[palmtree]

Hi,

my name is Jasmine - I was diagnosed with lupus (SLE) this past september, but still haven't been able to settle down this initial "flare". I am taking prednisone, plaquenil, and I'm also participating in a clinical trial for a new medication. My life has changed dramatically since being diagnosed, and none of these treatments have helped me at all - in fact I have gotten worse. My doctor says that I also have a myopathy or some type of muscle disease, I have extremely high levels of CK in my blood, and cant seem to control it. I have just found this lupus site and hope to get some advice as well as offer what little knowledge I have.

thanks,
Jasmine

 

[jacquip]

Hello Jasmine. Welcome to the site. I was dx with SLE August 08. I too am taking pred and plaq - I do feel they have made some difference to how I am feeling - just a little though. Take each day as it comes and try to remain positive. SLE is a very big nuisance, but if you have this site and good people around you it really is managable.

Cry when you feel the need to and talk to people about how you are feeling. The thing with SLE because we look 'well, good or fine', people don't see that we are suffering. So tell them how you feel when you feel it.

You didn't say where you're from. England?

I've recently added the Lupus cause to my Facebook site as i want all my friends to know about it.

This is a brilliant and very helpful site.

Keep on it.

 

[Sleepless Sue]

Hi Jasmine!

I was diagnosed w/ lupus back in September of '08. I had dealt with horrendous pain for almost 5 years on top of people (including doctors!) thinking I was a hypochondriac or just plain whiny. FINALLY!! After I had lied to my GP & told him I thought I had skin cancer, he finally sent me to a skin doc who, by mistake, found lupus. I had my first appt with my rheumy in Sept and he started me on...
hydroxychloroquine
200mg twice a day of that plus 10mg of prednisone at night. It took a bit of time, but let me tell you!! Whatever the stuff is, it's worked wonders for me! We're trying to wean me off of the pred with no success. Whenever I go down to 5mg of the pred, the pain creeps in within a day or two. My rheumy says I may be one of those cases that will need to be on the pred for the rest of my life because of the severity of my pain. I don't mind so much mainly because I know what the alternative is! Today, even though I have flare-ups now & then, life is so much better! I'm learning to pace myself & watch for my flare-up signs. I'm also going to try to keep some sort of journal as recommended by some of that gals on this site. This way, not only will the doc know what's going, so will I & maybe I can prevent future flare-ups myself.
Check with your rheumy & see what he says about the above drug. If it's available in your area, it might be worth checking into.
Also, this site is fantastic!! Not only for help & stuff like that, but for your mental state. We tend to feel all alone & hopeless until we realize there are others out there like ourselves. Talking or writing about what's going on with you, can be very relieving!

Hope to "See" You Soon
Sue

 

[LolaLola]

Hello Jasmine,
I am a long term Lupus patient. I am glad you found us. Don't feel that you have a huge amount to learn, you will be surprised how soon you will be knowledgeable. I certainly had help and understanding from Lupus friends on sites like this. Often people here will know the answer and save you a lot of hard slog.
Do remember Lupus treatment has improved greatly,so there is a lot of outdated and gloomy information on some sites or in old textbooks. Please be careful, anything over five years old may well not be accurate now.There is no point frightening yourself or your family.
Big Welcome,
x Lola

 

[x_claire_x]

welcome

Hi Jasmine, I was diagnosed in Nov 08 with MCTD, a mixture of Lupus and Schleroderma, so I have been told, following pain since July 08. I had steroid injections in August then after a flare in Nov 08 which helped about 20% only and anti inflammatories not at all. I started on plaquenil (hydroxychoroquine) in December and have recently been upped to two tabs daily after my eye test was ok.(You should have at least annual testing as there is a very slim chance of side effects affecting the eyes). Whilst on holiday in Dec became photosensitive, massive rash and urine infection.. Prednisolone 40mgs a day for a week and I am still reducing, on 7.5mgs a day now... I do find that my joint pains come back whilst reducing but nowhere near the pain previously. Whilst in the Caribbean I asked a Rheumatologist who has far more Lupus patients than mine how long plaquenil can take to kick in and she said that it can take up to 6 months and sometimes more and that the 2-3 months I got quoted was optimistic, great if it happens but the drug shouldn't be abandoned as not working before a good trial of it 9-12 months. So take heart, it may work yet, just a bit longer than you may have been told. I am still wondering whether mine will once I am off the steroids.. if I can get off them! I wish you all the best and I am sure both of us will have a journey over the next couple of years that at times is very confusing to find what works and what doesn't for our bodies.... take care and glad you have joined the site, it gives invaluable support and advice.
Until the next time....
XClaire