I take Hydrochlorothiazide and prednisone for flares, but this time neither are working.
My flare started last Saturday night and is in overdrive.
I know I over did Saturday, but I was on a college campus visit with my daughter.
I am also noticing symptoms I hadn’t had before. My Rhuemy doctor is out until Monday, any suggestions on what to do???
I am out of spoons!!!
I wish I did have advice for you, but I was just diagnosed a couple of weeks ago and I am still trying to ramp up on the meds. I just wanted to offer you support. I don't have very many spoons, but if I could transfer a couple to you, I would. ; )
Hi FastPitchBran;
Wow you are REALLY newly diagnosed! Just 6 weeks or so.
Hey there, your hydrochlorthiazide is just a water pill for when you retain water. You can take ibuprofen for the pain until you talk to your Dr.,who may raise your prednisone dosage or offer something else. I'd consider Plaquenil. Google it. It's so much safer than prednisone, but even that has side effects. There are also 3 new lupus meds, Savella and my lupus fog has me right now. Can't remember the other 2. They are all really strong, with side effects worse than the disease, and I wouldn't take them unless I was in kidney failure or immenent danger of losing my life...but they are there for those people. I've had this for 30+ years, and you pretty much can only do things like hot baths, heating pads, someone massaging you, other home remedies for the pain. Even doctors don't seem to know much about lupus. 99% of what I learned, I learned online and I have had to teach my doctors. They don't seem to have the time or desire to research things anymore. It's a painful disease, and we have to stay calm and try to deal with the pain most of the time on our own. So many times serious pain sent me to the E.R. but when they could do nothing, I learned I have to stay home with that severe pain. If the pain is unbearable, you can go to the E.R., then on Monday try to call the Dr. as early as possible and ask to be seen that day so you can get some pain meds. There's one that's as strong as an opiate for most people, called Tramadol or Ultram. He may let you have some of those for the worst pain. Doesn't work at all on other people. We're all different, which is why there are so many different meds. Are you still on methotrexate? That's supposed to help with pain and inflammation. I'm sorry that you have lupus, sorry for what you're going through. It gets better as you learn to deal with it.
Best wishes, Sheila
Artchick and fastpitchbran, you two should get to know each other. You were both diagnosed just within weeks of each other, and you could understand each other. I get new symptoms every day, but can't go to the Dr. every day, and even if I did, they don't know about every symptom anyway. Lupus just decides to attack different areas of our body each day, so it varies from person to person, even from hour to hour. I can have one set of symptoms in the morning, others in the afternoon, it changes every 4 hours or so...but some stick around for up to a month, then move on.
May you each gain much knowledge and other virtues through this battle. Illness seems to be a fast track to learning longsuffering, compassion, patience, courage, and every other character trait that is good.
Sheila
Your Rheumatologist has a Dr covering for them call & speak to the Dr on call. I've also been in a flare for 3 mos due to decreasing steroids. My Dr gave me a diuretic, I gained 20 Lbs in a week. Hopefully, when I start on IV Rituxan next week I'll go into remission. The heat in So Ca is making me sick... You might need to increase dose of Prednisone. Are u in immune suppressives??? That would decrease your requirements for Prednisone. If you go down to fast on Prednisone & your adrenals aren't producing any cortisone u can go into a crisis. That's what happened to me. It's like what happens with Addison Dx & can be life threatening. Good Luck hope u feel better soon...
I agree with Ann a and shelia. You should def talk to your doc regarding plaquinel. That was the first med I started with. I then got put on imuran (an immuesuppresant). After those werent working they started the prednisone but very low! I’m only on 5 mg a day. They steroids if anything made me worse so they just upped my imuran. I’m sorry that your not feeling well. I’m coming up on my 1st yr anniversary of my diagnosed date and it sucks. I won’t sugarcoat lupus at all but like the other girls said its different for everyone. After being diagnosed and getting my meds together and getting enough rest I felt good! Like run around with my son daily, go out with my girls on the weekends fine. And then bam! Out of nowhere sick again. So you never know what your gonna get. I’ve been in pain daily for a couple mths. They put me on pain meds which have helped me have a great quality of life for now. I have the lowest tolerance for pain( idk how I did childbirth at 15). I usually go to the er when it gets unbearable. I swear I’m going to get a rewards card there soon lol! so ask your doc of they can change your meds and give you pain pills for an as needed basis. I wish you and artchick the best of luck. It’ll be hard at times but just remember you may have lupus but lupus doesn’t have you! Live each day to the fullest! And this site is great! For good days and bad days… Everyone is sooo supportive and they actually know what your going through which is a bonus… Hope you feel better!!!
