Drug induced Lupus

[fatherchristmas2013]

Hi all i am a 47 year old male found to have drug induced Lupus,My question is they say coming off certain meds will help the symptom's, but what happens if you cannot stop any of the meds prescribed.What is the likely outcome.

[whisperit]

Hello fatherchristmas2013,

Welcome. I think people who have drug-induced lupus are pretty unusual here, so your story would be really interesting to hear, if you'd care to share.

But I don't think anyone here is going to be in a position to answer your question - seems like it's definitely one for your medics to me.

[fatherchristmas2013 in reply to whisperit]

Thankyou for the welcome they say lupus is mainly in females, so i have to be 1 of the small majority of men who has been told of having lupus, They say drug induced lupus can be brought on with different types of medication,especially high doses over a long period,mine is for my Epilepsy so cannot come off these tablets. today i get my results and my dsDNA levels have gone from 30 to 53 so been told i'm on the verge of getting connective tissue disease also,not news i needed. There doing 1 more blood test and if no change they will have to check my complements and antihistone antibodies, of which makes no sence to me "yet".

[Cann]

My symptoms of lupus all started after complications in surgery and being prescribed 2 courses of a broad spectrum antibiotic that I should not have been prescribed with my allergy to penicillin.

In addition, it was not an infection that the doctors suspected, but could not find with numerous blood tests, but pieces of the internal dressing pack mesh stuck to my insides for 6 months after the dressing pack was removed the day after the surgery.

In other words it all wrecked my body and immune system.

I can take no drugs now as I have terrible reactions.

I was dangerously ill and not expected to live weighing only 5stone 10lbs at one time.

I refused to die as I wasn't ready, but I gave up going to doctors after a GP told me 'We have come to the end of the road where conventional medicine can help you.'

I saw a nutritionist/kinesiologist who was brilliant and I was referred by my GP to BHH which then closed. I also saw a homeopath/herbalist and natural healers which I felt I needed all of these.

It took years to get myself back to reasonable health where I still need to manage the symptoms, but I do it using whole food, homoeopathy, herbs, eating only when I need to; muscle testing myself to find out when and what I need and living a more natural life, or one as near as is possible these days, exercising when I can and need to. In other words I listen to my body now.

I realised that no one else knows completely what is right for my body and once we rid ourselves of the fear that is instilled in us from birth that we cannot look after ourselves, but need someone else to do that, we are half way there.

We need to listen to our bodies and trust more that we can take care of ourselves and that doctors are very limited in their knowledge of our bodies because we are all different and cannot and do not need the same treatment.

We are not clinical objects but whole people and the complementary health takes this into account - for me far more knowledgeable than any doctor I know.

Keep positive and treat your body with kindness and respect and most of all trust it to tell you what you need and find the right way for you. All the best.

[fatherchristmas2013 in reply to Cann]

Yes i think your doing brilliant and just shows don't give up,lot of admiration for what you are taking into your own hands,keep going.

[Cann in reply to fatherchristmas2013]

Thanks, will do my best - no choice really if I don't want to suffer like I did. Hope you find the right way for you, too.

[Paul_Howard Partner LUPUS UK]

Hi fatherchristmas2013 ,

It is a delicate balancing act for the prescribing consultant when this occurs. I have previously heard of a case where someone with rheumatoid arthritis developed drug-induced lupus because of their anti-TNF treatment. They were advised to continue the treatment and be monitored because the lupus symptoms were outweighed by the improvement in the rheumatoid arthritis. This will vary from case to case.

Have you discussed this with your consultant yet?

[fatherchristmas2013 in reply to Paul_Howard]

Yes i am seeing a consultant from rheumatology at the mo.

[Paul_Howard Partner LUPUS UK in reply to fatherchristmas2013]

What are they advising at the moment? Are they leaving your treatment completely the same or have they prescribed anything to help with lupus symptoms?

[fatherchristmas2013 in reply to Paul_Howard]

Going to do 1 more lot of bloods check my dsDNA levels if no change they are gunna check my complements and antihistone antibodies.

[fatherchristmas2013]

They think i'm on the verge of having connective tissue disease.

[katidid]

Hi there! I have drug induced lupus as well as lupus. sounds strange, but yes it's a thing. the first line protocol is to get off the offending medication asap unless that medication is preserving your life. Ideally you can find one that will not trigger DIL and your symptoms will resolve over time.

That being said, my doctor told me that unless there is organ involvement, drug induced lupus is considered less concerning. However, you don't want to have any form of Lupus, so I'd push for an alt med.

Did you have a positive Antihistone Antibody test? If so, the level will tell you a lot about severity and resolution.

Good luck!

[fatherchristmas2013 in reply to katidid]

Hi my dsDNA levels have shot upto 53 from 30, so think i'm on the verge of connective tissue disease,my meds they carn't change because there for my epilepsy,They are doing 1 more set of bloods to check my dsDNA levels,then doing the complements and antihistone antibodies check.

[fatherchristmas2013 in reply to fatherchristmas2013]

Hi how is the complements and antihistone antibodies checks done.