How do I confront my Rheumy?

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Swanfleweast
Regular Member


Date Joined Nov 2006
Total Posts : 147
   Posted 2/16/2007 6:38 PM (GMT -7)   
Hello to all...
I am to have an appointment with my Rheumy on the 27th of Feb.
Well if you read my signature, I have been through so much in such a little time. Very sick. My muscles were so weak I was unable to walk. I was just barely breathing. I really didn't think I was going to pull out of this but I did. Thanks to myself. Ok, I call my Rheumy and tell him that something was wrong with my muscles. (And already jnew how sick I was with the other issues). That they hurt so bad, and I was so severely weak in my arms and legs. I told him that I was unable to walk. So he goes to tell me...well I can prescribe you backlofen...I said no you have already prescribed that for me and it was not good for me....he says, what about flexerall...same thing I can't take them..then he tells me well there is nothing else I can do for you and if your current med (Robaxin) is not helping you then just don't take them. (First thing that came to my mind was do I need to detox off these?) But I kept it to myself. I was so furious...I said OK then I won't. And I didn't because they weren't helping me at that point. So I contiued to get sicker. So I started to thread out my meds and figured it had to be from one of those. I started with the last one that was given to me. It was the zocor prescribed by my cardiologist...I called her and she said to quit the zocor and go to your reg. P. our go to urgent care immediately. So I couldn't get in with my reg. P. so I went to urgent care. Come to find out this medicine had intensified my disease and they had to run tests to make sure it didn't cause damage to the nerves to the muscles. Luckily that didn't happen. But he knew I was taking this med. And I am very quite sure there are other meds out there that would help with the muscles..right??  So I want to confront him on this issue because I think he was allowing me to suffer and I really was suffering. If I didn't have the insurance that I have he would be fired?? Anyway any Ideas on how to handle this??? I really am upset with this because I think he could have helped me.
Thanks,
Lori

Fibro, RA, Pleurisy/11/06, Pericarditis/12/06,
Vasculitis/12/06, Myositis/1/07, MVP/1/07, 
IBS/1992, Anxiety, Depression, insomnia
 
Meds: Serax, Prednisone (tapering), Prilosec, Hydrocodone,
Nortriptyline, Baby aspirin, Enbrel 
 
Vitamins: Calcium, Magnesium, Folic acid 
 


Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 2/16/2007 11:02 PM (GMT -7)   
Hey Lori.. wow.. that's not good.. maybe you could file a complaint against your doc? You said he knew you were on the Zocor right? And what it was for? I think you should find another rheumy... hang in there and keep us posted on what you decide...

Duck
Moderator of Arthritis/Epilepsy Forums
Confirmed Diagnosis of - Psoriatic Arthritis/Spondylitis/Graves Disease/GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes/Chronic UTIs
Current Meds -  Enbrel/Prevacid/Synthroid/Nitrofurantoin
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots
Additional Supplements - Multi-Vitamin/Bromelian/Acidophilus/Green Tea
 


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13451
   Posted 2/17/2007 7:37 AM (GMT -7)   

Hi Lorie,

I read your thread and wanted to pass some info onto you. Zocor is for high cholesterol. Who put you on the Zocor and was your cholesterol high? Statins like Zocor are notorious for causing the awful muscle pain and some peeps are not able to get out of bed. On your print-out from the pharmacy is should have told you this was a possibility. Its very common, but you must stop the drug ASAP. All of the statins now have the warning on the print-outs. We all really need to make sure we read these. I always try to, but am known to get a lax on it.lol.

A friend of mine, elderly lady, became very ill, could not walk, get out of bed, in horrific pain. This gal was active as all get out and otherwise healthy as a horse. She was put in the hospital here in Ft. Worth and not one dr could figure out what was wrong with her. All tests came back normal. Her husband would not give up, he took her to the Mayo Clinic, she had been taking a herb that was suppose to lower the cholesterol, it did a number on her. She stopped taking it of course, and got just fine.

