Plaquenil (Hydroxycholorquine)

[Lori707]

My doctor wants me to start taking Plaquenil.

I have chronic inflamation of my stomach and esphogus. The doc stated that Plaquenil is easier on the stomach so I shouldn't take the hydroxycholotquine. Can someone tell me if either med causes heartburn? Also, I would appreciate if you can tell me what side effects you have from it and how long you've been on it. I heard that it effects the eyes and makes your hair fall out.,etc..

I have to be honest..I'm SOOO scared of this medication!!!  Does a person have to stay on it for life?

Thanks.

[Lori707]

UPDATE:
techzit: my new rheumy still couldn't put his finger on exactly what kind of arthritis it is except he does know it's inflammatory. It's affecting my veins and skin as well.
                                       BUT!!!
I was JUST diagnosed with Lymes disease and am now getting IV antibiotic treatments daily through a Picc Line they inserted through my arm that goes to my heart.

I had Lymes disease about 23-24 yrs ago and and was obviously under treated. I got it again without a bite 2-3 years after that. Then I had IV Therapy daily for 3 weeks. Fast forward many years. It came out again and I tested positive. So therefore I can have Lymes arthritis along with a real bad case of fibromyalgia. The docs say I can still have RA which the Lymes triggered. But I'm stuck with what the Lymes did. I'm curious as to see what my RA Factor is now after taking the antibiotics. It seems that I was undertreated or went into remission. Parasites can hide out for decades and avoided antibiotics. I'm wondering if Lymes could have given me inflammation and ulcers in my intestins/colon.

I hope you're doing well.

[Beyondme3]

I have been on Plaquenil 200 mg since June 2009. It has helped alot. I had problems with my eyes to start out with. That's how they found out I had Lupus. I'm tired alot more now. But at least I haven't had sores in my mouth and blisters all over my body. It's worth the risk for me.
Beyondme3

[txsilver]

You did have a tough week.  I don't think I recalled you having inflammation in your intestines, too.  It is possible that the doc is right about getting the inflammation down in your intestines causing other areas of inflammation to calm down too.  I hope you get relief soon.  

[Lori707]

My new Rhuemy wants to start me on 5mg. pregnisone daily. He said this just after we were talking about my osteoporosis and the fact that I lost up to 10.2% of my bone mass in 1yr. I told him if I take the pregnisone then WHAT ABOUT MY BONES?? This drug ***** up the bones! Don't you understand I'm losing my bones fast"? Well...I started crying and apologized but I felt so alone and scared. I'm in a catch 22 position. I'm seeing him real soon again. Lets see what he says. Also seeing my Endocronologist next week and she's trying to get me on something.

Eventhough this new Rheumy says I don't have RA, I still think that I just may have it. He's basing it on the fact that my MRI's don't show any sign of RA but do show Osteo Arthritis with inflamation. He says that once they get the inflamation down in my intestines, then my joint inflamation will go down. But then he's not dealing with the fact that I'm systemic and I'm afraid about the fact that my veins are inflamed. I'm also not getting enough blood flow to my hands and feet.

I had a hard week. Pain in lower back (OUCH) and all my joints. Having a hard time with my neck. It also gets locked. Could hardly walk around the house. Pain in my intestinal area. I look so darn pale. My neurologist had to up my meds.  

I called Glaxco who manufactures Boniva. Did you know that "ONE" IV treatment cost $1,500 ???  I was shocked!

I will look into Actonel !

Thanks so much!!

[Morknmindy]

Just dropping in with my two cents... I have been on plaquenil for two years now.. It took a few months to feel a difference but it did not take all of my pain away.  I use it for Lupus and my flare up has been at its peak these past two years.  I had prednisone added to the plaquenil and it is helping a bit more.. However, prednisone should not be long term.. So I will see if I flare up again after it is taken away in the near future.  I was on prednisone with plaquenil initially and stopped prednisone due to gaining rapid weight... I will see where it all leads.  

As far as plaquenil, I have had no trouble with it at all.. No hair loss, no stomach pain and my eyes are fine ( I see a specialist every 6 months).  

[techzit]

Did he say specifically why he ruled out RA?

[TrudieC]

My goodness!  So glad you are finally getting your answers.  I was diagnosed with ulcerative colitis when I was 21 and as much as I had a bad case of it (have had my colon removed and a j-pouch created since) I can't imagine all that you have going on.  It certainly sounds odd to have osteo in every joint.  I doubt very much that the Plaquinel will help in the intestines.  There are some other types of anti-inflammatories that get used with inflammatory bowel diseases in addition to prednisone to initially manage the flare and they are having really good results with immune suppressants.  My son has colitis and is on Imuran and is doing so well.  Sure wish the treatment options were around when I was younger.  Crohn's can be tougher to treat because it goes much farther in the body than colitis.  

My thoughts and prayers are with you that  you can quickly get things solved and under control.

