I feel for you, and everyone else here, including myself. LOL! I just quit taking the Prednisone, and am taking natural water pills, without caffeine. (I love my tea, so got some without the caffeine, so I could still drink it)
I feel better than I have in some time. I had been on a mostly vegetarian diet for several months now, because meat was giving me horrible acid, to where I thought I would toss my cookies all the time. I finally lost a couple of pounds, which isn't fair because I could stand to lose so very many pounds. I suspect I am carrying around 60#s of water. They call that Lupus Nephritis; when you gain a lot of weight in a very short time. Indicates some sort of kidney problem. I was thinking that with eating veggie, (I do feel better eating a lot of salad) I would lose a lot of weight, as I used to in the past, and maybe then I wouldn't keep so much water in my body, but looks like whatever I do lose, I will make up by taking on more water. :-(
I would be interested in hearing from other people with a similar story.
Mrs. Doolittle said:
Lisa, he's referring to me, Mrs. Doolittle, or Mrs. D...lol
Terri...my appt with the pulmonologist just showed that the only problems I'm having are supposedly related to my weight (I'm morbidly obese). However, 4 months ago I was doing anything/everything I wanted, so I take issue with that. I have an appointment with my rhumie on Friday and I'm going to press him to figure this out. I upped my furosemide (dr. approved) and I'm losing lots of water so I've apparently been retaining a ton of water. I also dropped my prednisone down from 17.5 to 15 a couple of days ago, and that may also be contributing to the water dump.
As for the heartbeat thing, when I was first put on prednisone I had a resting hb of 84. After losing a ton of inflammation thanks to the prednisone, my hb dropped to between 71 and 76. I was thrilled. My body has always loved prednisone. My resting hb is still at 100 and any exertion (like walking 5 steps) raises it to at least 120. There is something seriously wrong here. Last night I was very uncomfortable and was considering going to the ER and then the furosemide kicked in and I'm feeling better now.
I'm not sure now if you've seen Roni's post or even added to the thread but she's doing well losing weight slowly and here's Roni's thred if you've not seen it. xxx
I’m now having problems with plaquenil , having really bad headaches… My doctor says its not the medication, but I stopped taking it for the last 4 days and now no headaches… My doctor says I have fluid behind my eyes…so I’m going to the eye doctor in the morning just to make sure…
I think going to the eye dr. is an excellent idea. How can he not thing the medication is to blame when the side effects clearly state eye problems? Is your Dr. a rhumatologist? I think I'd consider getting another rhumie if this onc continues to deny plaquenil is to blame.
Shae Marie said:
I'm now having problems with plaquenil , having really bad headaches.. My doctor says its not the medication, but I stopped taking it for the last 4 days and now no headaches.. My doctor says I have fluid behind my eyes..so I'm going to the eye doctor in the morning just to make sure..
Sorry to hear about the headaches and go and see your eye doctor tomorrow but plaquenil do cause headaches, as you'll see by this link and please klet we know how things go please.
I'm now having problems with plaquenil , having really bad headaches.. My doctor says its not the medication, but I stopped taking it for the last 4 days and now no headaches.. My doctor says I have fluid behind my eyes..so I'm going to the eye doctor in the morning just to make sure..
Plaquenil is an excellent drug for helping your symptoms but does carry some strong side affects which i know about from the first time round of taking it and it's not a drug that suites everyone and it's had trying to get through to some Rheumo's who wonder listen to you properly.
Mrs.D,
How you feeling in yourself now and did you ask if you'd be left with the (Hughes syndrome) which i mentioned.
Terri...my doctor wasn't able to be around this weekend so his fill-in discharged me. I'll be seeing my regular doctor in about 2 weeks and my rhumie as soon as I feel up to getting there (its a bit of a drive). I'll ask both of them about it, and thanks for the tip! :)
Kathy
Tez_20 said:
Hi Mrs D & Shae,
Plaquenil is an excellent drug for helping your symptoms but does carry some strong side affects which i know about from the first time round of taking it and it's not a drug that suites everyone and it's had trying to get through to some Rheumo's who wonder listen to you properly.
Mrs.D,
How you feeling in yourself now and did you ask if you'd be left with the (Hughes syndrome) which i mentioned.
Your welcome and it's best to make sure when you do see one because if they're to say yes to the syndrome then it's regular bloods took as a rule about every 6mths...to keep an eye on things and i hope they administer asprin after you've finished taking the thinner to make double sure.
My Rheumy put me on generic plaquenil and I take 200mg twice a day just like you are. Let us know how your first Rheumy apt goes : )
Trisha
sunnyworm said:
Hey Terri,
I have recovered from the rash. Yea! I am continuing on the prednisolone til I see the Rheumy. I learned that about 5% of people have a "bad" reaction to hydroxychloroquine/ Planquenil. I also read that some people who are on the name brand instead of the generic (like I was on) do better.
I think part of my reaction could have been dose related. My GP started me out on 400mg/day. 200mg with breakfast and 200mg with dinner. Isn't that too much to start out on?
Mrs D, Back to the racing heart/resting heart rate- I have found that the Prednisolone has raised my resting rate. Yesterday it was 110bpm. Maybe that is keeping your rate elevated too? How did things go with the pulmonalogist? Hope things are going better for you.
Terri....and here I have a problem because I am deathly allergic to aspirin and nsaids, so managing this could be a bit tricky. Ugh. Ah well, we'll see.
Tez_20 said:
Hi Kathy,
Your welcome and it's best to make sure when you do see one because if they're to say yes to the syndrome then it's regular bloods took as a rule about every 6mths...to keep an eye on things and i hope they administer asprin after you've finished taking the thinner to make double sure.
