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06/04/2010 06:38 AM

Drug related Lupus?

otis5761
Posts: 1
New Member

Hello to the forum - thank you for being here and sharing your stories...

I am seeking wisdom and info on drug related lupus specifically in regards to beta-blockers (Toprol XL).

Have just finished a marathon diagnostic extravaganza with my neurologist who has now given me a clean bill of neurological health. However, he referred me to a rheumatologist to address the following symptoms: frequent numbness, tingling on left side only, raynaud's in hands and feet, bouts of fatigue with joint/muscle aches (like flu), elevated ANA. After researching a bit, I realized my symptoms could be like those of Lupus - including a mild butterfly rash which I had heretofore attributed to menopause (neuro missed this because I wear makeup to cover it up - who knew?)

In my search for info, I read that beta-blockers can cause drug-related lupus - do any of you have knowledge of Toprol XL being a possible cause? I take this for PVC's and high bp.

I await my appointment with the doc - any preparatory info and advice would be most appreciated. God bless.

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06/04/2010 09:49 AM
redhairali
redhairali  
Posts: 3742
Group Leader

Hi and welcome to the group. the people here are very caring. Drug induced lupus will go away if you stop the drug. It is possible that you have lupus. Have you looked through all the symptoms? Think back and see how many may have been there all along. Make a list of questions to ask the rheumy. Lupus can be different for each one of us. Of course I hope you don't have it, but, if you do, we are here for you.

Alison

Post edited by: redhairali, at: 06/04/2010 09:51 AM


06/04/2010 09:58 AM
Bunnyhugger75
Bunnyhugger75  
Posts: 2019
Senior Member

Welcome to the group! Alison had great advice for you and I also hope you don't have lupus, but if you do we are all here for you. Please post often and keep us updated on your condition.

Take Care,

Amy


06/04/2010 01:55 PM
Looopie
Posts: 2165
Senior Member

Hi otis and welcome to the group. There is a wide variety of chemicals (environmental and therapeutic) that induce lupus once you are exposed to it. You have to look back to see if you have lupus symptoms before you have started on the beta-blockers. Hope this helps. Marie

06/04/2010 07:25 PM
mumeva
mumeva  
Posts: 6150
Group Leader
I'm an Advocate

Hi otis welcome to this great support site. Ali is right.....there are different medications that can cause drug-induced Lupus but when you stop taking the drug the symptoms go away.

Eva


06/04/2010 07:51 PM
Looopie
Posts: 2165
Senior Member

Well, I don't want to break anyone's hopes but my lupus was triggered by drug exposure and never went away, because once triggered, there is no switch to turn it off. I have been hoping everyday that it will go away.... A girl can hope, and why not?.... Don't worry too much Otis; go to the rheumy and see if treatment makes the symptoms go away. Your symptoms sound systemic though, but then again, it may just be another variant of autoimmune disease other than lupus. Wishing you well. Marie

06/04/2010 09:32 PM
redhairali
redhairali  
Posts: 3742
Group Leader

Most of us had something "trigger" our lupus. But that just means it was already there, just waiting for the time to come out. That isn't "drug induced lupus". That DOES go away after the med is stopped. The fact that it may have been there all along was why I said she should go back and see how long she had some of the problems.

Alison

Post edited by: redhairali, at: 06/04/2010 09:43 PM


06/04/2010 10:14 PM
Looopie
Posts: 2165
Senior Member

There are an increasing body of information about the trigger of lupus generating out from medical reports every day. There are so many new chemicals which when exposed would induce lupus in persons who have no genetic predisposition for lupus, i.e me, and which the lupus would not remit, i.e me. I guess it is the same situation with the negative ANA, which 10 years ago, doctors would rely on to exclude the diagnosis of lupus. I also remember there is a member on the forum once who was injected with the flu vaccine and contracted lupus which then would not remit. I guess when we think that science is already saturated with the knowledge of lupus, new discoveries come out that throw us out of balance. I guess medicine should concentrate on finding the cures for lupus, than spending an inordinate amount of time arguing about what could be or could be not lupus, and then delay our treatment on the basis of their value judgments. I agree with you Alison, all our friends should go and see the rheumatologist for treatment, and we will cross our fingers that the lupus recede.

Hope everyone will have a nice weekend. Marie Smile


06/04/2010 10:44 PM
Pandora74
Pandora74  
Posts: 1985
Senior Member
I'm an Advocate

Everything that you all are saying is very interesting. Most of what I have read about drug induced Lupus does say it will go away. People like you Marie show us that no matter how much research they do into causes there are still cases that contradict the evidence that they come up with. It is just so frustrating to look at all of this and it makes you wonder if they will ever figure it all out. I know that they sometimes compare Lupus to HIV in that they effect the body in a similar manner only Lupus is not contagious. But when you look at the timeline on HIV they came up with solutions so much faster. It seemed like they poured a massive amounts of money into research and treatments. I am wondering if it was because it was contagious and it effected a larger population than Lupus. I remember a post (memory failing me) by someone talking about how much of this is politics and ego. I think it is really sad for us. I really would love to get involved more in advocating for Lupus patients. If anyone has any ideas or knows of groups please post with information.

06/05/2010 09:03 AM
Bunnyhugger75
Bunnyhugger75  
Posts: 2019
Senior Member

I think the comparison to HIV is a good one, Pandora. You nailed it though, it is contagious and there was MAJOR publicity and public panic. That is the recipe to get a quick cure for sure. In the last 5 years I have had lupus, I have noticed a bit more publicity about it in the last year. Go to the site Cure4lupus.org for lots of ideas on how to get involved with lupus activism.

Hope everyone has a pain free weekend!

Amy

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