in ur area that is lupus aware, hope ive helpedx

  • Hi Ya

    Thanks for your reply i do have a fantastic rheumy but he was the one that said i needed a specialist this is why i went to cambridge at first i thought thank god i have someone who is listing to me but since i phoned him the other day he was i don't agree with what you are saying meaning me !! so i am so cross a i no my own body i am a complex patient but at the end of the day its not my fault i am at wits end knowing what i should do.x

  • Is that addenbrooks as I refused to go there as it was too far, is ur rheumatologist not lupus aware??? Or mixed connective tissue specalist?? X

  • Yes it addenbrooks it takes me 45 mins to get there by car , My rheumatologist does no about lupus but i have chronic obstructive air ways disease to along with lupus, brittle asthma , Migraine, diabetes medication induced !!This is the problem had a fantastic consultant who retired 5 years ago and since then its all gone pear shaped , I also have a portacath inserted into chest so they can get bloods twice a week as my veins are rubbish this is why its s complexed and at present my port in infected due to staff at my local hospital not following care plan and not changing the gripper needle after 8 days its suppose to be done every 72 hours as i have a lot of stuff running through it, i have just had a call from hospital asking me to go tomorrow to see if it can be saved in way before having another one removed its such a nuisance as i have to wait unto 10 weeks for a new one they are suppose to last around 4 years but unfortunately i am on my 3rd within 4 years . x

  • Ahh god I thought I had a lot going on, my gp /dermy/thoracic meds consultants all left but thankfully ive seen this brillant rheumatologist so.hopefully things are on the up, wish they were for u.. All the bestx

  • Heart goes out to you Rlupus. Rebuffs is one thing but you are in a class of your own. As kittykat says what a lot on your plate. Encouraging thoughts and lots of gentle hugs to you


  • Thanks for your kind words very down at the moment nothing is working and feel so ill , i just have to keep plodding along till next week and see what happens at next weeks appointment next thursday x

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