Overwhelming

[Dgfarrell]

I have just been diagnosed with lupus. There is too much information to take in. I have no idea what to expect. Scared

[Wendy39]

Hello. And welcome to our lovely site. I was diagnosed with SCLE in October 2013 but I actually think, with hindsight, that I'd had lupus following the birth of my third child in January 2008. So really 9 years altogether, 3.5 since diagnosis. I still remember feeling overwhelmed, scared and alone. But you aren't alone. This site has been a life line. The support has been amazing and continues to mean the world to me. Thevthing with lupus is that we all have different symptoms and treatment plans etc but on here there is always someone who can help or understands. Would you mind telling us a little more about yourself? About your symptoms, your medical team or what medication you have been given? We all really try to help each other out here. I would say, keep a record of your symptoms and your medical appointments - I find this helps, as my memory isn't what it used to be. I get skin issues and I take photos of my rashes etc and keep them, as proof, as Sod's law when you see the Dermatologist the rash has gone, just for example. Anyway, that's enough for now. Welcome and I look forward to hearing more from you.

[Lupiknits in reply to Wendy39]

I agree very much with Wendy. The support here is wonderful, there is always someone who can always help and give info, and as we all have a different variety of auto immune problems, it's such a boon x

[Dgfarrell in reply to Wendy39]

Hello. I am 60 years old. I worked out with weights foe 12 yrs. Hike 5 km a day. Always sore muscles afterwards. I thought it was normal. At xmas 2016 I developed sores in my mouth and esophagus. Burning sores. With antibiotics it went away. Then in January 2017 I developed swelling and extremely bad joint and muscle pain. I was told I had a parasite Caledonia blasto hominis. Aftee 10 days of heavy antibiotics it was still there. I developed even more pain so I could barely walk. Funny when I did walk it didn't hurt. The internal medicine doctor said he was sure it is lupus. He gave me 50 mg a day of prednisone and I am better. My breathing is off though. Next step is a rumetoligst next week.

[Wendy39 in reply to Dgfarrell]

Thanks for that very helpful reply. Wow, yours appears to be quite a quick decline in your health, am I right? Did you have any blood tests done yet? 50mg is quite a high dose of steroids. The max I've ever had is 20mg and tapering over 5 weeks. Are the steroids helping?

[Dgfarrell in reply to Wendy39]

The steroids are a miracle. I don't want them though. I had blood work galore. My esr level for inflammation should be 20 and I am at 48

[Dgfarrell in reply to Wendy39]

I am hoping for non steroids drugs. I gained 10 lbs before I was diagnosed too

[Wendy39 in reply to Dgfarrell]

I think when you see the Rheumatologist, when did you say your appt was?, you will be put in a drug for more long term care. Most of us lupies start in hydroxychloroquine. I'm on 2 x 200mg a day of that. This is a starting block. Then depending on your bloods and symptoms etc, what is known as steroid sparing drugs are used. I'm on one of these on top of the hydroxy. My steroid sparing agent or immune suppressant is called Mycophenolate Mofetil. But there are a few different options. If you have a good Rheumy they will talk you through it all and discuss your options. The rheumies would rather try other options than keep people on high doses of steroids long term. It's such a shame steroids have such serious side effects. When I was on them last year, I felt great, like a new person!!! The Administrators of this site work for the charity Lupus UK and I'm sure on Monday they will see your message and reply. They like to great all new comers. They can also tell you where the lupus centres of excellence are, which rheumies can be recommended in your area and where there are lupus nurses. They are a small charity but do amazing work for us. When I was diagnosed I ordered a number of books from their on line shop. I like to be armed with as much info as possible. Also look at their website as they have links to some great information leaflets too. If you have any other questions or concerns, please ask. Good luck.

[Dgfarrell in reply to Wendy39]

Next Friday I see the doctor. I has a couple of low alcohol drinks with hubby last night 3%. Could this cause a flare up?

