1st rheumy appt, medication questions

[sunflower]

Next Thursday I have my first rheumatologist appointment.  I have been acquainting myself with the medications through these posts and I would like to be as prepared as possible.  Are mild symptoms treated?  Do you just experiment with meds, playing things by ear? There seem to be meds that are hard to tolerate - maybe to avoid if possible?  Here are the symptoms I'm most concerned about:

Sicca symptoms - some have subsided, some seem worse; dry eyes are tolerable; I can eat most foods - carefully
shortness of breath
nerve damage to extremities - tests indicate mild damage (2nd appt with neurologist in a few weeks)
internal thermostat dysfunction - heat, sun intolerance even in mild weather
vertigo - now subsided, mild but ongoing
fluid retention, feel puffy in the mornings
aches and pains that cause restlessness at night

I appreciate any suggestions or guidance.  Thankful for all of you!   

Sunflower

[Joe S.]

1. Bring an advocate with you. I take my wife.
2. Write out you list of questions and symptoms to take with.
3. When youget a perscription, check it for counter indications, drug interactions, and side effects.

[kmhcpt]

I second what Joe said.  My wife often comes with me.  It can be overwhelming at times.   A second set of ears always helps.   My symptoms are mild for now.  Rheumy prescribed plaquenil.  He educated me on the drug and gave me an abundance of information on it.   He also did this even though my blood work was negative for sjogrens.  I had all the classic symptoms.   Always good to write down your questions and symptoms.    Best of luck to you.   

[SjoDry]

Sunflower,

I now have a great Rheumy, but that was not always the case. My great Rheumy is my 5th one. So one of the questions I would ask is are you willing to treat my symptoms if the bloodwork is seronegative?

With my last 2 Rheumies, including my current doc...I had gotten to a point of extreme frustration at feeling like I was on a timer at appointments & unable to have the amount of time needed to have the give & take dialogue I wanted/needed. I started writing to some of my docs (both preceding an appt. & after an appt.). In the first letter (preceding my first appointment with the new doc & after frustrating prior appointments with 3 other Rheumies) I wrote to the doctor explaining that I am seronegative and need to have a physician who is wiling to treat my symptoms regardless of the bloodwork results? If you are able to do that, I appreciate it, but if you can't, please let me know prior to the appointment so I am able to save the co-pay.

In the second instance (to my current doc), at one of my first appointments with him, he made a comment that I was not happy with. He said, "Mrs B, you can't keep running from doctor to doctor". I resisted the urge to shoot from the hip with a response..because it would have been very negative. Instead I went home & thought about the comment for several days. I then wrote him a letter. I said, Dr.N, you made a comment to me at my last appointment that did not feel good, and I would like to respond to that by letter, since we do not have the time needed at a "follow-up" visit to address it.

You told me that I could not keep running from doctor to doctor. I want you to know that I have been sick my entire life. No doc has ever put my puzzle pieces together as a whole. I want to know what is happening to me. I want to know why a 14 y/o girl has part of her lung removed and continues to be sick her whole life. The medical profession has become so disjointed in that each symptom requires a different specialist. I have no one giving me any answers or looking at the big picture. I am not a hypochondriac, cyber-chondriac or neurotic. The doctors have not given me answers, so I have been forced to search for my own answers, as many Sjogren's patients are forced to do. I work FT & own a business. I do not have the time, nor the funds to go to doctors for the fun of it. My quality of life is important to me. That Dr.N, is why I am running from doctor to doctor.

He was a totally different person after that. I don't think patients do that enough. Some docs would blow that off. But if the doctor is truly patient care driven, they will listen to the message. And I was so fed up that I didn't think I had anything to lose.  I now run a support group here in Pittsburgh. My doc just started a SS clinic here. We meet outside of my appointments about the group & how we can help e/o. I told him that I can send him lots of patients, but how he treats them will determine if they come back. He refers to me & vice versa.

Sorry...I am getting off track here. I guess my point to all of this, is to be a strong advocate for yourself. Don't be afraid to ask any question or feel uncomfortable about having expectations about how you wish to be treated in this (equal) relationship.

I wish you luck and hope you get some solid answers.
Take Care.
SjoDry

[aussie mum]

What a brilliant letter Sjodry!

[sunflower]

Thank you all.
My husband will come with me.
My questions are ready.  I just think I have too many!
Meds - I already have a close, trusted relationship with my pharmacist. 
Rheumatologist - I am hopeful I have a good one.  I went on rateyourmd and read all the reviews, and the support group affirmed my choice.  But I purpose to persevere to a better one if necessary.
I have a 90-min appointment.
Good point about sero-negative and if he treats anyway. 
And putting things in writing - yes!  In fact I did that today with my neurologist.  I found 5 false statements in his consult report.  I put the corrections in a letter with a request to get it to my rheumy before my appointment and delivered it this morning.  I had to do this with an oncologist years ago and it worked well.