I wish I could help you. I have been in a flare for over a year now. I have energy, but the pain and swelling is what gets me down. Usually a mega dose of prednisone helps me, but as soon as I am off of it, the pain comes back.
Hi FastPitchBran,
Sheila as is given some good advice where plaquenil is concerned a none steriod drug also but you need to see your specialist about it first to see what they thinks the best option, although it's a good drug and where sheila says ibuprofen, there's also paracetamol you can take.
What severe symptoms are you having at the moment which are troubling you so much??
Love Terri xxx
I to was also diagnosed recently (March 9th). Thanks for the support! 
artchick said:
I wish I did have advice for you, but I was just diagnosed a couple of weeks ago and I am still trying to ramp up on the meds. I just wanted to offer you support. I don’t have very many spoons, but if I could transfer a couple to you, I would. ; )
I take Plaquenil and Methotrexate. The MTX does nothing for the pain, I take
4 tablets once a week. During this flare I have developed acid reflux which is something
I have never had. I have an RX for Hydrocodone but it isn’t helping either.
I am trying to avoid the ER if at all possible, the cost of ER visits are too high. Thanks for the support and info.
Sheila W. said:
Hi FastPitchBran;
Wow you are REALLY newly diagnosed! Just 6 weeks or so.
Hey there, your hydrochlorthiazide is just a water pill for when you retain water. You can take ibuprofen for the pain until you talk to your Dr.,who may raise your prednisone dosage or offer something else. I’d consider Plaquenil. Google it. It’s so much safer than prednisone, but even that has side effects. There are also 3 new lupus meds, Savella and my lupus fog has me right now. Can’t remember the other 2. They are all really strong, with side effects worse than the disease, and I wouldn’t take them unless I was in kidney failure or immenent danger of losing my life…but they are there for those people. I’ve had this for 30+ years, and you pretty much can only do things like hot baths, heating pads, someone massaging you, other home remedies for the pain. Even doctors don’t seem to know much about lupus. 99% of what I learned, I learned online and I have had to teach my doctors. They don’t seem to have the time or desire to research things anymore. It’s a painful disease, and we have to stay calm and try to deal with the pain most of the time on our own. So many times serious pain sent me to the E.R. but when they could do nothing, I learned I have to stay home with that severe pain. If the pain is unbearable, you can go to the E.R., then on Monday try to call the Dr. as early as possible and ask to be seen that day so you can get some pain meds. There’s one that’s as strong as an opiate for most people, called Tramadol or Ultram. He may let you have some of those for the worst pain. Doesn’t work at all on other people. We’re all different, which is why there are so many different meds. Are you still on methotrexate? That’s supposed to help with pain and inflammation. I’m sorry that you have lupus, sorry for what you’re going through. It gets better as you learn to deal with it.
Best wishes, Sheila
I do take Plaquenil and methotrexate. I have edema, pain in all my joints, severe acid reflux,
Pain in my left side, migraine that getting to the point of not being able to manage it
on my own, a wet cough that comes and goes, also I have had it coming out of both ends.
I have a good friend who is an ER nurse and a fellow lupie but she lives in Alabama and I am
in Missouri. She has been helpful, but right now she is also in the midst of a flare.
Tez_20 said:
Hi FastPitchBran,
Sheila as is given some good advice where plaquenil is concerned a none steriod drug also but you need to see your specialist about it first to see what they thinks the best option, although it’s a good drug and where sheila says ibuprofen, there’s also paracetamol you can take.
What severe symptoms are you having at the moment which are troubling you so much??
