Unable to be treated for Lupus: Hi I am a new... - LUPUS UK


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Unable to be treated for Lupus

ShadowSky profile image
13 Replies

Hi I am a new member. Please can you help me? I am desperately trying to find out if there is any other person who has SLE and like myself is unable to be given any treatment for it, due to their body rejecting any treatments due to becoming very ill and alot worse off if any are given. Only I am unable to be treated for mine. And it just feels like a very lonely and isolated position for me to be in like this. I know that my Lupus deteriorates quickly and I am now disabled but have nobody like myself in this position to talk to or share things with due to nobody else understanding how I feel. Please if there are any Lupus patients out there who like myself are unable to be treated for their Lupus could you let me know and allow us to talk together. As it feels as if I am the only Lupus patient in this position. With many thanks from Becca

13 Replies
jeanie94 profile image

Hi there !

My body has recently started rejecting immunoglobulin infusions. My heart rate and blood pressure rise too fast, and with an issue of China man arteries my heart struggles with too much stress.

You aren't alone, but it does make life significantly difficult.

custardpot profile image

I can't take anything for Lupus either. I can't take Hydroxychloroquine because it affects y eyes and can't take another because I have a liver problem.

I even have problems with painkillers. I have tried that many and have just found another I can take which helps a little bit.

Lupus causes problems for me with any medication. It will suddenly make me have a reaction to medication even some I have been on for years.

You are not alone

Freckle1000 profile image


Firstly - I'm hoping you've tried 'several' different specialist opinions regarding medication options - as in more than 5......10 even. There may be a Doctor out there that can find a treatment for you. Pretty much every specialist I've met has different ideas about medications. I really wouldn't give up trying to find someone who can help.

Also - sometimes re-timing of the medications can work. I negotiated with one very unhappy renal specialist to take most of my medications at night and sleep through a lot of the side effects with the help of sedatives. It was a gamble I took when I was only barely recovering from a renal flare - but I just couldn't stand the side effects any more. I was willing to take the gamble and 'luckily' for me it payed off. I still take a lot of these medications at night before going to bed. Perhaps not medically correct, but it was something.

But now I suffer from steroid delirium even on low doses - so I have to go off it or I literally cant function mentally. Other drugs I take are just for back up and don't really control my disease which is at the serious end. I'm in remission now, but know if I stop taking the pred this 'may' ? not last long. I've also accumulated some bodily injury and like you - don't want to become more disabled than I already am.

But having said this - there have been many periods of my life where I was flaring and didn't get appropriate treatment and the issue eventually resolved itself - 'unpleasant' but I've managed to dodge some physical damage sometimes without any real treatment.

Everyone is very different and are at different stages of their illness, but I recently read an interesting line from my specialist's letter saying - for me - without any medication, the chance of a significant relapse within the next 5-10 years would be 25 percent. This was actually surprising as it leaves a 75 % chance of perhaps anything from a slow simmer to nothing happening ? And this is a woman who quite rightly wants to drug me to the eyeballs just to make sure because I am classed as having severe level SLE.

I'm also in contact with an SLE ex- participant here that has had to go off her medication due to white blood cell problems. She also has active renal problems - but has recently found her kidney function has improved 'off all medications' (except BP meds) and says she feels fine.

I know its terrifying and a lonely place to be. So many of us end up in the damned if you do - dammed if you don't situations. So often its about choosing your suffering - with both options near unacceptable. The important thing is not to become overwhelmed by the emotions this sort of situation conjures up.

Take a step back - rest your mind, take a mini mental break from the illness and then slowly and gently re -assess the situation. I know its a bit of a hippie stereotype - but reducing the anxiety will help reduce flares. Easier said than done.....I know.

& Please don't give up on finding a Doctor with an answer - because it REALLY sounds to me like they should still be very actively looking for an answer to your problem. If desperate - perhaps look into drug trials ? But make sure they're moral ones.

Please don't give up on finding a solution to this problem.