Hope you get to feeling better. Susie



Julie1
New Member


Date Joined Feb 2007
Total Posts : 8
   Posted 2/17/2007 8:49 AM (GMT -7)   
nono    Hi Lorie, there is a (B-5) Pantothenic Acid that has taken many from a bedfast situation and put them to living again.  There was only one small book I ever saw on it and I loaned it and I never got it back or have I ever found it again in any book store.  That is sort of the way I lost many health books.
    Your doctor cannot prescribe it because everything they have is a B- complex where all are combined in their prescription books that are written by the pharmaceutical companies.  Any local health shoppe should have it.  I had to use it on my gout as my regular meds would not take out the infections.  By the way it doesn't cost much at all, it is according to the strength you want to buy.  I bought the last for my spouse, 250mg for something like $7.00.   (This is not to be misconstrued as medical advice but is for informational purposes only.)   Zocor is for high chlesterol 
 and tere are some ways to get buy that.  Walmart sells Flax Capsules for around $5.00 per bottles and it does more than any statin drug ever made for cholesterol.  But again the doctors are the outsource for the drug manufacturers.  Many doctors are unaware of the benefits of these over the counter medicines, unless they are a specialist who will tell people different things because the insurance companies don't want to pay for a good prescription even if it doesn't work. God Bless. Julie1

Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7077
   Posted 2/17/2007 9:52 AM (GMT -7)   
Lori, I had the extreme muscle pain and weakness from zocor, lipitor, prevastatin, etc, etc. My GP tried me on every statin medication to try and reduce my high cholesterol. I failed each and every one do to the muscle problems. Not to defend your rheumy's actions, but I have found many specialists sometimes cannot think outside their own "box". It is highly likely that your rheumy never even thought about the muscle pain problems associated with statins since he would not be the one to prescribe it.

If you are limited by insurance to specific doctors and you must stay with this rheumy, perhaps a frank discussion with him about the situation might help. I know how awful it is to be stuck with someone you would rather "lose." Sorry I can't help with better guidance but wanted you to know you are not alone in your experience with the statins.
Co-Moderator Crohn's Disease Forum
 
CD, Ankylosing Spondylitis, peripheral neuropathy, Sjogren's Syndrome
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Swanfleweast
Regular Member


Date Joined Nov 2006
Total Posts : 147
   Posted 2/18/2007 12:38 AM (GMT -7)   
Thank you all for your responses, it is a blessing to have you all listening to me. I hope you all are in not so much pain. Blessings to you all.

Ducky,
I really wished I could change to a different Rheumy, and I still may be able too I just need to see how it works. I really think he is afraid to treat me. I was going to change insurance co. but I was in the middle of serious heart tests and I was to sick to put it off. So I thought ok I'll give it till next year. Then I'm scared of the co-pays on the enbrel and other meds. From what I hear they are so expensive...out of my league. I'll see what he does on my next appointment.

Yes you all are right. It was prescribed for my high cholesterol.
Straydog,
My cardiologist had put me on the zocor. I was on so many meds at the time because all the issues I was having, so I didn't even think about the meds. side affects. I always read the leaflets too, but it didn't register to me what was happening because I was too sick with the pleurisy, pericarditis, vasculits in one of the main arteries to the heart, myositis of the heart and MVP all within three months, (all caused from my RA) they were all overlapping each other. Kind of confusing but I really think he could have helped me some how. As far as him not prescribing me any other meds I can understand that, maybe he was too scared to because the shape I was in. And it being heart issues. But I was truly in agony. I had suffered for months. Hadn't slept for months either.

Julie1,
Thank you sooo much for the info. It's funny because of all I went through I am currently reading a book called natural cures. Pretty scared of meds now. Except the ones I know I can take. But for right now I have to be careful at least till I know I am out of the woods with these heart issues.

