[mudbug03z]

Hi everyone,

I'm new to this whole thing. I live in the United States, in Florida. I've had Lupus for 4 years, diagnosed, they think I've really had it for about ten years, though. I'm having some complications and would like to know about medications yall have been on, that have and have not worked. Plaquenil makes me throw up violently. It is so horrible, but that's all my doctor wants me to use. Right now, I'm having problems with blood in my urine, swelling in my legs, ankles, feet, hands, and my hips and knees hurt. I'm sure this is very common with all of yall, but I ACHE ALL OVER like crazy. It's driving me nuts! I also have extreme fatigue, I never feel well rested, even after hours of sleep...but here recently, I haven't been sleeping for more than about an hour and a half at the time. It's miserable. Is there anything yall know of that will help with any of this? I take Lyrica also, and it is THE ONLY THING that I can even tell is helping. I had to quit the Plaquenil for a little while b/c I just had back surgery...and well, with Plaquenil making me throw up...it hurt too bad to throw up post-surgery. The last day I took it, I threw up 23 times in that one day. You have NO IDEA how bad it hurts to throw up when you've just been cut from your bra strap to your butt crack. So...no Plaquenil until I can heal a little more. I try my absolute hardest not to complain about any of this stuff, and I'm not trying to whine, I am just wanting to know if anyone can help me with what might work and help me out some. Since I have had it for a while, any of you who are new, I might be able to help yall with things I've already tried. Also, if yall could let me know a time yall are usually on to chat, that would be helpful.

I hope all is well with everyone...God bless!

 

[BigSis]

Hi and welcome muddy

I cant see that a medicine that has you throwing up that much can be that effective. How on earth can you maintain a therapeutic blood level if most of your dose in in the toilet:sad:

Some of our fellow lupies use another antimalariel called Mepacrine Or Quinacrine instead of Plaquinel to good effect. I'm sure one will be along soon to advise.
Also the blood in urine plus swelling is significant and needs attention.
I hope you are seeing your docs sooner rather than later.........i feel you have a bit of a way to go before your disease is brought under control.

Very best of luck to you. There is a wealth of information and good support here.

 

[sheila t]

Hi and welcome to the site.

I been on Plaquinel 18 years, lucky I have had no side affects from it. I am so sorry you having a hard time with it

But I really think you need to get the blood in urine sorted out.

Looking forward to getting to know you.

Sheila

 

[Fairy]

Hi muddy,
Your lupus obviously isn't under control - I think you need to be banging your doctor's door down to try a different drug to plaq. If he won't give you anything else you need to try a different doctor!

There's quite a few options for you to try - the alternatives to plaq already mentioned, then steroids and/or the immunosuppresants. The side effects can be a bit scary, but in my opinion it's worth the risk to get the disease under control.

Good luck!

 

[Katharine]

Hello and welcome

You poor thing I'm horrified!! How can you be left on plaquenil if it is clear that that is the cause of your reaction? I just don't get it...

For most people it is the baseline drug for lupus and is also a very safe med, however, there will always be someone who is intolerant.

There are lots of other treatment options out there and it is clear that your lupus is not under control and your rheumy should be trying them. Obviously, it will be a case of trial and error to see what you can tolerate but one person is not another and you should be able to find something. After all, you tolerate lyrica and some people don't.

I would have thought that your rheumy would consider trying alternative anti-malarials or maybe some of the immunosuppressant drugs as you need something that is "disease modifying". The immunosupressants can also cause nausea but as I said, they may not in you. For one of them there is also an injectable form which might work if you're reacting too much to another form.

I would agree that you should be banging on the rheumy's door and demanding action. If he/she is not prepared to look into other treatment options then you need a new rheumy (you can ask for recommendations for a lupus specialised rheumy here in the "find a doc" section).

hugs to you :hug:
Katharine

 

[dixy]

