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Patty

I Give Up

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I went to the rhummy yesterday and when I told her I started my own prednisone taper she became upset with me. I told her firmly that I want off the prednisone and she then told me that if that's what I want, then I need a new Dr. I got all teary eyed because shes supposed to be the best and also, I am stuck because of my insurance. shes the only place I can go. I asked her about the methotrexate and she said I am not that sick that I need it and that its a bad med with awful side effects that I do not want to deal with. She told me I will loose weight in the next month and to just hang in there. She also told me I do not need pain meds! ###### if only she was in my body! I have to go back in 4 weeks to see her and I tell you I better have lost weight because if not shes going to listen to me. I sat there in shock after she told me to get a new Dr not saying anything at all because I was frightened of what she would do and say next.

 

If I am not that sick, then I really feel sorry for everyone else because I know how I feel and it not good I tell you. I use a shower stool now and I have a stool in my kitchen. I guess she needs me to be so bad I can't get out of bed. That will never happen because I have the little one here. I have to get out of bed everyday no matter what.

 

Thanks for listening,

Hugs,

Patty


Hugs,

Patty

 

If Life hands you lemons, make lemonade.

 

Hashimoto's thyroiditis, Limited scleroderma, Dermatomyositis. Diastolic Dysfunction, dysphagia, Fibro, restless leg. Lupus is a maybe.

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Hi Patty,

I think you might need to "start over" with your dr. Communication and understanding are really a key element in working together to fight this. You need to voice your concerns but be sure not to discount what the dr says. Maybe she got upset because you decided to treat yourself by tapering off the prednisone. Be informed and if you need to, bring in printed documentation of what you want to discuss. Hang in there...

 

Hugs,

Lisa


Lisa Bulman

(Retired) ISN/SCTC List Coordinator

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Fundraiser

International Scleroderma Network (ISN)

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Patty,

I am so sorry you had a bad experience with your rheumatologist. I agree with Lisa that you should start over with her. She probably did get upset because you tapered off without her. I guess they worry about what will happen if you taper off too fast. Take Care!

Nan

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. My first rheumatologist had me on a low dose of pred. for awhile . Although it did help me with some of my problems, it created others I didn't like. My second rheumatologist took me off of it stating it could cause renal failure and or the loss of brain cells. This is truely a tough diease to live with, the same and yet so different . We truely need more research ...

 

I have an appointment with social security next week.

 

I'll share my story as it unfolds.

 

Katherine

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Patty,

I am so sorry for the crummy day you had. I get/am frustrated with the medical profession too and it is unfortunate. I had a doctor tell me the same thing more or less -- so I got another doctor -- but I don't have the insurance restriction that you have and I am willing to travel. I hope you are able to find the right treatment plan for you and this was just the doctor "having a bad day". All the best. Gidget

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Hi Patty,

 

I am so sorry you had such a frustrating visit with your doctor. I agree with Lisa that it may be time to wipe the slate clean and start over. I don't know if you doctor would be open to any research you have done, but maybe you can read up on some of the research on treatment for DM (if I remember correctly that is what you have, right?), and show it to her and explain that that is why you were thinking the methotrexate was the route you wanted to try. If you don't think she would be receptive to that, perhaps just starting your next appointment with telling her you want to "start over" and that your view of the patient doctor relationship is one of collaboration and would she be willing to work with you in that capacity.

 

I do hope you start to feel better and lose (or at least not gain any more) some weight while you stay on the prednisone.

 

Warm wishes,

Heidi

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Hi Patty,

 

My heart is aching for you right now. You know I firmly believe that some people will never "get it" even though they are doctors. Sometimes it takes walking in someone shoes to understand. This must be so very upsetting for you. Honestly, I will be shocked if you lose weight over the next month. Sounds like she is just trying a tactic to keep you on the prednisone.

 

You know what's strange about this, is I'm not on either one of those drugs, but methotrexate is the next step up drug that my doctor says I'll go on. I don't use a shower chair and I don't have a stool in my kitchen. Hmmmm

 

It's important that you and you doctor be on the same page (although I don't always see eye to eye with my doctor). Patients have rights and one of those rights is to refuse treatment. Maybe looking for another doctor isn't that bad of an idea.

 

keep us posted.


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Thanks Lisa,

 

I went in with a list of things I wanted to talk to her about but once she said that I would need a new Dr if I wanted off the prednisone I shut up and cried like a baby. My Dr has been around for years and is very well known in the medical field for sclero and lupus so I really do have a good Dr, its just I feel like I don't have a say in my care. I don't think Dr should threaten to drop you if you don't like the meds they are giving you. I understand that prednisone is given to many and it works well in most cases, I just do not like how its working for me. Oh well I give up. I see he rin 4 weeks and then maybe she will listen to me about this med. I wish I had other options as for insurance goes but I dont so untill I do, I will wait this out.

 

 

hugs,

Patty


Hugs,

Patty

 

If Life hands you lemons, make lemonade.