Ides,
I am sorry that you had to go throught that too...It's aweful especially when you are really sick....that really just about did me in.
The thing that really gets me is he knew that I had myositis (caused from the RA). The myositis was on the heart muscle itself. Now it being on the heart you would think the cardiologist deals with it but so does the Rheumy because the cause is RA. I would have thought he would have at the least made me take some tests to see if it really wasn't the myositis getting out of control, after all myositis is a rare and very nasty disease to the muscles. It can actually damage the heart muscle to where that part of the heart doesn't move at all anymore. I was thinking it was going into my other muscles. He had just talked to my cardiologist about my diagnosis. He wanted me to start my enbrel to stop the progression, I was in heart failure, when you're in heart failure you can't take the enbrel. Luckily for me the myositis was on the front of the heart so cardiologist thought it was ok to start the enbrel. So I knew he knew what was going on so therefor he should have known something was wrong, I was complaining about severe weakness in my legs and arms to where I was unable to walk, or even talk at times. I didn't know it was the med. How come he didn't think it could have been the progression of the myositis? Remember this was all caused from my RA. Not only that, but I have Fibro too, and is it ok for him just to tell me there is nothing I can do? He ticked me off...sorry for venting and thanks for listening to me. I will let you all know what goes on after my appt. on the 27th. Another thing... that sucker cancelled my appointtment, it was on the 13th. Especially knowing how sick I was and am.....URRRR!!!
Lori


Fibro, RA, Pleurisy/11/06, Pericarditis/12/06,
Vasculitis/12/06, Myositis/1/07, MVP/1/07, 
IBS/1992, Anxiety, Depression, insomnia
 
Meds: Serax, Prednisone (tapering), Prilosec, Hydrocodone,
Nortriptyline, Baby aspirin, Enbrel 
 
Vitamins: Calcium, Magnesium, Folic acid 
 

Post Edited (Swanfleweast) : 2/18/2007 12:55:27 AM (GMT-7)


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 2/18/2007 2:58 PM (GMT -7)   
Dear Lori,
From personal experience along the lines like your situation here, I can offer the actions that I did when a physician wasn't really "doing anything" as I got worse.
To change things (the patient/doctor relationship needed to change) I had to get a little frank & aggressive.
So basically what I did was explain to him what exactly it was that I was not satisfied with...I stated how I felt when I went there, what I expected, what I wanted to happen...etc.
After I did that, things made a total 180. He became extrememly receptive & started moving his rear end!

Filing a complaint to the AMA, unless there was evidential physical or verbal abuse that occured, is sorta useless. They will not take action until quite a few complaints have been filed against him/her (there's too many problematic patients to go after every little complaint). Also, reporting this doctor might hinder in your finding another...especially if the new physician calls for report from the old one (I've seen this happen & people were refused treatment due to word of mouth).

If wanting to change...switch docs on amiable terms.
But I swear...having a real heart to heart...no matter how much ya really don't want to...might result in a really good thing.

Also...I see you have a lot of complications...docs (I know it's no excuse) DO FORGET! Make sure all of the docs treating you are up to date.
I've been given meds that are not allowed with another illness I deal with...so mistakes do happen.
It's especially ahrd with the heart...there's a lot of meds that screw with ya on that one.

In all it's like being your own manager...a job we don't want. But unfortunatley sometimes it's up to us to defer a mistake that's about to take polace by an MD.

Do you have anyone that goes with you to your appts?
For me...it feels like too much so much of the time...too many appointments, too many tests, too many meds...it's exhausting and difficult to keep up with by yourself.

