Topic: Me again - any PLAQUENIL buddies out there?
dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
I've got my prescription for it now and plan to start in the next few days at half a dose.
Please tell me your experiences with it.
Some minor concerns I have are whether I will notice if I have eye problems from it as my vision can go in and out of focus sometimes on it's own, or I may see flashes, or 'blobs'...how would I know if it was a Plaquenil problem?
Second, is it likely to affect kidneys or liver? Has it affected you that way?
Also, can someone tell me why it's bad to take Tylenol with Plaquenil? I get a lot of headaches and saw on a website that one should 'tell your doctor of pharmacist ESPECIALLY if you take Tylenol' with Plaquenil. I am allergic to Aspirin and Ibuprofen, and Codeine, so I don't really have another painkiller option.
DLL
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
| IP: Logged |
posted
I have been on plaquenil for about 3 weeks. I added it to my Alinia/Zith pulse combo. I have noticed a herx reaction, but not excessive. I have also noticed a slight decrease in my appetite (which is very welcome to me since I have gained 15 pounds since starting treatment).
I had to see the opthalmologist before starting so I could establish a "baseline," and he said he has lots of patients on plaquenil, and not many problems at all. He said that if problems do develop, you just stop the meds and they are reversible (if caught soon enough).
I stay away from any other meds like Tylenol that clear through the liver just because I am taxing my poor liver so much with all these meds! I would say ask your doc, and use sparingly. I have had almost a constant low-level headache since starting plaquenil. It's bearable.
Good luck!
Posts: 393 | From Washington, DC | Registered: Jun 2005
| IP: Logged |
Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
DLL,
I've been on plaquenil over two years. I don't remember anything from when I started on it, but it does reduce pain and stiffness in my hands.
I take Vicodin with it, which has acetominophen (Tylenol) in it, my doctor never mentioned anything. Maybe it's a liver thing?
As for eyes, the eye damage is not noticeable until the extreme. Plaquenil can cause a reduction in your peripheral vision. It is recommended you get a field of vision test before (or soon after) starting, and then get a test every 6 months.
If they noticed a reduction in your field of vision, you stop the Plaquenil. That should be before any damage that has a noticeable impact on your vision.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
| IP: Logged |
posted
I was taking plaquenil for 6 months at full dose. It helped with the joint pain a lot. (I could walk!) I did notice a flair up after I started, but then it got less. (I may go back on it when I see my new LLMD)
I also take Vicodin.
I have noticed a change in my vision, but that was beginning before the plaquenil. As long as you stay up to date with your opthamologist, you should be fine.
Posts: 240 | From MA | Registered: Nov 2006
| IP: Logged |
dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
Thanks for the replies so far.
My GP just said 'let's check your eyes' and asked me to read off the chart on the wall...that does not seem very thorough somehow.
He also said I should start the Plaquenil on its own so that we know what is causing a problem IF I develop a problem.
I really don't know how I would get by unable to take ANY tylenol for my head.
I am supposed to add Zithromax 250mgx2/day, go back on Ceftin2000mg/day, and Malarone 1 a day.
I didn't see it mentioned, but I wonder if Omeprazole would be OK with it also, does anyone know?
DLL
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
| IP: Logged |
sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
Hi DLL-
haven't taken the Plaq yet. have the script in hand, as you do, but haven't made it to the eye DR, a precondition of my LLMD. That and visits to the eye DR every 3 months.
My LLMD says eye damage from this med is very rare. Being the thorough DR he always is, he sent me a pile of medical lit about the subject, which I have skimmed.
There apparently have been NO known cases of damage from the doses of Plaq that are typically given for TBD. I found that very reassuring. Hope you do too....
PS- My next tx recipie is the Plaq plus Zith plus Malarone- same as yours, minus the Ceftin? Are you working on babesia as well?
best of luck- dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
| IP: Logged |
dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
Thanks for the reassurance about eyes. That's good. Although my GP did the 'read the letters on my wall' eye test today, I think I will book into an eye place and pay for a proper test.
