New diagnosis...: Hi! I am currently in the... - LUPUS UK

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New diagnosis...

Willow7733
Willow7733

Hi! I am currently in the hospital (3 weeks now) for blood clots in my lungs, left leg, and near my heart. I was just seen this week by a rheumatologist, and they determined the clots were from lupus after I gave them a family history, and after several tests. I was put on Plaquenil. Is that a usual initial treatment?

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Hi.sorry to hear you are in hospital. Yes hydroxchloroquine seems to be the foundation for lupus treatment with other drugs added in at a later date if needed.it takes about 8 weeks to start to work and eye tests are essential every year as it can cause retinal toxicity.ive been on it over 2 years now.I hope you are able to go home soon.be kind to yourself when you do xx

Thank you. I am happy they found out what was happening to me. I never noticed but right away he recognized the rash on my face. Had that for years, but never thought it was lupus. Hopefully things will get better now...

Be patient these drugs take months to work........ 6 months to get the full effect.its a long process finding the drug combo that works for you.i wish you well and send you hugs from a not so chilly Cumbria xxx 🤗 xxx

Wow! 6 months?!

Yep and if they dont work for you it's back to square one to try another so thats what I mean by a long process.i started hydroxy then they added azathioprine 4 months later.After 7 weeks i developed drug induced hepatitis and had to stop and wait 3 months for my liver to recover before starting mmf .so with the 8 weeks for the mmf to start to work it all took 11 months. I have my 🤞 you get to go home but please dont go home if there is a risk. Xx

Omg!! So it will be a long road...ok. I am a fighter. Bring it on! :)

You're a tough cookie and there is alot of support here to help you through xx

The pulmonologist said I am awfully strong (because I was still going to work the day I went to the ER), and my heart is very strong because no damage. It was working very hard. My hemoglobin (supposed to be 120) was 56. My pulmonary function test showed that I was using 56% of my lung capacity. They told me that the clots were so big and so close to my heart (and inch from my heart) that if I waited one more day, I would have died. But I am like that. Yes, I am tired. But I work three departments at my local hospital. Yes, my leg is so swollen...but that will fix itself! I have to learn to listen to what I am feeling and to go get help. I have learned a very important lesson.

Wow you have been extremely lucky.there are alot of compromises to be made in order to live with lupus.google the spoon theory xx

Compromises?

Yes........the need for sleep and naps to help combat fatigue,brain fog etc immunosuppression that comes with some drugs means you have to avoid people with things like colds,flu,stomach bugs and covid etc. Some dietary aspects, uv photosensitivty comes with lupus and hydroxchloroquine so no more sun.....the list goes on.Life isnt the same after a lupus diagnosis I'm afraid x

He put me on hydroxchloroquine right away. Then said as my bloodwork comes in he may add medication.

Many rounds of blood tests.mine are monthly.lupus isnt easy to live with ...its very complex and other AI illnesses go hand in hand .I see you already have another one ...I also have hashimoto's as well as lupus nephritis, sjorgens and b12 deficiency anaemia. I also have breathing issues xxx

I have Hashimoto’s, and asthma.

stiff19
stiff19 in reply to Willow7733

Love that attitude 👍😍 hope you feel better soon x

Morning Willow 7733, so sorry to hear you are in hospital. It was suspected I had a blood clot in my leg approximately 10 years ago, I had a nurse come to my house every day to give me blood thinning drugs.

After this I was sent for a scan and told I didn't have a blood clot at all and I was told the pain and swelling was Lupus related, the doctor called it a specific name but because it was a long time ago I have forgotten.

Lupus never fails to surprise us with the unpredictability of the various symptoms.

Best wishes, jx🙏

Good morning! Omg...the scans! I have had five since being admitted. The last one, I was going to be discharged after they read it...but they found the clots grew bigger!!they didn’t go down at all! I was told if I went home then, and something happened like go into my lungs or heart, I would be dead by the time the ambulance came. So I stayed here another week. Supposed to go home tomorrow, if my CT looks good. 3 weeks. I am so ready to go home!!

Morning Willow7733,I do hope you go home soon, although right now you are in the right place .

Best wishes jx

I am anxious to get home. When this all happened, my cousin and her mother (my aunt) were so kind to me. They went to my house to get things I needed. That was December 20th. They both people who are very snoopy and likes to get into everyone’s business. I have been trying to get my house keys back since December 23rd, but they won’t give them to me. Since I have been in the hospital, they have been in my house several times cleaning and going through all my private things - even my bedroom and closets! I have asked so many times for them to stop, I don’t like that, but they do it anyway! And the last time I asked my cousin to bring me back my keys (this weekend) she called my aunt who called me and accused me of taking time away from my cousin to be with her family! My cousin was off this weekend, and lives 2 minutes from the hospital! They are adamant that I only get my keys in discharge and only of my aunt comes to drive me from the front door to the parking lot where my car is. I am so frustrated at being treated like a child, and not being in control of my private life! I don’t know why they are doing this to me. I am a very private and independent person. This is a total breach of my privacy and I can’t do a thing about it! So frustrating!!!!