ShadowSky profile image
ShadowSky in reply to Freckle1000

Thankyou for your reply. My specialist I used to see was Dr. David Jayne who is the top specialist in Cambridge for the Disease Lupus. And he told me a few years ago that every time I went to visit him my blood results were continually showing that my Lupus was getting worse. Perhaps having a mentally ill son to deal with on my own who suffers with OCD attacks has had alot to do with the rapid deterioration as I am always under alot of stress. Dr Jayne told me after the drug infusion made me so unwell that my body refuses to accept the aggressive drugs used to treat Lupus. And I said to him this disease is going to kill me isn't it. He told me that it's attacking my heart and Lungs and that this has shown up on my chest X-rays. So I said to my consultant if I cannot be treated for the Lupus there seems no point in me keep attending the clinic then and asked him if I could just continue seeing my GP when any new symptoms occur instead. He said that would be alright as long as he and my Dr kept in touch together and they both worked together when it came to treating my symptoms. Some medication I can take for some of the symptoms and others I can't. The Dr. wanted to change my pain relief to Morphine as the Tramadol was no longer strong enough . But again the Morphine didnt suit me . So instead what she had done is kept me on the Tramadol still and given me Lidocaine patches to place on my body instead which so far is working with the Tramadol. She told me how the Lidocaine patches are used for people in hospital. And they are working at present due to anaesthetising the nerves in my body that are carrying the pains I get. Does that make sense? I trust my Dr because if one thing doesn't work for me then she will always try to come up with an alternative. And due to the patches not having to be taken orally or put into my body , no side affects are given from them at all. With many thanks from Rebecca XX

in reply to ShadowSky

Hello shadowsky,

I have been on gamma globulin infusions for a year now and they have helped my chest a lot, the thought that I could become resistant to them is worrying. I do get dizzy if they are infused too fast, but so far, that is all.

My veins are falling apart, and I have been offered homecare, where I inject a solution over 10 minutes into my stomach every day, I have yet to be trained for this,, and am waiting. Sorry to waffle on with my problems, but the

lidocaine patches caught my eye, my husband has 4 collapsed discs in his back and was given patches in hospital, these worked very well, but as soon

as he came home, they could not be prescribed, (only to hospital patients) and too expensive. He also gets morphine hallucinations , and now is trying to manage on oxycodone slow release tablets, not so good.

I hope you get sorted and don't have to keep on suffering, best wishes,


ShadowSky profile image
ShadowSky in reply to

Apparently the patches are very expensive and a friend I used to have was refused allowance to have them by her GP. Who said he would need permission to allow her to be given them. However my own Dr just prescribed them for me straight away when she knew that the morphine wasn't able to be taken by me. I think she is the type of Dr who feels that if something is needed and nothing else works then it should be prescribed regardless of the cost. She also didn't have to gain permission to give them to me either. And I have been using them for the past 2 and a half years now with my Tramadol. It seems to amount to who you see and how they feel whether you can get what you need or not. Many best wishes from Becca.

Barnclown profile image
Barnclown in reply to

Hi Christine. You've got a lot to manage. To me, you're an inspiration. I just want to check: when you say gamma globulin infusions, are these the same as IVIG infusions? I ask because I'm being considered for these..and I know the alternative is self-injection at home.

Hope you'll let us know how you get on

🍀🍀🍀🍀 coco

in reply to Barnclown

Hello coco

Ivig stands for intra venous immunogamma globulin. The lupus is in my lungs and I was getting chest infections every 2 months. This has certainly stopped it, and I can survive on my inhaler and nebulisers. I do feel tired for 3-4 days after, but apart from that its a big improvement.

I think the home care is a cost cutting ploy, so they can get rid of one more nurse, but I am getting cynical with all the cuts

I will certainly let you know how I get on

Barnclown profile image
Barnclown in reply to

Me too...this is hard...am vvvv much feeling for you & relating to what you're going through.

Am so glad freckle has replied to shadowsky's post: she is vvvv experienced & wise.

