I am so nervous about my appointment with my rheumy t... - NRAS

NRAS

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I am so nervous about my appointment with my rheumy tomorrow.

Radiogirl profile image
15 Replies

I feel quite silly being nervous, but this doctor is somewhat cold and appears not to want to be bothered with questions. I have so many questions about my most recent labs back in July. I've had three appointments with labs each time since March when I was first diagnosed. Since being on Sulphasalzine 500 mg 2x daily, it seems like my labs have gotten worse and RA disease activity has increased into the high activity range. My liver panel labs have been high, so I'm afraid of what he may decide to do with my meds. I've had an awful time of it this week. Increased joint pain, blah, blah, blah.

I am taking hubby with me to meet my doctor so hopefully that might help my doc explain somethings better.

Quick question too while I'm thinking about it. Have any of you taking Sulphasalazine had any difficulty with being able to urinate? I have, but it's been inconsistent. Sometimes I sit down to go and I have to wait for several minutes or have a really slow, weak stream. If it was happening all the time I would have called the doctor's office. I will bring it up tomorrow, though. Just curious about any similar side effects anyone has had with this drug.

On a positive note, we found a little dog today and were able to track down his owner. woof woof.

Blessings to all for a restful and comfortable night. (Or morning, or whatever time zone you may be in. :)

15 Replies
Nettac profile image
Nettac

Hello there, and good luck with appointment.

I have to say sulfasalazine made everything twenty times worse for me. Horrible drug. My blood panels were worse on it too.

beeckey profile image
beeckey in reply to Nettac

I also had had a terrible time on sulfasalazine it made me a lot worse not better.

Deminem profile image
Deminem

Hia Radiogirl,

Aw don't be nervous, his only human.

I used to see the Rheumy specialist at the very top of the tree. The other senior consultants would visibly cower in his presence. He was a serious no nonsense character. But not in my eyes, that was like a red flag to a bull for me. It was a personal challenge to crack him open. I would bound in like a puppy(cute dog you found btw)and treat him as an equal human which he is. I think he respected someone not crumbling for once.

He eventually left that hospital and I joked saying "Aw your going..you know you was my fave" He actually cracked a smile and said "And you know your a charmer"my work was done!

If you treat your rheumy as an equal bcz face it they are, you maybe surprised that they respond as one.

Good luck, but you don't need it ;-)

D

Candy profile image
Candy

Hi,

I'm on triple therapy, which includes Sulphasalazine but not had problems, that does not mean to say it suits you though. Also could you have a Urinary tract infection? Let the Dr know your experiencing difficulty passing urine though. One of the ways that may be helpful to you, is to write all the questions you need answers to, down and go through them one by one at your appointment. My husband always attends with me too, as I don't always take everything in that's said. I'm very lucky with my consultant as he works in partnership with me, sometimes coming to a happy medium to get it right. You have a right to know answers to your questions. The more information I have, the more in control I feel, which means I don't feels as worried.

Wishing you all the luck and courage for your appointment and hope it goes well. Sorry for lengthy rambling reply. 😊 Let us know how you get on. Candy

Gnarli profile image
Gnarli

All the very best for tomorrow. Ask your questions. You need to know and are entitled to know the answers. He might see loads of patients but you are the only you you've got. Always remember that he also puts his pants on one leg at a time. Hugs

Jan

Leroa profile image
Leroa

I know how you feel when it comes to asking your Dr questions. I usually see me Dr at the end of his day, and he's almost always running behind. Thankfully I'm well controlled, so generally my appointment can be brief. My time with him is usually less than 5 minutes. I actually time it. He comes in, asks how I'm feeling, does a quick range of motion examine and tries to run out the door. I almost have to physically stop him. I have a health journal, notes about ups/downs, changes and frequentcy of symptoms. I write my questions on a list there. He's learned after a year of visits that if that book is out he's got some explaining to do. And he does. Like what another responsdent said, they're only human. Ask your questions, ask twice if it's not clear. Your health and your understanding of your health is important. I'm not taking the medicine you're on, so I cannot speak to the side effects. I'm on Plaquenil twice daily.

Good Iuck with your visit. Hopefully you'll get some relief, even it's just some extra peace of mind.

BTW, ❤️ your doggie pic

Radiogirl profile image
Radiogirl in reply to Leroa

Thanks so much for your feedback.

Eiram50 profile image
Eiram50

Chin up and the best of luck- I know you'll be fine.

Marie

Radiogirl profile image
Radiogirl in reply to Eiram50

Thank you, Marie.

Good luck, don't be put off by your doctor's demeanour. You have valid questions and his apparent lack of a bedside manner may just be a professional front. I had a rheumy like that but soon learned that actually he was a great listener ... he just had a way of seizing on the most important things & weeding out my nervous rambling!

I am an annoyingly slow pee-er, especially later in the day. Last thing at night I sometimes nearly fall asleep on the loo. Sorry, it's not a very charming image. I've been like that for years & years so in my case I doubt anything is wrong though you should get it checked out.

Radiogirl profile image
Radiogirl in reply to

Omgosh, that is exactly how my husband, Jim, saw it. Jim said, "this doctor has heard these exact things from a zillion other patients. He zeros in on the main points and calculates his plan silently in his head while he types notes on his laptop and I nervously continue to ramble on."

For example, as I expressed my pee issue, he didn't respond to it at all. To me, it seems like when we are given a medication and we read the "notify your doctor immediately if you experience anything on this list of (scary) side effects, that he would have some kind of response. In my mind I was envisioning the worst possible outcome of my pee problem leading to kidney failure and picturing me on a dyalisis table somewhere. He didn't respond verbally to the issue at all. I know it's crazy to jump to such a unrealistic conclusion, but it would be nice to hear some kind of reassurance, you know?

I'm rambling now!!! lol This is just all so new and it's scary how rapidly things progress.

lovekittys profile image
lovekittys

One piece of advice, when you go to see your rheumatologist and if he is cold and doesn't want to answer questions, find a different doctor, if you can. I had to do that because mine was very cold and did not want to answer my questions. I asked him about the warnings I had heard about Remicade, his answer was your RA will kill you before the meds do. I was in shock, and have since found a new rheumatologist and she is very nice and answers every question, which is nice. Good Luck to you.

Radiogirl profile image
Radiogirl in reply to lovekittys

Oh Lovekittys, I am so sorry you had to endure that. That is just horrible that he would say that. So glad you have a good doctor now.

Just thinking about that statement he made to you haunts me. He is precisely the type of doctor who needs to experience a role reversal with an insensitive doctor treating him to change his unacceptable bedside manner.

Blessings!

Radiogirl profile image
Radiogirl

Hey all! I had a good appointment today with my rheumy. To me, he seemed a little more open and willing to discuss things more since my husband expressed his desire to understand the game plan for my RA. My husband noted to me that he sees the doctor as just very succinct in his answers. He had very high confidence in the doctor even though he just answers our questions in one or two words.

He added Prednisone 5mg to take at night and next week I'll return to the office to pick up a month's supply of Xeljanz samples (they were out of them today.) He said we will know in a month if Xeljanz works for me. If it does we'll see if my insurance will cover it. He also wants me to continue the Sulphasalazine 2x a day. My GP switched me to Cymbalta for depression and said it should help with pain, too. My pain management doctor switched me to Nucynta 100mg 2x a day. Too many drugs imho, but we shall see how it goes.

Thanks all for all the support.

((((Hugs))). :)

lovekittys profile image
lovekittys in reply to Radiogirl

I'm so glad it went well, it's nice to have your husband involved, mine is too, and it helps when they understand what is going on.

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