[Lori707]

Update:
My internest wanted me to go to,(I'll call him Dr.R)1 1/2 yrs. ago. He's a top Rhuemy. Unfortunately, Dr.R didn't take my insurance so I went elsewhere. I just changed insurance & Dr. R takes that. My internest told me last month to see him and that he totally trusts him. So I did. He ordered MRI's of joints and more blood work. Went to see him yesterday. I took all the tests so this visit was "whatever he says I have, then that's it".  He spent close to 1/2hr. looking at the CD's of the MRI's. This was my second visit with him. He came back in and gave me an exam. He said that he had taken tests for any possible bacteria or yeast in my intestines. My Gastro doc never did that. One of them came out high postive. Last year I had bleeding ulcers in my colon. I took meds and it cleared up. Gastro doc said I had colitis at the time (no diarreha). Then he said it might have been an eschemic attack of the colon. I just had a colonoscopy this March and the colon looked clean. So now the Gastro doc doesn't know what's what with me. It took my Rhuemy to diagnose me with Crohns disease. He said that I don't have RA but have oseoarthritis in every joint which are all inflamed. He said I have inflamation in my intestines (I do hurt there) and it's causing inflamation at times with my liver and joints. But then I also have the neurological problems. Dr.R is calling my Gastro doc. He said Crohns and Colitis is autoimmune and said I'm systemic. He said my veins are inflamed. He knows I have Plaquenil at home but didn't tell me to take it. He want's me to see him in 3 weeks. He also wants to speak with my neurologist and I have no idea why. Dr.R may tell me in 3 weeks to take the Plaquinel. I have no idea and now I'm more confused than ever. My RA Factor is 140 and my C Complements are a bit high. My CRP and Sed Rate are normal. The high numbers would make me think that would mean I have RA but he said that's an idication of inflamation and it may be coming from my intestines. But then....How can a person have OA in EVERY joint??? Is this possible? Oh..he also said that my skin gets inflamed and that it's the largest organ in the body. Last year my ANA was 24 and has been creeping up. Now it's 88 and could go positive over 99.
Really asking for a reply and adivse that I need. Could also use any comments and thoughts. Do you think that Plaquinel would be good to take for my intestines as well? I'm all inflamed. Ugg!

[techzit]

This is a great sight for research on any medication your looking for info on. The info is listed by patients who have experience with the drug.

http://www.askapatient.com/

[txsilver]

Kudos to you for making sure all your docs know what meds you are taking and for getting them to work as a team!  Drug interactions are a very real problem and have to be considered with every script.  I am glad you waited.  One suggestion, make a list of all the drugs you are taking and, if you know of meds you cannot take as a result of one you are taking, note it.  I keep a list to take to every doctor appt I have, dental too, and I maintain a list in my purse with my ID in case I am ever in an accident.  It can be a pain to update it all the time but I figure one day it may save me.
Please keep us posted on how you are doing, what treatment plans you get etc.  We will be here for you through the rough times and want to join you to celebrate any good news you get.

[TrudieC]

Well, Ok, this does sound like an acceptable excuse....  We'll let you off the hook until you get through this.  I will keep you in my thoughts as you do the INH.  Life can definitely get quite complicated!

[Lori707]

I CAN'T STOP LAUGHING! You two have me hysterical.

You have to believe me..LOL...I was going to pop the pill into my mouth..but then I stopped. Went to see my internest with my husband. My internest subspecializes in infectious diseases. I think I've mentioned this before. In 1996 someone, someplace, stood next to me who had TB. When I was getting my physical, I was tested for it and it came out positive. It wasn't active but I am infected by it and is "latent" (sleeping). The prodical at that time was anyone over the age of 35 should not take the 9 months of the TB antibiotic called INH for short. The reason being that INH is so very toxic to the liver, and can cause lots of very bad side effects. As a person ages, their organs work slower, therefore the INH gets out of the liver and system slower making it more toxic. Then the medical community changed the prodical to 50 because so many people were getting activated with TB. I'm 58 but have to start the INH since what I have can activate the TB since my immune system is surpressed as is because of the inflamation I have. My internest said that he doesn't think it's a good idea to start the Plaquenil and the INH at the exact same time since in case there's side effects, which drug would you blame it on? Also, they're both toxic. I'm now in the middle of taking MRI's of different joints and more blood work from my rheumy. The internest said he wants to wait until all the tests come back and he'll speak with my rhuemy and they will decide what to do about the Plaquenil.

At this point, I'm so worried about the INH and not worried about the Plaquenil. I'm not making excuses now as I was last week for not taking the Plaqunel.

Waiting for your replies. LOL  I like the two of you.

[TrudieC]

Yes, inquiring minds want to know?

[txsilver]

I know what you mean about new drugs and concerns over side effects on annual IVs.  I am not aware of anyone taking Reclast, but I know several folks on Boniva and they are doing well with it.  If I were you, I think I would talk to the doc about the Boniva IV on a monthly basis and see how that goes.  I think I would definitely go for the IV form over the pill with your history.  
I have to ask.  Have you taken the plaquenil yet?  :)

[Lori707]

My rhuemy suggested reclast. I'm afraid to begin with a once a year med. What if I have a reaction to it and I'm stuck with it for a year? If I take IV once p/month and have a side effect, than I can go off of it and not be stuck with it for a year. Would like your opinion on it. My endocronologist suggested Boniva IV. Oh..also regarding Reclast..I think that's a relatively new drug and I'm always afraid to go on new drugs. Don't know the real side effects of a new drug until it's been out there for years.