I am deeply sorry for all this dreadful stress you are being put through.... on top of your condition. There is one thing for sure Willow. You will get out of there. You will get your keys and you will get back in your home safe! Do not let this frustrating situation make you more ill. You are incredibly strong so focus on getting better and getting home, you can be in control of how you respond to your situation so every minute you are a step nearer being home safe, try not to let them wind you up, eat well sleep well take your meds and stay strong. You are a survivor and will soon look back on this from the comfort of your cosy arm chair . very best wishes Polly.

Thanks Polly. I have learned my lesson and will never give them that my lunch control over me again! I just barely stopped my aunt from hiring a cleaning company to dust my house...for $400!!! She told me I can afford it. How does she know? I live alone. I can dust my own house - for free! They are out of control. So stressful.

please dont let them make you more ill. if you can change something... do, if you cant for now, park the situ somewhere in limbo till you can. you are in control of how you respond, and if you fume about it youre giving them time and energy which you need yo heal yourself... you are whats most important so rise above them, take the high ground, and take back control asa you are able, hugs polly

I’m so sorry to hear you have all that added stress Willow. I think Polly’s advice is spot on. Concentrate on getting well enough to go home again and to blazes with the rest. 🤗😘

This morning my cousin called me five times. They were talking of discharging me today. So she is all full of anxiety. These people are so controlling! I didn’t answer. So sick of them in my business!

I hope you get home today Willow and are able to get your life back without the anxiety your cousin and aunt have been causing. I hope and pray you’ll get home and put an end to it. Try not to let it get to you as it will only make you worse. There’s nothing you can do until you get home.

Never ceases to surprise. I had my appointment with Prof D’Cruz before Xmas and I was blown away when he explained the links, things you wouldn’t think relate to SLE or AI’s and some you automatically assume are caused but are actually side effects of the drugs. As he said it’s constantly weighing pros and cons. But sorry Willow, I’m just adding to Strawberry lips, this isn’t something you need to worry about. Actually getting your dx is a huge step forward albeit in such a scary way for you. X

Willow7733
Willow7733 in reply to TM1970

Thank you so much! The hair loss...I have fiat fills every morning and I thought it was because of the low thyroid. But he said it is a symptom too of lupus! Does that stop??? I am scared ai am going to go bald!

TM1970
TM1970 in reply to Willow7733

Now that’s amazing you should ask, I have thyroid problems (oh my lupus loves to mess with it), and other endo problems which go hand in hand with my typeOf lupus and I’ve lost all my body hair and don’t sweat which I assumed was endo related but prof D’Cruz said it’s caused by lupus. So when they get that under control it should stop. Now listen, one thing at a time, don’t be reading too much. Lupus is so multifaceted and sneaky, take one symptom at a time or like me you’ll associate everything with it and it takes up all your mental energy. Rest and get your strength back. Xxxx

I hope you feel better soon.

Have your doctors mentioned Hughes syndrome/APS/"sticky blood". Often associated with SLE/LUPUS.

ghicworld.org/

healthunlocked.com/hughes-s...

Blood tests

1) anticardiolipin,

2) beta-2 glycoprotein I (β2GPI),

3) lupus anticoagulant.

They need to do these tests twice, 12 weeks apart, to exclude false positives.

Willow7733
Willow7733 in reply to baba

They did. Because they can’t find any other reason for so many blood clots and they are big! I saw several specialists, and they haven’t seen such a bad case as mine. They said there are no studies, so no protocol to treat such a bad case. I am lucky I am alive. As soon as I mentioned my sister has Lupus, the hematologist face kit up. Suddenly I had many blood tests ( they took 12 tubes of blood). Next thing I know, a rheumatologist came to see me, and told be I had APS secondary to lupus. They switched my blood thinner ASAP from Xeralto, to Coumadin. They said lupus patients respond better to the older blood thinner. It has all been happening so fast. I haven’t even read really what is lupus yet.

baba
baba in reply to Willow7733

It must me a shock to you but good to know you are receiving the correct treatment. There is lots of reliable information and downloadable leaflets etc on the lupus uk website.

lupusuk.org.uk/

Also at

ghicworld.org/

Willow7733
Willow7733 in reply to baba

Thank you! I will check them out today! They told me today that I am ready to be discharged this week.. hopefully tomorrow!!

Tiggywoos
Tiggywoos in reply to Willow7733

Hi Willow7733

I am so glad that you’re on this forum because everyone on here will send you so much love and healing hugs 💕

You sound like such a tough cookie and whilst it’s a dreadful shock to get your diagnose at least now you will be put on the correct medication .

Stay safe and strong xxx

Welcome Willow!

Sorry to hear you have had such a tough time with your health and the family difficulties, but sounds like you had a lucky escape also which may give you a new perspective and ability to appreciate lots of little pleasures life gives us! I know I have changed my outlook since my lupus diagnosis November 2019.

As others have said you a definitely in the right place for support and information.

