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Discussion Starter · #1 ·
Hello to everyone,
Been visiting this site for a while so i thought i'd join for some support. Family and friends think im fine 'cos i look well because of my rosy cheeks and my rheumy thinks now that i've finally been diagnosed with sle, i should accept it and move on and look on the bright side because none of my major organs seem to be involved yet......Idiot ! Some doctors really leave me gobsmacked.
I was diagnosed with sle and fibro about a month ago after 9 months of feeling very ill with most of the symptoms a lot of you have and to be honest, although i'd heard of lupus, i didnt really have any knowledge of it despite working in the nhs, so this site has been invaluable to me and has made me feel a lot more positive about living with lupus.
I've been taking prednisolone for 8 months and have just been started on plaquinil so hopefully that will kick in soon because im really struggling working full time and i cant afford to go on the sick which my rheumy suggested.I suggested he pay my bills then but unsuprisingly he wasnt keen lol.
Anyway, thanks for listening, it's just nice to vent once in a while and if i havnt bored half of you to sleep already, Goodnight and i look forward to getting to know you all.
 

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Hello Goldilocks,
If you haven't put in a DLA claim, I should think about it. Even if you just buy the odd convenience meal with it, it helps.
Like you I am in the UK,long term lupus, fibro, APS and Ehlers Danlos. Unlike you I am lucky enough to be on Disability, I really feel for you working.
x Lola
 

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Hi Goldielocks

Im glad you decided to jump in and join us :)

Sometimes I think that Consultants have had a sensitivity bypass. Its the only explanation I can come up with for some of their comments:rolleyes:

Im surprised they went straight for the prednisone and not the Plaquenil though. That just doesnt seem right to me. Anyway Im glad they eventually started you on the Plaquenil. You probably know, if you've been reading posts over the past while, that Plaquenil can take a while before full effects are felt. Generally somewhere between three and six months and in some cases longer than that. What dosage of pred are you on at the moment?

Are you entitled to any sick leave payment? Even if it was only for a few weeks it could make a difference to how you're managing at the moment.

I also have Lupus and fibromyalgia by the way. I'm also on Plaquenil and Pred. Are you taking any calcium supplements with your pred?

Many people with Lupus are on a number of medications and it can take a while to sort out the right balance. Dont hesitate to let your doctors know how you are feeling and if you have specific symptoms which are causing problems.

Anyway, enough for now! Welcome again and I look forward to getting to know you

Take care for now
Joan:rose:
 

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Dear Goldielocks

I am so glad you decided to join us here but sad you are struggling so much.Before i was diagnosed with lupus i was working 46 hours a week and everyday every night feeling like i was not going to make it the next day and finally had to quit my job but sometimes wish i had not quit completly just because it would of kept me busy but at the same time health wise i am doing so much better because i can rest if i need to.I do understand how doctors can be.Well i sure hope the plaqunil starts helping you feel better.It made a big difference in the fatigue and migraines for me but did take like 8 months i think before it did help.Take care and try rest when you can.

Tammy:)
 

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Hi Goldielocks,

Welcome to the Lupus Site. I am glad that you have found us. Even some really good lupus doctors have no bedside manner whatsoever. I live 8 timezones from you in California, USA. I worked many years with lupus but 5 years ago I had no choice but to go on disability. Please take advantage of whatever services are available to you. One big lifesaver for me is a disabled parking placard you call it something else in the UK.

There are a couple of "letters" in the family and friends forum. They are pinned at the top. One is called "Letter to Normals" and the other "Letter to friends and family". The Letter to Normals is the one I sent my family and friends and it has helped some of them to be more understanding. Hopefully one or both of them can help your friends and family.

Take care,
Karen
 

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Discussion Starter · #6 ·
Thankyou all for your advice and support, it's a relief to actually find other people who understand what you're going through without having to try and explain it.
I already applied for DLA but unfortunately, because i continue to work, they think i can't be that ill so refused me, even after a tribunal. I've already had a lot of sick time over the last few months especially in the early stages because i couldn't walk, so next time i go off sick i go on to half pay and unfortunately i cant afford to live on that so im stuck between a rock and a hard place at the minute.
As for my meds, im taking 400mg plaquinil a day and i've got my pred down to 15mg a day, im tapering it now so hopefully i will be able to stop it all together in a few months. I dont look like "me" anymore because of it and cant wait to come off it.
Anyway, thankyou all once again.
Love Goldie x
 
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