DLL
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
| IP: Logged |
Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
I just made my appointment for my next eye test. The official name is "Visual Fields Testing." I go to a medical doctor and it's covered by my insurance.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
| IP: Logged |
I took Plaquenil along with my Zithromax and had a strong herx -- unclear thinking and instant, deep depression plus bone-wearying fatigue. On the up side, my hands felt less achey.
My LLMD said to stop it for 2-3 weeks and then try it again.
I feel like a lightweight compared to those of you taking Mepron or Malarone in addition to Plaq and Zith! I wonder if I'll ever get to the Babesia treatment full tilt?!
My regular vision symptoms are pretty extreme. I had the field of vision test to start a baseline too.
Wishing y'all well,
wiserforit
Posts: 508 | From Banks of the Hudson | Registered: Jul 2006
| IP: Logged |
lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
I didn't notice any changes when I started Plaquenil. I even mentioned that to my LLMD and he said it can take up to three months to take effect.
Well, low and behold, it's over three months now and I have noticed an improvement in joint pain, especially in my knees and hips.
My LLMD is very thorough and he said nothing about Tylenol with it.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
| IP: Logged |
sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
DLL- LymedNVa's message reminded me-
my thorough LLMD didn't warn against tylenol etc. either, and we were very much on the subject of pain relief for much of my last call.
Posts: 2507 | From lost in the maze | Registered: Aug 2006
| IP: Logged |
dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
tell your doctor and pharmacist if you are allergic to hydroxychloroquine, chloroquine (Aralen), primaquine, or any other drugs. tell your doctor and pharmacist what prescription and nonprescription drugs you are taking, especially acetaminophen (Tylenol, others), digoxin (Lanoxin), iron-containing medications (including multivitamins), isoniazid (Nydrazid), methotrexate (Rheumatrex), niacin, rifampin (Rifadin, Rimactane), and vitamins and herbal products. tell your doctor if you have or have ever had liver disease, psoriasis, porphyria or other blood disorders, G-6-PD deficiency, dermatitis (skin inflammations), or if you drink large amounts of alcohol. tell your doctor if you have ever had vision changes while taking hydroxychloroquine, chloroquine (Aralen), or primaquine. tell your doctor if you are pregnant, plan to become pregnant, or are breast-feeding. If you become pregnant while taking hydroxychloroquine, call your doctor.
DLL
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
| IP: Logged |
posted
I just finished seven months of plaquenil with no problems. Ditto for 6 months last year.
A friend who is a top eye Dr. tells me it takes a very long time for Plaquenil to cause eye problems. These problems were typically seen in missionaries in malarial areas who took plaquenil for 20 yrs+.
He said the changes are so slow he doesn't see any point in establishing a baseline if I'll only be on it 6 months or so. hats
Posts: 956 | From MA | Registered: Nov 2004
| IP: Logged |
Boomerang
Frequent Contributor (1K+ posts)
Member # 7979
posted
Hey DLL......you sound much like my better half. He's allergic to penicillin, sulfa, ibuprofen, and ceftin.......
He hasn't taken the Plaq yet. I'm wondering if he's going to be allergic to it. Posts: 1366 | From Southeast | Registered: Sep 2005
| IP: Logged |
posted
DLL- I started Plaquenil /w Doxy on Nov 10. So far it is the only thing that seems to be giving me some relief ( better than the IV and all the other abx I tried for the last year or so.)
I had a 2 day bad herx almost exactly 72 hours after starting, and occassionally have been running fevers, aches, palps, twitches, dizziness, etc.. BUT they seem to be lessening some.
I still have to go get my eye exam thing.. I guess you are supposed to get a baseline vision thing done.
Regards Natalie
Posts: 87 | From Clarksburg, NJ, Monmouth | Registered: Aug 2005
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic