plaquinal question

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Lisabeans
Regular Member


Date Joined Jun 2015
Total Posts : 146
   Posted 9/3/2015 10:40 AM (GMT -6)   
Good morning. I don't post often but I do read everyday. This group is so supportive and informative. Thank you in advance for taking the time out to read this.

I know everyone is different. I have ulcerative colitis for 10 years now. It is in remission. I started developing joint and muscle pains real extreme this past winter. Had a positive ana but all other tests have been fine. I did see a rheumy in May. We tried prenidsone for 3 weeks. Felt wonderful. We decided that it was definitely inflammatory. He is calling it inflamatory antropathy.

I started plaquinal in June. I know it takes time to work being tissue based. I am finally starting to feel some pain relief. However now my pain burns a lot more especially in the sun. I don't get rashes but I do have some cuts or scabs on my scalp. I do lose hair - not extremely like a chemo patient. I also have noticed my energy levels have totally decreased. Should I be getting worse symptoms waiting for the plaquinal to work? My next appointment is in October.

Thanks in advance.

Lisa
Lisa
Ulcerative Colitis (remission) on lilada
Reflux on dexilant
Recently low positive ana and now on plaquinal

Mrs. Brady
Regular Member


Date Joined Feb 2015
Total Posts : 242
   Posted 9/3/2015 11:10 AM (GMT -6)   
Hi Lisa,

I received my SLE diagnosis yesterday and started Plaquenil yesterday. My rheumy stated it is a very slow acting drug and can take up to 6 months. I am currently taking 15 mg of pred and doing a 5 mg taper per week and will likely continue on the pred until the Plaquenil kicks in. I also have UC which fortunately is in remission. Have you had any GI issues with the Plaquenil? I was reluctant to try it but after researching think it's my best option. The pred is definitely a life saver and if you are having issues perhaps you should consider going back on pred until the meds fully kick in. I have also read that sun exposure should be avoided with lupus as it can make the symptoms worse. I don't notice, yet, that I have any issues with the sun but have been using SPF 50 - 70 when I know I will be outdoors. Wish I could give you more advice but I am pretty new to this diagnosis and still trying to take it all in.

Lisabeans
Regular Member


Date Joined Jun 2015
Total Posts : 146
   Posted 9/3/2015 11:16 AM (GMT -6)   
Thanks Mrs. Brady,

Sorry you are going through this too. I have not had any gi issues on the meds so far. I did 2 different rounds of the pred so I could vacation with my family and have a great time. I am so not used to feeling this way. My dh seems to think the rhemy said the plaquinal will work in 2-3 months. At least we have a great support group here to get us through.
Lisa
Ulcerative Colitis (remission) on lilada
Reflux on dexilant
Recently low positive ana and now on plaquinal

Mrs. Brady
Regular Member


Date Joined Feb 2015
Total Posts : 242
   Posted 9/3/2015 11:24 AM (GMT -6)   
I did the same thing with the pred so I could enjoy my vacation. I was totally fine on vacation and when I got home had a horrible flare where I was walking like an 80 year old and couldn't pour myself a cup of coffee! I am so not used to this either. I am extremely independent and hate asking anyone for help but I have had to. I work full time and between my husband and I have six kids. Some days I get so depressed that I can't stand myself but in reading the posts out here I feel better, it could be worse, right? The other thing, when you say burning do you mean in your joints? I have burning pain in the joint in my foot but the joint pain in the my fingers and wrists is different - they get really stiff and I can't bend them without excruciating pain. I'm sure you are doing this, but I'll throw it out there - warm baths with Epsom salts or hot showers. It helps to get my joints moving and seems to alleviate the pain - even if it's short term. Hope you feel better soon!

Lisabeans
Regular Member


Date Joined Jun 2015
Total Posts : 146
   Posted 9/3/2015 11:33 AM (GMT -6)   
Wow. 6 kids! i have 4. Thankfully they have been real helpful and try to understand as much as they can.I also work and teach religion classes for the first holy communion kids. Hot showers do help. I just hate feeling so weak and tired all the time.
Lisa
Ulcerative Colitis (remission) on lilada
Reflux on dexilant
Recently low positive ana and now on plaquinal

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 9/3/2015 11:48 AM (GMT -6)   
Hi there,

Plaquenil generally takes 2-3 months before you notice any effects. However, lots of times we don't think it is doing anything, but then stopping for a week or so shows that it really is helping. (Don't test this out, you need to keep taking it to build up to therapeutic levels.)

It is entirely possible that your symptoms are increasing due to increased disease activity -- just think how much worse it would be if you were not taking Plaquenil!! Sun sensitivity, major fatigue, hair loss, and even burning joints are all common Lupus symptoms.

Since you have noticed your symptoms are increasing, I would suggest you try to see your rheumy sooner rather than later. There are what I think of as 3 levels of treatments.

1) Plaquenil & Prednisone.
2) Imuran, Cellcept, or MTX. These are tried one at a time, it is not known why one will work for patient X and not patient Y, they are trial-and-error to see what helps you. These are in addition to Plaquenil & Prednisone, although usually the prednisone is cut back while trying these.
3) New and much more serious approaches are Benylsta and IVIG.

It may be time to do something in addition to the Plaquenil.

Let us know how it goes!
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

Lisabeans
Regular Member


Date Joined Jun 2015
Total Posts : 146
   Posted 9/3/2015 11:52 AM (GMT -6)   
Thanks Lynwood. I guess I have to make a phone call or 20!
Lisa
Ulcerative Colitis (remission) on lilada
Reflux on dexilant
Recently low positive ana and now on plaquinal

Mrs. Brady
Regular Member


Date Joined Feb 2015
Total Posts : 242
   Posted 9/3/2015 11:56 AM (GMT -6)   
Yes, the tiredness gets old and so does the weakness - I hate when I can't open a jar but like you my kids and husband have been helpful and understanding. I remember thinking UC was bad but holy cow I think I'd take that over this!

Here is some information I found on planquenil:

Patients taking plaquenil may begin to notice improvement after one or two months. It can take up to six months before full benefits of plaquenil are realized.

Hang in there!

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 9/3/2015 4:05 PM (GMT -6)   
You can get sun protective clothing so you don't have to keep rubbing lotion everywhere all the time. I buy mine online at coolibar.com. They are very lightweight.
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! :))
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