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Posted By : VLou* - 11/1/2016 5:09 AM
Did anyone find that after so long of initially being started on medication that it had to be increased, due to symptoms coming back/getting worse?

Posted By : Lynnwood - 11/1/2016 6:49 AM
Which medication are you talking about? Some can be increased, some have very specific limits. Others simply stop working and need to be switched with something else.

Common Lupus meds include: Plaquenil, Prednisone, Imuran, Cellcept, MTX, Benylsta, IVIG,
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2000
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

Posted By : VLou* - 11/1/2016 8:17 AM
Hi I'm on 400mg hydroxychloroquine daily.

It worked wonders for the first 6 months and I seem to have gone down hill.

I've not seen the rheumy since April and due to them running behind I won't see her until Dec, and that's after chasing my appointment.

I need to discuss my hair thinning and show her a picture of what might be a butterfly rash, which she's not been aware of before.

I'm seeing the doctor tomorrow for a separate issue. Is it only the rheumy that can prescribe further?

Is it normal to still have off times whilst being on medication?

Thanks

Posted By : Lynnwood - 11/1/2016 9:28 AM
The hydroxychloroquine (Plaquenil) is generally not increased from 400 mg. Your Dr will probably want to add one of these three; Imuran, Cellcept, or MTX.

I wouldn't let anyone except a Rheumy prescribe meds for Lupus -- they are the ONLY Drs fully trained in auto-immune diseases. Other Drs may think they know auto-immune, but the rheumys are the experts. Plus, your rheumy has a treatment plan in mind for you, and it will be completely thrown off track if another Dr tried to manage your Lupus.

And yes, Lupus has it's own "ebb and flow" even when managed by meds.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2000
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

Posted By : VLou* - 11/1/2016 9:55 AM
Thank you very much for your help.

Posted By : Butterflake - 11/1/2016 10:40 AM
Hi VLou*. As far as I know, hydroxychloroquin 200mg taken twice a day is the maximum dose used to treat lupus. It worked a few months for me too, but then my rheumy had to add additional meds. I've remained on the 400mg for over ten years with various other meds added and discontinued. Regardless of the other meds I can still tell if I've forgotten to take my hydroxychloroquin for a few days. It's subtle, but I can tell something's not right. And I take (have taken) lots of other meds while continuing hydroxychloroquin, including the two medication infusions I get IV every month.

I agree with Lynnwood completely that your Rheumy is the only doc who should be treating your lupus and that lupus has it's own ebb and flow (even flares) even while on meds.

It's November today (yea! hopefully cooler weather) and that means December is just a few weeks away. Most of us know first hand what it's like to wait for an appointment when we feel like crap, but sometimes that's our only option. In the mean time, some other things you can do over the counter that I like to provide some relief are: as much rest as you can get, Arthritis Tylenol, Excedrine, and Epsom salts baths (I like Dr. Teals lavender). Feel free ask questions, vent, and please let us know how you're feeling. Love, Butterflake
SLE '05, Sjogren's, Fibro, Raynaud's, major depressive disorder, CVID (Common Variable Immunodeficiency), Hypertension, Osteoporosis, CNS problems, GERD, angina, 1st stage kidney disease. Many meds: better living through chemistry

Posted By : VLou* - 11/1/2016 10:48 AM
Hey thanks Butterflake!

I am so glad summer is over, I am so sun sensitive.

But in the colder weather my arthritis is worse but I'd rather have that than staying in all the time to avoid the sun.

Thanks for the permission to vent!

Sorry you have lots of problems, hope you're managing to stay positive.

You have GERD. Although mine has passed, I went through a stage of regurgitating in my sleep, which wasn't nice.

At what age did your raynaud's start? And was it te same time as your SLE symptoms?

Posted By : couchtater - 11/1/2016 11:16 PM
I still wear my sun protective clothing in the winter. there is still uv rays going on.
Joy
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, diabetes, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

Posted By : VLou* - 11/2/2016 10:03 AM
Yes it sucks in winter too. Not quite as bad for me fortunately.

I saw the doctor this morning. She's going to write to the hospital to ask them to bring my appointment forward and she's doing blood tests (waste of time, as nothing ever shows) after I showed her my hair. As she saw that I've not had any done since end of March.

Posted By : Butterflake - 11/2/2016 1:01 PM
Hi VLou. I hope your doc today is able to get your rheumy appointment moved up. As for the blood draw, it's the best way to monitor changes, so even if nothing has shown in the past something can still change. Love, Butterflake
SLE '05, Sjogren's, Fibro, Raynaud's, major depressive disorder, CVID (Common Variable Immunodeficiency), Hypertension, Osteoporosis, CNS problems, GERD, angina, 1st stage kidney disease. Many meds: better living through chemistry

Posted By : VLou* - 11/2/2016 3:16 PM
OK thanks butterflake.

Posted By : VLou* - 12/25/2016 8:47 AM
Bit of an update.

Saw my rheumy for the first time in 8/9 months and she's really pleased that the plaquenil she started me on back then is giving me my life back.

Also she's referring me to Graham Hughes (the founder of hughes syndrome) at Hammersmith hospital in London. She says they can diagnose more easily. I really do hope it's worth the journey and I can get a label to this.

She's now seen my new pictures of my butterfly rash.

She's also told me to start on daily aspirin. Not sure why she's just mentioned this now as my positive anti-coagulant test was at the start of this year.

I'm hoping that I'm another step closer to a diagnosis.

Hope everyone is managing OK on this Christmas Day.

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