SjoDry - you have no idea how much your illustration of advocating for myself means to me.  You can see above that I started that  with my neuro.  Thank you for putting into words what you wrote to your doctor.  It is so helpful!  I have to do something about my GP.  He used to be caring and supportive but something has changed.  I've been planning what to say in my May appointment but I feel so pressured with time and I get so anxious, a letter is a perfect solution.  He has not helped me get a diagnosis, I've had to do all this on my own.  He filters every symptom through an anxiety screen.  Everything I talk about that I've researched is suspect.  I get the feeling he doesn't like me knowing something he doesn't.  Equals?  Hardly!  We patients are the ones with the most skin in the game, but I have felt rejected - like a no-nothing nuisance.  I was so frustrated at my last appointment I decided I would never go to him again with symptoms, I would just go to specialists. And if he asked me how I was doing I would say, "Fine."  Just after that someone posted here about how crucial it is for our GPs to know everything about us.  That really highlighted my dilemma and has kept me thinking.  Thank you for also writing about the outcome.  So much good came out of your letter it's incredible.  And it's still coming.

You did not get off track, you came right to where I am.  Amazing.  I feel strengthened and empowered.  Thank you!!!

Sunflower

[SunshineDaydream]

Here's an article called "Sjogren's and Preparing for a New Doctor Visit" from the Sjogren's Syndrome Foundation website which you may find helpful.  http://info.sjogrens.org/conquering-sjogrens/bid/213972/Sjogren-s-and-Preparing-for-a-New-Doctor-Visit

Sounds like you've done a good job of vetting your new doctor and getting solid recommendations. I hope you like him or her and you come up with an effective treatment plan together.

[sunflower]

Hello Sunshine DayDream,

Thank you for this link.  I've been on this site but hadn't read this part.  It is excellent and it has already helped me with my hematologist.  He wants nothing to do with the SJS and I've been thinking I need to ask my rheumy next week if he can suggest someone.  This confirms that.

Something that has already impressed me about the appointment next week is that I was to go online and fill out a 2-page intake form and bring it with me.  Now I know what is important to him and what I want/need to supplement.  I will start my own file with him in the next few days.  My copy of the Sjogren's Handbook should arrive any day.  I am hopeful that going prepared will be in an asset because the rheumatologist is on the teaching faculty of the University of British Columbia and will have a resident with him.  I'm thinking they will be the type that appreciate spending time efficiently.

This link is a great guide for me, thanks! 

Sunflower

[SjoDry]

Thank you Sunflower & Aussie Mom.

I am glad that that approach resonated with you. I guess if one has enough bad doc experiences, you get to a point where speaking your mind feels like the right thing to do. Saying it in writing allows you to really think about how you say it. That..and they can't cut you off.

I forgot to add that I had a diagnosis of SS from Cleveland Clinic when I met my current Rheumy. He is one of those doc's trained only to diagnose SS only if the blood work proves it. He changed my Dx to Sicca. It bugged me..but I kept thinking..don't rock the boat..you're being treated & that's what counts. So in spite of that message..I kept doing my own research.

I came across an article on Pub Med that noted that patients with (CVID)..a severe immune deficiency that I have..CANNOT produce the antibodies that Rheumies look for to diagnose SS. I highlighted it in yellow & sent that to my doc also. He changed my diagnosis back to Sjogren's.

Glad your husband is coming with you. That can also effect the doctor dynamic at the appt. All of the experiences that you had with doctors..so many of us have or have had in the past. It can really do a number on you after so long. We get tired of questioning our own sanity. I was the family fruitcake in a few family member's eyes..for years..until I had some serious diagnoses.

Those experiences are unfortunately part of this journey..at least until agreed-upon diagnosing criteria is completed and doctors learn more about the systemic realities of Sjogren's. In any event, I do feel like an empowered patient & will never let anyone second guess me again. Geez..listen to me..I am Sjoggie..hear me roar (haha..choke is more accurate)

Good luck and keep us updated on how things go.
Take care.
SjoDry

[sunflower]

I feel humbled and grateful that I'm able to benefit from the trying experiences of so many of you.  You have tilled hard soil and newcomers like me benefit.

Interesting that the diagnoses can be reversed and reversed again, depending on the doctor.  CVID sounds alarming and I imagine you are watched closely for lymphoma. 

Messages in writing - Yes, finally it feels like the right thing to do.  In addition to being able to think about it ahead of time, it is a documented request.  I'm hoping that carries more weight than a verbal one.  My symptoms in writing that I showed my neurologist and that are sitting in his computer?  It is evidence that they were indeed reported.

May the time come soon when diagnosing criteria and research can be put on a fast track for those of us who languish.  Meanwhile, let's take heart, take courage in hand, do our homework and stand strong as our own advocate.  That seems to be the theme for me today!

Thank you everyone.

Sunflower 

[SS Lady]

SjoDry,   That was a wonderful letter to your doctor. Kudos to you. You are a very intellectual person, IMO.
SS Lady