Just diagnosed Lupus today

[MissFG]

My rheumatologist has just diagnosed me today with LUPUS. I have also suffered with Hashimotos Thyroiditis diagnosed a year ago. Although it's been difficult getting my thyroid under control I now worried about how Lupus and the medication might affect me in the future?

They're running more tests and put me on Hydroxychloroquine today. And she mentioned connective tissue disease - is this what Lupus is?

I thought my extreme fatigue was down to my thyroid but going on T3 has helped since January but fatigue still has a big impact on my day to day life. I also have painful muscles and swollen painful finger joints. Obviously other symptoms such as hair loss etc overlap with hypothyroidism. Luckily I'm not overweight however I have very little appetite and saw these new drugs don't have very nice side effects including loss of appetite.

I supplement and am going to join my local gym but mainly for the saunas as they really help my muscles.

I suppose what I'm really asking is I feel like my life is on hold I can't hold down a full time job, have dropped out of uni and I'm wondering if I'll ever get back to normal. Contending with one autoimmune disease has been hard but Lupus as well makes me feel ill never be in good health again

[misty14]

Hi missfg

Welcome to the forum, hope it will help you feel less alone. Having one auto- immune illness is tough but another on top diagnosed today is tougher. Glad you've been put on Hydroxy and are awaiting more tests. Hydroxy takes a while to kick in and can be good for the fatigue and aches. You need to give yourself time to adjust to these diagnoses and for the medication to work. There's no reason why you can't lead a relatively normal life but you might have to change things like not work full time, pace activities during the day, getting plenty of rest is also helpful to minimise flares. You mention dropping out of Uni which must have been hard. I wonder if later on you could join the Open University where you can study from home and go to summer schools ?. Being diagnosed with a chronic illness like lupus takes time to adjust to so be kind to yourself, who knows what you will achieve!. Keep us posted how you get on with those tests and lots of TLC. Lupus is a connective tissue disease which is another way of saying auto-immune. X

[MissFG in reply to misty14]

Thanks Misty14! Tbh I've lost all my motivation for anything. Fingers crossed hydroxy helps she said 3-6 months but least I'm now getting treatment. Is hydroxy a common treatment for Lupus? My rheumy said they were waiting to see how my symptoms progressed before giving a diagnosis & treatment is this normal? Can I expect to get progressively worse? I think that's what really worries me? Ive spent the last year researching hashimotos but Lupus I have no idea what to expect or the impact it will have on me and from what I've heard it's pretty scary

[Charliebear68 in reply to MissFG]

Hiya MissFG,

I understand that it feels like you're alone but finding this forum is like finding an old friend.

Read through some of the older posts on here - they're very helpful. I'm nowhere near to being diagnosed as I have a terrible GP but I am in the process of changing so fingers (albeit they're stiff and very painful!) crossed.

You keep on here chick and the wonderful, knowledgeable, caring people will support you all the way.

Take care,

Charliebear xx

[MissFG in reply to Charliebear68]

Thanks I found Thyroid UK when I was first diagnosed a year ago and it's been a huge help in getting me where I am today! Looks like I'll now research Lupus and try to understand what I'm dealing with.

Maybe I'm lucky to have such good consultants looking after me to get a diagnosis so early on compared to many! Hope you too get sorted quickly and get the help you need x

[misty14 in reply to MissFG]

Hi missfg

Hydroxy is a very common treatment for lupus. You'll find a lot of people on here who take it. I hope your Rheumy organises a yearly eye check for you. That's important!. It is very usual for Rheumy's to do a wait and see on these illnesses because they can give changeable symptoms!. There's no knowing how you will be, you may be very lucky that the lupus symptoms keep being mild , respond well to the Hydroxy and keep away for months on end!. Be careful what info you read about lupus, keep to reputable sites like lupus uk as info online can be very scary and inaccurate!. The website patient is also good as its run by doctors themselves. Lupus uk have a welcome pack for new members giving good info about lupus. If you'd like one email Paul Howard [e-mail]. It all must seem very overwhelming but given time and feeling better it won't seem so bad!. When do you see your Rheumy again?. She sounds very good. Keep us posted and take care. X

[MissFG in reply to misty14]

I think I was left as I had a lot of issues getting stable with my thyroid. Yes she mentioned about eye tests luckily I've just had one. Unfortunately I've been so sick this past 12 months and have lots of stress my daughter got hit by an illegal driver last April and in the last two weeks has been diagnosed with polycystic ovaries and a tumour so my stress and anxiety levels are always high which I know is having a huge impact on my health. I'm back with my rheumy in 3 months but she's arranging lung and heart X-rays first. However getting that 3 month appt is a different matter as it's such a busy dept I've found. However I've learnt to call and hassle to get seen and looked after. It's sad but true that you have to make some noise to get seen!

