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Hi reisha

A big warm welcome to you :)

sorry to hear of your diagnosis at such a young age :sad:
you have come to the right place for support & knowledge..it helps to know you are not alone & there are others who understand exactly what you are going through.

how does your lupus affect you?would you like to tell us a bit more about yourself?

theres also a great chat room to talk to other members,we even have some laughs there too :)

take care,bye for now
karen x
 

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Discussion Starter · #3 ·
hey

hey karen, tanx 4 the welcome:) i was diagnosed @16,had thrombocytopenia,never heard of lupus b4 that. was started on 60mgs pred, then decreased to 5mgs/day, that kept me pretty well 4 a couple years. i havent been to the doc since,cuz i migrated. been feelin extra ill lately started taking 10mgs pred,that helped.but i have a docs appointment next friday. wish me luck!
 

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I have been there before Iwas diagnosed at the age of 20 after the birth of my 3 children. There for awhile all I did was take the prednisone and every time they took me off of it it would kick my butt once again. I know for 5 years I fluxuated between 60 mgs. and 10 mgs. but now I am doing okay I guess I have my good days and bad days. But there is light at the end of the tunnel I tell myself sometimes I believe it but there are other times I dont. I hope you continue to feel good and maybe we can chat some more later.:wink2:
 

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Discussion Starter · #5 ·
hey cutenblue, i know just what u mean about good and bad days,sum days i cant and don't want to get t out of bed, on good days i feel like doing everyting imaginable! but i know if i over-exert myslf, i'll pay with the next day consequences... how is havin 3 kids and dealing with lupus doable!?
 

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Reisha,

Will you be seeing a rheumatologist next week? Prednisone is a lifesaver but long term use can have many consequences. Plaquenil is the main medication used to treat lupus with other medications added if necessary. I only take prednisone when I have a flare-up and then I only take it for 10days. Hopefully the doctor will explain to you the problems with long term prednisone use.

Let us know how things go.

Take care,
karen
 

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Discussion Starter · #7 ·
yes,i will b seeing a rheumatoligist next week. I am aware of the long-term and immidiate side-effects of prednisone. I take calcium everyday and watch my diet. I come off pred occasionally, i have withdrawal symptoms @ first then im usually goo for a month on average. I know plaquenil is an anti-malaria drug. What does it do and what kinds of side-effects does it have?
 

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Reisha,

Plaquenil actually alters our cells and then the lupus doesn't enter that individual cell. It takes several months to start working as it takes a long time to alter billions of cells. It is the safest medication we take, even safer than the over the counter medications we take without thinking. There is a extremely rare chance of problems with our eyes when taking Plaquenil so our doctors have us get a baseline exam and then we have exams annualy, at least annualy is how my Opthamologist does it. In the USA you need to see an Opthamologist and not an Optometrist for this exam.

Let us know how your appointment goes.

Take care,
Karen
 

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Hi Reisa

Welcome to the Forum :)

Plaquenil was discovered to have different and divergent actions than it was originally intended for. As Karen says, it alters the ph balance of our blood cells, which limits their ability to process antigens. Antigens are a substance (the enemies - usually a protein) on the surface of a cell that stimulates the production of antibodies. In people with Lupus, our bodies cannot tell the difference between the antigen and the antibody (the good guys) and our system goes into overload – producing too many unnecessary antibodies.

Once our bodies set up an 'immune reaction' we attack the good guys and the enemies equally. Our bodies cannot make the distinction. Hence we can get inflammation and damage anywhere in the body. So the idea of a drug that can 'limit' our bodies ability to process antigens is welcomed. Plaquenil also has some additional 'good' side effects:
  • It helps block ultraviolet light from damaging the skin
  • It has an anti-inflammatory effect similar to that of an NSAID
  • It lowers chlosterol levels by 15 to 20 percent
  • It inhibits clotting
  • It blocks certain pro-inflammatory cytokines
As Plaquenil changes the ph balance of our cells, the lupus antigens (the enemies) will no longer enter that cell. Altering the ph balance of cells takes time before a significant effect is noted. Over several months Plaquenil is able to change the ph balance of a good portion of the cells in our bodies. This then will slow down the course of lupus. Its not a cure but it has the potential to slow down lupus wherever it has affected us.

