What medicine will I have to take for Lupus &Hughes?

[Tonkawoman69]

What sort of medicines will I have to take for lupus? I'm a newbie. What foods should I avoid? I'm on warfrin as have Hughes. Is there anything I should avoid?

[Danielle2419]

Hello there welcome to the site I have Lupus and Hughes as well many people can be different on the medication what they take In the long run but when first diagnosed you are normally on Prednisolone (Steroids) and Plaquenil along with any others that the rheumy want to provide you with that can help you out im also onomeprazole, adcal d3 and iron this are for other issues that I have. As for the Hughes I am on Baby aspirin it depends on how fast your blood clots.

You may find that any food you can have, may be a problem but again everyone is different one person may eat one particular food and get a flare where you may not. For me I only have one thing that seem to trigger a flare and that's watercress, I found this out while eating an egg and cress sandwich

Anyway hope I can help

Danielle

[Tonkawoman69]

Thanks Danielle.

I am still awaiting referral back to consultants about other medication. I've been urgently put on warfrin. Its my second day today. I see the nurse on Tuesday for another blood test. She said might have to have heprin as I've had a blood clot in my arm already , which has damaged some arteries. I don't drink or smoke so I know that makes high risk with warfrin. I will have to go through my diet and keep testing foods. I'm hoping to be referred to St Thomas in London. Plus doctor referring me back to vascular and hematology. Not sure how I get to see anticoagulant clinic or maybe my nurse is able to do all that. I think I've had lupus a while as had alopicia and anemia after my little girl was born had a traumatic , emergency c section which could have been my trigger. She was born 5 years ago. Been unwell for ages. But got loads of the lupus and Hughes symptoms right now so must be in flare mode. I and pretty crippled by it as have mobility problems. I'm hoping to get thing back to a bit of normality now and I have to make some life changes. Where are you from hun? What hospital do you go to? Are they good? I'm not having much luck. I've been looking at Northampton GH as they seem to have lots of consultants that seem to b qualified in this field.

Thanks

Andrea x

[Danielle2419 in reply to Tonkawoman69]

Hello, There wow you have been through a lot but hold in their the right treatment will come along for you. I'm from London and attend the St Thomas lupus unit there which has joint Hughes, kidney and pregnancy, although its quite a busy place and you can wait for ages to get seen its by far the most knowledgeable place of consultants I think available for lupus I see Professor D Cruz and he is just brilliant with my illness and helping me out. Hope you get referred their you will not be disappointed.

Danielle

[madmagz]

Hi Tonkawoman and welcome to the world of us lupies, I sincerely hope that you will be lucky enough to get a referral to St Thomas' they have been a Godsend to me. I have had lupus for twenty years went to St Thomas at the beginning of this year and now feel better than I have done for years and am living a very full and active life. I am avoiding letting any of my skin see the sun, I wear gloves and scarf, long trousers and long sleeved tops all the time that are thick enough to block the rays - I have discovered I am photosensitive so I have removed all light sources from my house that emit UV light, low energy bulbs, and flourescent tubes. I also use a factor 50 sun cream on any exposed skin every time I am out doors Just doing these things alone made quite a big difference, apparently aspartame in diet soft drinks can make some people worse but I would not know about that as I don't drink them but it might be worth avoiding them for a while to see if it makes a difference. I did read an article on the internet about that a while ago. Apparently foods that are high in saturated fats should be taken in moderation as they can exacerbate symptoms but I don't have many of them in my diet anyway as I try to keep my weight down so maybe someone else might be able to help there.

I hope that the couple of points I have been able to give you might be useful.

Good luck

Madmagz x

[Tonkawoman69]

Thank you Madmagz. I also am under other Consultants in Milton Keynes but don't want to see rheumatology as horrible here. Not helped at all. Came out crying when I saw Dr ***** he seems polite but what a condescending, rude man. No help at all. Said I hadn't got lupus and then got diagnosed a few weeks later. He didn't even get the right date I saw him on my letter. Yes he even stabbed himself in the toe by putting it in writing. Oh well just want some good advice. Don't need people like that. Don't trust that department now. Thanks Andrea x

[Paul_Howard Partner LUPUS UK]

Hi Andrea,

Please let me know if you'd like one of our free information packs to learn a bit more about lupus. You can request one by sending me a private message or emailing [e-mail] with your name and address.

[Tonkawoman69]

Thank you just received pack. My medical professionals are being a bit slow and in my area there seems to be a real lack of education for lupus and Hughes. Even the nurses I see seem to be a bit vague. They are lovely and more human. My rhematologist has discharged me as he said nothing wrong then weeks later I got the diagnoses of Lupus and Hughes which was from hematology .Feel very alone at moment, even work colleagues haven't got and idea, most just thought it is just muscle ache and seem very unsympathetic. I have a lot of the symptoms right now and have already had blood clot in arm/hand I'm very scared as they are taking to long to sort the right meds for me. On war fin but know one medical can give me an answer about my INR levels etc. I started as a 1 last week , now I'm a 2.7 so level going up. Feel exhausted and in pain . Thanks for your advice. X