I pray you have easier times ahead & a thing like this doesn't happen again.
Take good care.
Erin
Arthritis Forum Moderator
Active Severe Rheumatory Arthritis. Crohns Disease. A.Chiari Malformation & right brain venous anomoly. Partial Complex Seizures (under control!). MVP & Tricuspid Valve Prolapse. Rheumatic heart & lung. Previous Lymes Disease for 10 years.
Meds: Remicade infusions 300mg Q3weeks; Intra-articular knee injections when needed; Mercaptopurine 50mgQD plus 75mg weekly; Mesalamine 4GramsQD; Prednisone 20mgQD mantainance; Entocort 9mgQD; Meclizine; Augmentin; Tigan 300mg; Reglan; LidoDerm Patches; Diazepam 5mg for AS back spasms; Restaril; Dilaudid 4mg tabs for pain. 


Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 2/18/2007 4:15 PM (GMT -7)   
She's a smart bean, our Erin.. :)
Moderator of Arthritis/Epilepsy Forums
Confirmed Diagnosis of - Psoriatic Arthritis/Spondylitis/Graves Disease/GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes/Chronic UTIs
Current Meds -  Enbrel/Prevacid/Synthroid/Nitrofurantoin
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots
Additional Supplements - Multi-Vitamin/Bromelian/Acidophilus/Green Tea
 


Swanfleweast
Regular Member


Date Joined Nov 2006
Total Posts : 147
   Posted 2/18/2007 4:39 PM (GMT -7)   
Hello Erin,
How are you doing. I love all your responses I know you have been there and some. I wasn't thinking of a lawsuit or even filing a complaint because he has been ok since this and maybe a couple other little issues but no biggie, but just want him to know how sick I really was and he wasn't there for me. I guess I really felt like I was all alone with this. I felt I was sooooo sick and had no where to go. Been to the er and I don't ever want to go back. But just what you have stated, I need to be more aggressive. I need to sit and let him know WHAT'S UP! It scares me because I feel if I get into it discussion with him I am going to crack right in front of him. I can't get myself there so I usually have someone with me. It sucks cuz I have a brand new Tahoe and can't drive it...my legs start to shake and it scares me. I don't know why but I have turned into a monster. I am angry and hurt and have no patience, very sleep deprived. I was upset at one of my daughters she did me in a very wrong way and I told my other daughter to hold me back if I see her because I would put my foot right through her teeth. I am scared of what I am turning into. Is it the meds, the disease or the both? I don't know how my family puts up with me right now. I was the most patient, caring, loving and always there for every one and their needs. Also I live with the Lord in my every moment. The words that come out of my mouth is terrible. I am so ashamed of myself. I had raised my kids to have respect, now they are adults and will never say a bad word infront of me to this day. I truly hope this passes because I don't like myself AT ALL right now. So sorry for laying this on you. Maybe I'll just go in and go with the flow and see what happens. I am going to push for answers though. I have my list ready and waiting. By the way did you get your crutches? because if not I can help you get them...Just give me an address and I can send money for you to get them..Just email me and let me know. I was blessed with the things I needed and you need to be blessed also. I think my email is in my profile. If not let me know....Thank you for being there for me always...blessings to you Erin,
Lori
Fibro, RA, Pleurisy/11/06, Pericarditis/12/06,
Vasculitis/12/06, Myositis/1/07, MVP/1/07, 
IBS/1992, Anxiety, Depression, insomnia
 
Meds: Serax, Prednisone (tapering), Prilosec, Hydrocodone,
Nortriptyline, Baby aspirin, Enbrel 
 
Vitamins: Calcium, Magnesium, Folic acid 
 


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 2/18/2007 4:55 PM (GMT -7)   
hey it's okay to have a breakdown in front of your doc!  it's good..reminds em' that you're human.  Lord knows i do it now & then.
oh thank you but it's fine...i'll get my crutches soon...that was kind of your offering; the pharmacy around the corner carries crutches.
you hang in there.  we're all pulling for you.
take care.
:-)  
Arthritis Forum Moderator
Active Severe Rheumatory Arthritis. Crohns Disease. A.Chiari Malformation & right brain venous anomoly. Partial Complex Seizures (under control!). MVP & Tricuspid Valve Prolapse. Rheumatic heart & lung. Previous Lymes Disease for 10 years.
Meds: Remicade infusions 300mg Q3weeks; Intra-articular knee injections when needed; Mercaptopurine 50mgQD plus 75mg weekly; Mesalamine 4GramsQD; Prednisone 20mgQD mantainance; Entocort 9mgQD; Meclizine; Augmentin; Tigan 300mg; Reglan; LidoDerm Patches; Diazepam 5mg for AS back spasms; Restaril; Dilaudid 4mg tabs for pain. 


