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Hi to all! I switched up my AP last May as I had been in a disturbing downhill slide since Sept. '08 and was getting alarmed. It seems I may have babesia, a co-infection of lyme. The doc started me on plaquenil in May, 2 months exactly ago, but so far , it hasn't kicked in. I got off sulfasalazine for the plaquenil. My left knee is so swollen I haven't left my house for a week, my older kids do the errands and shopping for me. Problem is school will be starting soon and they won't be around as much, not to mention I have to drive the youngest to school at 7am! ( Not a good time for me activity wise!) Does anyone know, will the plaquenil kick in soon? Or should it have by now? I went back on a little pred so I can get out of bed in the morning, the other nsaids I've tried don't do much. I don't want to fool around with this as I feel DMARD wise I'm unprotected and I can really feel it. Any thoughts? Thanks!
I would think the plaquenil would've worked by now. Is there a friend that can help you with driving, maybe she drives in the morning and you pick up, for your daughter? We have to adapt so much more than most, esp when our usual sources of help leave. Some suggestions: shop for groceries/ clothes etc online at someplace like amazon. com, shop on the weekends for perishables when your children can help. There are services that provide grocery shopping, errands, light housekeeping, etc, and should be covered by insurance. I've considered using one of these services for shopping, just haven't gotten quite that desperate yet. Anyone else have any ideas or options that have worked for you?
I remember the flare I had after my third child was born, just in time for school to start for my oldest, who was in 1st grade. I recall many mornings of crying as it hurt so much just to turn the key in the ignition, and one rainy day I couldn't get the latch in the baby's car seat to unlatch. I was lucky in that I had a wonderful support system at my church, since we were military and far from family who could help. When I finally humbled myself to accept help, I had more than I needed, women even came over a few days a week to bath the newborn, since it wasn't safe for me to do it; I couldn't hold him up and bend over the bathtub. (Eventually I used the kitchen sink, until he got too big.) I don't know how I would've made it thru without help from those wonderful people, even so, when I look back I'm still amazed at what I did because I had to at that time. My husband was often gone at training exercises as well.
Meanwhile, I'd put a call in to your doctor and tell him of your needs, he may want to switch you to something like mtx. Stay off the prednisone if you can. I hope you start feeling better soon. Until that happens, all I can tell you is that you'll get thru this somehow, and one day you too will look back in amazement at what you were able to accomplish during this difficult time.
linda
plaquenel, methotrexate- yukkkkkkkkkkkk! I really hate those drugs. They did nothing but make me sicker. Did you read the side effects to them? The only thing that worked was AP- TO WHICH THIS SITE IS DEDICATED TO. THE ANTIBIOTIC PROTOCOL. minocycline worked for me.
Best, Diana
Linda, thanks for the support, after being on mino over 2 years, it is like I'm back to “square one”. If I didn't work out of my home my situation would be a total disaster.
Diana, I am so glad that the mino protocol worked for you. After two years, it has not worked for me so the doc is looking into co-infections and some DMARDS aid the AP to perform better. That is what I am hoping for.
Lizz – what are they treating the babesiosis with? Unlike Lymes I “think” that it is easy to tell if you have babesiosis or not. My wife had Lyme and babesiosis at the same time a number of years ago. IIRC at the time she was treated with mepron it was a gold liquid. Mepron is an antiprotozoal. We live in the babesiosis capital of the US, I think the first cases were found here. To DX I think they can tell if you have babesiosis by looking at a slide of your blood. Again if IIRC it looks similar to malaria under the microscope.
Jeff, I had the igenex testing done, which turned up IND on band 39 and positive on band 41. The LLMD I'm seeing says it's possible babesia, a co-infection. So far plaquenil, mino, flagyl is the routine. No mepron yet. The plaquenil and flagyl are really hard on the stomach. I was hoping for some relief by now. I hope your wife is doing well! I haven't had the blood testing as you described. I am, though, getting a babesia test done by Igenex soon, although it wouldn't surprise me if it turned up negative. I think there are alot of negatives when there are clinical indicia of disease upon exam. Like,my kness are relentless!
Thanks for your reply, Jeff, and I hope all plaquenil users will chime in!
