Plaquenil

[TerriJ]

I've been diagnosed with SJS and fibro.  My Anti Ro was 448.  Tests for inflammation were not really bad.  I have a lot of CNS symptoms and pain in gut and even spasms in my throat.  The neuro did a small fiber nerve biopsy and it was normal, so they said my CNS is just irritated.  I'm seeing an otolaryngologist for the throat issues.  The only extreme dryness I have are my eyes.  I have had some skin rashes, but they ruled out vasculitis.  My b-12 was a bit low so I take sub-lingual drops and I also take liquid vitamin d.  D level was right at the low side of normal.

Anyway,I started taking Plaquenil about 4 wks. ago.  I went on it slowly starting with 1/2 pill for a week and working up to 1 pill a day for a week.  I made sure to take it with food or after eating a meal.  By the end of the second week my stomach hurt so bad I couldn't take it anymore and stopped the Plaquenil.  It took several days, but the pain improved.  I already have a very sensitive stomach.  I take a low dose of Tramadol, 75 mg. a day split into 3 doses and I'm sure that causes some gastric issues too, but it really takes the edge off of the muscle pain.  Has anyone else had stomach pain with Plaquenil?  Were you ever able to take it?  Also, does everyone have to take 400 mg. a day to get results?  Can you take 100mg or 200mg and see improvement?  I'm very sensitive to meds and usually a lower dose works for me.  I'm feeling pretty bummed out.  I had high hopes that Plaquenil would help me, especially with the fatigue. I'm also feeling like this is never going to improve.  It's been going on for over a year now.  I keep reading about flares.  Is this a permanent flare?  There has not been on day in the past year that I have felt "normal."  Not one day!

I sure appreciate hearing about any of your experiences. 

[Scottietottie]

Hi Terri 

I'm really sorry you couldn't tolerate the Plaquenil. There have been others who have had the same problem. I believe some people have gone on to try another kind of anti-malarial, because that is what Plaquenil is - but I can't for the life of me think of the other names/names.

I'd definitely go back to your doc with this one and see if they can suggest another choice.

Plaquenil certainly helped nmy energy levels and also brain fog, though in my case it didn't do much for aches and pains. 200 a day didn't do it for me. I needed 400 and it took several months to work. I'm heavier than I should be though and my stomach seems to tolerate most things, so I'm lucky.

Please do ask your doc. Keep us posted.

Take care - Scottie 

[TerriJ]

I just came back to post that I am taking Prevacid and there was a response (((Scottie))).  It barely touches my heartburn.  The otolaryngologist said that SJS can cause problems with the nerves in the esophagus or something like that.  I have plenty of saliva, so that's not the trouble.

Maybe I could give the Plaquenil in an injection and bypass my gut!  lol!!!   I will ask the rheumatologist about about any other malaria drugs.  They seem to think that Plaquenil only helps with joint pain and maybe fatigue.  I wish they would read this board and see that, depending on the person, it can help in other ways too.  The only thing the neuro offered me for my symptoms is Neurontin.  I'm already dizzy, etc.  Just what I need another drug with side affects.  I suppose I should have given it a try, but I opted not to.

Terri

[Rhonda]

I was just ordered Plaquenil today- 200 mg twice daily.  I sure hope it helps me with the SS symptoms.  I am feeling miserable but I am kind of nervous about the Plaquenil's side effects.  I have a sensitive stomach so the rheumatologist ordered Protonix too.  He wants me to see the opthalmologist before I start the Plaquenil.  I guess eventually I'll get settled into this new routine. 

It makes me depressed to think I am 49 years old and have a long time to feel this way. 

[Scottietottie]

Hi Rhonda 

Break yourself into the Plaquenil slowly. Don't take 400 staraight off - not even 200 straight off - and always take with food. Cut the pills in half and start with one half every other day for a week. Then 1 whole every other day for a week. The 1 whole and 1 1/2 on alternate days - you get the picture?  My rheumy actually told me to work it that way.

I'm lucky - I've had no side effects from Plaq at all - am on 400mg per day and have been for 5 years now. It's lessened fatigue and brain fog as far as i'm concerned and has apparently made my blood tests normal now too.

Good luck with it.

Take care - Scottie 

[lynnmarie219]

Hi Terri!

I agree...its a good plan to talk to your rheumy about other possible medications in stead of plaquenil or maybe just a different dose of plaquenil to start out with again!

