Benzodiazepines and lupus

[[Ll...]]

Hey everyone,

I write here because I maybe have a lupus and I think the origin was a brutal changement in my benzodiazepines. 
 

I would know if someone has lived a similare situation and if it’s reversible with cure the homeostasis in my nervous system due to this shock.

sorry for my English I Hope you understood me and thank you for your answer.

have a good day everyone 

[[Co...]]

Hello @[Ll...]. Welcome to BenzoBuddies.

I am unaware of any connection between benzodiazepine use and lupus. Indeed, benzodiazepines can reduce symptoms of stress, and or this reason, they are sometimes prescribed in the treatment of autoimmune disorders.

Interestingly, there is even one benzodiazepine (Bz-423, not commercially available as far as I can tell) which has shown to be effective in lupus-type illnesses in mice.* But the research went nowhere as far as I can tell.

* The distinction is important - mice models frequently fail to translate into being effective (and safe) in humans.

https://news.umich.edu/new-compound-holds-promise-for-treating-lupus-and-related-diseases/

https://www.sciencedirect.com/science/article/abs/pii/S0896841122000786

But as far I can tell, there is no evidence to support that benzodiazepines cause or even aggravate lupus, or any other autoimmune disorder for that matter.

I suggest that you talk with your doctor about your fears. And, if necessary, see a specialists and get tested for lupus. Diagnosing conditions for yourself is fraught with difficulties and is very unreliable, even for a doctor (which, presumably, you are not).

[[Bu...]]

Hi @[Ll...],

I don't know if there is any connection between benzos causing actual Lupus, but I have had the experience of being misdiagnosed with it and several other autoimmune disorders.  The symptoms of tolerance withdrawal and general side effects from benzos can look a lot like Lupus or other disorders.  

I don't know for certain yet that I don't have any autoimmune problems because I am still in withdrawal, but many of the symptoms that I have had for years, that doctors had attributed to an autoimmune disease, are disappearing the longer I am off my benzo.

Most autoimmune diagnoses are diagnoses of exclusion.  This can be really tricky while taking a benzo and while in withdrawal.  Have you had any testing done that suggests that you have Lupus? 

[[Ll...]]

Thank you very much for your answers. In fact I began to have symptoms of burns on my face immediately when I changed a high dose of bromazepam to a high dose of alprazolam in one day. After that my life became horrible. I lost very much weigh. The Burns increased. Now I am very sensitive at sun. My blood analisis are not good because of auto antibodies. I am so scared because my life was ok before this horrible switch and now it’s horrible. I am still with the hight dose of bromazepam and with 400 mg lamictal and 15 mg trintellix. I don’t know what to do ? If I have any chance of repair that with regulate medication or if I really develop a lupus because of this changement in benzodiazepines Who had create a feeling of extrem stress on me 

[[Co...]]

Hello @[Ll...]. A am sorry to hear that you are feeling so unwell.

I was about to log off for the evening when I saw your message. So, it will be tomorrow when I can reply properly.

[[Ll...]]

No problem thank you very much for trying to help me. It’s very kind. Thank you so much. 
I know that benzo can do a lot of damages and I am scared this happened to me. I was at 18mg/day bromazepam when I switched and now I am feeling with a lot of problems my doctor is incompetent I feel lost I don’t know wich doctor can I visit for helping me. Have I brain damage? This can be reversible? Even auto antibodies? All of this that happened to me after that. I don’t know what to do

[[Ll...]]

Do you know specialists in benzodiazepines that can really answer at these problems ? Not psychiatrist who give this without knowing the risks

[[Bu...]]

Hi @[Ll...],

I'm sorry for everything that you're dealing with right now.  I do know that benzos in general and switching between them can really upset our systems, including our immune system.  If the blood test that you are referring to is the "ANA" marker or "antinuclear antibodies", I've been told by several doctors that this test alone does not necessarily mean there is an autoimmune disorder.  It means that your immune system is not working properly at the time the test is done.  There would need to be other testing done to determine what exactly is happening.   It could just mean that your body is struggling with the change from one medication to another and that it will settle down with time.   The burning sensation on your face is also a sign that your immune system is currently disordered, but again, not necessarily a sign of Lupus. 

Lupus has a very specific type of red, face rash called a "malar" or "butterfly" rash.  I personally have had burning sensations and red patches randomly all over my face during withdrawal, but they don't match the pattern of the "malar" rash.   

The fact that you did not have any of this before the medication change, seems to me that it is very possible that it will calm back down.  Of course, having a doctor monitor your blood work for any changes seems like a good idea.  

[[Ll...]]

