Newly diagnosed

[Jazzingjilly]

Hi .. I’m newly diagnosed with lupus and am absolutely devastated.. I’m reading lots about this condition but am not taking any prescribed meds for this at present as I’m already on quite a few for ongoing health problems .. any words of advice as to the way forward would be appreciated

[LupusKaren]

Hi JJ, my advice, try not to read too much information all at once, take it in small manageable sections. Newly diagnosed is a scary place to be, but as I am 9 years down that road, the better informed you are on the condition, the better able personally speaking, I am to deal with the disease.

It is a huge diagnosis, and I think at some stage, we all go through varying stages of emotions, this is entirely normal, but you are not alone, we are all here for the same reason, and this group is so supportive, with lots of knowledge.

To close, it is key in having a good GP and a Rheumatologist who understands Lupus, going forward.

[Jazzingjilly in reply to LupusKaren]

Thankyou for your advice .. I’m in a muddle with appts waiting to see my GP but it’s a 2 week wait and hospital “will be in touch” so I’m lost in a wilderness of information that I’ve Googled .. but now I’ve found this group I fell sure I will get some help

[Tiras]

I Agee, do not try to read and learn everything at once! I was diagnosed with lupus (SLE) approximately 7 to 8 years ago, I did not even know what Lupus was at that time? Starting doing extensive research (googling) there is way to much to try and take in at one time. If you try doing to much at one time you will miss and or forget important facts and symptoms. And what to expect. Take it slow and let all the information sink in! Even when you get medication, read and understand the side effects, there are literally hundreds! For example, if you take methotrexate, you also will have to take folic acid for the methotrexate. It can and does get complicated!

I hope this will help you some?

[Jazzingjilly in reply to Tiras]

Thankyoy Tiras .. I know this is a long journey I’m about to take but hopefully with good medical care I’ll manage the symptoms

[Shorthouse]

I have had this for years I believe pregnancy triggerd mine 39 years ago.only been diagnosed 4 yrs ago .i don’t take any lupus meds (yet) hopefully never’ drugs don’t like me .and visa Verda.i’m on warfarin & it doesn’t mix well with other drugs .your consultant will advise you.look into the auto immune diet.not easy but helps.you will lose weight too.x

[Elishaannxx]

Hi I’m Elisha I’ve newly diagnosed as well, and I’ve not been given any mediation yet as I’m on loads all ready for all my other health problems, they diagnosed me with rheumatoid Arthritis they tried me with a steroid injection but it made me worse I’m going back on the 11th March to see what there gonna do next, I’m really new about it all as well I had never heard it before until I developed a butterfly rash on my face and went to the gp x

[Jaguar50]

Hi guys, I was diagnosed with having lupus 12 years ago. It all started with dark blotches appearing randomly on my face. A biopsy confirmed the diagnosis.

I much later realised that my lupus flare ups were very much related to the worry and psychological stress I was undergoing.

Again as mentioned by others, a good doctor (rheumatologist, dermatologist), who will have a wealth of lupus knowledge, is a must.

Commencing an autoimmune diet and trying to control those stress levels goes a long way in helping to reduce future flare ups and managing symptoms.

If you smoke, you really do need to kick that habit into touch. It’s not good for us anyway, but especially people with lupus.

Posting how you feel, or any questions you may have on this forum will be a positive for you also, there are some great people on here who will give advice through their own knowledge and experiences.

[Raceworks52]

Hi JJ I agree with the advice the other members have posted. Don’t get too involved researching everything on lupus. Wait until you know exactly what is going on with yourself first. Stress will certainly add to your lupus flare. You do need your GP to refer you to a good Rehumatologist. I have had lupus 36 years I have my ups and downs and I have children both healthy. I am from the UK currently living in South Africa. The sun effects my lupus but you make a plan. You will get through it don’t worry you must take each day as it comes. I wish you all the very best.

