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Rheumy appt


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#1 white gloves

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Posted 17 August 2008 - 08:54 AM

Hello there--

First of all I want to again thank everyone for their prior responses to my initial post. I was in a horrible state that week and this site really did help me to calm down and take a deep breath about it all and also helped me to maintain better emotionally from then until now. That sure does mean a lot to me and once I'm done with this post I will donate, because all in all regardless of diagnosis, having this site and the wonderful people here helped tremendously. Even if just to come on at 2am and browse through the info and messages.

Ive been okay this past month but still in quite a bit of discomfort (ok pain, but bit of discomfort sounds not so bad). Anyway, went to Rheumatologist Friday afternoon. I like her. She is older and I was grateful because she's probably seen quite a bit in her day (lol that makes her sound really old, but you know what I mean). I typed a brief 20 year history to accompany the initial paperwork. Long story short, she seemed to think I was having a major lupus flare. She did not rule out CREST and ordered more blood work. The blood work my pc ordered showed elevated rheumatologist factor, something I was told way back when I was diagnosed with Hashimotos. Also elevated liver enzymes, anion gap and trig (which she said could be lupus related) as well as my two bouts of meningitis within 1.5 years about 15 years ago. She asked if doctors ever told me the cause of the meningitis, I replied "bad luck" was all I was told, she shook her head, and said most likely lupus. She prescribed prednisone 5mg and Plaquenil 200 mg twice/day. I started the pred Friday night and took first Plaquenil about 15 minutes ago. I have a follow up appointment with her in 3 weeks.

I know I will get straight answers here. What can I expect side effect wise? Dr. told me Plaq would take a month to kick in. I told her I didn't do well on prednisone (side effects) and she said this was low dose, the doses I've had for asthma before were higher, and I should do okay with this. Well, you know at this point it doesn't matter, I will take it, just want to know what to expect.

Thanks!

Take good care, WG

PS I have done my best not to swear or mention any brand names in this post : )

#2 Sheryl

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Posted 17 August 2008 - 09:37 AM

White gloves, plaquenil can take up to 6 months before you start to notice. Some people can tell a difference after the 3rd month. I hope you can tell the difference in one month. I hope you start to get rid of some of your pain. Of course the prednisone should work a bit to get your body through the rough spots. Keep us informed on how you feel the plaquenil has worked for you, sometime in the next several months.
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#3 smac0719

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Posted 17 August 2008 - 10:17 AM

WG,

I am glad you finally had your appt. with the rhuemo and that it was a good visit. I am on Plaquenil and as Sheryl said, it did take a few months for me to notice it working. I have been on 400mg (200 2xdaily) since January 07. They do recommend a regular eye exam when taking Plaquenil long term. I hope that you see some improvement soon!
I may have Scleroderma, but Scleroderma doesn't have me!

#4 Sweet

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Posted 17 August 2008 - 11:11 AM

Hi WG,

I'm so glad she started you on Plaquenil. It's been so helpful for me. It took about 2 months to kick in for me. At first I had problems with nausea, and quite a bit of hair loss, but I adjusted and don't have either problem anymore. I do take it with food however or I can get a bit dizzy. It's helped a lot with my fatigue and pain. I tried to go off it once or rather I should say I try to cut the dose in half. Within 2 days I was in so much pain I couldn't stand it, and once I started taking the 400 mg daily again it took another month to receive the full benefits. So stick with it! The prednisone is a fairly low dose so you may not experience any side effects. However, everyone is different.

I'm so glad you found a doctor you like and one that seems like she'll work for you! Keep up the good work!
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#5 Amanda Thorpe

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Posted 17 August 2008 - 11:56 AM

White Gloves,

I don't have experience of the meds recommended but am so pleased and relieved for you that you have been given some answers and treatment. :lol:

Take care

Amanda
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#6 Snowbird

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Posted 17 August 2008 - 12:07 PM

Hi White Gloves

Glad to hear your rheumatologist appointment went well. You'll have to keep us updated on your test results when you hear back. Hope the med's kick in and you start feeling better really soon! :)
Sending good wishes your way!