I was on mepron for about 6 mths for babesia. Unfortunately, my stomach just couldn't handle it, so I don't know what the result would've been. I do know that because of the problems with my stomach, I can't do AP unless I get it IV. The cheapest I can find is $100/IV, with 5-10 days being necessary, and who knows how often. Add to that the cost of driving over 5 hrs to get to the doctor and hotel/food costs, and this is just not an option right now. Believe me, I have jumped thru every hoop I can think of to try and get these IVs. Meanwhile, I need to function and prevent permanent joint damage.
Many of us would love to just be on AP, I don't think that anyone here would argue that that is the best possible treatment, but each situation is different. In a perfect world, AP doctors would be as easy to find and get to as any other specialist, but that is just not the case. Also, we could find out immediately exactly what abx and their dose would be necessary to treat everyone, but again, that's not possible. For those who have to delay their treatment or wait yrs to find the right abx or see improvement, I would love to hear options, esp when facing permanent damage or going on disability, or going into deep debt to pay for treatments. It's wonderful to hear success stories to inspire us, that's why we're here, but I'm so thankful for the support I continue to receive even tho I'm not on AP at this time.
Lizz, I'm so glad that you can work at home. I hope you find the right abx soon, 2 yrs is a long time to wait for results. I can't think of any other dx and treatment where a patient would be expected to wait that long for results, but it is the nature of the beast in our case. If more AI dxs were immediately life threatening it wouldn't be an option, but as we know, many people do die from these dxs anyway. Just because a dx isn't life threatening doesn't mean that it isn't life stopping, tho, and these dxs are notorious for what they cause us to lose in the form of careers, family life, social life and more. They are also notorious for causing one person to respond quickly and wonderfully to a specific treatment while another finds no relief; this is true for every treatment out there, not just AP. Because of this, Lizz, like you, most of us have to travel a pretty curvy road back before we're well. Hang in there!
Hi Lizz,
I took plaquenil right at the beginning for babs, too. It was originally designed for malaria, a protozoan infection like babs, so my LLMD was very happy for me to try it, especially as it's also an effective borrelia cust-busting med. I was happy to try it, hoping it would bring down some inflammation! I stayed on it for about 5.5 months, but had to come off it due to visual disturbances I was getting (blind spots with arc-like, jagged flashing lights lasting about 15 mins)…aura migraines that stopped as soon as I stopped the plaquenil.
To be honest, I don't know if it was doing all that much good for me, inflammation-wise, because when I came off it (cold turkey, which isn't usually advisable with any DMARD), I didn't notice any difference in pain levels at all. So, I put my gradual improvements down to the abx therapy.
I think plaquenil can take about 3 to 5 months to fully kick in from what I've read of other people's experiences on it, so being on it two months may not be a really good gauge of its effectiveness. There again, if you come off it now and feel worse, it may have been helping more than you realized. JMHO, but I'd probably give it at least another month or so before switching out to a different anti-babesial treatment. As Jeff said, Mepron is excellent and my doc really espouses its virtues. Flagyl or, perhaps safer, Tinidazole, is another option.
Lizz, I can totally equate to how you feel. and worse for you with a young one….Lyme knees are the worst!!!!!!!!!! :sick: Absolutely crippling pain. It's taken nearly 2 years and 8 months to get my left knee to normal size (though looks a bit like a deflated balloon) and my right knee still has some residual swelling (probably thickened synovium from looking like a grapefruit for so long), but little pain now. In all likelihood, I have some knee damage that I will just have to live with, but this was the risk I chose to take and I have no regrets. I feel pretty well again and all my joints are functional….that generalized malaise, fatigue and pain everywhere feeling, all gone, and only very occasional minor aches elsewhere. My legs don't feel like lead anymore. This has been a looooooong journey and it feels interminable when in the thick of it, I know. :crying:
Are there any anti-inflams your doc can prescribe in place of the pred? Though giving (that thanks be to God and all the stars in heaven!) temporary relief, pred use in Lyme has the unfortunate side-bar in that it tends to prolong recovery times. I know you probably already know this…but if you can get that inflam down without suppressing the immune system, the abx will work so much better.
I hope you find the best answer for you soon!
Peace, Maz
My husband was on plaquenil for about a year and a half. Supposedly, it can work as a cyst buster and also can help with babesia. Was it a wonder drug? I don't think so. It's best in a combination with other antibiotics. If you think you have babesia, you'll need something like malarone or mepron. The plaquenil isn't strong enough.