[Kizzy_68]

Hi, I'm still finding my way too it seems like an overwhelm of information. I brought one of the books recommended by Lups uk and I've dipped in and out every few days. My advice maybe try not to rush, read a bit here and there and build up your knowledge slowly. I've started with the key bits which effect me and not worried about the things I am not challenged with...I can come to those at a latter date . I've really focused on food and finding out food that are useful to the body in different ways, and foods that are not helpful like too much garlic or alfalfa. My Rheumatologist has backtracked slightly and is looking at more rare autoimmune conditions so isn't now confirming Lupus, might be might not be....so I don't know where I am at the minute! I hope you find a useful direction with caring for yourself through this. Best wishes x

[Hidden]

Hi am so sorry you have been diagnosed with lupus as it Must be such a shock but in time you will have more information to help you deal with it. You need little or no stress, a very good healthy diet, keep a diary as in time you will find a pattern to what’s triggering your symptoms and try anything positive that helps you. I find being in the steam room helps me and drinking 2-3 litres of mineral water not tap water (as it’s filled with all sorts of crap) this makes the symptoms less noticeable for me anyway. No smoking or drinking if possible. Get fresh air and small amounts of sunshine. Wear the highest sunblock you can find and apply this to your skin daily. There are many stages of lupus and it affects people differently. This site is filled with valuable information and the people on it are so helpful. I myself am being investigated for lupus and I have hundreds of symptoms and dozens of illnesses. You mentioned your health not being great so I would research them too. See if they link in with lupus and If you can tolerate supplements try seeing a herbal practitioner as they may be able to give advice. any issues you have get back on this site and someone will want to help you. Try going all natural. I have changed all my toiletries and make up to more natural ones. All my cleaning stuff is out and I only clean with aromatherapy oils or natural cleaning products as I was told the bleach and other stuff was a hormonal

Disruptor. Get your friends and family to help you and you need lots of laughter as you will be on a rollercoaster of emotions. Keep an eye on any new symptoms and put them in your diary and if you have any skin rashes get photos of these to show your rheumatologist. My rheumatologist told me once you have one auto immune disease you usually have a few more. I know it’s scary but with more information and the right care you will manage this and in time it won’t seem as scary. When I was told I may have lupus as I am being tested for it and am on the lupus medication called hydroxochloroquine which does help. Ask if a steroid injection would help as it works wonders for me. I cried and cried in the beginning but slowly it’s sinking in and I know you will find a way to cope and manage your symptoms. Get plenty of rest and don’t take on too much as it can be overwhelming. I wish you all the very best of luck so chin up and you will get through this. Have a great weekend and write down all the questions you want to ask a rheumatologist and just hand it to him. At least you will get more answers and more information which is a start towards your recovery even though it’s a life alternating condition you will be able to manage it with the right care a positive attitude and the love of family or friends. It’s what helps me. Good luck and get back on this site if you need any more information help support or advice. Take care. 😀

[Peppytea]

Hey Jazzingjilly 🌼

Bless your heart - it’s so difficult to have a diagnoses of any kind so I feel for you. I haven’t been diagnosed with lupus myself yet but I am aware it will take a long time, but I do have other illnesses.

I think one of the best pieces of advice I learnt was acceptance. Acceptance of the illness and of your new self. To not give yourself a hard time over something you didn’t do and can’t change. It’s a good start, but can take years to fully realise it. I know it did for me and I have myself such a hard time about it I made myself ten times for sick than I needed to be.

Best of luck chicky and I hope you get on ok. Please let us all know how you’re getting on. Best Wishes, love and take care 💖🌟

[MegaraLee]

I have only been diagnosed for a few months, but my best advice is to be patient with your body and remember persistence with your doctors is very, very important. Sometimes I have to contact my medical team more than I would like to, but it is necessary to receive the individualized and specified care needed for Lupus. Also, if you feel that your care team is not listening to you enough, don't hesitate to travel to see a better one or get a second opinion. Lupus and everything about it can be overwhelming, don't feel bad if you become emotional at times especially when trying to understand it.

My doctors think I may have Neuro Psychiatric lupus so I am not on treatment currently either until I go to Mayo Clinic next month. I was only diagnosed in the begining of january, and I can't sugar coat how rough it has been since then. Supportive company can be a life saver, same with music and art or reading. Also, don't be afraid to ask for help if/when you need it.. Lupus can also be very self limiting, which is frustrating, but much easier with needed help if possible. On rough days take it easy and don't push yourself, you'll likely feel it later if you don't rest enough and give your body what it needs. I hope your care team can come up with an effective treatment method for you ASAP and I wish you the best of luck. Stay positive!