Keah
Veteran Member


Date Joined Nov 2003
Total Posts : 7314
   Posted 2/19/2007 5:42 AM (GMT -7)   
Swan, the only real advice that I can offer you is too make sure that you have a conversation with your Doc. After all my years of dealing with Docs who've pissed me off, I've learned that in order to fix any problems and/or address any communication issues, I need to stay calm and relaxed. The few times I have gotten angry have turned into nasty arguments and gotten me nowhere.

Dealing with a Doc is just like dealing with any other person. If you get angry and toss out accusations, they respond automatically by becoming defensive and shutting down the channels of comunication.

I can understand that he may not have known what the problem was, do to the fact that the statins are outside of his mornal practice, but I'd think that he could have at least recommended that you contact your cardiologist, especially since he know all the complications that you've had.

I hope that you and he can come to some sort of arrangement that you will be comfortable until you are able to address your insurance coverage or locate another Rheumy who accepts the plan you already have. Best wishes.
Keah a.k.a. Wormy
 God helps those who help themselves.
Please help us support this invaluable forum.
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Swanfleweast
Regular Member


Date Joined Nov 2006
Total Posts : 147
   Posted 2/19/2007 12:04 PM (GMT -7)   
Keah,
Thank you and that is what I intend to do. I am just going to talk to him about what had happened. I am going to take this up with my cardiologist because now I am finding out that this med. can cause myositis and she had just diagnosed me with myositis a month after taking the med and said nothing. I just know I learned a very dangerous lesson. No matter how sick I am too make sure it is safe for me to take. I just found this last night.....I am not the suing kind of person but I think they need to be more aware of what they are prescribing and to further see what other illnesses people have before prescribing them.

Drug-induced myositis — In drug-induced myositis, muscle inflammation occurs as a side effect of a medication or a combination of medicines. Although this is rare, the most common medications that can cause myositis are the cholesterol-lowering drugs called statins — including atorvastatin (Lipitor), lovastatin (Mevacor) and simvastatin (Zocor) — especially when combined with other similar drugs, and zidovudine (Retrovir), also called AZT, a drug used to treat HIV/AIDS.


Thank you,
Lori
Fibro, RA, Pleurisy/11/06, Pericarditis/12/06,
Vasculitis/12/06, Myositis/1/07, MVP/1/07, 
IBS/1992, Anxiety, Depression, insomnia
 
Meds: Serax, Prednisone (tapering), Prilosec, Hydrocodone,
Nortriptyline, Baby aspirin, Enbrel 
 
Vitamins: Calcium, Magnesium, Folic acid 
 


AkiPuppy
Regular Member


Date Joined Feb 2007
Total Posts : 52
   Posted 2/19/2007 3:33 PM (GMT -7)   
Hi All,
I have just read all of the posts pertaining to the gal who is having problems with the rhumy. All of the advice is just wonderful!! I am so fortunate that I have a great rhumy and also a wonderful primary care doctor. In addition, they both know one another whitch is so good for me. They both know exactly what is going on with me and basically stay out of one another's specialties for the most part. I take more meds than I would like but feel better so I guess I can't complain. I have, however tangled with some doctors in my time. I used to keep my mouth shout but now more. My stay in the hospital two years ago is another story. Keep up the good work, girls and I am so glad I found this forum. Take care all and God bless
AkiPuppy
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