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View Full Version : Six Month Follow Up Tomorrow....what will happen?



SassyAuburn
01-13-2009, 08:22 AM
Tomorrow, I'm seeing my rheumy for my next followup. This is a biggie because it will be after I've been on Plaqenil now for 6 months. He's already indicated I'll be having the blood tests and such. I'm curious about a few things:

1. I know he'll ask me if I've seen an improvement with the medicine. I have more energy and seem to have a bit more "bounce back" to me at the end of the day, but still my joints hurt (some days a lot, some not at all as compared to everyday b4 plaqenil) and I get other smaller symptoms (dry mouth & eyes, headaches, my new one--the shakes in my hands from general body weakness). Will he think the meds are still working since I'm relieved from some of my previous problems?

2. Does Plaquenil adjust the numbers in the blood tests at all? For example, if I had two positive ANA's w/speckled pattern before going on the Plaquenil, is there a chance that the ANA will show negative? Do people with SLE have normal blood numbers in between months of bad ones?

3. Will he check all the same things as before? The ones that were funky the first time were the ANA, C3, C4, Iron Count and I can't remember the test but I know the result was above 40.

I guess that's all I'm wondering. I have this terrible feeling, after 2-3 years of not knowing what was wrong that they will actually do tests now, have most/all come back normal and my rheumy say "Oh, guess you are fine now....have a great life." because I know I'm still not.

Any "seasoned" info would be helpful. Thanks!

KathyW1958
01-13-2009, 09:21 AM
Hi Sassy,
I don't think that you have to worry about the doctor sending you away and saying have a good life. I think that it sounds like you may have Sjogrens with the Lupus and you need to ask him about Restasis Eye drops for your eyes. He may have to add Imuran to stop the pain in the joints. I hope that this helps.

Hugs,
Kathy

Saysusie
01-13-2009, 11:38 AM
Sassy;
I agree, the chances are extremely small that your doctor will tell you to have good luck and get on with your life. The whole purpose of the six months review is to see how well the medications are working, if any of the dosages need to be changed, if new medications need to be prescribed or different medications tried, to see if new symptoms have appeared and what to do about them, to check blood work to see how the medications have helped and to gauge the activity of your disease.
You want your numbers to get closer to normal. Doing so means that the meds are working. If your numbers are better, your doctor may leave things as they are or may make a few changes. The chances are very great that you will be asked to come back in another six months to, once again, go over all of the above.
What you want is to get to a point where your meds are working to such an extent that you need only see your doctor once/year (if that often) and you can be managed by your primary care physician for all other matters. I, for example, only see my rheumy once a year - unless something occurs with me prior to my regular yearly visit!
So, do not stress about these bi-yearly visits, they are a way to make sure that you are doing OK!

Peace and Blessings
Saysusie

SassyAuburn
01-13-2009, 03:27 PM
Thanks ladies. I appreciate your insight. I've got my questions for him all planned out, but it sounds like if my numbers come back closer to normal, then my meds are doing well. I'm actually quite pleased since I'm not taking much at all. Since seeing him, I've pretty much only been prescribed the Plaquenil for the all over stuff and Depakote to help control my headaches.He doesn't know about the Depakote so I'll be interested if he thinks this is really necessary or if, because of the SLE, it wouldn't make much difference if I'm on it or not.

Kathy, in regards to the Sjogrens, when my eyes first became dry over a year ago, it was THE first thing my eye doctor tested me for. Long before I had a positive ANA. Even though it came back negative, he put me on Restasis then. Since being on the Plaquenil, I've noticed that has gotten better. I wish the dry mouth would!!! When my rheumy did his barrage of tests on me, he checked again for the Sjorgens and once again, it was negative.

I'm glad to hear that if my numbers are better, I'll have to see him less (hopefully) Since I first saw him in July, I have seen him three times again since. I'm guessing that's just because I'm a "newbie" to all this. I'll let you know how it goes!

Saysusie
01-13-2009, 06:14 PM
Yes, keep us posted. You and your doctor will probably make a joint decision about how often you need to see him. I imagine that he will want to see you more often until you are at the point where your symptoms are manageable. Getting the right regimen that helps you to manage your symptoms may take some time & may require several changes, especially given the fact that Lupus is a disease that changes in each of us. Hang in there with your doctor so that, together, you both can find just the right regimen for you.

Peace and Blessings
Saysusie

SassyAuburn
01-14-2009, 03:54 PM
Hey all....

Just wanted to let you know that my 6 month visit with my rheumy went well. Him and my neurologist are about to butt heads, but I'm staying out of that one. I discovered today my rheumy is a "no holds barred" kind of doctor. He'll go to the mattresses for what he thinks is best for his patients. My neurologist instructed me not to take any pain meds, including nsaids AND tylenol, when I have any type if ache... including a headache. "Bite the bullet" he told me, as even a simple tylenol will trigger a bigger migraine. My rheumy is sending him a note saying "I do not want her on nsaids or prednisone if at all possible due to her diabetes. All that is left to work with right now is tylenol. When she wakes up at 3am with joint pain and she can't find a bullet, would you prefer she take some tylenol or have your exchange call you at home for advice?" I laughed. I'm glad I've got him as a doctor. (He's easy on the eyes too...)

