Stopped all meds

I've stopped all meds and see what's going to happen ... I want to be normal for once .

[julie1234]

Do you think that is wise what are you on some if stopped suddenly can cause bad effects if on them for along time.

Concerned

[Hidden in reply to julie1234]

I hope that's what will happen .. An heart attack or something .

Sorry everyone I'm going to delete my account I don't want my desperation to effect other people who are fighting bravely this desease . Tc x

[Paul_Howard Partner LUPUS UK in reply to Hidden]

Hi Maria68,

As others members of the community have said brilliantly below, please don't delete your account. We all want you to have a place that you can feel listened to and understood and we all want to offer you some support.

I understand that you feel you need something drastic to happen to help drive a positive change to the care you receive, but there are no guarantees that it would help and you'll most likely just end up in a worse position than you were.

You mentioned in another comment that you're concerned your doctors don't understand your lupus. If you are not currently attending the lupus clinic at Manchester Royal Infirmary, then perhaps you could ask for a referral. The clinic is led by Prof Ian Bruce who is a leading world expert on lupus. With regards to your issue about your notes not being transferred - have you spoken with PALS about this?

You also mention that your Raynaud's is a big problem for you. Have you sought any advice about changes to treatment or improved prevention of attacks? The Raynaud's & Scleroderma Association have lots of great information available and have their own HealthUnlocked community. raynauds.org.uk/

I think it is really important that you speak with your GP about your current low mood. You may find some counselling or psychotherapy helpful? If you need to talk to somebody else with lupus I could provide you with a telephone number for one of our trained contacts? You could also call our office 9-5 Mon-Fri on 01708 731251. If you need somebody just to listen to you, you can call Samaritans at any time on 116 123.

Please don't give up. Things can get better and there are people who are able to help you get there.

[Hidden in reply to Paul_Howard]

Hi, thank you for your reply , I'll be happy to talk to someone with lupus , idk anyone with this condition ... I find it very difficult to function atm... Very very weak , fatigue and my hands are so painful and stiffed , my eyes too are itchy and swallow . The very first flare up I had started with very itchy eyes .

Thank you .

[Paul_Howard Partner LUPUS UK in reply to Hidden]

Hi Maria,

I'll send you a private message about connecting you with one of our contacts.

Have you been diagnosed with Sjogren's syndrome? Dry/itchy eyes are a common symptom of this and it overlaps with lupus for quite a few people.

[Paul_Howard Partner LUPUS UK]

Hi Maria68,

What treatments have you stopped? Have you stopped them all suddenly, or are you weaning yourself off them? You must be cautious because it can be dangerous to suddenly stop some medications. It should be done carefully under supervision from your doctor.

Why are you unhappy with your treatment? Are you experiencing uncomfortable side-effects? Do you feel that they aren't really helping you? I think that you should have a conversation with your doctor about this. They may be able to adjust your treatment regimen, or if you really don't want to take treatment anymore (it is ultimately your choice) they can make sure you do so as safely as possible. Your doctor can discuss the risks you will most likely face without treatment to control your lupus.

I would urge you to please not make a rash decision which could leave you in a worse position than you were.

[Pantani]

Please see your GP before you stop your meds.

Steve

[babssara]

Hi Maria, let us know that you are OK. We are concerned for you. Chat to the helpline if you need someone to rant at.

Babs x

[Hidden]

Nothing works... They send me from one hospital to the next and I never know tests results because Manchester hospital doesn't share with my local hospital ... My main problem is raynauds and I think nerve damage because my legs feel really weirdly weak , I'm scared i'll weak up one day and won't be able to walk! But I'm booored soo booored . I used to be really healthy , pretty and one day this bomb dropped on me ( lupus) the worst desease in the world , no doctor as a clue about it and I'm not a fighter period...

[Heather53 in reply to Hidden]

I totally get what you are saying it is so damn tough being restricted , I use to cycle for miles and was so fit . I am having counselling and trying to adjust to my new life with a wig as well . It's a grieving process for the life we had pre lupus . Some days I struggle to write . I try and do small things that make me happy coz us luppies only understand the fraustarion . Sometimes a warm Epsom salts bath helps joints , or the help line are there for you . Please take care , and think you are in a temporary situation and let the medical profession help . Maybe they can gave refer you to a accunpunture for pain . Keep strong and go tell them how it is for you X

[Pantani]

Please don't give up Maria, take your meds and try to be positive about things. Who's going to listen to me if you close your account. There are lots of people here who will support and help you.

