Topic: Started Plaquenil - what is your experience w/ this?
Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
Hello Everyone,
My doctor started me on Plaquenil. He says that I have developed an autoimmune disorder and this will help. Hmmm, How can I be tactful about this? I got the runs like crazy. It's my second day. Will this let up. Has anyone else had this side effect? Has anyone had good results with this medicine.
Thanks, Haley
Posts: 2232 | From USA | Registered: Aug 2009
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
If it continues with the bowel issue, I wouldn't continue taking it and contact your doctor about it.
I'm glad you asked about this medicine though as I just started it today as well. I am hoping and praying it helps me, as I've been getting worse.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
Thanks, Anyone else out there have success with this?
Posts: 2232 | From USA | Registered: Aug 2009
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posted
Autoimmune issue? Find another dr. It did give me the runs too. I did well on it after 2 months but then it did not work anymore and I seemed to become resistant to it.
Posts: 433 | From new york | Registered: Dec 2004
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Diarrhea is listed as the first, most common side effect of Plaquenil. If it continues out of the ordinary, be sure to call your doctor.
Also be sure to drink enough water to rehydrate - and replace your minerals and electrolytes. A little sea salt (1/8 tsp.) in a glass of water with a dash of fresh lemon or lime juice is a good start. A packet of Emergen-C is a good idea.
If you don't have any of that, a banana will help, too (best if it is not too ripe and best if eaten with a few nuts to balance out the glycemic impact).
The banana is mostly an emergency help to get electrolytes up, especially potassium. However, sweet fruits are not normally suggested as it can feed candida, a yeast infection that is common with antimicrobial drugs.
As someone suggested in a post above, be sure to take probiotics - away from the time of the plaquenil. Probiotics can help prevent a systemic candida infection and probiotics are also necessary for your gut to normalize.
Are you taking plaquenil prescribed for Sjogren's (noted from previous posts)? While that may well help improve symptoms, it is important to know that plaquenil is also a treatment for Babesia, one of the tick-borne infections. So, the diarrhea could be that it is killing off some of babesia protozoa or other infection.
However, backing up, were you ever clinically assessed or tested for babesia? (As I recall you were positive for lyme this past summer sometime). If you do have babesia, it usually requires either a combination of medicines or rotation to prevent resistance.
As for the diarrhea, do you have any coconut oil (nonrefined, not hydrogenated)? Or unsweetened coconut flakes - or coconut milk? That can help calm diarrhea but if it continues, it's best to call your doctor.
Carob can also calm diarrhea. Most natural foods stores carry this as a substitute for cocoa powder. Just mix with a little water to a paste and then add some hot water and maybe a touch of stevia as a natural sweetener. Carob is also helping in absorbing endotoxins in the gut.
Hopefully, this will settle down.
On another note, are you also taking liver support such as Milk Thistle or NAC (N-Acetyl-Cysteine)?
Many pharmaceuticals can be hard on the liver. That is why most LLMDs insist on liver protection during treatment. It's important to support the liver as much as possible because the liver is a key to being able to recover. The liver is also instrumental for our stomach and intestines to work smoothly.
======================
You can read replies to similar questions in previous threads by searching here:
Topic: Does anyone have Mulitple Autoimmune Disease + Lyme and Co's -
[ 10-11-2009, 12:09 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
Thank you everyone!
Wow Keebler. You are a wealth of information. I am going to hobble to the nearest health food store. I may PM you with a phone number if you ever want to talk. Although the magic forest may be a toll call.
I have milk thistle here. I know it produces more bile. I wasn't sure if I should take that while having the runs. I don't have NAC.
It's good to know that the Plaq is probably killing something. I am also taking Azithromycin every other day.
My fear is that I will drift off into the dark side of Lyme if I go off my Lyme meds. In my other post someone said Doxy can cause these autoimmune things. That stuff helps my brain. I've been taking it a long time. My Doc told me to stop taking it.
Posts: 2232 | From USA | Registered: Aug 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Why did your (rheumatologist?) doctor tell you to stop doxycycline?
I hope we all can help you and I know it's overwhelming. Believe me, we all have much to learn. I mostly cut and paste.
Unfortunately, I can't really spend much time on the phone due to sound induced seizures even from normal sounds that come through the phone. I'm working on that but it's best that I keep phone use to a minimum.
From here, others will be a better help since I've never been on an abx protocol more than for 2 months. (Various reasons).
Be sure to go through the past threads on this topic, too. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
I told him that it was starting to bother my stomach.
OK Keebler. I understand. Thanks.
Posts: 2232 | From USA | Registered: Aug 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- That's a valid point.
Sorry to complicate here, but you might also want to read about rife machines. That's one reason why I can't do meds (among others).
Be aware, though, that while most LLMDs are familiar with rife, because it is not FDA approved (but rather considered experimental) they can only pass along what other patients have shared about their experiences. Many lyme patients have had positive effects but it's slow and still just part of an overall plan.
The plus side is that it spares the stomach and liver from some stress when Rx is a rough rife.
Most other doctors, though, would most likely not think highly of the rife. It's very controversial, to say the least. ----
This physician training program will train the next generation of physician-scientists who will be future leaders in the treatment of Lyme and Associated Diseases.
The ILADS and Turn the Corner Foundation (TTC) Physician Training Program, a groundbreaking project vital to fostering excellence in care for Lyme disease patients, directly addresses challenges in properly diagnosing and treating Lyme and other tickborne disease . . .
=================
A note about our intention in sharing educational opportunities with doctors. Regardless of how many doctors we've been to who have had not a clue, I think it's still important to offer respect to each new doctor we see and let their knowledge unravel, to a degree.
I can't say this as I'd like. But, if you offer the links above in an manner expressing desire to know what the full time lyme doctors are learning - and the camaraderie and professional connections that can be made, it may be taken in the spirit intended.
BTW, in the book, CURE UNKNOWN, page 348, author Pam Weintraub describes researcher Alan MacDonald's thought on one interesting aspect of autoimmune and lyme having to do with DNA.
I'm toast and can't go any farther with that. But, if your doctor would want to meet up with Dr. MacD or other ILADS doctors, it might be very exciting for him. -
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