For 90% of patients with lupus, Plaquenil therapy has been shown to reduce discoid lesions, erythema, mouth ulcers, and hair loss. Joint pain and swelling also decrease. Over time, Plaquenil helps reduce inflammation around the heart and lungs and improves symptoms such as fatigue, fever, and cognitive dysfunction. Often patients report more energy because it's a mild stimulant.

So, thats the science bit:)

I hope this helps

Take care and welcome again
Joan:rose:
 

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Discussion Starter · #10 ·
Thanks for the info Karen and Joan. Plaquenil def. sounds better than taking pred everyday even tho im on a low dosage. What about the negative side effects? will plaquenil lower ur immunity? and will i have to take other drugs for my lupus symptoms? pred. helps with my artriths
 

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Plaquenil will help with all of your lupus issues to what degree will be unknown till you have been taking it for awhile. The great majority of patients are able to just take Plaquenil or Plaquenil and a Anti-Inflammatory like Naproxen.

Other than the eye issue that I mentioned as some gastric discomfort in the beginning there are no other side effects that normally affect lupus patients. Even the eye issue is extremely rare but the opthamology appointments are required by most doctors.

Your "arthritis" is the lupus affecting the tissue around your joints and the Plaquenil should help control that along with everything else.

Take care,
karen
 

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Discussion Starter · #12 ·
tanx again

hey karen,tanx again 4 the info. i have all these questions making comparisons cuz ive become accustomed to and accpted the s/e of pred. Plaquenil sounds great but what about appetite,sleep and skin, appearance issues?
 

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Hello Reisha :)

Plaquenil is the most fantastic medicine with a minimum of even potential side effects and innumerable side benefits. To add to the list is its apparent effect in reducing the incidence of type 2 diabetes which was announced last summer. This is so marked, according to this study, that Plaquenil could even be used to treat diabetes 2.

Plaquenil does not cause weight gain,skin problems or affect the appearance in any adverse way. It also doesn't normally affect sleep although if taken at night it might cause some sleeplessness for some people, because it can have a healthy energising effect helping combat the fatigue that so many of us suffer from.
There are very good reasons why Prednisone use is kept to the absolute minimum these days. Those who have to take it can't always prevent all the possible serious damaging side effects of which osteoporosis is only one. Calcium supplements don't always prevent bone loss. Thousands of people have taken Plaquenil for many years even lifetimes without the slightest ill effect. There is no comparison with Prednisone in that respect.

It is rather surprising to meet a young person whose doctor has not prescribed Plaquenil. Many these days won't even prescribe Prednisone unless there is organ involvement necessitating its use at some point.

It isn't even "either/or" - many seriously ill people are on Plaquenil whatever drugs they need in addition to it and those whose disease is not active often stay on it as an 'insurance'.

On a completely different topic, please don't take it amiss, if I point out that there is forum guideline against using short forms and 'text speak' in posts.
This is because it is very irritating and hard to follow for many of our members whether or not their mother tongue is English. Thank you for complying with this guideline in future.

All the best
Clare
 

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Discussion Starter · #14 ·
Hey

Hey Clare, Thanks for the info and the tip. It was and innocent mistake:) I was unaware of that rule. I am writing from a mobile device and character space is limited. Hopefully my pc will be up and running again soon so i can be more long winded and bore you guys:) And i'd love to chat sometime too! Bye, Take care.
 

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Dear Reisha,
Hello I am Lola, my Daughter Immi also posts here as we both have Lupus. She is 17.

I do know Plaquenil is a very good drug, and am surprised you aren't on it.

This is a good site, we look forward to having you here and knowing more about you.

I have been here about 10 months but have had Lupus for many years.
x Lola
 

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Discussion Starter · #16 ·
Hi Lola

Hi Lola, it is a wonderful site indeed. Everyone is so friendly and being here has made me feel a whole lot less depressed, I don't have many friends or much of a social life or even anyone who I can talk to. I look foward to chatting with you, and Immi as well. Best Regards.
 
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