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Old 04-18-2009, 06:41 PM   #1
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mindy1974 HB User
Am i the only one who cant take meds?

Iím in a flare and really depressed hoping to hear if anyone else goes through this. I was told I had mild lupus 6 years ago. My organ have never been involved nor has my skin. I have sever pain in mussels and joints, flu like symptoms and all that jazz. I have a very hyper negative reaction to medication and have tried many medications and different doctors to try and find relief. I wont bore you with the details of what I took and what happened, just trust me that drugs are worse then the pain for me. So I am trying to live with this disease with low stress, good diet, exercise, and meditation. But I feel so alone with it. I read so much about people who get better with the use of drugs. I wish I could find someone who has to do it the way I do it. I know I sound like I am feeling dory for myself, I guess I am. I just need to know I am not the only one. Thanks you guys for responding!
derlinda

 
Old 04-18-2009, 09:37 PM   #2
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goldyfm HB Usergoldyfm HB Usergoldyfm HB User
Re: Am i the only one who cant take meds?

You are not alone. I started with a serious reaction to a simple sulfa drug that has cascaded into one sensitivity after another. I find that certain classes of drugs have the opposite effect on me. Sleeping/sedatives make me hyper, antidepressants (Fibro also) make me totally depressed and lethargic. I can not tolerate steroids as they make me deathly ill. I have tried dozens of meds that I could not tolerate. It makes one so leary of any new med as you never know what the next one is going to do to your body. I totally understand what you deal with. I have been there myself. I try to add only one med and usually I will half whatever the doctor gives if it can be halved. I am just not going to take a chance. You haven't lived until you have a procedure done that you are supposed to be out and you are awake all the way through and don't sleep for a week afterward. It is definitely not fun, and somewhat scary!

 
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Old 04-19-2009, 10:15 AM   #3
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Angel MJ HB User
Re: Am i the only one who cant take meds?

hi ... also develop side affects ... always had a on-off things with meds. i try manage the symptoms and when it gets real bad i seek medical treatment ... like now i am about to go back on meds

have you thought about or tried acupuncture ? i had amazing results ... food for thought ...

 
Old 04-19-2009, 08:21 PM   #4
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Re: Am i the only one who cant take meds?

thanks so much you guys. it really helps to know i'm nothe only one who can get med relief. my doc wants me to try plaqanel(sp?) again. i trying it 4 years ago and i just about scrached my skin off and my hair fell out. i was not on it long enough to see if it helped with the pain. i guess it would not hurt to give it another tiny try.
good night friends.

 
Old 04-20-2009, 03:29 AM   #5
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Re: Am i the only one who cant take meds?

Derlinda, hi. One of the lupus hardcovers---I think Dr. Wallace's---discusses skin reactions to Plaquenil. Do you remember if you tried the generic = hydroxychloroquine? Or the brand-name = Plaquenil? There may be FEWER REACTIONS to the brand-name formulation, which is why I was wondering.

I remember several others posting in the past about skin reactions to Plaquenil & hydroxychloroquine. If you can't find those old threads using the SEARCH box, you could start a new thread with a catchy title & maybe get some insight from others who've worked thru the problem.

Do you see your rheumie regularly to have bloodwork & urinalysis performed? Since you aren't taking meds that reduce unwanted production of damaging autoantibodies, I hope your rheumie is keeping *especially* close tabs on you. Sending you my best wishes, Vee

 
Old 04-20-2009, 08:33 AM   #6
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Re: Am i the only one who cant take meds?

Hi Vee,
Thanks for the reply! I don’t know what sort of plaquinel I took but from what I have read I will make sure I use the real one next time. My doctor does keep close tabs on me. He is not alarmed by my blood work because there have been no significant changes since I was diagnose 6 years ago. I think I’m just hitting that wall of “sick and tired of being sick and tired” lately. And as like most of us I get new symptoms every once in a while and that scares the heck out of me. But they go away and then WHAM!!! More new goodies to obsess about!
I tried low steroids for the first time and went into a horrible mania that took me 5 days to pull out of. It was one of the scariest things I have gone through in a long time. The sad part was that although the steroids made me crazy, they took away my foot and hand pain with in 24 hours! Oh well.
Thanks again for the insight.
Derlinda OX

 
Old 04-20-2009, 10:51 AM   #7
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Angel MJ HB User
Re: Am i the only one who cant take meds?

Hi D ... isn't life weird ... the things that help hurt

 
Old 04-20-2009, 08:25 PM   #8
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Re: Am i the only one who cant take meds?

Derlinda, sounds like you and I have similar reactions. You aren't a redhead by chance? I have been told all my life that redheads tend to have wierd reactions. Anyway, I can tell you I experienced the same mania you describe just from a steroid injection (epidural) for FMS. I had extremely high BP and Pulse for a week. I was alone at the time and it was the scariest few days I have ever had. I even called my heart doctor to see if he thought it was the steroids or my heart. I could hardly walk much less drive. I know I was told to never take steroids ever again. I had a similar reaction to sulfa drugs years ago, and was given a synthetic sulfa drug some years later that caused the same type reaction. It is hard to manage your health when new meds have such detrimental effects. I know everytime I have some wierd reaction it takes forever to get back to the pre-reaction state.

 
Old 04-21-2009, 07:04 AM   #9
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Smile Re: Am i the only one who cant take meds?

Hiya derlinda,

I cannot take pain meds either. NSAID's are a no-no. I am on so many other medications for other serious problems so I have to be very careful. The only thing I take is paracetamol. It is so hard at times but I have to weigh up the megative effects that pain meds would have on me.

I have postd in the past a gentle stretching exercise routine, it has worked well for a few people here on the HB. Maybe I could let you have a copy? I personally have had acupuncture for stiffness in my neck and shoulders - it was good and helped. When I can afford it I would like to have it again.

The thing is derlinda what is suitable for one person is not always suitable for another, even though the medical condition/symptoms might be the same. Mind you your doc sounds good and maybe it is a case of trial and error with meds for you. You might just be able to take something worthwhile. I know you have had advserse effects from some things, but I honestly would give other things a try if possible.

Not being harsh here, please don't think I am - you know me better than that though - but if you are prescribed a new med try not to be tempted to read up on it too deeply. Ask your doctor what it does and how it works. Reading information in depth on meds is in some cases what makes people ultra aware of what 'might' happen and the fear of this 'might' stops them from even giving the meds a go.

Let me know how you are doing. Take care.

goldenwings
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Last edited by goldenwings; 04-21-2009 at 07:07 AM.

 
Old 04-21-2009, 06:02 PM   #10
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mindy1974 HB User
Re: Am i the only one who cant take meds?

HA! Golderwings knows me so well! I read way to much on my meds and I know that triggers my anxiety at times. So next time I go in I will be open to new things. GW I did not know you could not take pain meds, has it always been like that? I would love a copy of your stretching routine. Thank you to everyone who has responded to my post. It makes me feel hopeful and less helpless.
So glad I have you all to listen to!
derlinda

 
Old 04-21-2009, 06:23 PM   #11
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Smile Re: Am i the only one who cant take meds?

Hiya derlinda,

Good to speak to you again. I have not been able to take pain meds for a number of years, but could tolerate some not too strong ones many many years ago before all of my other medical conditions kicked in. I had to take toxic meds for all of these so pain meds were out - the interactions were serious, so best not to even try them it was decided by the medical teams.

Then I had my first heart attack and it totally changed the whole of my medication regime. 2 more heart attacks, then heart surgery and now that I am in heart failure, I only take the paracetamol.

I will send you a copy of the stretching routine by pm. Take care.

goldenwings
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Old 08-19-2009, 07:00 AM   #12
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Re: Am i the only one who cant take meds?

I am a redhead, and have been over sensitive all my life. As I child I would not eat any processed meats, and meds make me really tired. I'm very sensitive to msg also, makes me feel very edgy. Esp. since my hysterectomy.

 
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