Thank you very much. I am so scared and feel so guilty because of my addiction to benzodiazepines. I don’t know it will be so dangerous. When I see in the forum I only see people Who have 1/2 or 1/4 of my dose of bromazepam and It makes me so scared of what it could have been on my immune system. Do you know what dose of bromazepam is really huge? 18 mg is very high no ? And with a big switch with 2mg of xanax it’s horrible no ? It’s that that makes me so sad. I feel like I ruined my life with medication that I considered safe or not able to do that. 
 

Thank you very much for your answers it’s really good to feel helped and listened

[[Bu...]]

@[Ll...], 

I am in the US and Bromazepam is not prescribed here, so I am not very familiar with it.  But I did a quick search for the average dose and I found that 6-18 mgs a day is the average range.  I also did a search for the equivalent dose of Xanax and if my math is correct, it would be 3 mgs of Xanax is equal to 18 mgs of bromazepam.  So I think when your doctor switched you over to 2 mgs of Xanax, he/she also decreased your dose by 33%. That is a large reduction and could be why you are feeling so awful.

May I ask the reason for the switch?  And did your doctor mention that it would be a lower dose?

Often when medications are switched in this way it can cause some very difficult effects.  How long ago did this switch happen?  Is the doctor planning any other adjustments to you medications or is that it for now?  I think that your systems may need some time to settle down and adjust to the change.

The good news is that the vast majority of us heal completely from the damage caused by benzos.  It just takes time.  

Hang in there my friend. 

 

[[Ll...]]

Thank you so much ! 
This switch was in last july and my doctor did that because I forgot to take my benzo for three days nearly a month before and the effect was not there any more on my ruminations. 
 

The big problem is that I did a bad use of this medication thinking It will just be good for my anxiety but not dangerous.

I think that’s like my body «broke» at the Moment of the switch. 
 

I am scared because since this Moment the situation is worse and worse with neurological sensations strange confusion desorientation , anorexie, Burns on my face, Sun hyper sensitivity and overall bad blood analisis :/ 

That’s makes me so scared because I did a bad use of this medication and know they suspect me an auto immune problem and I don’t now what to do, and if I have a chance to reverse that :/

thank you very much for helping me for all of your answers 🙏

[[...]]

@[Ll...], i really feel for you and, guess, can perfectly understand what you're going through. I was there somewhere like this once. I'm sure everything isn't as awful as it seems and can be reversed.

I happen to know something about true lupus, not my own experience but a really close relative's of mine. I've also learned about benzodiazepines, my own experience this time.

In fact, i just wanted to support BurnTheShips' opinion. I absolutely agree with every her word.

Good luck to you with all my heart!)

 

[[Ll...]]

Hello

Thank you very much ! Did you feel Sun Burns in your face like you are allergic at Sun ? Despite using Sun protection cream ? 
 

You think it can be a break of tolerance with my benzodiazepines ?

I see my internist next week but the things Who make me feel anxious it’s because of auto antibodies and that I did misuse of these terrible drugs. I really Hope you have reason that’s reversible despite of this day where all began and be worse and worse in symptoms and analisis of lupus. 
 

Have you hot hight dose of benzodiazepines ? With other treatements ? I am on lamictal 400 mg and when I look on the forum I only see people Who have max 200 mg and 1/2 or 1/3 of my benzodiazepine dose :/ 

Again thank you all of you. I did not think I will have so many help on a forum It’s really kind because you take your time helping me . Doctors don’t do that unfortunately :/ I am so gratefull 

[[Bu...]]

@[Ll...],

I think it is possible that alprazolam just does not "agree" with you.  I tried it one time years ago, before I was put on Clonazepam and it made me feel awful and gave me hallucinations.  Maybe it just is not good for you either.   Sometimes certain medications just do not work well for some people.   

I do think that all of this is reversible given enough time.  I had, and still have, many of the symptoms of "Lupus" that you are having and they are getting better the longer I am off the benzo.  My burning face and sun sensitivity are almost gone now.

 

[[Ll...]]

Yes you are right about Xanax but the thing I don’t understand it’s Why now even if I take my bromazepam like before all of this it’s continue to make me feel worse and worse with sensations of extrem Sun sensitivity burns lost weigh sensations of neurological problems and overall bad auto antibodies. Do you think it’s because with this changement my body don’t tolerate bromazepam any more ? At this high dose ? 
I am scared to have develop lupus and neurological problems because of this «tsunami » that I lived with the switch :/

since that it’s worse and worse.

thank you very much for helping me and give me Hope and strengh I feel like I am falling, like I have no control any more. My life totally changed after this date. I live a nightmare. 
thank you for sharing your experience because I am lost and medical world let me without answers since months with only fear because suspecting a disease.