Rhonda...Ive been on 400 mg a day of plaquenil for almost 5 years now too...no problems and no major side effects.

Good luck to both of you!

[Rhonda]

Thank you.  I will certainly do the titrated dose method to take the Plaquenil.  I am willing to try anything to make this pain and brain fog go away!  I feel like an idiot some days because I do some really stupid things! Some days, I find it hard to work because the brain fog is so bad.  Does it every go away?

[watoozie]

I've been on 400mg Plaquenil for 4 years and it has helped me so much.  I haven't had any problems or side affects.  I always take one with breakfast and one with supper.  I wouldn't want to be without it, I felt so bad before I was diagnosed.

[TerriJ]

Rhonda,  I'm 49 too!  lol  I feel like a truck ran over me too.  What is Protonix?  I am taking Prevacid, but when my stomach hurt with the Plaquenil it didn't help at all.  I did get a baseline exam from my ophthalmologist, so that is a good idea.  Without the Tramadol I would be in pain every day.  I have also been prescribed Provigil and it has helped a lot with the brain fog.  It really bothers me to be on these drugs.  In fact I can't believe this is happening a lot of times.  I have to function though, so that's my reality right now.  As far as getting better, there are others here who have been dealing with this a lot longer than me.  I have been feeling this way for a year now.  I've also been diagnosed with fibro.  I'm doing all I can to take care of myself.  I guess I'm waiting for that day when I will wake up and I'll feel like myself again, but maybe this is me now?  I don't know if that makes sense?

Scottie,  Maybe I should try starting even slower on the Plaquenil.  I started with 1/2 a pill every day for a week.  Then 1 pill a day for a week.  So, the idea of a half a pill every other day sounds doable to start with.  My stomach didn't start hurting until  I had been taking 1 pill a day for over a week.

Hearing how Plaquenil has helped other does really make me want to give it a try again.

Terri

[harrigan]

Rhonda and Terri - I'm 49 too! And I started Plaquenil 400mg per day in March.  I know not to even look for improvement till I hit the 3 month mark and maybe even 6 months.  I've just tried to focus on knowing I will feel better for the summer hols (I'm a teacher)

I only had bad stomach side effects for 2 - 3 weeks.  I'd taken my 1st 2 pills before I read about starting on a low dose and I was fine, so just carried on. It's mostly ok, although there are times I have to go NOW! I get occasional dizzy turns but it wil definitely be worth it to feel better over all.  Hope you are ok on it Rhonda.

By the way - are you two 50 this year or next?  My b'day is December, but I'm hoping people will be too busy getting ready for Christmas to get up to any mischief (see Sassie's thread on Big B'days!!)

[Linda196]

Hey, I'm 49 , too...have been for 9 years!

Just wanted to mention that I've been taking Plaquenil for more than 5 years, with no side effects and a positive, if slow and gradual, improvement in all symptoms...I even feel my mouth and eyes are less dry, although clinical testing doesn't support this.

[Lesleybird]

   Hi Terri,  I just started taking Plaquenil two and a half months ago. I was taking 200mg. twice a day with food and found that it did give me some gastric symptoms. It gave me really bad gas after a couple of days and made me feel a little nauseated at times, but after a couple of weeks it was helping my joint pain and fatigue about 50 percent, but did not help my dry eyes. I stopped taking the medication after 6 weeks as I developed the flu with right lower lobe pneumonia. I am a nurse that works in a hospital and I was taking care of a Spanish only speaking gentelman with the flu and pneumonia and a few days later I got sick. This was early in April before they were doing the type testing for the H1N1 and they only knew that this man had influenza type A. On April 5 I was very sick and had a sore throat, cough, and was too sick to get out of bed even to get dressed to go to the doctor. My husband came home and drove me to the doctor because I was too weak to drive. The doctor did not test for the flu as they did not have any scare of this pig flu until three weeks later. He gave me antibiotics and after a couple of days it was not working, no improvement. He called in another antibiotic and it did not help at all. I had started on Tamiflu the second day that I got sick as I had a supply at home and I threw it up so I did not take it again. I had a loud popping sound in my right lung, fever of 102, coughing up junk....anyway, I think I had a flu that turned into pneumonia. I was off work for over a week and sick for at least 10 days. I honestly think I might have had an undocumented case of this pig flu as I live in Texas and was taking care of this Mexican man in the hospital, and it was not the regular flu season. Don't know if I got sick because my immune system was down from the Plaquenil or not. I finally started taking the Plaquenil again after being off of it for three weeks while I was sick and nauseated. Now I keep getting this sickish feeling in my upper digestive track so I have cut back for a while and am just taking one 200 mg. pill a day and will try again to take it twice a day if my gastric symptoms improve some. Found that eating yogurt helps some with the digestive track stuff.

