Finally, a little progress

General
#1

I have been fed up for a while now with my doc, it got worse after I joined this group and started reading some of the other stuff that you all have been going through. I had kinda guessed that my Rheum wasn't doing all he could, and that there had to be more options other than the Chemo he has been suggesting.

I had an appointment this morning, and I went in with my "fighting boots" laced tight. It's amazing how much more attentive he became the second he found out i asked his nurses for a copy of all my records. He knows something is up, and he figured out today that I don't play nice when I am frustrated.

I understand that he has a huge clientel, but what bothers me the most is he is stuck on this idea that Plaquenal is the ONLY thing on the planet that is going to make me feel better, and but since I can't take it because It gave me a bad allergic reaction, he is at a loss. WHAT THE HECK!!!! He has my notes on his computer screen everytime I go in there, yet he can't ever remeber that he gave the stuff to me before nor can he remember why I stopped. So I told him, that I was sick of the fact that I have been seeing him for a year, and I have only gotten worse. I am sick of feeling like crap and having no options, when I know for a fact there are more things to try OTHER than Chemo. I also let him know that although I don't want to be on ANY medication, I would rather try SOMETHING instead of sitting around and doing NOTHING for this.

So, with that he ordered another round of blood tests. He also has me trying out Lyrica for the sensitivity (it only took me getting to the point of tears when I take a shower and the water hits me).

In April, I have an appointment with a new Rheumy. He is supposed to be amazing, but in the meantime I have this current Rheumy to deal with, since I refuse to be stuck without anyone to help if I have an issue.

I usually have no problem speaking up about things I don't like, but since I was diagnosed I lost that voice and that courage to stand up for myself, because I was so afraid to make the wrong decision. Let me tell you, today I am no longer afraid. I have my voice back, I will use it, and I will do what I need to do to help ME for once.

Anyway, just wanted to share. :)

#2

Did you know that if you look up on top and see the word Doctors that it is site on this group that you can post to find a good doctor in your area or other post good doctors they have and also how to find a good doctor. I would go look there.

There is no excuse in you area with so many around that he is just has not even proposed to try you on the first lupus drug for us every! here is link...really is Time mag online site but you can go FDA and read about it there as well. http://healthland.time.com/2011/03/10/fda-approves-the-first-new-lu...

But he must think you have fibromyalgia since that is what Lyrica can be for and often it runs hand in hand with SLE. But i would ask why he wanted you to try it.

You might ask him if he could...to read your chart before he walks in so he is not wasting both your time and his while he reads it to catch up with you? I Hope you are going to see him ever 3 to 4 months and you are getting more than 10-15 minutes with him. Just check out Doctors and you will get an excellent idea what a really good doctor does and how much time they spend with you on each and every visit.

If you are not having any organ or joint problems showing up on his tests well that is good thing but he still needs to find out why it hurts when you take a shower with lyrica...as that is not good nor typical side effect...or that i have heard but we all are different.

Also check Lupus Foundation of America and they can give you some sites plus groups in your area. Those in person support groups are one of if not the best places to find out who are the good doctors. So try...you can call group leader if you cannot make it to a group.

So go on Doctors and read some of the great ideas out there about finding a good SLE Doc. I hope you link up with someone from your area .

i am really sorry you have suffered so much and just sounds like you doctor is inept, lazy or very greedy. I hope you do find a good doctor....and fast! good luck and Happy Holidays!

#3

So glad you found your voice. So important to be ur own advocate. The Lyrica should help with the nerve pain. Im on gabapentim ;generic of neurontin. It helps tremendously with burning shooting pains and all over burning skin. Have you tried switching to a bath? May be less painful till Lyrica kicks in. Keep us posted

#4

Have you tried brand name Plaquenil? When I tried the generic (because it’s what my insurance filled first), I had horrible reactions (itching, redness, etc). My doctor then wrote a brand necessary prescription and I did much better. Apparently the generic has different ingredients/preservatives the brand name does not. I know it’s not the med of choice for everyone but wanted to share my experience.

#5

Glad you have your voice back. Yeah, speak your mind. Prolong use of Plaquenil can have sever effects on eyesight. I’ve been taking it for more than a month and it made my vision really blurred. Had to go see an opthalmologist for it. Glad i didn’t have permanent eye damage… yet. It could lead to that according to my rheumy.

Hope everything turns out well for you.

