[loubylou2]

Hi

I just wondered if anyone can give me some advice. I have recenty been diagnosed with lupus, i developed an under active thyroid after having my baby last year and after that was treated they realised that something else was causing trouble and i have been diagnosed by my specialist. I havent really read about lupus too much and i have been told that i only have a mild case at the moment, with joint pain, rash, slight hair loss but i am really struggling with the tiredness as you can imagine with a very active toddler it really gets me down as i feel iam irratable with her and not giving her my full attention. They have not put me on the anti malarial tablets yet although i am seeing the specialist in october to discuss this and am unsure on whether the pros out weigh the cons. When i have good days i feel like i can handle things and that i dont need any more medication (im on four tablets a day for my thyroid) but then i have a run of bad days and i get really down thinkin this is here for life and can i handle it! I think i have been diagnosed and have just busied myself with everything else and tried to forget about the lupus (if i dont think about it it will go away) but then tonight i read about a woman that has died at 46 from a five year battle with lupus and I have frightened myself to death! I didnt think it was this serious? can anyone give me a bit more understanding or insight into things? I know i may come across as very niave to this but i thought the less i knew the better and im now thinkin i need to know more.

All advice greatly appreciated.

Lou

 

[Katharine]

Hello Lou and welcome

Anti-malarials are extremely safe as far as meds go, in fact far safer than many OTC meds that we buy and consume without a thought.

If your lupus is mild anti-malarials (plaquenil) will often be enough to control your disease activity and reduce the frequency and severity of any flares you may have.

Even though doctors describe it as "mild" it is important to remember that the symptoms and impact on your life may not be mild at all. It is a doctor's way of saying that there is no major organ involvement - obviously a very good thing for you.

You also need to remember that although lupus can be life threatening for a very small number of patients, it is not for the majority, especially with the good treatment and proper follow up most patients have today. It is a chronic disease and it does need to be taken seriously but not feared to that extent.

Obviously you must discuss your fears with your doctor and tell him how you feel about meds but on the whole plaquenil is a baseline med with huge benefits (and very few or no side-effects). Even people who go into a "remission" are usually kept on plaquenil to make sure that they stay in remission. Its main disadvantage is the time it takes to work - it often takes 3-6 months to see any noticeable effect, sometimes longer.

Bye for now and hugs :hug:

Katharine

 

[debatat]

Hi Lou and welcome to the forum. It is a great place to find info and support. When you are newly diagnosed it is a lot to take in. Plaquenil is safe to take and can be very effective. It does take a while to kick in though. It can be a rollercoaster of emotions to start with, anger, denial, grieving etc. Thats why this forum is so great. Once the lupus is under control you should feel much better.

Take care

Deb

 

[keebler]

Hi Lou,

Welcome

That lupus fatigue is awful. I don't think anybody really understands about it, until you experience it. It would be really hard to keep with a toddler. If you could rest when she is napping that would be a good start. Forget about the household chores that you want to do. Your little one is more important.

Pushing threw fatigue can only result with pain and more fatigue.

Knowledge is power and learning about lupus will help you when you and your doctor are making decisions about your treatment plan.

Take care,
Lyn

 

[Pink Pearl]

Hi Lou, welcome to the board.
My recommendation to you is to be very careful about what you are reading. If it is over 5 years, it may be out of date and not relevant.

Yes, some people do die from lupus, but they are only 2 to 5% of ALL people with lupus. Now, that leaves you 98 to 95% of us who are still alive. When you put it in the perspective that in 1960 the 5 year survival rate was 30%. Now, the 5 year survival rate is 95 to 98%. So, you can see with adequate medical care we are living longer than ever before.

The UK Lupus Foundation has support groups which might be helpful for you to attend. They are helpful in sharing coping skills, tips on surviving lupus and small children, and help with survival tips.

One of the things which helps many is to keep a symptom diary. Track your symptoms, fevers, fatigue - rate it on a 1 to 10 scale. Take pictures of rashes and how often it comes up. Take these with you to the rheumy appt and go over them with him. Take a list of your questions to go thru. Don't leave without answers.

Plaquenil is a safe medication for most people. It was used in WWII for the military in zones where malaria was prevalent. The doctors found that those with minor arthritis were having relief while taking it. When the servicemen and women came home, the medical world took notice of the benefit they had and began to research it more. So, this is a drug that has been used for a long time, with few side effects for most. There are a few who have side effects, and for them it is not useful. If you find side effects, let your doctor know immediately. It also takes a long time to build up in the body to achieve a "therapeutic level" so you may not get relief with it for a few months. This is NOT unusual.

You are just beginning your journey with lupus. It may be scary, the unknown usually is. In the US, the National Institute of Health has literature for free on lupus and other diseases. Check with the UK equivalent and see if they have it as well.

Please don't hesitate to ask questions. Most of us here have been on this journey for a while. We have varying experiences and you can usually get methods of coping and survival. The moderators here do a very good job and what they don't know, they can usually find out.

Hopefully I have answered some of your questions.
Sally

 

[Judy64]

Welcome Lou

Morning Lou.

Every case is a little different & being diagnosed with lupus is not a death sentence. I am almost 66 and am having a wonderful life despite a few hurdles. I was diaganosed 46 years ago and still hangin in. Rest when your body tells you to rest, pay attention to what your body is telling you, and don't ever be afraid to ask questions. Listen to the Dr. and try to laugh and smile every day and when you get to be my age, hug the heck out of your great grandkids.

 

[countrylass]

Hi and welcome to this fab site
sorry u diagnosed with lupus im awating this, my fatehr has it dle version(affecting skin only).
fatigue and toodler not at all easy,wishing u well lv countrylass

 

[loubylou2]

Thanks

Thank you so much for all your advice it has been so helpful, i have been making notes of my symptoms and a list of questions to take to the specialist in october. Also one of you mentioned life insurance etc, if i apply for this now even though i am currently seeing a specialist will i be able to apply for it before i am properly diagnosed? This is obviously quite important, also can i apply for salary protection incase in the future i cant work?

Also can anyone advice me on pregnancy with lupus? my doctors just keep telling me to think carefully about this and that it is not always a good idea for me or for the pregnancy, does anyone know anything further?

Finally (sorry i have loads to ask lol) do we get offered the swine flu vaccine if we have lupus? My dad is diabetic and has been told he will be called for this when he has his flu jab, does this apply to lupus sufferers too? Also cause i have a small baby I have never had chicken pox or measles etc and i know that i am at some point very likely to get them when she starts school is this very bad for a lupus sufferer?

Thanks again for all your advice i have learnt more in two days on this site than my last few trips to the docs

Lou x