Newbie here

[Smurfet]

Hi, just found out that I have lupus and trying to learn all I can about it any and all help will be appreciated looking for support from people close to me this is scary but I will get through this

[HansLL]

Lupus is so different for everyone, but one have the hardest challenge for all of us is understanding from family and friends. When you feel the pain and fatigue people have a hard understanding as you look fine. Best wishes and I will pray for long gaps without flair ups.

[lupus-support1 Administrator in reply to HansLL]

You have expressed what the majority of lupus patients make clear: the lack of understanding and support from family and friends. LUpus Patients Understanding & Support (LUPUS) specialises in this area - an area that is usually ignored by doctors.

How is the situation for you?

With good wishes,

Ros

[smudge1980]

Hi Smurfet, the best site I have found is Lupus UK. They are brilliant for advice, or even listening if your having a bad day. They will send you information leaflet on all sorts to do with lupus. Good luck with everything

[lupus-support1 Administrator in reply to smudge1980]

LUpus Patients Understanding & Support (LUPUS) also has free information (see above our 2 other websites).

LUpus Patients Understanding & Support (LUPUS) is unique in that we have our own in-house counsellor and psychotherapist. While this should be a part of the overall care for patients with lupus, this is not the case.

Patients report that if they mention anxiety or depression, they may be referred to a biological psychiatrist who may prescribe medication. While this may be necessary for a small proportion of people who are unable to function, the majority need a different non-medication approach. This is where LUpus Patients Understanding & Support (LUPUS) can help.

With good wishes,

Ros

[lupus-support1 Administrator]

Welcome to LUpus Patients Understanding & Support (LUPUS) at HealthUnlocked.

Getting a diagnosis of lupus can be scary. The most important thing is to ensure you have a lupus consultant. Not all rheumatologists are expert in lupus. Some have never seen or treated lupus.

Second, diagnosis and treatment of lupus has changed over the last 40 years. The majority of people live a normal life, have children and many come off all medication. There is every good reason to be hopeful.

The internet can be a good source of information but there are many websites that generate anxiety because their information is incorrect. There are other webites that promise "cures" for lupus.

First, ensure the website is reliable. If the website is on HealthUnlocked, you will know it is OK.

Second, do not take anything without your doctor's knowledge and permission. This includes so-called herbs and "natural" products. There is a belief that if it is "natural" it can do no harm. This is incorrect. For example, "digitalis" is "natural" but taking it can kill. Similarly, if you are prescribed antidepressants and then take "St John's Wort" which is "natural", you may overdose because St John's Wort is also a mild anti-depressant. There are Chinese herbs that can worsen kidney conditions in lupus. Other "natural" products may interact badly with your medication.

We have 2 additional websites which you may find helpful.

(1) There is information at the following website: lupus-support.org.uk

If you Register with this website, you will receive additional information fromthat which is on the website itself.

(2) We also have another website called the LuPUS Message Board where you can also post questions and talk to other people. Registration is FREE and we offer free information and free online psychological support. We specialise in psychological support with our own counsellor/psychotherapist available.

By becoming a Member, you will have access to the private forums and because they are private, only Members have access and even bots and search engines are forbidden.

When you register, please use the following format for entering your date of birth: nn-nn-nnnn where n=number. Please use the "-" separator and not "/".

Finally, please go to: lupus-support.org/LuPUSMB and Sign Up.

I look forward to talking with you more!

Sometimes we need to talk to people who understand and who are not family or friends.

With good wishes!

Ros

Disclaimer: No attempt is made to diagnose or to make any medical judgement. You are advised to seek the advice from your own physician. LUpus Patients Understanding & Support (LUPUS) is not a substitute for your own doctor.

[PlacidWay]

I understand your situation especially if you just know that you have Lupus. But i think you will be okay, there are some research about Lupus treatment and one of this is through stem cell which is found in the bone marrow. I think this advancement can really help to cure lupus. Let's just hope for the best about this treatment.

[Georgia-11833]

Hi, Newbie! I'm new also. I'm still in the loooong process of my Rheumatologist actually giving me drugs at this time. I will know June 9. I am in Michigan, and the sun is beautiful but I can't go outside and do things and I'm depressed but my recent flare-up has subsided so I'm thankful for THAT.

It's 84 and humid and I just mowed the lawn in jeans and long sleeves and a HAT. Lol. I got poison ivy reaction last time I mowed and I wasn't THAT allergic to it before. But. My closest friends are dealing with cancer right now and I'm being supportive to them so, I'm not getting much support as I'm not as sick.

It's lonely but I do have one friend who has had SLE for 17 years. She replaced me at work when I retired and is in remission and is my inspiration.

I am hyper reactive to all meds so I am scared to death of the prednisone and plaquenil sides. So, I wait. June 9 cannot come too soon.

Happy Memorial Day to those who celebrate it on this blog.

Michigan Georgia