Steve x

[Hidden in reply to Pantani]

You just feel sorry for me .. Don't !

Good luck and happy holidays 🎄

[Pantani in reply to Hidden]

It's not a case of feeling sorry for you. I want to support you, I understand how dark things can seem but there are people who will help you. Talk to your doctor or is there a help group you could join. Hope you feel different tomorrow. I'll be here if you want to talk.

Steve

[Hidden in reply to Pantani]

Hi, I went out today for lunch with those 2 ladies , I'm at home now and I can't stop crying .. I feel so tired , , I never felt so weak , when I walk I scared my legs will give away 😪

[Pantani in reply to Hidden]

Well it's good that you went out with those ladies. Sorry to hear your not very good since you got home. Perhaps you should resume your meds until you get to see a gp. Please look after yourself Maria.

Steve x

[flow4]

Hi Maria, it sounds like you're feeling desperate and need someone to talk to. The Samaritans are always there - call 116 123 free (UK).

I lived for several years without any kind of diagnosis, and then the wrong diagnosis, and therefore didn't have the right treatment. I understand that feeling of wanting something desperate to happen, just to make it STOP. But finally, just last week, I have been given meds that actually work for me, and my pain has reduced by about 70% and life feels livable again... Hopefully the doctors will find something that works for you too.

That thing about different hospitals and doctors not sharing notes is ridiculous and soooo frustrating! I have learned to say to every doctor I ever see "Can you print me out a copy of those results, please". It takes a bit of courage initially, but I haven't ever had anyone refuse, so it gets easier The good news is that from April next year, we'll all have a right to access our own patient records online, which really should help people like us suffering from chronic and complicated conditions.

Hang on in there!

[Hidden in reply to flow4]

I hate to be superficial but I don't like the way I look anymore I used to have really thick hair now they are thin and lifeless, I can't wear pretty shoes or high heels because my feet are to cold and I have Virtigo at times, my skin is changing .. I'm so ugly ! I'm sure the arthritis started to show on my hands ooo I don't want whitch hands ..

[flow4 in reply to Hidden]

I know. On one level, those sorts of concerns are superficial, but on another, they can be really important to your identity and confidence. But don't give up hope: I have found two things: first that after a year or two of feeling really out of control, things settled down again; and second that the changes to my body seemed more frightening *before* they happened than they did *after*... You sort of have to come to terms with the fact that there ARE some changes, but then you find yourself with a new sense of identity that isn't too bad, really. It certainly isn't a bad as you fear it will be right now!

[Hollydebs]

Hi Maria I feel your pain really I do. I am also sick to the back teeth with Lupus & yea some days I wish it would all end, caus I feel what's the point. I'm constantly in pain, some days I can barely move. I have dramatically reduced my working hours as couldn't cope. I have no social life as rarely go out. Some days I feel I am existing rather than living which is no life. I go on because I need to be there for my Mum it's the only thing that keeps me going. Don't delete your account. If you need to vent use this forum. Whenever I am upset or life gets too hard I use the forum to release my pent up feelings & let me tell you it helps, really helps. I have found the people on here so very helpful & honest to god lifesavers. Please please do not give up x x

[Purpletop]

Trust me, I feel like stopping the drugs every single day. They terrify me. And then I look in the mirror and see the thinned hair, the fat on my tummy, the broken capillaries on my face, the weird looking nails, etc, etc and think 'who the h**l is that?'.

Stopping the meds will give about a month of apparent normality but don't be fooled - once the drugs are out of your system, watch your lupus coming back. I had to stop all meds for 3 months (all of them) on doctor's advice and after the drugs left my body I had symptoms returning that I've forgotten entirely about.

yes, the side effects of the meds are dreadful but the thought of continuous, unchecked inflammation scares me more. The more inflammation in the body, the higher the risk of serious damage to organs.

I know you know all this. I understand the panic. I'm just saying - speak to your doctor and organise a controlled reduction until you're off them, if that's what you want. The doctor cannot force you to take them but he/she can help you come off them safely. While you're doing this, I'd also leave the door open for a return - if things get worse, you can come back and start again.

