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Mariepoms
Regular Member


Date Joined Oct 2007
Total Posts : 61
   Posted 10/31/2007 5:24 AM (GMT -7)   
Hi All,
 
I went to a new Rheumatologist two weeks ago after the first Rheumatologist gave me a pat on the head and a nice red lollipop when i left the office...lol.Ok,he didnt really give me a lollipop but i felt like he was treating me like a whiney child.Anyway,went to this new doctor and she did some more blood work.She said I do have Lupus and also Uncontrolled Hypertension.I'm still kinda in denial and shock right now.I knew that something was brewing in me having the joint pain and high ANA but i guess i didnt think i would be diagnosed so quickly.I have read so many people's posts on this forum and most said that it took years to be diagnosed.I was in a fog yesterday and now i have so many questions i would have liked to ask the doctor but just couldnt think clearly yesterday to ask....Was i diagnosed so fast because i have a more aggresive type of Lupus?? She said i am stable right now but does want me to start taking Plaquluil<sp> 200mg once a day and if i tolerate that then up the dose to twice a day.Do i really need to take this medication now? I really feel fine right now.No pains,no swelling that i had 4 weeks ago.I dont feel sick right now.I'm just so confused right now and really dont know what i want to do.My urine was negative and that is what she was most concerned about.Though my Sed rate did go up to 60.Is that terribly high??It went from normal 6 weeks ago,then two weeks later it was 30,then two weeks later it went to 60.
 
My doctor was more concerned with the Blood pressure than the Lupus at this point but i'm more worried about having Lupus and the medication i have to take for it.What have you all experienced from the Plaquluil?? She mentioned that this med can effect the optic nerve? To watch for vision changes and color changes in my vision.Should i seek out another opinion for the medication regiman??
 
Thanks,Fran

AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 10/31/2007 5:41 AM (GMT -7)   
Hey Fran,

Well . . . you've crossed the threshold into the world of Lupus. Part of you is validated by the dx and explanation for your pain and part of you is overwhelmed by the reality of having such an unpredictable disease.

Do I remember right that you are over 40 years old???? Not sure. First . . . I'm so glad you found a doctor who will be proactive for you. The plaquenil is first guns and I would bet that 95% of us take it. Most of us have tried going "off" of our meds while we are feeling better . . . only to land back in trouble again. The plaquenil is actually one of the less risky meds and is well tolerated, without side affects, for most of us. If it did happen to affect the eye, going off of it allows the eye to return to normal. You should see an opthomologist before starting the med so that you have a base-line chart of your normal eye. Then, another exam in 6 months and then one every 6 months to one year, depending on your dose of plaquenil. Your doctor did good starting you on 200mg so your body can adjust before adding the second pill. Sometimes, initially, it does cause a bit of stomach discomfort.

Plaquenil gradually builds in your system, so you won't get the full affect for about 6 months. . . but you will have noticeable benefits in about 2 months. Some people seem to get faster results . . . but you won't be sure because you are feeling ok right now.

I am one who has gone off of it a couple times for extended periods. Then when I end up in another flare, I've tried to work through it w/o the plaq . . . but have found that I really do need to stay on it as a maintenance med even when I'm feeling well.

I'm going to be in the same boat as you . . . going to see new rheumy . . . finally . . . on Nov. 15 and I'm actually feeling pretty well right now . . . so I hope he takes me seriously and we can communicate well. I'm SO glad you found a doctor who is proactive!! You'll be glad too when your next flare hits.

It takes a bit of time to accept the new dx . . . even though you were pretty sure about for a long time. Its a grieving process and this is the best place to help you work through it.

There are lots of us here who have had this for many years and don't have any organ involvement. I am gimpy on occasion but have found great ways to deal with it and hide it and it has taken a long time, but with the help of the kind members here, I've learned to pace myself in a way that staves off massive flares like the one that sent me searching for this forum. Pace, pace, pace. Rest when you need to. Eat healthy. Find a great doctor . . . you are right on track!!

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


Mariepoms
Regular Member


Date Joined Oct 2007
Total Posts : 61
   Posted 10/31/2007 6:27 AM (GMT -7)   
Hi Always Rosie,

I'm 37 years old right now.Now that i think back,I did get vague symptoms of Lupus but it never was bad enough to seek out help.I would be tired and achey for a day or two but it would subside.So i didnt think too much of it.Do you think it's possible that i had Lupus for a while and didnt know it?? This doctor also mentioned that Estrogen affects Lupus and that some woman have less flares after menapause....I have a while to go with going into menapause though.

