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Old 10-15-2009, 05:09 PM   #1
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"What the doctor said"

Hi Everyone, I went to the doctor and he told me I have Connective Tissue Disease. He said that it "could" turn into Lupus, as time goes on. He started me on Hydroxychloroquine, 200mg, 2 times a day. I am always sick with everything that goes around and I am worried I will be even sicker now. I am a cosmetologist and have to work to make money,by that I mean if I am not at work with booked appointments I make not money, but at the same time I work with the public and come in contact with everything. I am just concerned and wanted to let everyone who had posted to my previous post know what I had found out. Hopefully you can give me some hints on how to stay well when on this medicine. Still waiting on some blood work. He did tell me that if one test came back with low numbers, he would suggest I have the Gamma Globluins (sp), in the hospital once a month to build my system up. Any advice will be appreciated and this medicine is making me kinda sick not bad but kinda and I am taking it with food. Any suggestions on that will be helpful too. Thanks

Jennifer

Graves, pradiod tumor, bladder tumor, ear tumors and now UCTD.

 
Old 10-15-2009, 06:00 PM   #2
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Re: "What the doctor said"

Plaquenil is an antimalarial med not an immunosuppresant so you won't catch anything that you would if not on the med (if that makes sense). If you are taking a generic brand ask the pharmacist for a different one next time....sometimes the fillers make the stomach upset.

 
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Old 10-15-2009, 07:47 PM   #3
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Re: "What the doctor said"

I was diagnosed 4 1/2 yrs ago with Connective Tissue Disease and Sjogrens, now they say Lupus and Sjogrens Syndrome. I have been on 200mg Plaquenil twice a day for the 4 1/2 yrs. It has helped me so very much. I take it with breakfast and supper. I have had a couple flares, but not near as bad as I felt before Plaquenil. I take the generic and it took about 4 months to reap the benefits, but when it did kick in I felt so much better. Hope it will do the same for you. Just relax and let the meds do their work.

 
Old 10-15-2009, 08:01 PM   #4
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Re: "What the doctor said"

jenz11, that's also my understanding, that Plaquenil does NOT suppress the immune system. In contrast, as I understand it, stronger meds DO suppress it, meaning steroids & the immunosuppressants. You should ask your drs. to compare/contrast these classes of meds, for perspective.

I've been on Plaquenil for 9+ years, with only one bout of flu, lasting just 2 days. While I still get pain & fatigue, I got rid of nastier problems (migraines, anemia, GI & urinary problems, UTI's, stones, rashes, etc.) So I LOVE what Plaquenil has done for me. Here's hoping you do as well or even better!

Also, you could consider commonsense things, like flu shot (but ask your dr. first to OK it). Also, frequent hand-washing, incl. the fluid available in drug & grocery stores (I carry it in my handbag). Also, wearing a protective mask when working up close (I see employees in nail & hair salons wearing masks). And always, eat sensibly & sleep properly.

I'm so sorry to read that you have multiple problems; I hope you are managing all & can get to a a better place overall. And I hope you keep posting here. Sending you my best wishes, Vee

 
Old 10-16-2009, 10:33 AM   #5
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Re: "What the doctor said"

Hi, Jenz. I have been on Plaquenil for over a year now and I have not had any increase in illnesses from being around others than I have had in the past. I have had a couple of sore throats, bronchitis and been treated with antibiotics and I have not noticed any increase in time to get over them. Overall I don't think the Plaquenil has caused me any ill effects. That being said, I do take Flu and pneumonia shots as recommended just as a preventative. I also avoid others if they are sick, but I always did that in the past. I agree that if you have to be in the public to work, wear a mask if possible and post a note that if some patron is sick to call ahead so you may be prepared. That is just common courtesy, in my opinion.

 
Old 10-16-2009, 02:25 PM   #6
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Re: "What the doctor said"

When I was first diagnosed with SLE I was put on plaquenil, but unfortunately it brought me out in a horrendous all over rash, so I had to be on a mixture of steroids and immunosupressants for the next 8 years. The steroid was gradually decreased until 2 years ago when I came off it altogether just remaining on the immunosupressants. I wish I could have stayed on the plaquenil because other than frequent eye tests there does not seem to be any ill effects. There are all kinds of problems connected to steroids and immunosupressants.

 
Old 10-17-2009, 06:46 AM   #7
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Smile Re: "What the doctor said"

Sorry to here you cold not take the Plaquenil. No one told me about frequent eye test. Could you explain this to me? I really hope this medicine works for me, but I do have to admit the waiting is hard. I wanted a quick fix, but when I think about it, if I am sick for a couple of weeks ( until I get use to this medicine) so be it. If it helps, I am glad to have the 4 to 8 weeks it takes to help. I can do it because I can see some relief in the near future.

Thank you all for your replies. I am so new to this and have a lot of learning to do. I am glad, I can come to you all and ask questions that may concern me. Thanks for being there

Jennifer

 
Old 10-17-2009, 09:48 AM   #8
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Re: "What the doctor said"

Hi, sorry to here this I really do know how feel. And I have to add you got some very good advice from others. I to am on hydroxychloriquine,I have done very well on it.And as for the eyes yes you must go at least once a year to get them checked. But that is me, you may have to do more.I had mine checked three years now so far so good. When I got on it my feet hurt so bad I could hardly walk. It only took three weeks at the most and it started working.I was so happy about it. I do have thinning hair from it thou.I to am afraid to go out in public,Ido still catch everything that come along. I get chronic broncitis yearly.You learn as you go, every one is different .But you can find alot of info here. Once again the other should of helped alot.I have had lupus since 2003 and all the following came along OA, RA, fibro,tinnitus,raynauds,IBS,osteopenia,r estless leg,allergies,overactive bladder,insomnia,memory problems,fatique, depression,anxiety. I was so glad when I fould this board it is wonderful.You never feel alone, but that is how I feel .Good Luck and keep posting and reading. home sweet home

 
Old 10-17-2009, 05:19 PM   #9
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Re: "What the doctor said"

I'll post this again...

Plaquenil is an antimalarial med not an immunosuppresant so you won't catch anything that you would if not on the med (if that makes sense). If you are taking a generic brand ask the pharmacist for a different one next time....sometimes the fillers make the stomach upset.

 
Old 10-17-2009, 09:41 PM   #10
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Re: "What the doctor said"

In reference to the eye exam, I have read that Plaquenil can affect one's eye sight but it generally disappears if the drug is discontinued. I had an exam before I began the Plaquenil and go once a year now. The just need a baseline exam to have to watch for changes. I have been on almost 2 years and have had no problems with my eyesight. One thing to keep in mind, is that in trials on new drugs, If one person in the trials says they have eye changes , the pharmaceutical company is required by law to include that info in the literature as a side effect.

 
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