Plaquenil---important info please read!

[Cherise]

Hi, I haven't been on here for a while.  I started on plaquenil and it really helped.  I felt an immediate decrease in my inflammation, especially in my lungs.  My labs completely leveled out.  My wbc was low and went back to normal and my differentials all balanced out.  I have been reading about sjogrens and I am a little confused though.  It is so similar to lupus, but it isn't lupus.  How do they know that it isn't lupus?  I had a flare up and went through a whole cycle of symptoms, but it started out with sores on my arms that looked like the lupus rash.  They lasted several weeks and left a faint scar.  Does this happen with sjogrens?  Also, now I have hand tremors and have to go to a neurologist.  I don't know if it is from the lyrica I'm taking or my advair inhaler.  I am on so many medications at this point, I don't know how they can tell what is meds and what is my nerves being affected.  Should I be concerned?

[irish]

Cherise, Sjogrens can have skin rashes also, and yes, the docs have a terrible time sorting out the Sjogrens and the lupus. The rash with the scarring is something that needs to be sorted out I would think. It might be that you need to get Dermatology involved also. I had bad rashes on my arms about 3-4 different times that ended up needing to be treated with antibiotic plus cortisone cream and then the last time needed cortisone tablets plus stuff for fungus infections. My dermatologist did a skin biopsy at the time of the outbreak and I got a diagnosis of Bullous Pemphigoid which is another autoimmune skin problem. I did have a little bit of scarring from that rash.

Lupus can also just affect the skin and that rash can have scarring with it also. Really hard to sort all this stuff out and needs all these doctor appointments. Good luck! Irish

[irish]

Cherise, What kind of low white count do you have.  I have severely low t-cells and low normal IgG subclass 1 and 3. Doc thinks it is hereditary. I am concerned that this will cause issues with the plaquenil. My new rheumy was ok but I seriously doubt if he is 1/4th as smart as my immunologist. I would tend to agree with my immunologist first. Thanks. Irish

[tired in texas]

Get the plugs put in...it's not a big deal...you will know very quickly if it will work...I could tell a huge difference in a day

[wen.uk]

Hi Irish
Glad you have got the opportunity to try Plaquenil - only time will tell if it suits you.

I started out on 200mg twice daily last year but after 3 months dropped down to just once a day as I was feeling nauseous and generally off colour.  However, the beginning of the year my tiredness increased so I've upped the dose again.  Must say it does seem to improve things, but a massive plus for me is that my eyes are nowhere near as dry since starting the drug - so much so that I can even tolerate the ocasional contact lens wear for special occasions which would have been impossible before starting on it.

Just hope it works for you - I'll keep my fingers crossed.

[irish]

wen, I have not had a chance to talk with my immunologist yet. I talked with the nurse when I was up for my IVIG infusion this month and she said that I should just wait and talk to him when I see him in June. It is not an emergency and I am definitely not as ill as so many of his patients. Time will tell what happens. Right now I am waiting on another sputum culture as I have a sinus and lung infection that is so weird. I wonder if I have a weird bacteria again and I know I have a yeast infection. If the culture was not enough to grow anything I will be going to the doctor again tomorrow. Oh joy!!! It will be a long night I am afraid. Irish

[ejvisneskie]

when I was first diagnosed in 1999 my rhuemy told me to take this pill (plaquenill) I said 0k not knowing what sjogrens really was.  I don't  remember taking smaller doses to get into my system I just took two pills a day.  I do remember having alot more pain like my knees and my ankles swelling and going up and down the stairs on my bum.  At that time I was going through a really stressfull time with my pending divorce and my children very young. I also remember having joint issues.  My eyes were really gritty and dry I went to the school of optometry and they promised me plugs in my eyes.  I finally had tears but not when I cried.  A few years went by and I thought that I could do without the pills.  I think I was fine for a year and then the pain started again.  My rhumey put me on the methotrexeate and blood work every month.  I didn't want to be on the methotrexeate I was scared of something else going wrong.  well I have been on and off of the methotrexeate for about a year now and boy am I paying for it  I am in so much pain that I am sick of myself.  The other reason I went off the plaquenill was because I convinced myself that the plaquenill caused my dry eyes and mouth  because I did not have any symptoms before starting the plaquenill.  I am really mixed up right now.  I am contemplating going back on the plaquenill to see if that helps me.  I blame myself for the pain because if I would take the medication like the doctor said I should I may be OK.  And then there is the issue of weight gain since I started on the methotrexeate I have gained 12-15 pounds all in the belly and hips area  and that adds to my frustration.  I really need a quick fix and I know there is none.  Now the only thing that is really helping me is my best friend Ibuprofen I take 4 pills(800mg) in the morning to get my day going and then I take the same in the evening because I can't stand the pain when I am trying to sleep even the covers are too heavy to pull up over my shoulders.  I have to make an appointment with my rheumy but that is a day off work he is an hour and a half away.

[irish]

ejvisneskie, Most docs start Prednisone to get peoples symptoms under control and I would think that is what you need to do as it sounds like you are spiraling out of control. Then they start the Plaquenil. The plaquenil takes a long time to kick in but when you sympoms are better the doc would probably taper your prednisone dosage down. The goal will be to get off of the prednisone and just be on the Plaquenil.

The fact that you had the dry eyes when on the plaquenil was probably due to the fact that the med had not kicked in yet and your sjogrens symptoms had gotten worse. The plaquenil doesn't cure but it inhibits a lot of the inflammatory stuff that affects our body. The joints and muscles are usually helped and many people say that the fatigue is better on the plaquenil. The vision needs to be monitored when on plaquenil but any problems is very rare because of the low doses people are put on. Generally an eye exam is needed 1-3 times a year depending on the doctor. Also, the vision problems seem to be reversible when the medication is stopped.

If you are having dry eye problems Restasis is the drop that is prescribed for sjogrens. It does help, but again, it takes time to kick in as in several months. The doc should also order prednisone eye drops to take prior to putting the Restasis in for a certain number of days. This helps decrease the inflammation and helps decrease the burning. The reason our eyes burn when we use the Restasis is because our eyes are so dry and irritated. We also need to use regular drops like Refresh abaut 15 minutes before we put the restasis in and 15 minutes after to help with the burning. The burning gets better as the eyes heal.

Also, many people have been on Methotrexate with good results. The liver function has to be checked every few months and folic acid is also usually given as it helps to decrease the nausea and yukky feeling that can occur. Good luck. Irish

[JannaLee]

I have been taking 400mg Plaquenil daily for about a month and a week. 

Of course no one mentioned to split the dose between morning and evening or to start slowly and wean myself on...

so I have the gas, bloating, digestive upset, etc. but will keep on with it because the body aches and fatigue are so debilitating!

Honestly, I don't know what I will do if this doesn't help me.  And by "help me" I mean STOP MY TEETH FROM CHIPPING OFF TOO!!

I feel like I'm in one of those nightmares where you find yourself naked at work (insert crumbling teeth, intense joint pain and fatigue for naked) and wishing I could just wake up.

[irish]

janna,Sorry to hear that you are feeling so poorly. Have you checked with your rheumy about dividing your dose and take 200 morning and 200 at supper or so? I know many of the people on this site have had trouble with the one time a day dosing and gone to the 2 times a day.

I have gone through the teeth thing and ended up having all my teeth pulled. It was such a relief as I spent to much time and money at the dentist. I sure had to fight to get them pulled though. I really think that people with sjogrens should have an easier time getting their teeth pulled. All these bad teeth trap the bacteria and make the chance of infection so much greater.

Hope you can hang in there with the plaquenil as so many people have had improvement in their health. Good luck. irish