He drew 7 bottles of blood and wanted a urine sample, which didn't happen. They said no biggie on that, and if the bloods come back off, they'll grab one then. I was also told to fatten up. I have lost 6 lbs since my last visit, 11 total since I first saw him in July. He said I have three months to put on something or he's going to send me for some stomach tests. Plus, I need to put on more weight because if my blood tests come back "off", he can't increase my dosages of my meds due to my size. I've ALWAYS been thin, that's natural for me. But I've gone from a comfortable thin to an uncomfortable skinny... even for me.

Have been a diabetic for over 28 years has just instilled to eat fresh and healthy all the time. But now I've got to enjoy a heavy cream laced milk shake 3x a day with my healthy meals. Yeah yeah...I know... poor me.

I'll let you know what my bloods come back. Will take about a week.

sits_inthe_corner
01-14-2009, 05:43 PM
hugs SassyAuburn

Glad to hear your rheumy has your back! Yah for him.

Danica01
01-15-2009, 01:36 AM
It is refreshing to hear a story about a good doctor :!: I am so happy you have him....and can look at him, lol! It takes some of us years to find a great doctor but once you find one, life is so much easier and managing our disease is a bit easier too. I am glad everything went as well as it could and hopefully your blood comes back ok. EAT :!: I know it is so hard to eat at times but sometimes we have to force it in order to get our bodies up to a functioning state. Hang in there and keep us posted on what the doc finds out and don't worry if you have to go to a tummy doctor......their not that bad :wink:

SassyAuburn
01-15-2009, 10:05 AM
Danica,

You said EAT (which I have, non stop since last night...ugh) then said

I know it is so hard to eat at times

Do many lupus patients have problems with appetite? Some days I could eat a rack of ribs with the cole slaw & fries... others I can barely eat 5 crackers without feeling like I'm going to hurl. Plus, within the past month my heartburn, which wasn't an issue, suddenly is. Can you actually get a "flare" in your tum-tum with lupus? Where it almost feels like a stomach bug?

Knees, joints, headaches, red face, itchies, dry eyes... that stuff I'm used to. Tummy things though are new to me.

Danica01
01-16-2009, 05:09 PM
Yes, there are times when I will feel hungry ALL the time and can eat anything and everything in front of me :!: Then, there are other times when I feel like if I even look at food I am going to be sick. It seems like it is this constant up and down with our systems. My tummy will hurt so bad to the touch that all I want to do is lay on my side :( It is no fun! Let me know how you are doing and how the food intake is going :wink:

SassyAuburn
01-16-2009, 07:26 PM
Yesterday, food was a bit better, but only by force. I drank most of my foods for the day. Lots of milk shakes, smoothies, soft things like cottage cheese, chicken noodle soup, etc. That was way different for me because I very seldom dairy products.

Now I know why.....

Last night was HELL on my gut. I think I put back on 5 lbs in gas alone. And this morning? Without being unfeminine, let's just say no one wanted to be within 2 feet of me. I picked up some sherbet instead of ice cream today to cut back on the milk products a bit. I'm thinking it might be the lactose, but we'll see. There has been a stomach bug around and, well, with my paper thin resistance, I may have just got a touch of it.

I might start taking my Marinol again for appetite. Ever hear of it? It's actually a prescription form of THC (the stuff in weed that gives you the munchies). They prescribe it often for chemo patients who can't eat. They gave it to me last year and it worked good. Thank goodness my insurance pays for it. The recommended dose is one pill before each meal. That's 3 pills x 30 days. 90 pills a bottle. Cost? $8 a pill. $720 worth of legalized, pill-form dope. I could make a comment there, but I won't. :shock:

I'm getting weighed before bed. We'll see how it goes.

SassyAuburn
01-23-2009, 10:01 PM
For all who are following this thread, here's an update:

I got the blood test results back today from my 6-month followup. I guess it was good news. My rheumy p.a. called (he's off on a skiing trip...glad to hear HIS knees are working good!) and told me everything looked "okay". When I pressed as to changes she said, "Well everything that was off last time... ANA, Iron, C3 & C4 Compliments... are still off, but not any worse. And nothing new has appeared like kidney problems, so whatever we're doing we'll keep doing. It seems to be holding things which is what we want. See you in three months."

I guess I should be happy. The Plaquenil is obviously is keeping my numbers at hold which is what we want, right? I'm resting the way I should. I'm gaining weight and eating and sleeping better. I have more energy and mentally I feel more at ease.

So why, when I heard the results of my tests, did I feel like someone knocked the wind out of me and I wanted to cry? Did I really think I was going to get the, "Hey! You're doing great! Whatever you are doing, keep it up!" line? I guess all this is still pretty new to me. I'll just have to take even the unchanges as a success.

Anyone else going through this?

sits_inthe_corner
01-24-2009, 01:45 AM
Hugs SassyAuburn

I've stopped having expectations with my rheumy. She's an idiot. When you press her for more information she clams up and gives you a "just do as you're told" look.

I never feel like I know what's going on or that she gives a rat's "ass.

So yes, I think it's common to walk away feeling let down even if the news is good.

Sounds like your meds are working for you so YAH! Hope you continue to improve.