Love Terri xxx
I'm glad your Dr. was compassionate enough to give you hydrocodone. Sorry it's not working. There are other things you can do, like I mentioned before, that might take the pain down a level or 2, such as taking ibuprofen with the hydrocodone, and you already know about the hot baths, heating pads, etc. This is a very tough illness. I have a pain cream that helps enough for me to notice a xhange in pain level. It's prescription, and no smell. It has properties of anti-inflammatory, muscle relaxant and a bit numbing. It's called diclofenac 10% cream. Your pharmaxist mixes it for you. They pass it out to everyone on the orthopedics floor, and people continue to get it refilled because it works so well on any pain except abdominal pain. Works for mucles, tendons, cartilage, connective tissue and nerve pain. If you want to try something more natural, a lot of people have told me how much Arnica gel has helped their pain. I buy natural supplements at www.iherb.com and www.vitacost.com. If you see something you like at iherb, I can send you a code so you'll get $5 off your order.
rest rest rest
oh, and tiger balm is a great topical pain buster too.
Prescription: tiger balm on as many places that hurt
pain relievers
rest rest rest
restful binaural music (use headphones for best effect)
EMDR for20 min (may be split into 2)and if that is too much, break the time down to fit your life
pray pray pray and offer the pain up in reparation for the errors of the world
And: remember we love you and are praying for you
I had a doctor's appointment today. She is sending me to an infectious disease doctor to test me for Lymes. She also upped my methotrexate meds from 6 to 7 per week. Pain my leg and shoulders can be unbearable at times. I'm completly off steroids and the plaquilnil for a while. I hope I don't have Lymes.
Ann, I hope you noticed that it is Sobby that had the Dr. appt. and is getting tested for Lyme's, not FastPitchBran who started this discussion.
Sobby, I am glad you are off those meds for a while. Prednisone causes muscle pain, and plaquenil causes stomch issues. Glad you have a Dr. who is doing something!!
kind thoughts, Sheila
Hi there !!!,Well what i do whenn i run out of spoons is just , REST and don't think about NOTHING along with doin NOTHING !!! Now that only works if you apply it to everything !!! It's kind of like going totally BLANK .... LOL You have to remember we Living with LUPUS , we also have needs and family members seem to 4get that it is us who can't do as much anymore !! But we try to do what we can when we can , but also have to break as needed , so REST my friend and don't do nothing until you can seee the doctor and hope that you feel better ... Beverl L.
Rest will help you heal FastPitchBran.
Hello FastPitchBran,
Well my dermo told me that plaquenil amd methotrexate work well together and he's one good Dermo and i'd recommend him to anyone in the UK.
I know we get side affects from the drugs well most of us but concerning severe acid reflux have they tested you for sjogrens Disease as that can cause that issue also besides plaquenil according to how long you've been on it with some people also...it gave my sjogrens an added bonus and i did feel bad.
Well i know your friends good and lives in another area but i do suggest getting medical help reagrding a wet cough and also coming from both ends as that does'nt sound right to me.
Please keep we updated besides resting...i wish you all the very best ((Hugs Terri)) xxx
fastpitchbran said:
I do take Plaquenil and methotrexate. I have edema, pain in all my joints, severe acid reflux,
Pain in my left side, migraine that getting to the point of not being able to manage it
on my own, a wet cough that comes and goes, also I have had it coming out of both ends.
I have a good friend who is an ER nurse and a fellow lupie but she lives in Alabama and I am
in Missouri. She has been helpful, but right now she is also in the midst of a flare.
Tez_20 said:Hi FastPitchBran,
Sheila as is given some good advice where plaquenil is concerned a none steriod drug also but you need to see your specialist about it first to see what they thinks the best option, although it's a good drug and where sheila says ibuprofen, there's also paracetamol you can take.
What severe symptoms are you having at the moment which are troubling you so much??
Love Terri xxx
Fastpitchbran College campus tour is soo exciting, I went on one with my daughter, but I remained very low energy. I find myself just dealing with the pain and fatigue associated with Lupus, because prior to the diagnosis, so many doctors would send me home with a note stating my symptoms were asthma related (which I do not have says my pulmonologist) that I became frustrated and very discouraged. So, I would only go back to the ER if I can't breathe or my chest feels weak, heart is racing or some other indicator. Not, sure if that is good advice, but reading the responses it might be. When I am in situations that are high energy and stressful, I plan my responses to these stressors accordingly. I don't get upset or excited, I just breathe deep and move on.
Recently, I went to the satellite health care place near my home after my stomach was providing movements quickly and I had bowel problems. I was sure it was a flare, but the doctor said no its a virus. Either way, the only remedy was fluid and rest. Write down all your symptoms and the progression of symptoms over two or three days for the RA doctor to compose and track along with you.
Hopefully, the college campus tour was fun and just remain positive. We are survivors.