   I am in the same boat as you with a highly positive ANA in the 700 range and it is all in the RO antibody which has the same high value, no other antibodies except for thyroid antibodies found to date. Taking large doses of thyroid also. I get extreme fatigue at times that really makes me sad as after I work my job I do not have much energy to do the things in life that I want and need to do on my days off.  I have chronic torso aches that makes it sometimes hurt to inhale which is like diaphragm pain. My joints hurt, back hurts. The pain moves around my body from place to place and often keeps me up at night or wakes me up early in the morning. I get really depressed and think of wanting to die a lot as this illness has robbed me of my vitality and made me feel like I have the flu 90 percent of the time.  I have dry eyes that hurt when I wake up in the morning, can't see without putting wetting drops in the am., and then I have reflexive tears all day long that are running down my face all day making me look like I am crying when I am not. Have read that this could be because there are three different types of cells/tissues that produce the components that keep our eyes moist. Some produce substances that keep our tears from evaporating and others produce other components. My don't work right and the tears all day long are just salt water that runs down my face. My eyemakeup gets caked with salt and washes off and needs to be fixed all day. My mouth is only dry at times and is not my main problem. I have skin rashes that are itchy red spots on my back and torso, and painless sores on the roof of my mouth.  I have memory problems. The rheumatologist won't give my condition a name as it is somewhere between Lupus and Sjogren's. He says if he gives a person a label that insurance companies that don't always pay for preexisting conditions may not pay the doctor's bills. He just says I have autoimmune disease. No blood work shows signs of kidney or liver problems. Have a chronic low white blood cell count also. Sometimes have a red rash across my nose and cheeks. From what I read I have 6 or 7 of the criteria for lupus when one only needs 4, but they say a lot of rheumatologists don't like to diagnose Lupus unless one has anti-DS DNA which is an incorrect but commonly used criteria by some doctors. But here I am in limbo land with no diagnosis feeling sick most of the time. I am really soooo tired of all of this. I unlike some other people don't blame the doctors as I know that with these autoimmune conditions the treatment is the same and there is no cure. I didn't mean to steal your thread and talk about me, but I too am very unhappy about this illness that has robbed me of much of my life. I take care other people in the hospital that are much sicker and have major organ failures and I know I am lucky, but this illness is not visable to others but only we know how much we suffer. I go to work on many days feeling sick, but cannot take off as I need my job. I don't tell anyone at work that I feel sick and just pretend and do my best. Don't want my employer to think that I am not good at my job due to this illness.  I am going to keep trying on the Plaquenil and will keep you posted. I don't know if this mild nausea is from the medication or not as sometimes I think it is part of the illness itself.
                                                                                                                                                                                                   Lesley

[Rhonda]

Harrigan and all.  Thank you for your supportive words!  Harrigan- I will be 50 this August!  YIKES!  I never thought I'd turn 50- because then I would be OLD!!! But somehow, 50 doesn't seem so old these days!     

I will be putting off starting my Plaquenil for a few weeks.  I saw the opthalmologist today and he says I now have macular degeneration in one eye and has referred me to a retina specialist.  He deferred the decision to take the Plaquenil to the retina specialist.  I am SO frustrated.  Every time I go to the doctor lately, I have something else to contend with.  Does this NEVER end?

[dbab]

I'm sorry to hear about the MD Rhonda.  I also have it.  My doc says "you have drusen in your eye".  I'm like, what the heck is that?   I'm 33 so I was taken back by it all, this was two years ago.  He and another ophthalmalogist conferred on it and decided that I was fine to take the Plaquenil.  They just check to see if the MD is getting worse each time.  As long as its not, then the Plaquenil stays.  I'm sure hoping that they know what they are doing.  I know age related macular degeneration happens a lot and is a natural occuring thing that happens to many people (usually older than I am).

[Rhonda]

Thanks dbab.  I hope I can take the Plaquenil because I want to get the SS under control.  Between the SS and the fibromyalgia, I am miserable.  I hope this MD will not progress. 

I am sorry to hear you have it too.  Hugs