[misty14 in reply to MissFG]

Hi missfg

Sorry you've also had such a stressful time with your daughter's diagnoses!. Hope she is getting the treatment she needs!. Some Rheumy clinics let you make appointments there and then if they're three months or below. Mine does!. It's good you have the confidence to chase. It's easy to be forgotten in a busy NHS!. It's the only way I've got things over the years!. All the best for the heart and lung tests. She's being very thorough wanting baseline results to compare with!. X

[MissFG in reply to misty14]

My hospital lets you book too unfortunately there was no way I'd get another appt in 3 months so I'll wait for a letter see when my next one is and then get on the phone

[misty14 in reply to MissFG]

Good plan missfg!. Good luck. X

[Shaysuekirk in reply to MissFG]

I have both as well... It seems that autoimmune diseases come in clusters. I also felt better after the thyroid treatment, but then we added hydroxy. She's right that it will take 3 months or so to really work, but it will! I've felt so much better.

[MissFG in reply to Shaysuekirk]

Thank you that's good to know! I've been so upset all weekend and none of my friends understand why I'm fed up? Just feels like a death sentence right now whilst I feel so sick but I just need to keep positive that hydroxy will help I just need to be patient x

[Shaysuekirk in reply to MissFG]

It really does!! When I got the diagnosis, I cried and cried. But, a year later it's not so scary. It's more of an annoyance. I also take gabapentin which will help you a bit until the hydroxy kicks in. It's been great for the pain and other weird symptoms - hot flashes, numbness, tingling, etc.

[MissFG in reply to Shaysuekirk]

Just wish it would help now and not sure my gp would give me gabapentin but I'll ask tomorrow see if he'll prescribe it for me. Does it help with joint and muscle pain? I've got thyroiditis at the moment and not sure if that triggers a flare with lupus too? But think that's why I feel so low x

[Shaysuekirk in reply to MissFG]

It does help with the joint and muscle pain. And almost every other symptom that you might have. It works more immediately. It took away my nausea, and so much more. You can stop it when the hydroxy kicks in, but i've opted to keep it b/c it also helps with my anxiety. I have a very low dosage, but take it 2-3 x's/day.

[MissFG in reply to Shaysuekirk]

Great I'll ask tomorrow as I have bad anxiety too but my muscle and joint pain is another big issue for me

[MissFG in reply to Shaysuekirk]

I got done gabapentin! But pharmacy said it can make you drowsy does it you? I'm already half asleep and feel like a zombie x

[Shaysuekirk in reply to MissFG]

Not really. The first week or two, I took a smaller dose and kind of felt giddy? Like you have had a couple of cocktails. But, that goes away. I'm actually much LESS tired than I was before. I think the pain and other stuff wears you out.

[MissFG in reply to Shaysuekirk]

I've been prescribed 300mg one today two tomorrow then three everyday after - does this sound about right? Strange you increase over 3 days. Pharmacy said it takes a few days to a week to work but I feel quite relaxed after one earlier today but I'm very sensitive to any changes in medication. I feel a little on a high but it's quite nice lol

[Shaysuekirk in reply to MissFG]

I think that sounds right. I used to take anxiety meds 2-3 x's per week, but I haven't needed them, but one time, since I started the gabapentin (and the one time we had a sudden death in the family!).

You might not need 3/day. I find some days I need a little more and other days i just take 2.

The "high" -- That will wear off after a couple of weeks. but, at first it does feel like you are a little tipsy. DONT drink alcohol. One glass of wine tops.

[MissFG in reply to Shaysuekirk]

Great thank you! I usually take propranolol am I best not taking them and just see how I get on with the gabapentin? I must say I feel so relaxed the first time in weeks and I'm not shaking as much! I'll stick to two a day and see how I feel x

[Shaysuekirk in reply to MissFG]

I also had to take propranolol. BUT - since my thyroid and Lupus are under control, I was able to come off of that one. Apparently, thyroid and lupus can both mess with your blood pressure and heart rate. I get small episodes still, but i know it's not a cardiovascular issue and it goes away.

Getting rid of the fear will help you tremendously. It just takes time.

