Re: Diagnosed w/Sjogren's :(/LynnJ

[Guest guest]

Hello ,

Lurker LadyWillow here. I've had Sjogrens since childhood, wasn't

diagnosed till '98, with a lip biopsy, and was on Plaquenil for over

10 years. It really did help minimize the inflammation and other

symptoms of SjS.

However, watch out for the nausea and possible back & other muscles

problems including weakness & spasms.

Didn't realize that medication can effect the absorption/utilization

of minerals, especially Calcium & Magnesium. I also had Polio as a

child, have a weak Thyroid and Adrenal Insufficiency which all

contributed to the problems as well.

Adding extra Calcium, Magnesium and Malic Acid to my supplements did

help offset the negative muscle problems most of the time but not the

nausea.

Not everyone has these side-effects and they might only show up after

long term usage.

I wasn't aware of it till after the Doctor had me stop taking it when

the SjS seemed to be in remission and the nausea was more then I

could stand. Then suddenly the horrible back spasms stopped - almost

overnite. Seldom have them now unless experiencing extreme stress, an

injury of some kind or the spine is out of place.

Did some on-line research and discovered many people had the same result.

Sincerely

LynnJ AKA LadyWillow

>Hi Chloe,

>

>Sorry you got diagnosed with another condition. I saw someone else

>answered your question about why is it mostly women who get

>Sjogren's. I agree with their answer.

>

>I have presumptive Sjogren's. There are tests for it: a) blood

>tests looking for two different antibody factors, biopsies of the

>parotid (major salivary) glands and of the minor salivary glands

>that are scattered through-out your cheeks and lips. The biopsies

>can show these two antibodies factors. and 3) an eye test that shows

>diminished tear flow to the eyes.

>

>I do not test positive on the first two and no one has sent me for

>the third one. It is the blood test that doctors usually go with.

>Unfortunately, only about 70% of Sjogren's patients test positive

>for the blood factors. That's partly because some people will

>develop the factors only as the condition progresses. But there are

>some people who never develop the factors. Many rhemuatologists

>refuse to treat for Sjogren's if you don't develop these factors. I

>suspect this has more to do with law suits than anything else.

>

>Anyway, after 4 years of debilitating issues, my rheumatologist said

>let's treat you for presumptive Sjogren's. I'm just starting the

>Plaquenil treatment.

>