[Krazykat26]

Hi JJ

What u are feeling is absolutely normal..getting a diagnosis of lupus is devastating..I hadn't even heard of it until I was told I that I have it!!! U have done the right thing making contact with this forum because u will find out loads of info from people who live with autoimmune conditions..day in day out!!

The lupusuk website is very helpful..after diagnosis I joined n for £10 membership for a year I get quarterly magazines. Then I joined healthunlocked n realised that it's not as rare as I thought it was!! I have found this forum extremely helpful n I now have more confidence when talking to doctors n have found that I'm more educated than they are!!!

I have just bought a book called 'Staying sane in pain' by Karen Drennan McEwan n I would strongly recommend it..easy to read n understand it's my go to self help book!! I got my copy from Amazon n it's £12..worth every penny!! Karen herself has lupus n she is a psychotherapist..lots of tips n advice on how to live with lupus.

Do keep posting with any queries or just to update us on how u r getting along..good or bad..there's usually someone hanging around..this is a very active forum..surprising really as we're all pretty knackered most of the time!! Stay as strong as u can n remember that u are not alone!! 💐Xx

[kyliexc]

Won't repeat too much of what was said above, but just want to give my reassurance that you WILL adjust to this 'new normal'.

I was diagnosed 2 years ago, and remember being overwhelmed by having to take medication everyday - especially coming from a place where I used to have no health problems at all. Now I am extremely grateful to have a treatment plan that keeps it under control, knowing that I have a team of specialists who I get to go see every 3-4 months or ask questions if I need it before then, and understanding what works for me! Don't think that life has to change drastically - I was still able to travel Europe for a few months, eat what I wanted (aside from drinking too much or too often), and sun doesn't affect me. Lupus is different for everyone, but just know you will adjust, even if it feels a bit daunting at the moment. X

[jacqueline121]

I agree with all the advice given, rest, healthy food, lots of fresh air when possible, good friends, etc.

I’ve also found that chamomile tea helps long term. It is anti inflammatory and good for feeling calm.

Best wishes

[Tui16]

It is really hard to accept that you have a life long illness, and I remember crying 4 years ago when I was given the diagnosis and thought of having to take medications everyday. I feel for you so much. Although I have had flares, I have found over the last 2 years more and more helpful information around functional medicine and trying to look at why my body might have developed this auto immune disease. There are some great blogs out there.. lupus rebel, mindbodygreen, paleo mum, just to name a few. They will provide you with information around health (microbiome , leaky gut), diet and exercise and how you might be able to work towards a healthier you, alongside the care that the medical doctors can give you. I moved to a gluten and dairy free diet just over a year ago, and immediately the tiredness and pain receded. My anti phospholipid antibodies have also gone. I still do have low dose steroids and I believe the are still things within my diet that impact my lupus, along with the UV, as I now live in NZ. What is important is to realise you will have bad days, but that also there are things you can do to make you feel like you are still in control of your body,not the lupus (which it does feel like at times) I wish you well and hope that something I have said leads you to a healthier place xx

[Jazzingjilly in reply to Tui16]

Thankyou .. i've discovered lactose free milk and now so many other products i'm able to buy as i have suffered hiatus hernia acid reflux for years .. feeling positive about diet now

[Paul_Howard Partner LUPUS UK]

Hi Jazzingjilly ,

Welcome to the LUPUS UK Community Forum. I hope that you will find this a helpful place for information and support. I can understand that you don't want to be taking any more tablets than you need to. Have you discussed this concern with your doctor? What treatment(s) have you been prescribed following your diagnosis of lupus?

On our website we have an article about getting a diagnosis of lupus which includes information about support if you have recently been diagnosed. You can take a look at lupusuk.org.uk/getting-diag.... If you need any other information about lupus or LUPUS UK we also have a free pack which you can request or download at lupusuk.org.uk/request-info....

If you have any questions, please let us know and we'll do our best to be of assistance. Please keep us updated with how you are getting on.