[Joyandsleep in reply to Dgfarrell]

My water pill helped with the swelling from prednisone. Ask your doctor

[Joyandsleep in reply to Dgfarrell]

Prednisone is the a wonder drug for Lupus but you can get a hump on your back after years of consistent use. When Lupus attacks the lining of my heart I too have shortness of breath. If it attacks the lining around my lungs, I get strong sharp pains around my rib cage. Pain can pop up at anytime for seconds or weeks. If I am walking I know its a good day. Setting goals has helped me a lot. I enjoy being busy so when I am resting and my mind is alert I do mental work, reading, paying bill, etc. If my mind is foggy, I use my hands to create crafts, or mundane jobs.

It helps to know what you are going to do when you are suffering before the suffering starts. It can be difficult to decide what to eat for lunch when you're ill so pre -plan like a rainy day schedule.

[Joyandsleep]

Take it in a little at a time. But realize when you have a flare-up rest. Yes rest may mean changing your lifestyle. You may need help occasionally to cook or clean for you, that's OK. Be aware where your pain is, because it can change. Usually it will attack the weakest part of you body following a virual infection or other illness. Sleep when your body wants you to sleep in short naps. I find 10minutes to 2 hours helps a lot. Ibeprofen will help but never, never take it on an empty stomach or you will end up with ulcers like me. Keeping a log of symptoms always will help when you have brain fog. I also suggest not driving when your brain in not share or you are extremely tired. I watched a lady pull into a parting lot and she was so sick, she hit 4 cars before I could ran to her car and tell her to put it in park. If your family is healthy, give them a few years to understand your illness and tell them what you need, nicely.

[KimbieW0023]

I was just diagnosed a week ago, you're certainly not alone, friend. At first it is very frightening, believe me, I know. There is so much information out there and so much of it is so scary.

It does get easier, the shock will wear off a little, and you'll be able to start making plans for your treatment and care. Try to not worry too much about tomorrow, just for now. Take it one day at a time, focus on taking the best care of yourself you possibly can. Answers to all your questions will get answered, maybe not today or tomorrow but they will get straightened out.

You have people who care and know what you're going through. Big hugs.

[Lucy_31]

Hello Dgfarrell

Don't be scared. My first piece of advice is do not believe everything you read on the internet. The best information I received was from Lupus UK head office and the regional groups. The office staff are lovely and can put you in contact with a Lupus contact in your region in the UK who can listen. Its always best to talk. Also keep a record of your symptoms and feelings in a daily diary, then when you have an appointment with the consultant you can discuss the same to seek advice.

Take care x

[Dgfarrell in reply to Lucy_31]

I am trying positive. My breathing is worse than all the symptoms

[Dgfarrell]

I feel like it's a death sentence right now. Alot of horror storise on the Web. Funny I was completely healthy until 3 months ago and the blastocystis hominis showed up. I somehow feel it is causing this and if I can get rid of it I will be better

[Lucy_31]

Don't read the horror stories. I made that mistake when I was first diagnosed. 100% better to talk to people to get the correct information. Stay positive and keep a diary of your experiences/daily symptoms to discuss with you consultant x

[Kevin53]

Not easy, one step at a time. You will get plenty of support from this site and please speak to one of many qualified Lupus UK contacts. Best wishes Kevin. Trustee Lupus UK

[Dgfarrell in reply to Kevin53]

I went to emergency last night. Very hard to breathe. Doctor said it's a flare up symptom of lupus. I hope this doesn't last

[Chanpreet_Walia LUPUS UK]

Hi Dgfarrell,

Welcome to the LUPUS UK HealthUnlocked Community!

Don’t be scared, you are not alone. Using an online sociable forum such as this one; gives you the opportunity to connect with other people with lupus and can help relieve the worries you may have by hearing other peoples’ experiences.

We offer free easy-to-read information packs that can be downloaded or requested here: lupusuk.org.uk/request-info...

We also publish informative factsheets and guides on lupus and several relating topics such as: the skin and hair, blood disorders, lupus and men… which you can access online: lupusuk.org.uk/publications/

Here is a link to our ‘Regional Group Finder’ on our website where you can find a local contact who you can talk to over the phone: lupusuk.org.uk/regional-gro... . Our contacts are volunteers, who most likely to have lupus themselves; they are not medically trained but are there to offer support and understanding. If you need more information you can email me at [e-mail]