[tashi]

Maria68 this is the one place you can rant people will listen, understand and support you, but perhaps more importantly there will be at least one person who feels/has felt the way you feel right now. Not just that, many people share you symptoms - whether diagnosed or not as we are all on that "it seems to take forever" to get diagnosed, find a gp or consultant who listens or can be trusted (feeling unwell and vulnerable affects our judgement - yes absolutely all of us )

This site is not about us feeling sorry for each other. I've had advice, supportive words and suggestions from this community. I would never discuss the detail I've put on here with someone face to face. Non lupus sufferers will never get what we go through.

I hid myself away (and lost friends by doing so) when I lost my hair, I couldn't see a way forward. Then when full lupus (with Raynauds, Sjorgrens, thyroid etc) was added to discoid, somehow it put the hair in perspective... and the second wig I purchased, I actually really liked wearing. Never ever did I think I would say that. After 4 years my hair is back in most places, not in the dead patches but it can be disguised enough for me to put the wig away.

You know, I read other people's stuff and realise that "my" lupus is not nearly as painful as others on here. But every case is SO different, no-one has just lupus!!! Everyone has several secondary conditions and it's the combination that makes this so hard to diagnose and treat....

If you want to message me privately, pls do, but don't disappear - we're all here for each other and I know I've had plenty of dark days too.....

Tashi x

[Hidden]

Well done 👏 You are 90 haha .. I'm only 47 ( the 25 Nov ) ... No need to SHOUTTT! .. Sound to me You are taken the Pi#% but hey I've got a sense of humour 😊 BYEEEEE

[flow4 in reply to Hidden]

I have no idea why you think I'm 90. I have just turned 50, started having significant problems at 46 and had my hip replaced at 48.

I was sharing my experience and trying to give you a bit of hope when you seem to be feeling a bit desperate. It's a feeling I recognise because I felt that way myself a year or so ago.

[Hidden in reply to flow4]

It wasn't a reply towords you was someone else but I think she deleted the comment her username was 'hooverly'

Sorry 😊

[flow4 in reply to Hidden]

Ah-hah! OK. I hate it when that happens!

[3489-1992_]

Hi Maria,

I don't know if this will help or if anyone could help answer some questions I have myself about Lupus disease.

My mother has been very unwell for about 5 years on and off, being wrongly diagnosed and constantly on different meds she has now been correctly diagnosed with Lupus. I am here carer, but I do not understand the disease myself.

All I know is I need to be supportive and help her in any way I can. Here's a few ways my mother has been able to find comfort (I hope this helps!)

Firstly we bought a fantastic wax machine, I'm not 100% the correct term but this small pot heats up wax, then you put the joints which are painful into the warm wax which you let dry (my mother particularly suffers with pain in her wrists) and then after leaving it for 5/10 minutes you slowly peel it off your skin and put it back into the wax pot. After every time my mother uses it on her hands she says it really helps to soothe the pain and her skin on her hands and wrists are smoother and relaxed, helping relieve some of the pain.

As far as I'm aware my mother has been given steroid medication to help with lupus but I am worried this will only damage her health further.

Is there anyone who can give me any advise as to how I can help my mother through this?

Some days she cannot get out of bed, but most of the time she tries to do tasks I know she is not 100% capable in doing but I do not want to strip her of her independence.

Thank you in advance for anyone taking the time to read this. if anyone has any more information on lupus I would really appreciate it as it will help me understand my mothers tiredness and aches.

I really admire anyone fighting this and I wish you all the very best.

Thanks again,

B

[USAhousewife]

I hope you are well. I've ditched the **** several times in the last 35 years. I usually sneak back, one at the time. . .

[Hidden in reply to USAhousewife]

Atm, I'm still take adalat for blood circulation ( bad raynauds) it's very cold especially today but it's not working just gives me really low blood pressure at times ...seems the more crap you take the worst you feel so .. I don't know .

Tc

Maria 😃

[beehopeful]

Iv done the same thing and I don't know if it was a good idea but the tablets I was on I had a very bad reaction I am trying everything in a natural method god help me as I'm in severe depression.

[Hidden in reply to beehopeful]

Thinking about you, depression it's 50% of this illness , nobody can understand it unless they've been through it.

Take care

Maria

[beehopeful in reply to Hidden]

Thank you Maria isolating my self from the world when I know I should be fighting...Goodluck too you too x