Hi muddy

How awful for you. Ive been dx 3 years now and tried awhole lot of meds before They found something to work. I feel as if I have slept 2 years of my life a way. The pain was unbearable that I put up with It wasnt until I was on my last legs so to speak. That the pain nurses came and sorted me out with various painkillersTO HELP ME SLEEP AND TAKE THE PAIN AWAY AIT WAS LIKE A MAGIC WAND HAD BEEN WAVED OVER ME(annoyed I had had to put up with it ) ice packs for my knees and a heat pack for my shoulders. Get back to your rheumy pester them. I can remember waiting 2 weeks till my next appointment, seemed forever. Now Im a bit better I let them know straight away I need more treatment (I cant wait)
Meds Ive tried Mycrophenolate, cyclophosphide, sirolemus, 1000mg steroid IV
70mg prednisolone, Isloproste IV, Retuxamab IV 6 monthly.Last resort med CAMPATH nearly killed me ( but Im still here)
Its horrid feeling like some poor old frail lady and the feeling of being run over by a truck. theres help out there just go get it

Big GENTLE hug
dIXY

 

[spellbinder]

welcome

greetings and salutation :wavesmile:

mudbug...what a great name . i'm so sorry you having such a bad time at the moment. i had issues with plaquinel. i stopped but got worse so my doctor switched to chloroquine which i understand is the same as plaquinel but for some reason doesn't affect the same as the plaquinel, go figure eh' :wink2:. have they put you on any real pain meds for the pain?? i take several different meds for my treatments that include sleep, chlorquine and IVig for disease control, soma, trazadone and gabitril for sleep and dilaudid and fentanyl patches for pain...and just for giggles i take a tylenol pm.

like the others i would pester the heck out of your doctor or find another. no one should be or feel so miserable. there is a treatment plan out there unfortunately you have to be proavtive and alot of kicking

anyway just really wanted to welcome you...:welcome:

hugs and kisses

 

[KarolH]

Wanted to extend a warm welcome to you and I hope you like it here as much as I do. I also hope they get your meds and lupus under better control. All of the throwing up is not doing you any good and certainly can not help much if your nutrition numbers start to drop.

Talk with your doctor and let him know what is going on. Your meds need to be changed and I am sure you will find better results once this is done.

Join us in the chat room sometime.:wink2:

 

[keebler]

Hi Mudbug,
Welcome to the lupus forum. It is nice to meet you.

What other meds are you on at the moment? Does your rhumey have you on NSAID's? (non-steroidal anti-flammatory)

As far as pain control. If you are not sleeping good it turns into a vicious cycle. When you don't sleep your pain levels go up and then you end up chasing your pain. I hope you find some relief soon.

Love,
Lyn

 

[lazylegs]

Hi Mudbug,

Welcome to the site. You can read general information about drugs used for lupus at the following site: http://www.uklupus.co.uk/meds.html.

There are also medication reviews available for some of the medications http://www.thelupussite.com/forum/forumdisplay.php?f=68.

The Medications Forum is also another area to search through. People ask questions and share experiences about the medications they are on. If there is a particular drug you would like to ask about you can do a search and the threads for that drug will come up.

I don't know how you have put up with your present situation for so long. I hate vomiting so much there would be no way the doctor would get me back on the same medication. Hopefully you can convince your doctor to find an alternative drug for you to try.

Take care,
Lazylegs

 

[mudbug03z]

Thank you for all the warm greetings! And update!

First off, thank all of you who replied to me...it is so nice to know that I am not alone out there. Especially with the doctors in my area not being quite up-to-par. I am on my 3rd Rheumatologist right now, actually...and unfortunately, I don't live in a large area, so the only ones around, I've seen...and two of them are in the same office. Every doctor I've tried has been wanting to keep me on Plaquenil, even knowing the side effects. When I had my first back surgeryu, I had nausea patches to wear and they worked MIRACLES...so I asked my Rheumy about getting those to help get the vomitting under control....he said he "doesn't believe in those". I am currently taking Lunesta to try to sleep, but it is not working at all anymore, and it used to work WONDERFULLY. Now, for some reason, it doesn't even make me drowsy. The only medication that I could definitely see positive results from (at the time) was high-dose steroids. However...they believe that due to me being on them for a prolonged amount of time, as well as Methotrexate, that is what deteriorated the bone in my back, which in turn, caused me to have my back cut open from my bra strap to my butt crack to fix everything. So...I'm a little scared to even mention that again, b/c let me tell you, back surgery is no fun. Not to mention, I don't know how much more of this my work will handle. I have to see my Rheumy at least every 4-6 weeks, and now missed 12 weeks for the first back surgery, and am now off for another 12 for this one. Not to mention when I'm too sick to go into work, which hasn't happened often. Don't get me wrong, I've been too sick a lot of times, but I can't afford to be off and don't want to get laid off or fired, so I'm kinda stuck. They've been very understanding with the back surgeries, thank God, but I don't know how much more understanding they will be.