#6

It's amazing how our doctors just really don't have a clue as to what we go through! I feel like I get more help from all of you wonderful friends on this site! Get this, at my last Rheumy appt. my husband finally went with me. Because he did, I asked the dr. if the prednisone that I take (4 mg./day) was enough to cause my "mood swings" (we all know that it's just part of Lupus - you get tired of hurting, tired of not being paid attention to, and tired of no support from family and sometimes the only way to let it out is to yell & scream!) Anyway, sorry - that's a whole other issue. So, the Dr. suggested a phsycologist. I didn't really want to do this as I didn't think it would help but made the appointment anyway - after all, there was nothing to lose! We both went last week and the dr. straight out told me that his mission was to prescribe medication for me! I found my voice at that point and asked him straight out - do you know what Lupus is? He said he had heard of it. I then proceeded to tell both him and my husband exactly how I felt - that if you don't know a thing about Lupus, how can you think that anti-depressants are going to help? The real kicker that I said that maybe my hubby can now understand is that I looked straight at him and said - I have been bending over backwards this past month to help you (he has had bad sleep apnea and anxiety attacks and I have been up with him helping!) That is what we're supposed to do - help each other and I expect you to do the same for me when I need it. I told him he needed to "try a little harder". I also am going to find a new Rheumy - one that isn't so old (mine is at least 80) and one that has a better understanding. Wish me luck. Thanks everyone for all your support and I hope you all have the best holiday season! Love to all!

#7

Bravo to you! That is incredible! So much more difficult too, when all your nay sayers are men.

I'm still afraid to actually express how I am feeling, physically or emotionaly at this point. I have only mild symptoms right now, but I do get tired of being called "old woman" when I wince in pain from trying to stand up. A lot of the time I hurt, but I have a pretty high tolerance for pain, so no one ever really knows. I go along my day so by the time dinner is over I'm ready to sit on the couch for the rest of the night. I struggle with feeling like I am being lazy, especially since I really need to lose some weight.

#8

yes with a lot of the rheumatologist you have to speak your mind and tell them what you want done, there’s all kinds of different treatments out there you got the Myers infusion , benlysta infusion .which I just started all last month I’m doing my third treatment this week and I haven’t felt this good since my back surgery 6 months ago, also besides Plaquenil you have MobiC . I guess my point being you have to speak your mind .and tell these doctors what you want done I’ve learned that.

my list of medications I’m doing right now are.
prednisone
Plaquenil
mobic
celebrex
Imran
folic acid
about a month ago just finished 12 weeks of Myers infusion
Benlysta infusion
and last but not least my vitamin D supplement for the prednisone.

I had been to 2 different route ologist before I found this 1 it took me a year and a half to find this lady and 6 months to get in to see her.
since I’m sick all the time and I just don’t have the energy or the strength to argue with the doctors I have my wife do it she is the backbone of my health . from watching her and experiencing her be in the medical field she is straight to the point and tell the doctors what’s up with me and what we want done and really if you request what you want. and have a armed yourself with the knowledge of the drugs and treatments that are out there and available for you they usually stuns them and they usually go with what you say because you’ve already shown on that you know that knowledgeable what’s out there. excuse the typos my hands are swollen and hurting today. best of luck to you just do a lot of digging and research and express what you want don’t bite your lip. remember it’s your health not the doctors.

#9

Wow !!! what a mess, GOOD LUCK WITH THAT. Many blessings and hugs:)

#10

Hello MamaMarshall,

Just love that fighting spirit on the end of your discussion and that's the attitude you need to keep for the future and hopefully your other rheumo will turn out ok on helping you...he sounds just like my old one, he kept messing me about how yours was and about paperwork besides drugs.

You always get the odd one and see how the lyrica goes as i wish you best of luck plus it's been good how you've vented and discussion's like this always reminds other's members not to let any specialist mess them about.

Nice one mate and do takecare. Hugs Terri xxx

#11

Bless your heart! I'm so proud of you for speaking your mind and standing up for yourself! The best patient is an informed patient and we have to be ready to go in and discuss our options and don't back down. Prayers for continued success with your new Rheumy....I look forward to hearing all about your first visit.

Much love and hugs,

Lori

#12

"WELL SAID LORI"....DETERMINATION AND KNOWLEDGE IS THE BEST. :)

loriken214 said:

Bless your heart! I'm so proud of you for speaking your mind and standing up for yourself! The best patient is an informed patient and we have to be ready to go in and discuss our options and don't back down. Prayers for continued success with your new Rheumy....I look forward to hearing all about your first visit.

Much love and hugs,

Lori