Lupus specialist

[discoqueen]

Hi all we have hit a big wall once again !!!!! Am on mytax (can't spell it) lol 6000mg by day 600 quin by day 60mg preds by day plus ur normal meds lol .... Been on an off on infusions ..... since October tried majority of meds available to us but my body don't like them.... We now might be goin lupus specialist lol..... Has anyone been an know his/her name please.... to Birmingham .... hugs an kisses t u all an hope u are doing well xxxx

[yashy]

Hi i have lupus too i was diognized 3 years ago......i went to see a doc in london bridge.he put me on quinine did not work got lots of rashes .i decided to do herbal medecine and been having ayuverdi treatment called kinzili its a heb powed hot massage on on joints and your wholw body plus hot oil massage it really works i dont take any medication and feel so good the only thing is you need to be positive all the time its hard as the oil really smells bit hey if it helps i am all for it. there are lots of centers in london just google ayverdi treatment and you will find it.

Hope all goes ok .good luck and keep in touch.

Yasmin

[tintin49]

london bridge wanted around thousand pounds which i cannot afford. hate lupus medication and it frightens me the long long list of meds that people are on ...

[Melinda]

I also find lupus medications frightening. Doctors don't do diets or alternatives, i don't think they are allowed. Before i had lupus i never took anything stronger than a paracetamol and then not very often!

[tintin49]

i dont think i have lupus the quinine based meds gave it to me. if i had lupus why did i not have symptoms until now.

[Caroine]

I quite agree with you Melinda.I feel that there is more to this ailment,management and care of sufferers that makes it a lot frightening.My personal views is that we are treated too much by the book.My kudos for all the research work that has gone in so far,treatment has come a long way but a lot more needs to be taken into consideration;health history,ethnic background,and gender plays a great deal of role.For example since 2008 I have continuous bleeds,stopped in 2010 but its back again.I am in a difficult position with my treatment,now I have an upper resp tract problem,which is thought to be either trifggered by condition or med (azathioprine).What I do each day is to console myself that I am still here to fight another day.Good luck and you are not alone in your pains and fears.

Caroline

[discoqueen]

Thank you all for taking time out to respond its very kind of u all ..... hugs an kisses wit best wishes xxx