Currently, I am not on anything for pain, other than Ibuprofen, which doesn't do a lick of anything for me. My doctors try to keep me away from a lot of things that are hard on my stomach since I have IBS and ulcers. As far as any pain patches go, I'm pretty sure my doctor would say he doesn't believe in those either. Unfortunately, I don't have much luck with the doctors around here....they all have the same answer...take Plaquenil, when they don't understand how sick it makes me. I took it for a little over 2 years, I believe, and the side effects got SOME better...it went from throwing up all day long, everyday, to throwing up 2 or 3 times a day...still not fun...plus, I was extremely nauseated the entire time. It was miserable. Plaquenil also gives me bad headaches, and they put me on anti-seizure medication to prevent that, and it worked pretty well, but the combination of the two made me retain water like CRAZY....try 40 pounds of water weight on a little 105 pound person. My skin was shiny it was so tight! As soon as I quick taking it all, I have dropped every single pound of all that water weight. Is there anything any of yall have taken that has helped with pain?? The Lyrica I'm on helps some, but only enough to make me be able to crawl out of bed. It takes the edge off a little, but that's it.

I'm not really sure what to do as of right now. I'm on the cancellation list to try to get in to see my doctor sooner, but I know he'll just complain at me for not taking the Plaquenil, that's what he did the last time. I have tried the generic for Plaquenil, as some people tolerate it much better, but it had the same awful side effects for me.

Do any of yall live anywhere near by? I live in Florida. Just curious if any of yall have heard of any good Rheumys around here....everyone I know who has seen the ones I have, have had the same luck. They come in for less than 5 minutes, tell you to keep taking Plaquenil and come back in 4-6 weeks.

I have GOT to get something resolved before I lose my mind. I get to the point where I hurt so badly that I fidget non-stop. I can't get comfortable, no matter what I do. I ache all over extremely badly, my hips, knees, and feet KILL me all the time. I have a fever every day, that fluctuates between 101 and 103.7, have headaches non-stop, rashes all over my body, my hair is getting very thin, I have the GI problems I previously mentioned, and extreme fatigue. I can't sleep hardly any, I wake up about every hour AT LEAST...and even when I stay in bed all day (because I just CANNOT drag myself out), I still feel completely drained. I try to walk about 2 miles a day to prevent stiffness, but it's hard to do that when I'm so exhausted and hurting so bad all over that I wanna cry.

Also, is there a certain way yall would go about asking my doctor to try me on new meds? Any time I do, he jsut nods his head and grunts a little, but that's the end of it. AT LEAST he put me on Lyrica, the other 2 wouldn't. So...maybe this one will be a LITTLE better, even though he's the one who "doesn't believe in" the nausea patches. We'll see. I'm HOPING there will be a cancellation Thursday, the 23rd, b/c I have to drive a little over an hour to see any of my doctors, and I have a check up that day for post-op for my back surgery...so I'm hoping I can drive over there just one time. That would be nice. So....IF I can get an appt that day, any suggestions on things I should bring up to him would be GREATLY appreciated. I'm taking a list of the medications yall have mentioned and will ask him about it...but anything else you can think of, let me know, please!!

Thank yall again for the responses! :bigsmile:

LOVE!

Mudbug
(P.S. Spellbinder, mudbug is my handle I use on CBs when I run dogs during hunting season...lol :eat

 

[Pink Pearl]

Hi and welcome to the board. I also like your name!

First and foremost.......you need some anti nausea meds. Then, you need to talk to the doctor about diuretics to control the edema in your legs. It is not healthy for your systems to be in such extremes. fyi: there are two types of diuretics - potassium reducing and potassium sparing. They both work on different areas of the kidneys. With the first you need to take a potassium chloride replacer with your diuretics. I take one K-Cl for every 1 diuretic pill I take. This has kept things balanced for me for nearly as long as I have been dx with sle - 20 + years.