 

Hashimoto's thyroiditis, Limited scleroderma, Dermatomyositis. Diastolic Dysfunction, dysphagia, Fibro, restless leg. Lupus is a maybe.

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Thanks everyone for your replies. I am feeling better as I know I can not do anythng for a month so I am not going to let it get to me right now. I have one month to get my concerns togeter for her and then maybe she will listen to me as long as I dont play with mt meds again untill I talk to her again! lol This too shall pass and things will get better. I have strong faith in that statement and I will not live by that for myself.

 

Hugs,

Patty


Hugs,

Patty

 

If Life hands you lemons, make lemonade.

 

Hashimoto's thyroiditis, Limited scleroderma, Dermatomyositis. Diastolic Dysfunction, dysphagia, Fibro, restless leg. Lupus is a maybe.

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(((((((((((((((Patty)))))))))))))))))))

Have you presented your doctor with a list of "everyday things you can't do". She's said you're not that sick. Well, maybe she should see that list: having to use a stool in the shower and in the kitchen, needing help out of bed, etc. That sounds pretty serious to me. When I was diagnosed with poly, I was put on only 5 mg/day of predinsone and 10 mg/wk of methotrexate. The MTX was eventually increased to maximum dose of 25 mg/wk and is did work! My rheumatologist didn't want to use the high dose prednisone because of the association between prednisone and renal failure with scleroderma. You might print something out and take to her next time.

 

As Lisa mentioned - communication is the key so it's going to be important that you two get that back since she's your only choice right now. You might need to massage her ego some (doctors love that!) then express the importance of you being involved in your healthcare. Doctors like facts, so any material you present needs to be proven scientific studies. My doctor always reads what I bring in but the first and last time I mentioned "a forum", he shut me down.

 

Big Hugs Darlin'


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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I have a slight caution to add to this general thread. That is, some doctors go absolutely ballistic over Internet printouts. They feel that they should be the exclusive source of medical information for their patients.

 

Please be sure to ask your doctor(s) how they view high quality information from mainstream websites. Some of them heartily object to information that comes from any source, other than themselves. It's best to know that up front, before accidentally treading on their toes.

 

If your doctor is open to high quality Internet information, then use printouts from our main website and not our forums (if possible), since although our forum information is generally great, some of it is just personal opinion, and doctors are usually going to be more interested in solid information that includes citations. And if they are open to high quality internet information, try not to abuse their openness by bringing in reams of printouts or those from dubious sources.

 

Also, it never hurts to ask (ahead of time!) whether your doctor is open to a collaborative relationship. Unfortunately, many doctors are still of the old fashioned "father knows best" school of medicine, and thus are not at all comfortable with patients who prefer to be more actively involved in their medical care.


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Great Advice Shelley!

My rheumatologist is open to Internet research articles, BUT... they must be from a reliable source (preferrably a rheumatology journal). That's the first thing he looks at.

If it's a clinical trial, he's not interested in anything but the highest level. He pooh poohed a couple of trial results on IV cytoxan for sclero lung fibrosis because the number of participants was too small (around 25, I believe).

 

I have given a couple of articles from this site that he loved and appreciated getting, but you're right - you do need to be careful AND you do need to have a comfortable relationship with the doctor. I wouldn't have given him anything a couple of years ago.

 

Big Hugs,


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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Guest Sherrill

A further note just to complicate the issue..........

 

I took in a printout to my nephrologist, who was open to read it, but the first thing he wanted to know was whether it was "peer reviewed"! At the time I wasn't familiar with this term, and still struggle with it. But undaunted he got onto the Internet there and then himself, and checked up on it all!

 

My rheumatologist is not at all keen on anything from the Internet! Mind you there are many websites on rheumatological conditions which are pure quackery, so take care that you only copy off highly reputable websites!

 

Warm hugs,

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Patty Sweet heart--

 

That story makes me furious. I'm so sorry your doctor was making you cry when she should have been trying to explain her point and convince you that she is right.

 

It kind of makes you down on doctors in general. I mean even if you are a great and powerful doctor why would you hurt your patients or minimize them...or yikes make them cry.

 

I would write her a letter. Keep it focused on how you felt during your visit with her, also include descriptions of your day as Janey suggested. And try to explain to her that having DM and Scleroderma is harder than she could ever imagine even though she treats people everyday. And cap it off with you would like her to respect your ideas, opinions, and ultimately your decisions as that is her job, and this is your life.

 

Good luck with this person (she sounds like a beaut!!)

Michael in Florida

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Patty,

 

My Dr. put me on prednisone a couple of years ago,I had a pretty severe ulcers and risked losing my finger. It didn't help me at all and I gained 30 lbs. in 2 months ugh! I didn't take myself off without consulting him, but he did take me off since it wasn't helping me. I had to go to hyperbarich oxygen therapy and it saved my fingers. Anyway he has recently put me on plaquenil, he said it has helped many of his sclero patients, I hope it will help me. I hope you can get everything straightened out with your doctor, I know how important it is to be able to talk to them.Good Luck!


Diana

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