It can be really overwhelming such a diagnosis, especially when it comes with a big hospital stay at the beginning, and lots about what you read may sound scary. But equally it’s really treatable and many of us can live almost normal lives when the symptoms are under control, as long as you follow doctors advice! :)

I also have SLE, some mild kidney involvement (nephritis) and also APS - no blood clots just high risk of them. I found hydroxyxhloroquine great, plus prednisolone, azathioprine (immunosuppressant), low dose aspirin - they kept adding as more tests came back. It works well as a combination for me and there’s no reason why in a while I can’t start reducing things if they settle. I was able to work full time through all of this, only recently I’ve needed to take some time off work as I’m pregnant and exhausted!

I wish you all the best on this journey and remember you aren’t alone! X

Hi Willow, I’m so sorry to hear what you are going through and you are obviously a lady who pushes herself to the limits. But it is time to take a step back and learn to have quiet relaxing moments and put your feet up (very good for your legs too). I’ve been on Hydroxychloroquine for almost 8 years now and apart from developing a floater in each eye, which may not even be related to the drug, I’ve had no side effects so far. I didn’t have my annual eye check last year so will chase that up. Thanks for the reminder Spanielmadlady. But I’m sure you’ll feel the benefit of the drug after a few months although I have to say psychologically I felt better immediately knowing my problem was at last diagnosed and I was getting help. I’m sure you’ll have had those awful blood thinning injections in the stomach but are you on an oral blood thinner too? It could be you have Hughes Syndrome or sticky blood, discovered by Graham Hughes the Lupus expert. It caused miscarriages in my youth , migraines, dizziness and other undiagnosed symptoms. But I’m permanently on an aspirin (enteric coated) per day now for it and my heart. I hope you are feeling better soon Willow . So glad you reached out to us here. We’ll all be thinking of you. 🤗😘

The clots from my left calf, all over into my lungs and then almost to my heart really scared the specialists! They never saw it that bad before. And as soon as I mentioned my sister was diagnosed with lupus two years ago, it was like a lightbulb went off. Their faces changed, and next thing I know I was being seen by a rheumatologist. They think I have Antiphospholipid syndrome secondary to the lupus. I was on Xeralto at first but as soon as I had the lupus diagnosis, it was changed to Coumadin. Oh yes! I have had the needles in the stomach for many days. They just stopped it. Happy for small things! ;) My #1 lesson I have learned is that I have to slow down and listen to myself when I am doing too much.

I thought you must have Antiphospholipid (also known as Hughes Syndrome as he discovered it, and ‘sticky blood’ which are easier to remember and to spell😆) which is quite common to Lupus patients. I’ve had the stomach needles too but not as many as you have had but then I wasn’t anywhere near as badly affected. You’ve had a very close call Willow so I’m glad you are going to listen to your body from now on and slow down and rest when you need to. Take good care of yourself and keep us posted with your progress. Very best wishes. 🤗😘

I have lupus with secondary APS with history of arterial clotting, multiple strokes and kidney clots a few years ago. HCQ, a statin, warfarin and with arterial clots low dose aspirin are the go to drugs for our disease especially after a clotting instance. Ask about a statin even if your cholesterol is low. I had the cholesterol of a ten year old at time of my clots and was still put on a high dose of Lipitor for it supports endothelial health and is now shown to improve aps outcomes greatly.

There is lots of hope. I have felt better than ever after my strokes. I was an anxious mess right after my release from the icu so I did start therapy for ptsd. Part of my therapy included walking at least thirty minutes three times a week I do this everyday for two years. My immunologist recommend eating forty grams of fiber per day and improving my sleep. After initiating these changes plus taking my prescribed meds all my antibodies are non detectable and I feel better than I ever have. I actually do better without the spoon theory. That philosophy makes me think about illness too much and makes me feel sicker not healthier. I focus only on my better health and if something is bothering me I meditate, exercise and usually I can handle life. I have not taken a day off from work in two years with this new lifestyle nor have I felt low of energy.

You got this! Follow your doctors’ advice, ask about how much you can start doing upon release you might be surprised how much you will be encouraged to get moving. After a clotting incident the best thing to do to prevent reoccurrence is to keep moving not resting. Do work on reducing stress though calming down is great and is different than slowing down.

Good luck!

Willow7733
Willow7733 in reply to Roarah

Wow thank you! I feel this hospital stay will never end...

Hi Willow,I’m so sorry it’s attacking you in this way but thank God they found it. Plaquenil worked great for me quite quickly but it’s the bloods they look at so it may (🤞) make you feel less tired and help with the general malaise and that’s always good, but if your bloods don’t buck up their ideas they’ll add in what they need. I wish you the best xxxx

Hi Willow, how scary for you. I hope that you will soon recover well enough to go home. Big Cwtches xx

Thank you! Hoping to go home today. Nurses keep asking me if they mentioned to me when I am going home (so that is a sign I think). And the doctor who was on call this weekend told me that another doctor will see me today and that when I get discharged, Dr Mallet will be following me. Why would they all be saying that if I am not close to going home. So ready!!!!

I bet you are. Fingers crossed for you Willow 🤞🏻 xx

Thank you!! 😊

I am home! Was discharged yesterday. My bed...I have missed my bed. 😁👏🙌

Great news.

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