#7 Purr

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Posted 17 August 2008 - 12:40 PM

Hi WG,

Sounds like you've found a good rheumatologist. I wish you the best with your new medication. I think the amount of time it takes to start working depends on the individual, so just know that sooner or later (hopefully sooner) it's going to kick in. :)

Take care,
Christy
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#8 Helen

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Posted 17 August 2008 - 04:44 PM

Hi WG
I have been on Plaquenil for about 10 months now and I feel so much better...lots more energy. I didn't notice any side effects...I just make sure I take them with food. Have also been on 5mg prednisone for quite a while. Few weeks ago I cut it down to 4mg but my feet were so sore I could hardly walk, so looks like I will have to stick with 5mg. I told my rheumatologist I didn't like being on Prednisone and he just said you have to think of quality of life...so looks like I'm stuck with it. :(
Hope they give you some relief.

Helen

#9 barefut

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Posted 17 August 2008 - 07:35 PM

Hello WG~

I'm a little late here - sorry. Wanted to welcome you and say "Hi". You did well on the not swearing or using brand names :lol: That was hard for me at first too :rolleyes: (sometimes still is)

I am sorry you've been having a hard time but glad you have found ISN and and are also on new meds.

I was also prescribed 5mg pred. and with doctor's advice went up to 10 when I was having a hard time getting up for work and getting through a day. I weaned completely off for the month of April but I was not good, so back on and up to 10. I am going to be tapering back down to 5mg soon as I get my 1mg tablets refilled.

I hope you feel better soon.

Hang in there and good to meet you :)

#10 Peggy

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Posted 18 August 2008 - 11:16 AM

I'm so glad you liked your doctor. That's half the battle ........ the relationship we have with our doctor and how well they listen to us and how we relate to them. I don't take the meds you do and I hope that you will see some improvements. Good luck and please keep us updated on how you are doing. You have come to the right place to vent and to get good and caring advice from some really special people. I don't know what I'd do without this site.

Warm hugs,

Peggy

#11 Debbie C

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Posted 18 August 2008 - 12:30 PM

I have been reading the posts on Plaquenil for pain. I have been on this since 1997, but my dermatologist prescribed it for the itchiness for a better word for my lupus. When I would get stressed I would get red itchy blotches on my neck and arms. I do see an eye doctor once a year. From what my doctor told me that being on Plaquenil for an extended period of time can leave deposits on the back of your eyes so seeing your eye doctor yearly is a good thing. I have yet to have them find these "deposits". If they prescribed this for the pain, I hope it works for you. It does nothing for me with my pain, they have me on anti inflammatories for that. My family always jokes about my "drug store" of pills that I take every day. Hope some of my information helps you!

Take care,

Debbie :)

#12 razz

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Posted 18 August 2008 - 12:57 PM

White gloves,

I've never been on plaquenil but I did take prednisone for a short while. It sounds like plaquenil has worked wonders for some. I hope it does the same for you. Also wanted to say welcome!


Hugs,
Razz
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#13 white gloves

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Posted 18 August 2008 - 06:27 PM

Thanks to all for your input. I am committed to taking the meds, which is a big step for me. I have been good so far, though haven't noticed any difference, LOL only been a few days I know, and apparently I have a ways to go. I will stick with it. Thanks again! : ) You are all so wonderful here!

Take good care, WG

#14 smurfette

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Posted 19 August 2008 - 06:35 AM

Welcome White Gloves! I just want to say that you will find love and support here for anything you need. I have some experience with prednisone- but only for a very short time. If you have found a doctor you can work with and trust then stick with the med regimen and give it time. From what I read you will notice changes in months not days, but the changes seem to be worth putting in the time. Good luck and I hope that you feel better!
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