I don’t know if auto antibodies can come back to a normal level if finding and correcting the cause of this apparition.

sorry for my long texts It’s because I am lost and you are the only ones that take my situation seriously. 
Thank you à lot my friends 🙏

[[...]]

@[Ll...], as far as i know, lupus is probably a hereditary disease. Do you have any lupus in your family? But, anyway, i never heard benzo could cause something that really dangerous. I'd keep checking on the level of antibodies to see the tendency.

As for the switching from bromazepam to xanax and back, i think it may be the cause of your worsened condition and, perhaps, growing tolerance. I also have some exact date after which i felt worse and worse for 2 years. It was when i changed my benzo brand and started to take  dispersible pills, i  never guessed to updose and wait though. I also had a lot of benzo switching, xanax including, trying to find the one to help me.

I personally think if you stick to some steady treatment for a while you can feel better. I also think benzo may be responsible for the health issues you have. Hope you will find the right solution with your doctor. Wish you healing

[[Ll...]]

Thank you very much. Yes I continue checking. But did you take high dose of benzodiazepines when you did the switches ? Because I switch very high dose and I thing it’s for that I feel so bad just after that it was so strong for me 

[[...]]

1 hour ago, [[L...] said:

Thank you very much. Yes I continue checking. But did you take high dose of benzodiazepines when you did the switches ? Because I switch very high dose and I thing it’s for that I feel so bad just after that it was so strong for me 

No, i never took too high a dose, just what the doctor prescribed originally.  But i think 18 mg of bromazepam isn't too big a dose either. There are people, here too, who took more than this and, guess, much more. As far as i know benzo don't do any real harm to our body, "just" may strongly affect our nervous sistem but it's reversible.

I also noticed one thing, not sure it's always the case. As soon as people begin unsystematic switching benzos or changing their dosages steadily taken prior to it, they tend to feel worse. It might take time, perhaps long, to stabilise again.

Edited April 22 by [...]

[[Ll...]]

Ok I though it was very much. 
Yes it can be long even more when doctors talk to you about a possible disease :/ 

[[Ll...]]

I am sorry to tell how much I am sad and scared meanwhile people live much worse situations and I am so gratefull to have all of you with me with your advices trying to find a solution for me I did not think one second I could find people like you going here thank you again. 
I feel so guilty terrible guilty because I did not listen the doctors when they said to me to decrease my dose of bromazepam because it’s to high and I think I pay the consequences. It’s so hard to feel that. I feel like I ruined my life because I lost everything I had. Self estime, life confort, because of a disease I probably have because I did not listened. It’s so hard. Thank you very much because I know you are living difficult Times also and you care about me. You are amazing , I really think 

[[Co...]]

@[Ll...]

Sorry, I have been busy. I thought a couple of recent threads might be of interest to you:

These are just a couple of threads in which I was involved - there are probably others. If you have not done so already, please try using search:

Main menu bar => Discover => Search

[[...]]

@[Ll...], just don't blame yourself in vain. Everything is possible to change to the better as long as we're alive. I do understand how confused, miserable and frightened you feel. Guess most of us have been there too. Whatever you feel is probably "just" sensations. Even high doses of benzo can hardly bring real harm to us but, yes, it can be extremely unpleasant, painful, worrying through the roof and depressive and yet it's supposed to be reversible. I remember i read in the Ashton Manual that some people had been misdiagnosed with multiple sclerosis and suchlike while taking benzo. Hope it's your case and in fact you don't have any serious disease. 

Wish you positive clarity in your situation and recovery!)

 

Edited April 23 by [...]

[[Ll...]]

Thank you very much even if I am scared and pessimist it feel good to have some positive vibrations. The most important things that make me scared it’s the presence of auto antibodies in my blood and that it’s going worse and worse. I really Hope It’s you that have reason and that I can reverse that I hope that everyday if you know 

[[Ll...]]

48 minutes ago, [[C...] said:

@[Ll...]Colin thank you very much I read that but It makes me scared because they say they take 10 mg of bromazepam and I take nearly 18 mg and It’s probably the cause of my broken tolerance in my immune system with the brutal switch. Doctors don’t know and often say no but it’s my body and all of this nighmare began immediately after this switch. It makes me feel so guilty because majority of people don’t take a big dose like I take and did a switch with that I feel I ruined my life since that. I was in perfect health before that only depression but physical health perfect. It changed everything and it makes me crazy when I see my medications compared at the other’s medication so sad 

[[Co...]]

@[Ll...] You might edit your post, above - you have your comments to me in quote box with my name.

I'll reply later.