Can't stop plaquenil? Swelling/heart palpitation

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cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 7/20/2008 6:37 PM (GMT -7)   
Hi--
Since I'm being treated for TB and Mayo kind of put their nose up a little at me taking an immunosuppressant having latent TB, I decided to stop to give the antibiotic a good chance. Anyway, I quit for a week, but after that my ankles swelled up worse than I had ever seen-like straight down from calf to foot real bad and I started getting funny uncomfortable tickly feelings in my heart and my heart beat was jumping around.
 
Has anyone else had this problem quitting plaquenil? Normally, a flare doesn't give me these symptoms--though they are looking at ?AI vasculitis because of my left leg--but I had never had this problem and I'd stopped it before for a week or so.  Could it be working in another way, besides the immunosuppressant way, like on my heart?  Or is this just what happens when you get used to it and stop?  I feel like somehow now my heart and/or vascular system is dependent on it now, and I'm not real happy about that.
 
Thanks for any replies. If you have gone off to change to another med or somthing, I'd be interested in your experiences, side effects.
Love, Marji
--Sometimes I think the surest sign that intelligent life exists elsewhere in the universe is that none of it has tried to contact us. Bill Watterson (1958-) cartoonist "Calvin and Hobbes"
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy, GI nightmare
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Detrol, Klonopin, Ultram, Vicodin, Restasis, Albuterol, steroid injections and pred prn


Leta
Veteran Member


Date Joined Aug 2005
Total Posts : 590
   Posted 7/20/2008 6:51 PM (GMT -7)   
Hi Marji,

I just finished up much testing with Mayo. I must say for myself when it came to them with my lupus, I was very disappointed. I would continue to let your Rheumie treat your autoimmune disease. I am in the worst flare in 3 years due to them, My ana on their labs was a 10, now an 8 in may. I was off Plaquenil due to them and have the same swelling in my left ankle. I take a diuretic herbal tea to control it. You are allowed to let them help you with most of your other issues but you, my friend know how you feel, not them. Try the Plaquenil for a week and see how you feel. If you feel better than by gollie you know what is wrong. And I know stay out of the sun. Do not let them tell you it is in your head like this quack (the intake doc). The others, the Derm, and Migraine docs have been listening as they are the ones who diagnosed me with Sun causing me these issues.

You have so much auto-immune stuff you need the Plaquenil is my opinion but me and you have similar issues. I cannot be exposed to the sun, have Sjogren's, etc.

I would love to talk with you more on this with the link.

Leta
sle 01 w/autonomic 11/05, photosensitive 04/04, sjogren's 01, ra 01, fibro 8/05, sinus tachycardia 6/04, asthma 96, multiple allergies 6/04, idiopathic neuropathy/neuro pain 11/05. Epilepsy 3/06-gone, TIA 5/06, Porphyria 5/06, Vitamin D def 4/07, Iron def ferritin 8/07, Chronic migraines 01.Meds- baclofen 40 mg, prenatal tabs, potassium, calcitriol 50 mcg, qvar, xopenex, singulair, plaquenil 400 mg, tramadol 400 mg, darvocet 100 mg, percocet 5mg, amitriptyline 10mg, chromagen, topamax 150mg,


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 7/20/2008 7:37 PM (GMT -7)   
Hey Leta--
So so good to hear from you! Yeah, I'm sticking with my rheumie and even the liver transplant guys are happy with that. When the left ankle swelledup, it is the one with the worst vitiligo hyperpigment and lump, and the left side of my heart had some atrophy that my recent cardiologist could not find, though I have an irregular heart beat on the left side, off the plaquenil, my leg very nearly turned blue when it swelled and it was cold. Anyway. I went back on plaquenil and the heart and leg got better. So there you go. Guess I'm stuck taking it.

Anyway, the issue is that i'm being treated for latent TB, though I strongly feel I have extrapulmonary TB and I don't think Mayo is doing the greatest job treating it, they are supposed to be giving me at least two drugs because the stuff is so disease resistant. I know they are concerned whether my liver can handle the Isoniazid because many people with liver disease have become sick or died. Still, they need to knock this twenty year old infection out for good. TB may be the whole cause of my illness! Mayo hepatologists, endocrinologists and my rheumie all feel that some kind of infection caused my sudden polyendocrine and spinal and liver problems. I had active TB at the time, but they thought it was from Hep C, and I'm false positive for HepC and had a normal bx, so that disease wasn't the right one. I have standard problems, like thoracic kyphosis and chronic cervical lymphadenopathy and pigment problems.

So I'm feeling so so so much better with much more energy and feeling better and believe that for me antibiotics are going to help me get back to a much better place!

How are things with you? I asked Mayo docs about porphyria and my rheumie, but they don't want to test for that. I suppose with my fatty liver, I may have some porphyria and they expect it, maybe not, I don't Know. Maybe part of it is that i'm already on plaquenil so I'm being treated.

Do you think my reaction to stopping plaquentil could be indicative of porphyria? I can still ask them more about it. They are pretty sure I got an infection or had an old infection that caused my illness, and I think they just don't want to complicate things until that issue is taken care of and they can see how much better I get.

I have missed talking with you. How are you? Are you at Mayo JAX (if you don't mind)? Have you seen any liver guys? the ones through the transplant center are the best, but you have to fill out a form to see them. Have you read anything by the Marshall protocol website regarding your vitamin D deficiency? The have a bunch of stuff about that and a lot of info about special lighting and those NO sunglasses.

I would love to hear about your journey to Mayo and the results. The rheumie barely wanted to admit I had AI disease but had to based on labs and tests. I thought the endos weren't so great because they wouldn't give me cortisone for my adrenal insufficiency (or pred, really it's my pituitary right now) because I have latent TB. After seeing my Addisonian hyperpigmentation they asked me about why I never got treated for TB and helped me get to an infectious disease person to be treated. I hope it's strong enough. When I finish, I'm going to look into some of the research where they use antibiotics because I have had so much trouble clearing infections and see what they think.

Take care and I hope we can chat! Did they support your diagnosese? Did they look for underlying causes? For me, its easier, because one day, I just became very ill and my pigment got all messed up. I have some genentic stuff--liver, diabetes.

Well, I hope you write back!
Love, Marji
--Sometimes I think the surest sign that intelligent life exists elsewhere in the universe is that none of it has tried to contact us. Bill Watterson (1958-) cartoonist "Calvin and Hobbes"
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy, GI nightmare
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Detrol, Klonopin, Ultram, Vicodin, Restasis, Albuterol, steroid injections and pred prn

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