What do I do now?

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Gidget^
Regular Member


Date Joined Aug 2007
Total Posts : 171
   Posted 10/24/2007 5:46 PM (GMT -7)   
Over the weekend I had an allergic reaction to the Plaquenil I've been taking.  Monday morning I called my rheumy and left a message with his nurse explaining what had happened over the weekend and asking what I should do now.  about two hours later the nurse called and said that he wanted to put me on Salsalate.  After reading the warnings on the drug I felt that it probably wasn't the best drug to be on with having one artery blocked 60 to 70%.  I called and explained this to the nurse yesterday and asked if the Dr. could suggest another (generic) drug.  I never received a call back so I called again today and left another message apologizing for being such a pain, but that it concerned me going on that drug with the warnings it had about heart attack and me having a 60-70% blocked artery.  I asked if she'd give me a call back and again apologized for being a pain.  No phone call.  They were in yesterday and today because when I called to leave a message I asked if they were in.  So now what do I do?  This rheumy was my last chance before I flew back to where I use to live to get some help.  My numbers are elevated, I've been given a diagnosis of Lupus ... but I think I've made the dr. mad now.  Any ideas, I'm desperate.

Gidget^
 
SLE 9/07, FMS '90's, Spinal Stenosis, Osteoarthritis, Sinus Tach, PVC's, Kidney Stones, RLS, Parotid Neurofibroma 8/04, Cervical Cancer 9/06
Clinoril, Toprol XL, Prozac, Zyrtec-D, Zocor, Vitamins B6 & B12, Folic Acid, Loratab ,Percoset, Toradol
 
There is no psychiatrist in the world like a puppy licking your face.
 
 


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 10/24/2007 6:24 PM (GMT -7)   
Did you go to the hospital when you were having your allergic reaction?  What symptoms did you get?  It's not great that your rheumy didn't call you back.  I have had that before too with my rheumy and it was due to her "being so busy she forgot". 
 
If you went to the hospital, they should have had the ER doc contact your rheumy to discuss what action to take next.  It's always a good idea to get to the ER if you're having a reaction to any of the meds we're on.  I learned that this past summer when I nearly fell into a coma because I was allergic to a new medication.  I'll always go to the ER now with any kind of issues. 
 
Let us know if you were at the hospital okay.
 
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

33 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, neutropenia, thrombocytopenia. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


TashaMseraph
Regular Member


Date Joined Sep 2005
Total Posts : 37
   Posted 10/24/2007 6:26 PM (GMT -7)   
Personally I have no clue what to tell you but call and speak to that Doctor. You have a right to question what meds they put you on especially with your heart concerns. There are other things he can put you on but they may be busy and forgot to ring you back or they may be just stumped for the moment. What ever reason is behind it don't be afraid to be a pain sometimes. Your health is at stake and I would hate to hear something bad happened cause they didn't call you back. Just be nice and respectful there should not be any reason for them to be mad at you for your concerns.

With God all things are Possible.

Dx: Lupus (SLE)2002, GERD 1995, Depression 1995, Sleep Apnea 2006, IBS 2000, Migraines 2001, Anemia 2002, Seizures in 1995 (unknown causes).  

Meds: Cymbalta 60 mgs, Plaquinil 200mg once daily, Nexium 40 mgs


Gidget^
Regular Member


Date Joined Aug 2007
Total Posts : 171
   Posted 10/24/2007 6:51 PM (GMT -7)   

ginny,
Symptoms started out with itching on my feet and the palms of my hands.  (That's how my allergic reactions seem to start.)  I took Benadryl.  After about an hour the itching expanded to my back where I found hives on my chest and back.  That's when I decided to go to the hospital.  I've had allergic reactions before and I know better than to try and deal with it myself, it can be a dangerous situation if you're not careful.  If you see hives on the outside of your body, you have them on the inside of your body.  While I was there I looked at the soles of my feet and it had progressed to welts.  They gave me a shot for the allergic reaction and sent me on my way after telling me don't take the plaquenil anymore and call the doctor on Monday. 

I had a wonderful doctor where I use to live.  At that point I had the symptoms but no labs and he felt I had lupus and was treating me like I had lupus.  Four years later, I'm living in the south where I've been through 5 doctors before I found this one who diagnosed me with lupus and seemed like he was concerned about me.  I was thrilled to finally have a decent doctor.  My PCP has been great and he knows a little about lupus because he has a sister who has it but he's told me that he needs me to see a specialist because my numbers are so high. 

I could see the nurse not calling back yesterday, but when I called again today and left another message she didn't call me back.  It's been since Monday now and no phone calls after I explained I didn't want to go on that drug.  I know to some this might be trivial but I don't feel good.  I haven't felt good in months and month, my labs are up, I sleep because I don't feel good, I sleep to get away, I sleep because I can avoid trying to move around.  I have a wonderful husband but he's gone a lot, he's running his business plus gone back to school to become a radioligical tech, so I'm home alone a lot.  Family support is nil ... one niece who has tried killing herself twice and won't even talk to me because I'm the one who called 911, and even moved out of state to get away from me.  My sister doesn't talk to me anymore because she thinks I'm making more out of my condition than there really is, my other niece is going through a divorce because her husband was arrested for dealing cocaine out of there garage (she had NO idea!) and also found out that her husband is having an affair with her brother's wife.  I have no children, my parents are gone and here I sit, sick and need a doctor.  Sounds like a soap opera.  I'm just so tired of problems, being alone and now having to deal with dr issues again. 

Thanks for the advice, I'll give it another couple of days before I give up on the doctor.
Gidget^
 
SLE 9/07, FMS '90's, Spinal Stenosis, Osteoarthritis, Sinus Tach, PVC's, Kidney Stones, RLS, Parotid Neurofibroma 8/04, Cervical Cancer 9/06
Clinoril, Toprol XL, Prozac, Zyrtec-D, Zocor, Vitamins B6 & B12, Folic Acid, Loratab ,Percoset, Toradol
 
There is no psychiatrist in the world like a puppy licking your face.
 
 


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 10/24/2007 8:37 PM (GMT -7)   
Hi Gidget,
 
Okay, I'm so glad you went to the hospital.  I'm surprised they didn't make sure you were taken care of with another med before they discharged you.  I can totally understand how you are feeling right now. I'd be anxious for a call back too.  This isn't right.  You need care, NOW.  Make sure you hear back from someone before the weekend, okay.  Have you had this doctor for a long time?  Would you be willing to find a new one?  I hope the doctor is getting those messages.  Or is the nurse just being a wanker and not passing your messages on?  That could be it.  You could send a fax directly to the doctor!  Just ask the receptionist for the number!  Do whatever you have to to get ahold of him/her.
 
I'm sorry you have such limited family support. You're right, it does sound like a soap opera. You should have seen my eyes while I was reading your post! I'm not making light of your situation Gidget.  The lack of support is a major issue and I wish you had the people around you to care for you.  You do have us, okay!  And your hubby sounds like a wonderful man.  If you don't hear from your rheumy tomorrow, please call your pcp. At least they might be able to contact your rheumy on your behalf.  Someone has to take control of this for you.
 
Please keep us posted okay,
 
Ginny
 
 
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

33 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, neutropenia, thrombocytopenia. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


Gidget^
Regular Member


Date Joined Aug 2007
Total Posts : 171
   Posted 10/24/2007 9:02 PM (GMT -7)   

Ginny,
Thank you so much for taking the time to reply.  You're right, my husband is wonderful.  I've been married to him for one year but we've known each other since kindergarten.  He was the first boy I ever kissed and after many years of being apart we found our way back together.

LOL the family soap opera ... I just gave you the MAJOR highlights, boy if I sat here and went through the things that just happened in the past year in a half you'd tell me to write a book. 

I made a big mistake tonight ... since the allergic reaction I quit taking everything but my Toprol, Zyrtec-D, Prozac and Zocor.  Tonight I decided to start taking my Clinoril, Vitamins B6 & B12, and the Gelatin capsules to try and make my nails stronger.  Sure enough 3 hours later and I'm itching like crazy.  I guess it wasn't the Plaquenil.  I've taken 2 Benadryl and I'm going to wait a bit to see if it calms down, if not I'm headed back to the ER.

Ginny, thank you again for being there.  Hugs!

 


Gidget^
 
SLE 9/07, FMS '90's, Spinal Stenosis, Osteoarthritis, Sinus Tach, PVC's, Kidney Stones, RLS, Parotid Neurofibroma 8/04, Cervical Cancer 9/06
Clinoril, Toprol XL, Prozac, Zyrtec-D, Zocor, Vitamins B6 & B12, Folic Acid, Loratab ,Percoset, Toradol
 
There is no psychiatrist in the world like a puppy licking your face.
 
 


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 10/25/2007 6:06 AM (GMT -7)   
Gidget, I'm just checking in to see how you are doing and if you ended up going to the ER last night. I'm really sorry to hear about your allergic reaction and that your rheumy has not gotten back to you. It is part of their job to attend to patients and make sure all patients are taken care of. Ginny had a great idea about calling your pcp and asking your pcp to call your rheumy.

Take care of yourself. Your body has been through a lot lately with these allergic reactions. Hang in there.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

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Co-Moderator: Lupus and CFS Forums



Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 10/25/2007 7:44 AM (GMT -7)   
Good morning Gidget,
 
So what happened last night? Fill me in!  I'm relieved to know it isn't the plaq.  You need that! 
 
I love that you and your childhood love are together!  What a blessing and a great story.  I'd love to hear about it!
 
Any word from your rheumy?  Okay, enough questions from me.  Talk to you later, hope you're doing better this morning!
 
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

33 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, neutropenia, thrombocytopenia. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


Gidget^
Regular Member


Date Joined Aug 2007
Total Posts : 171
   Posted 10/25/2007 8:50 AM (GMT -7)   
Hi Ginny and hippimom,
Well 100 mg of Benadryl later I was at the doctor's office at 8:40 this morning. I have hives all over my neck, trunk, arms, hands and feet. Basically I'm miserable! Dr's office gave me a shot and I've got an appointment at 8:30 tomorrow morning with the rheumy. Hopefully he can figure this all out.

I'm off to nap, thank you again for caring! Hugs!
Gidget^
 
SLE 9/07, FMS '90's, Spinal Stenosis, Osteoarthritis, Sinus Tach, PVC's, Kidney Stones, RLS, Parotid Neurofibroma 8/04, Cervical Cancer 9/06
Clinoril, Toprol XL, Prozac, Zyrtec-D, Zocor, Vitamins B6 & B12, Folic Acid, Loratab ,Percoset, Toradol
 
There is no psychiatrist in the world like a puppy licking your face.
 
 

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