I think what scares me most is not having control over my own body.It's like this battle is going on inside me and i have no say in how it turns out.

HAve you ever had any eye problems with the meds??

Fran

Mariepoms
Regular Member


Date Joined Oct 2007
Total Posts : 61
   Posted 10/31/2007 6:39 AM (GMT -7)   
Ok,this may sound like a silly question.But the symptoms i had 6 weeks ago...the extreme pain,stiffness and fatique...can i consider that a Flare?That was the very first time i felt so terrible.Every other symptoms i had in the past were so vague and just rest a advil made me feel OK.What i experienced a few weeks ago was way out of the ordinary for me so was that what you call a 'flare'??

Fran

hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 10/31/2007 6:57 AM (GMT -7)   
Fran, it sounds like you found a really good rheumy and that you were able to get some answers. I can usre relate to what you said about feeling overwhelmed. I remember when I first got sick and lupus was mentioned, I felt completely overwhelmed and had so many thoughts and questions that swirled around in my head. There are still times I get overwhelmed and then times when I'm feeling pretty good that I try to convince myself that I don't really have lupus - it's a pretty crazy and wild ride.

It's good that you have so many questions about the meds your doc wants you to take - I think we should all be very aware of what we are putting in our bodies. As far as the plaquenil goes, everything I have read has said that plaquenil is the safest drug we can use to try to treat lupus and to try to keep it from getting worse. It's one of the only ones that doesn't seem "toxic". The potential for eye problems is the biggest issue and I have read that at the dose used to treat lupus, the potential for eye problems is very very small. Just get your eyes checked every six months. The other thing you might notice when you first take it is some stomach upset, so make sure to take it with food. After a few weeks the stomach upset goes away for most people.

You very well might have had a flare a few weeks ago since you felt so awful and now it sounds like you have come out of your flare. You are right about not feeling in control of your body - it can be so frustrating because this disease can be so unpredictable. You can feel okay one day and feel rotten the next day. All we can do is to take care of ourselves the best we can and to take extra care when we are flaring.

Please ask any and all questions you have - it is very overwhelming and a lot to take in. We're here for you through everything.

Take care
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums



AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 10/31/2007 8:27 AM (GMT -7)   
Yes Fran . . . sounds like a flare.

No . . . I haven't had eye trouble. If someone does develop eye problems, they are taken off the plaquenil and something else is prescribed. Sometimes, the docs will get your started with 400 mg/ day (or 200 and ramp up to 400) and then after a few months, if everything is going well, they'll take you down to 200 as long as things are going well.

Yes . . . estrogen does seem to play a big role. So between now and menopause may be interesting. I reached menopause on Oct. 1 (one year since last period) and I have to say that I've been doing better this year. . . but I'm also very aware of my limitations and have respected the pacing benefit. So, I'm not sure that the menopause is such a big factor. I used to push, push, push, physically and I'd wear myself out, thinking I would build more strength . . . I've found out the hard way that doesn't work for us.

Hang around the forum for a while and you'll gain some good insites.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


Gidget^
Regular Member


Date Joined Aug 2007
Total Posts : 171
   Posted 10/31/2007 9:33 AM (GMT -7)   
mariepoms,
In my case it wasn't until I started going through "the change" that my lupus symptoms got worse and my blood tests started rising. I had to have a hysterectomy in 9/06 because of cervical cancer and it was after that the blood tests really went high. Lack of estrogen might be what is making me worse ... but then again it could all be a coincidence!
Good luck!
Gidget^
 
SLE 9/07, FMS '90's, Spinal Stenosis, Osteoarthritis, Sinus Tach, PVC's, Kidney Stones, RLS, Parotid Neurofibroma 8/04, Cervical Cancer 9/06
Clinoril, Toprol XL, Prozac, Zyrtec-D, Zocor, Vitamins B6 & B12, Folic Acid, Loratab ,Percoset, Toradol
 
There is no psychiatrist in the world like a puppy licking your face.
 