I know, as much as another can, that this is hard cause it's just similar enough to my case...and it's why immunology has had me on daily coamoxiclav ongoing for over a year in order to try to avoid putting me in IVIG

....my university hospital calls IVIG intravenous immunoglobulin G:

Immunoglobulin products from human plasma were first used in 1952 to treat immune deficiency. Intravenous immunoglobulin (IVIG) contains the pooled immunoglobulin G (IgG) immunoglobulins from the plasma of approximately a thousand or more blood donors. ... IVIG is an immunomodulating agent that has multiple activities.

Intravenous Immunoglobulin: Overview, Uses of Intravenous ...

emedicine.medscape.com › article › 210...

Take care & please keep us posted


Cookiecutter76 profile image

I can't tolerate any meds either. It's not just the lupus ones I have problems with as over the counter stuff tends to give me problems too. The lupus ones I've tried have caused my life to come grinding to a halt and I'm still fighting to regain the function I lost when trialling them. I'm now learning herbalism as I think a more gentle approach will be beneficial for now and it gives me more of an excuse to garden!


Freckle1000 profile image

Me again,

I don't want to throw any annoying false hope furfies at you - and I don't know what treatments you've tried - but would it be worth asking your GP about Hematopoietic Stem Cell Transplantation ? These are more biological agents than medications (?) and I get the impression ? it can be used for intractable Lupus. (not a medical expert)

'Saw it on the internet so it must be true' kind of thing....... but It might be worth an ask.


ShadowSky profile image

One medication my body did turn against was Amitriptyline. I was out on it for Depression and was given the highest dose possible. And I was left on it for 20 years. Without any monitoring of it at all. 20 years later I kept being ill and literally felt as if my mind was going . Not only did I spend over a year not being properly aware of things that were going on around me. But everything somebody spoke to me I ended up not being able to understand what it was they were talking about. My Dr who was about then continually kept telling me that all this was due to depression. Whilst I kept continually telling her that it wasn't depression because I knew what depression felt like. It went on getting worse for over a year. In the end because my Dr wouldn't listen to me I decided that the only way I would get her to listen was to do something really drastic. So I made an appointment to see her and before the appointment I sat in the woods and took an overdose. I then went to the appointment and collapsed in her room during my time with her. When I came round I was in hospital. She was sitting beside me and this was over a day later. And she told me that they thought I was going to die due to the amount of tablets I had taken. She suggested I spend some time in a mental hospital for awhile. And when I went to Fulbourn hospital I was told that I would have to stay in there for at least 6 months. Due to being and feeling so screwed up for some reason all I kept thinking was how was I going to cut my toe nails when I had taken no scissors in there with me. The first night I spent in the mental hospital I couldn't sleep at all so I decided to sit in the patients big social room and just relax in there for awhile. During the night I just looked out of the window looking at the distant street lights over Cambridge. All of a sudden as the dawn broke I noticed a bird fly by the window. And as it became lighter outside I then heard the sound of the birds whistling and singing to each other. It had been over a year since I had noticed any birds in my life flying about and over a year since I had heard the birds whistling to each other too. I couldn't understand how all of a sudden I could see and hear them again. Also I found that during the night my head had cleared and for the first time in over a year I was actually able to think clearly again. I sat and tried to analyze what was happening to me and how this had suddenly happened. And then I worked it out. I asked if I could see the Head psychiatrist when she arrived at work that morning and was told she would be in about 10 o'clock. So from 6 am until 10 am I sat outside Dr Ramanas office and waited for her to arrive. When she did turn up she allowed me to talk to her and I told her that I knew what had been wrong with me this past year or so. She looked at me as if I was bonkers but allowed me to speak. I told her that during that evening I was given all my medications except Amitriptyline because they had forgotten to give me that one. And I never mentioned it as there seemed no point. I then told her how I had sat up in the rest room all night and that during the night I had become more alert and aware and even heard the birds whistling. And I said to her it's those Amitriptyline tablets that have been making me unwell this past year . I told her that I wanted to go home. So she told me I could go home that Saturday morning as long as I returned to speak with her again on the Monday morning. Which I did. I still never took the Amitriptyline and I still kept being able to think clearly and no longer was my brain a complete mess. When I went back the Monday morning to see Dr. Romana she agreed with me and told me that it was the Amitriptyline that had caused me to become so I'll for over a year. She said that I should never have been put on such a high dosage of it in the first place. And I should never have been allowed to take all that for 20 years without being monitored at all on it. I asked her how come my body had turned against it like that. And she said how as we get older our body changes too and mine was now allergic to the tablets. She told me to come of them gradually but I said no I wanted to stop altogether and never wanted to feel as unwell as that again. She said I would end up sleeping less and less if I did it that way . But I had made my choice and decision. When I got home I spent the next 3 months no longer taking those tablets and did as she said ended up sleeping less and less. Also the symptoms I went through were exactly the same as coming off drugs. But I stuck at it and got through it. When I saw my Dr again I told her it wasn't depression it was the tablets. So she said yes I know, I am sorry because I never thought about that. Not only were they the tablets I used to take the overdose with but even to this day I still think if I hadn't been able to work that out for myself I could have been stuck in that mental hospital for 6 months instead of 1 night. It's often left me wondering just how many elderly or less able people have had to stay in that place due to being mistaken for suffering with depression when in fact it has been their body turning and becoming allergic to their medication. I had a friend once who used to tell me off alot as she said I always analysed things too much. I am glad I do as it was analysing that got me out of that hospital after one night instead of spending 6 months in there. Take care with best wishes from Becca X