[txsilver]

I do take Actonel once per month.  It does not upset my stomach but I do hate that morning each month.  I get up, take the pill with 8 oz of water and have to stay sitting up for 30 minutes.  This is not easy for me without caffeine :)  While I have had stomach problems off and on, because of the omniprazole, I seem to do ok.  
I understand the concern about the impact on your kidneys.  For awhile I was on methotrexate and had to go in every month to have my liver checked.  I hated injecting myself every week, but that is what it took to feel better.  I have been very blessed that I no longer have to take it.  I guess that is why I am such a big fan of the plaquenil, it is so much milder than the methotrexate.  Honestly, I think if I had been diagnosed sooner, I might not have needed to go on the methotrexate at all.  But I digress.  You might want to consider asking your doctor about reclast.  It is the once a year IV medication.  That way you wouldn't have to take a pill once a month or get injections more than anually.

[Lori707]

Last year when I was osteopenic (typo?) the doc wanted me on Boniva. I told him I couldn't take it because I have gastric inflamation,ulcers on and off and inflamation in my esphagus. An entire year passed and I took another DX Scan in March. It stated I now have osteoporosis. I actually lost up to 10.2% of my bone mass in 12 months. All my doctors don't like that! No doctor ever told me that I can take Boniva, or whatever, intravenously. Now I have three doctors talking with each other to decide what medicine their going to give me. It's the end of May already and they have been bouncing this around since March!!! My 85 1/2 yr. old mother has great bones. So as I'm typing now, I just may be continuing to loose more bone. (Oh..if I take it intavenously my kidneys have to be watched more). Ugg!!!

Do you take your Actonel 1 time per month? Does it upset your stomach?

[txsilver]

I have osteoporosis and have been on Actonel for 18 months.  It has done wonders and reversed all of my bone loss, some greatly and some moderately, but all areas have improved.  There are so many contributing factors to it that there is no telling what caused it in either of us.  Genetic predisposition did not help in my case.  What are the docs doing to treat yours?

[Lori707]

I take Nexium and Carafate(Sucralfate). I had changed to Previced but felt Nexium was better. The Sucralfate is great because it acts as a bandade on any inflamed tissues. I have been taking PPI's for SOOO many years and at high doses. No doctor ever told me that a person can get osteoporsis from it. PPI's do not absorb calcium. I found that these doctors just hand the scripts out for this med like candy.

I have osteoporisis. Also am on Vit.D high dose supplement because my D was very low. That also causes osteoporosis. I also have inflamatory arthritis and don't know if that can cause osteoporosis. My parathyroidism(secondary) can also cause it. So I really don't know how much the PPI's attributed to it.

[TrudieC]

I take Pantaloc (a Proton pump inhibitor) for my stomach.  I'm interested to know what you are taking as well txsilver.

[Lori707]

What meds are you on for your stomach?

[txsilver]

I am glad you got a laugh.  :)  I feel for you and understand what you are going through.  Like Trudie, I am on the generic because of insurance.  The prescription I take to protect my stomach from the plaquenil and relafen is working out fine and I have been on these meds about 18 months now.  
Because of a pinched nerve, I live with pins and needles in 2 of my fingers.  
Interesting point Trudie made about dreams.  I had not read about that being a side effect, but I can say I have had very vivid dreams, too.  That is on the nights I am not taking sleep meds :)
What ever we think or say, you definitely need to collect the data on the meds, weigh the pros and cons and make the right decision, the one you can live with, for yourself.  Let us know what you decide and how you are doing.

[TrudieC]

I don't get a choice - must do generic if available for insurance purposes.  So glad you will be moving forward.  I haven't had my eye appointment yet but have felt my eyes changing - weird that it is harder to see without the glasses but same prescription does the job when I actually put the darned things on!  Could just be age...sigh....

With the plaquenil I saw a big reduction in brain fog, tiredness and flu like feeling and big increase in ability to concentrate.  Hope to hear good news from you in another month or so.

[Lori707]

To: txsilver- You gave me a good laugh after I read your first sentence "So you still have the bottle of plaquenil and are not ready to start taking it?". I felt like I got caught. LOL

You and TrudieC are correct. I should just take it already! I went to the eye doctor and got a baseline. I had to go to him twice because the first time he said I had a torn cornea. Had to wait until that healed until I got my baseline. My eyeglass perscription changed but he said not to waste my money on new lenses as of yet because the Plaquenil will change them again.

Do any of you get pins and needles? Also, my question is to whether or not to take the brand Plaquenil or the generic, Hydroxycholorquine. My reumy says the Plaquenil has a different coating and would be better for my stomach in terms of indigestion but the pharmacists don't know what he's talking about. That leaves me confused. Which one should I take?