 


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 11/1/2007 4:20 AM (GMT -7)   
Hi Fran, I'm sorry to hear you are the newest lupie! It sounds like you got some good answers from some great people here. I have high blood pressure also which started about the same time as the Lupus symptoms did. I beleive it's pretty common. Sounds like your doctor is on top of it though. High PB is serious and you need to take it serious. As for the flare..............The first time actually had a FLARE I felt like I had been hit by a truck. Like others have said here it feels like you have a really bad flu. I had people tell me I cried in my sleep. My legs and feet swelled up like balloons. I could barely walk. It was awful. It lasted a couple of weeks.
I hope you continue to ask questions there are alot of knowledgable people around here to help you out!
hugs
God Bless
Lupus like symptoms, with pbc symptoms,but of course that is subject to change in a moments notice! End Stage COPD w/CHF, Cervical Cancer survivor.  Osteoporosis,osteoarthritis
Prednisone,Plaquanil800mg,vicodin 3x5mg,Evista60mg, Effexor 150mg, HCTZ25/Triamterene37.5mg,Xanax x3 
Only two defining forces have ever offered to die for you: 1. Jesus Christ 2. The American G. I
 
 
 


Mariepoms
Regular Member


Date Joined Oct 2007
Total Posts : 61
   Posted 11/1/2007 5:15 AM (GMT -7)   
Hi All,

Thanks so much for responding.I REALLY appreciate the support.I filled the prescription for the Plaquanil but didnt start taking it yet.I still want to do a little more research about it.I did read it is the least toxic and basically has mostly G.I. side effects.My doctor said in 30 years in practice she NEVER had a patient with eye trouble from the drug.One thing i'm really curious about Plaquanil is this....Is this med slowing down the progression of Lupus or controlling the symptoms?? Also, Do most of you have low white blood counts? Mine was 3.1 and the Lympocytes were low too.I have not had the courage yet to really look at all my labs right now.It's way too overwhelming and because i'm a Nurse i know what they indicate.So i have them here but just cant look at them.I beleive my Rhuematologist mentioned that the Plaquanil helps with the Lymphocyte counts?? But when in the office some of what she was saying was not being processed so i could be wrong.Does anyone know??

I think all of this crap with my symptoms began after some MAJORS stressors and life changes.I had a change in my work shift.I worked 3pm-11pm and then our hospital went 12 hours so i started working 7pm-7am and basically went home and slept only 3-4 hours.Then my dog had to be euthanized and one of my puppies had an eye injury.All of this happened over a 6 week period and then the symptoms began.Like you Okie,i felt like i was hit by a truck.That is exactly what i said to my primary doctor when i started feeling crappy.The weird thing was that the first sign of pain was in my left knee and i was just sitting in my chair at work doing paperwork.I thought i maybe i pulled my knee somehow.But then the pain started to spread ALL OVER.By the end of my shift,i was in agony.I thought it was the flu or something.The pain subsided after a day but i kept my MD appointment anyway.Typically if i feel better i cancell the appointment.Go figure,that is when this rollar coaster ride began and i bet if i cancelled my MD appointment i would have never known i had Lupus.

I want to seek out a support group.Does anyone know where i find one here in New York??I live in Brooklyn but would travel to Manhattan for a support group.I feel i need it and it may help.

Thanks for the support.

Fran

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7018
   Posted 11/1/2007 7:36 PM (GMT -7)   
Hi Fran, Welcome!

Neither my rhuemy, my eye dr, or my PCP have ever had patients who actually developed eye problems from the plaquenil. It is very rare, and most drs these days say every year is often enough to check -- and after 40 or so we all should be having our eyes checked that often anyway.

Plaquenil is basically an anti-malarial, and is pretty much the only medication that is actually known to be disease-altering for lupus. All the other drugs most of us are talking are for some symptom or another, or to handle the side-effect of another medication.

Stress is a well-known trigger for lupus (and most other auto-immune illnesses) -- we may have the disease for years and never know it until some great stress brings it out in us -- we may then return to normal or continue to have symptoms -- no 2 cases are ever the same. Stress was quite definitely a precursor to my lupus.

If you take your plaquenil in the morning with food (but not citrus or citrus juice), you'll be less likely to get any stomach upset. I've been taking plaquenil for about 7 years without any adverse effects.

You might want to check the drug interaction link below - make sure to enter ALL over the counter meds, supplements, herbs, etc as well as prescription drugs.

Check the link to the lupus foundation and find the chapter locator to see if there is a group in your area. Also your rheumy and your local hospital should know of groups.

Take care,

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Cellcept, Prednisone, Trazodone, Fosamax, Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS(4of11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions

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