[whisperit]

Hello and welcome MissFG,

Just to pick up a couple of points in your post:

- hydroxychloroquine is a standard treatment not just for lupus, but for many auto-immune conditions. It has a good safety record, and few side effects

- "undifferentiated connective tissue disease (UCTD)" is a diagnosis closely related to lupus. As you probably realise, the boundaries between the diagnostic labels for lots of these auto-immune conditions are a bit arbitrary. So you may find that different clinicians will use slightly different terminology to describe your condition, depending on their personal take on things

- I really sympathise with that feeling of "life being on hold". Uncertainty comes with the territory. But I don't think you need to abandon your future plans; if you can, try to keep your options open until you get a feel for how your individual brand of lupus affects you and how best to manage it. I definitely wouldn't rule out returning to college at some point

Hope things go well for you in any case x

[MissFG in reply to whisperit]

Thank you x

[Shaysuekirk in reply to MissFG]

Definitely! Don't give up on life and school. I've been very lucky to be able to work from home. I do a lot of freelance advertising and it works well with my new "lifestyle". You can do it and you can be prosperous. Look into online classes if you have to, but do not give up.

[MissFG in reply to Shaysuekirk]

Thank you I will! X

[Paul_Howard Partner LUPUS UK]

Hi MissFG ,

Welcome to the community forum. I see that you've already received some really helpful and supportive comments from other members which is great

Connective tissue diseases are a large group of diseases that primarily target the body’s connective tissue (the “glue” that supports organs and other parts of the body). Examples of connective tissue are bone, cartilage, blood, and fat. Many CTDs involve abnormal immune system activity, and are associated with a combination of systemic autoimmune diseases. A connective tissue disease can also be defined as a systemic autoimmune disease. Systemic lupus erythematosus is also a systemic autoimmune disease.

As others have said, hydroxychloroquine is very commonly prescribed for lupus - basically everybody should be on it unless they experience side-effects. It is widely used because it is very effective in controlling a variety of lupus symptoms whilst also generally being very well tolerated with few or no side-effects. It can unfortunately take a while to be effective; sometimes up to 3-6 months before the full effect may be noticed. Hopefully after some time on the treatment your lupus symptoms will be better controlled.

If you need more information about lupus and LUPUS UK, we have a free pack which you can request or download from our website at lupusuk.org.uk/request-info...

Keep us updated with how you are doing.

[MissFG in reply to Paul_Howard]

Thanks for the info I appreciate it and yes it's nice to feel so welcome & get some positive support as it's all pretty scary! I requested a pack yesterday as thought it would help.

I'm feeling positive that hydroxy will help and with my daughter being sick too at the moment maybe it will just give me time to focus on her and getting better and looking after myself.

[Christof]

Hi MissFg. I was diagnosed last June and was in intensive care with kidney failure (lupus nephritis), pleurisy and severe anaemia, all caused by my lupus. As for the pain, I literally couldn't move it was so severe. I am not ashamed to say I was in tears not just through the pain, but also the emotional shock of suddenly being hit by this disease. I thought my life was over. But.....with good treatment, good doctors and good support I am now feeling so much better. I take hydroxychloroquine, mmf and prednisolone and they really sorted me out. I am back to work full time, feel myself again, and even manage to play golf and football again. I know I am lucky, but don't give up, you will feel better again, maybe not 100%, but well enough to enjoy your life. Good luck.

[MissFG in reply to Christof]

Thank you! Sorry to hear you've had such a tough time I know I'm lucky to get a diagnosis so quickly especially having ongoing issues with hashimotos. But it gets you down after months of being sick but thinking positively I have good doctors and getting help it just takes time no one has a miracle cure I think initially it just all seems overwhelming. See me post in 3-4 months saying how much better I feel.... x

[Christof in reply to MissFG]

I hope so 😃 I wish you all the very best in getting through this tough time.

[MissFG]

Thanks diet is a concern for me as most ppl with hypothyroidism are over weight whereas I've not put any on and can only afford to lose 1/2 stone or I'll be too skinny. So I'm going to start eating clean and making a few meals up to keep in the fridge to ensure I eat 3 times a day. I have no real appetite but not sure what is actually causing this with everything going off

[Ellie633]

Hi, so sorry you've had a diagnoses of lupus. However now that they've diagnosed it they can start helping with the treatment of the symptoms. I've had lupus for 15 years and interestingly got mine eventually diagnosed after having a thyroid problem. It seemed to take ages to get lupus under control but i eventually did. I work full time and lead a normal a life as possible. Still have massive flare ups and have to adjust things like making sure I sleep and eat properly, there are days where you think "is this as good as it's going to be" but you just keep going. There are always good days and bad days and it's so random that sometimes it's difficult to plan for. Exercise is good for the swollen joints and stiffness. I got a dog to force me to take walks. 😏 However, you will get back to your life and you will be able to make any adjustments needed.

[MissFG in reply to Ellie633]

Thank you! My consultant last week said to stop worrying I'll be fine and I'm under the right departments and being treated but found her very dismissive. She asked if I had a low mood well obviously who wouldn't feeling ill all the time lol. My lung function test also came back as poor so more tests and I'm waiting on my echo results. But I'm determined to feel better eat well and exercise so that's no my focus not how sick I feel x