Linda, you are so right about how these diseases rob you of working, social life, etc. I never go to lunch with my former workmates anymore and our husband and wife social life is gone. I see my kids, that's about it. I could go on and on about it, but what's the point? I'm still trying to “seize the day” and keep going. I so much want that for you too, that we both get out of this horrible mess. Thanks for being here for me!
Maz, what the heck, I'll give it one more month. I've tried most of the anti-inflams except for celebrex because of the cost, but I may try it for a short time to see if it does anything. Thanks for your support.
Parisa, I'll talk to the doc about mepron. If I'm going to do a lyme protocol I might as well do it optimally and give it a full chance. Thanks!
We may not live life like a Mountain Dew commercial, but we get up every day and do our best; there is loss tho, that's for sure.
btw, I was on plaquenil about 20 yrs ago, for about 6 months, but experienced the same problems as Maz. I stopped taking it, but I was already experiencing a spontaneous remission in which I was able to stop all meds and had no symptoms whatsoever, this lasted 5 yrs. It does happen! I honestly don't think it was the plaquenil, I was also on indocin and prednisone the time. Just another quirk that makes treating these diseases so difficult, we get better and so we and the doctors think it was a certain med or supplement, but it really just went away on it's own; sadly it also comes back on its own.
Interestingly, my new rheumy told me that one couldn't get vision problems from plaquenil until one had been on it for a few yrs. But I know it wasn't the prednisone or the indocin, and the vision problems stopped when I dc'd the plaquenil. Maybe Maz and I just have the same weird DNA (probably alien :sick:)! Anyway, nothing like taking 3 posts to answer your original question, and with no good information at that. 😕
[user=11]linda[/user] wrote:
Interestingly, my new rheumy told me that one couldn't get vision problems from plaquenil until one had been on it for a few yrs. But I know it wasn't the prednisone or the indocin, and the vision problems stopped when I dc'd the plaquenil. Maybe Maz and I just have the same weird DNA (probably alien :sick:)!
:roll-laugh: Linda, you've got me hooting out loud again! There's the old G'Linda we all know and love. 😀 Thanks for the late night chuckle.
Peace, Maz
PS Thanks for sharing that you got the same vision symptoms, too…I thought I was the only weird one around here. Guess we all metabolise different drugs in different ways and, with lyme green :sick: blood flowing through my veins and being a “green card-holding alien” to boot that definitely adds substance to your alien theory. 😉 Hmmm…the plot thickens.
Maz,
Glad I could make you laugh.:P It is weird that we had the same vision problem, and that your mother and I both have PsA. Maybe we should explore our genealogy and see if we've got some relative in common!
On one of the occasions when I had the weird migraine and blurry visual field (it looked like when they pixelate out someone's face on tv, but only in the upper left quadrant of my visual field), I had a vision test where I had to look at a blank, black background and tell them when I would see a pinprick of light that they would cause to appear at random points in the background. I could tell when they started the test that they thought I was faking or exaggerating. Then they got weird looks on their faces and ran the test a second time, and when they got the exact same results they were baffled. It was a completely random kind of test, even they didn't know exactly which lights would come on at any certain time, so there was no way to “cheat”. The result each time was that I'd missed every single light that appeared in the upper left quadrant of my field of vision. It was very strange because, being a typical ER, by the time they actually did the test my migraine was gone and the blurriness had all but dissipated. Weeeiirrd. They had no explanation, and told me to see a neurologist if it happened again. That's when I decided to stop the plaquenil. I had 1-2 more very mild episodes, but none after that.
I was told at that time that those are not the kind of visual problems associated with plaquenil, but if you look up the side effects for that drug, that's exactly what is described. They also say that they are reversible if the drug is dc'd. And conflicting with my new rheumy, apparently these side effects do occur in the first few months, and are more rare after one has been on the drug for a while. No wonder we feel like we're going in circles with these meds and doctors.
I was on plaquenil for about a year but didn't think it did much, except give me cause to have eye exams every 6 months. I went off it cold turkey and didn't notice any changes. Prednisone was the only drug that I thought did anything.
I can empathize with those who have young ones…..as mine are 3 and 5 now. I remember having to go down the stairs to get the bottle as if I was a toddler, not alternating feet on each step, because my knees were so swollen and stiff. I felt as if I had lead weights in my body and could hardly move. Diapering, opening baby food jars, everything was difficult. Life is so much better now and I am so grateful for finding AP via RBF and trying it…..it has not only saved my life, it has returned me back to living.
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