Freckle1000 profile image


You definitely have to be on your 'own' toes when it comes to medications and Doctors. Doctors may do what they subjectively think is medically correct / or easy withing a 10 minute GP session - but its so easy for the patient to be easily sucked into a wrong turn - especially for SLE patients (like me) who had years of SLE neuro/psyche issues without a diagnosis and was chucked into the tender mercy's of a public mental health system that threw every possible horrific medication at me. Of course when I refused to go on with these inappropriate medications I was labeled as non - compliant - as well as a few other choice labels that said more about the staff than me.

Micophenolate ended up being the drug that bought me back to good mental health.

Once I was under the influence of pregabalin (prescribed by a - below mentioned Rheumatologist) and bought a house I could not afford because - as I was later told by a psychiatrist - "its a bloody great massive sedative"

(reminds me of another conundrum I'm in). I need to take a specific BP medication to keep my Kidneys going - long term - but the very class of medications they want me to take causes grinding - disconnected depression (much like not hearing the birds). I've still got plenty of Kidney's to play about with, but eventually I fear I'm going to have to make a choice between quality of life over quantity (not that going into renal failure is a particularly high quality life style)

(Taking the prednisolone at night seems to be helping reduce the delirium - but after a recent visit to an endocrinologist - it seems I might be a tad delirious on my own. (re: neuro problems) Lots of issues to balance and work out here.

Anyway - just in the vien of navigating the freaky scary medical system that can leave you adrift in a drug void - I too had one of the top Rhuematologists for Lupus in Australia and I absolutely and utterly trusted him for years.....He seemed like a lovely caring man. Turns out he was discriminating against me due to my neuro-psyche issues and - in the end was really - just plainly - not a very good Doctor. Every time I flared - he thought it was anxiety. (Essentially discrimination) Turns out he was Just a very good self promoter with a photographic memory (lots of degrees - but short on human insight and empathy) In retrospect - I don't think he thought I - as a person - with a time consuming complex illness without a cure was worth his effort.

I'm not saying this is happening to you - but you really never know whats going on in the minds the the Doctors you deal with. I've trusted lots of Doctors, only to find out I was dangerously wrong.

So from my jaded past experience I'd 'really' encourage you to find another opinion regarding your Lupus treatment. Apart from the kerfuffle, It couldn't hurt ?

Hope you are feeling OK and without physical or psychological pain.


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