I have also found that I sleep much better if I use several egg-crate mattress pads on my bed on top of the mattress. With fibro having sore points, this relieves the pain of those points and lets me sleep.

I also agree that if you are not getting help from your doctor, then interview for a new one. You and your doctor need to work as a team.....not a dictatorship. If he/she won't work with you, then you need a different doctor. I would far rather train a doctor that I can deal with, then suffer from the dictatorship of a doctor who refuses to see us as members of a team.

I would also suggest you keeping a journal/diary of your symptoms for you to take in and go thru with your doctor. These are a good view into your day to day living. If it is not livable, then you and your doctor need to revisit the important things to you.

Good luck and keep us posted on how you are doing.
Sally

 

[Fairy]

I'm still spluttering at the thought of a doctor leaving you to vomit for two years with no help - how can he not believe in anti-nausea medication???The mind boggles... A good drug to look into might be azathioprine, if you haven't tried it yet. Lots of people take it and find it helps a great deal.

 

[dixy]

hi muddy

Pain stuff Ive tried dont know if it would work for you so here goes Phentinol patches come in different strenghs. Also I was on oramorph could take every 2 hours when I was at my worst along with high strengh paracetamol.Amptitriptaline at night to help sleep and for the pain

Have you tried fresh ginger in hot water might help with the sickness a bit

Hope you get sorted soon
Dixy

 

[LolaLola]

Dear Mudbug,
Hello and Welcome,
You are certainly having a terrible time. Not all Rheumatologists are experts in Lupus and it sounds as if you have been unlucky in the extreme.

I am wondering if you have tried Ginger for your nausea? Ginger Ale is an easy cheap way to try it.

It would probably be better if you posted separately looking for recommendations on a Doc. in your area. There is a separate thread for that and you may find people notice it more there.

Thinking of you, I am in the UK so no help with Doctors!
x Lola

 

[spellbinder]

me again

hi again :wavesmile:mudbug

i'm just blown away with how bad and unsymathic some doctors can be. i almost move to fla. east coast but when i looked for a rheumy there were like four. so i decided to stay here in va.
have you asked this "genius" why he won't change your medication?? and have you asked for pain meds. there is a pain scale that most doctors use, they have little happy or sad faces associated with a number, pain level 1 is and then go sadder and sadder til you get to 10 :cry2:. i would throw back the question WHY with everything he says. my pain level was at 10 when i finally got my current pain meds. also anti-nausea meds come in pill form and suppositories (eew ) and they work as well. i have had alot of experience with nausea. the pills make me tired so when i take one i lay down and stay real still and fall asleep so i'm not nausea while waiting for it to kick in

i'm truely sorry that you are having such a difficult and miserable time right now. try to go to a quiet place, burn a candle and play some soothing music and relax. then come back here and rant away...:wink2:

feel better:there:
hugs and kisses :foryou:

 

[onetay]

mudbug,
Hi and welcome to the site. It does sound like you have had a time of it. I am in the usa (Illinois). It is ok to whine here we all understand and we all do it ourselves from time to time. Here no one judges you because we have been there or someone there.
As for the medicines it is hard to say what will work for you or what is best for you to try. There are a number of fluid pills that can help with the swelling as I take 2 different one a day. The Joint pain can be helped with medicine like mobic and pain pills. You have to find a doctor that is willing to work with you to control these things or find a doctor that is.
As for the sleeping problems we all have them and most of us have just learned how to get as much rest as often as we can. For many of us including myself that means many naps a day. I like to joke about I must of been a cat in another life as I have their sleep habits lol. Your sleep may have changed due to a number of things or all of them and as things get back to normal for it will go back to what you had before. You have had surgery which is painful and on top of that you have been sick from the medicine, and the joint pain. One or all of these can and do have an affect on your sleep and the quality of the sleep you get. Once some of these things start to get under control then see if things with you sleep start to return to normal.
I do hope that this helps in some small way for you as it sounds like you have a full plate already. I hope you start to feel better soon. As for when people are in chat room it is off and on all day long and night as there are people here from all over the world. I try to be in the room in the morning or in the evening our time. I advise you to go in the room under floating and that way you can still post and as people see you are in there they will drop in and say hi.