Well if you do ask about it and your allergic to asprin besides nsaids...you should be kept on a thinner for life such as warfarin etc...anything that thins the bloods because they had me on warfarin and now i'm on baby asprin 75mg for life because of my other meds and causing no interferance.
Mrs. Doolittle said:
Terri....and here I have a problem because I am deathly allergic to aspirin and nsaids, so managing this could be a bit tricky. Ugh. Ah well, we'll see.
Tez_20 said:
Hi Kathy,
Your welcome and it's best to make sure when you do see one because if they're to say yes to the syndrome then it's regular bloods took as a rule about every 6mths...to keep an eye on things and i hope they administer asprin after you've finished taking the thinner to make double sure.
I have to have my blood checked every month for at least the next year, so they are going to stay right on top of it. I'm going to ask for them to keep doing that for the forseeable future because its such an easy thing to do to make sure this doesn't happen again. I can also eat more of the foods that promote blood thinning, which is what I'll be doing once I'm off the coumadin.
Lupus...the gift that just keeps on giving. Ugh.
Tez_20 said:
Hello Kathy,
Well if you do ask about it and your allergic to asprin besides nsaids...you should be kept on a thinner for life such as warfarin etc...anything that thins the bloods because they had me on warfarin and now i'm on baby asprin 75mg for life because of my other meds and causing no interferance.
Mrs. Doolittle said:
Terri....and here I have a problem because I am deathly allergic to aspirin and nsaids, so managing this could be a bit tricky. Ugh. Ah well, we'll see.
Tez_20 said:
Hi Kathy,
Your welcome and it's best to make sure when you do see one because if they're to say yes to the syndrome then it's regular bloods took as a rule about every 6mths...to keep an eye on things and i hope they administer asprin after you've finished taking the thinner to make double sure.
I really did laugh just at your comment "Lupus...the gift that just keeps on giving. Ugh" because that's one true statement if ever i've heard one...in all the years i've been bad there's never been a year gone by, where something else as come up, you just never get a break....it's one testing disease i'll give it that.
Well i am pleased your bloods going to be checked regular now that is good news because these issues can just occur back without you knowing and if your not checked, the only way if finding out is if symptoms catch up with you and you end up in hospital...always be persistant now you've had this.
Well if you intend eating the correct foods to thin your blood even better...such a great attitude of something so serious and i hope your days not a bad one.
Thinking of you dearly Terri xxx
Mrs. Doolittle said:
I have to have my blood checked every month for at least the next year, so they are going to stay right on top of it. I'm going to ask for them to keep doing that for the forseeable future because its such an easy thing to do to make sure this doesn't happen again. I can also eat more of the foods that promote blood thinning, which is what I'll be doing once I'm off the coumadin.
Lupus...the gift that just keeps on giving. Ugh.
Tez_20 said:
Hello Kathy,
Well if you do ask about it and your allergic to asprin besides nsaids...you should be kept on a thinner for life such as warfarin etc...anything that thins the bloods because they had me on warfarin and now i'm on baby asprin 75mg for life because of my other meds and causing no interferance.
Mrs. Doolittle said:
Terri....and here I have a problem because I am deathly allergic to aspirin and nsaids, so managing this could be a bit tricky. Ugh. Ah well, we'll see.
Tez_20 said:
Hi Kathy,
Your welcome and it's best to make sure when you do see one because if they're to say yes to the syndrome then it's regular bloods took as a rule about every 6mths...to keep an eye on things and i hope they administer asprin after you've finished taking the thinner to make double sure.
Hi Sunnyworm, (it makes me giggle to type that), I am new Dx Cuteanous Lupus, started Plaquenil a week ago 200mg (advised to take late at night to minimise side effects) so far I'm having NO problems, tomorrow it increases to 400mg. perhaps you could have a discussion with your medical team re dosage & times. Best Wishes to you Kaz
sunnyworm said:
Hey Terri,
I have recovered from the rash. Yea! I am continuing on the prednisolone til I see the Rheumy. I learned that about 5% of people have a "bad" reaction to hydroxychloroquine/ Planquenil. I also read that some people who are on the name brand instead of the generic (like I was on) do better.
I think part of my reaction could have been dose related. My GP started me out on 400mg/day. 200mg with breakfast and 200mg with dinner. Isn't that too much to start out on?
Mrs D, Back to the racing heart/resting heart rate- I have found that the Prednisolone has raised my resting rate. Yesterday it was 110bpm. Maybe that is keeping your rate elevated too? How did things go with the pulmonalogist? Hope things are going better for you.
Have you been upped yet to 400mg daily and how you still feeling with the plaquenil besides?
Love Terri xxx
Kaz said:
Hi Sunnyworm, (it makes me giggle to type that), I am new Dx Cuteanous Lupus, started Plaquenil a week ago 200mg (advised to take late at night to minimise side effects) so far I'm having NO problems, tomorrow it increases to 400mg. perhaps you could have a discussion with your medical team re dosage & times. Best Wishes to you Kaz
sunnyworm said:
Hey Terri,
I have recovered from the rash. Yea! I am continuing on the prednisolone til I see the Rheumy. I learned that about 5% of people have a "bad" reaction to hydroxychloroquine/ Planquenil. I also read that some people who are on the name brand instead of the generic (like I was on) do better.
I think part of my reaction could have been dose related. My GP started me out on 400mg/day. 200mg with breakfast and 200mg with dinner. Isn't that too much to start out on?
Mrs D, Back to the racing heart/resting heart rate- I have found that the Prednisolone has raised my resting rate. Yesterday it was 110bpm. Maybe that is keeping your rate elevated too? How did things go with the pulmonalogist? Hope things are going better for you.