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new lupus flare

  I just went throught the marriage from hell and a lengthly divorce that put a lot of stress on me. He did it to me on purpose because he knew it would cause health issues.
  I have siezure disorder and they kicked up and went out of control (partial complex). I developed atypical migranes (migraines) and ended up with much worse aphasia. While moving out of my temoporary home into the house I had bought I noticed a sore toe I had been nurseing and had been taking a antibiotic for was turning black. I had a friend take me to a emergency room in a larger city a hour away where my specialist are located. I figured i would be staying. They kept me. I was there for five days on IV antibiotics to try to save the toe and clear up a rash all over my body. I had fever of 102 when I was admitted but it went down and stayed down. The toe is still discolored and feels like it will explode but does look better. Finally the rhuematologist put me on 80 mgs of Prednisone and after two days the toe did look better. They let me go home the third day after starting the Pred. I am usually on a matenance dose of fifteen mg of pred a day as well as methotrexate twice a week, Plavix, Plaquenil, Armour and Levoxyl for low thyroid, Mirapex for restless legs, Topamax for seizure disorder,Namenda for memory. Probably something I have forgotten but oh well.  My question is anybody been on this high a dose of Pred and for how long? I have not been this high before and do not see Drs again until the first week in Aug. I had conflicts the last week of the month. I have to take Prilosec or I vomit horribly. I generallyloose weight on Prednisone. Not sure what will happen on this dosage. I had a rib with a mass on it removed last December and have dropped over thirty pounds since without trying. concerning since I am fifty two and not of a age that looses weight effortlessly generally. Through this whole mess I oddly enough met a wonderful man that is supportive of my illness and has become a part of my life. He is interested in learning about lupus so that he can be supportive to me when I need him to be. what a change this will be for my life, he is a true gift from God. I give thanks for him every day. If any other husbands or significant others can give a few words of advice to him I am sure he would appreciate it very much. Thank you for any input on the prednisone dosage and side effects and the support advice in advance.
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First off, congratulations on meeting someone so wonderful and supportive!

I'm sorry you've been having such a hard time, both physically and emotionally.

I have been on high doses of prednisone many times in my life - mainly for my asthma, but also for my lupus and arthritis.  My highest dose was 120 mg daily and was at that dose for well over a year before finally being able to be weaned down.

Do you know, is your doctor's plan to wean you down from the 80mg after he/she sees you at the next visit?  When did you start the 80mg dose?

As I'm sure you know, prednisone does have some side effects that can be pretty nasty.  Of course, not everyone experiences side effects and even if they do, not everyone will experience them to teh same extent.  However, some of the side effects include weight gain (not necessarily from eating, but it can also make you retain fluid), rise in blood sugar, lowers your resistance to infections/illness, thinning of skin and hair, easy bruising, stomach upset, high blood pressure, mood swings, moon face, difficulty sleeping - just to name a few.  I think in your case, the risk of infections is probably your biggest concern because of some of the other meds you take in addition to the prednisone.  It'll be especially important for you to notify your doctor immediately if you start running a fever over 101, have a prolonged sore throat, flu like symptoms, excessive nausea/vomiting, diarrhea lasting more than a couple of days or that is extreme - basically any signs of infection or illness.  Also avoid contact with anyone who is sick or who has recently received a live vaccine for anything (also don't get any vaccines yourself while on the prednisone).

What are your blood sugar levels like or have they even checked them?  I'm asking because since prednisone can raise your blood sugar, and diabetes can cause circulation problems, that could have at least contributed to the problem with your toe.

As for trying to deal with your stomach while on the higher doses of prednisone, DEFINITELY take it with food or milk, don't miss a dose of your prilosec, don't lay down for at least an hour or two after taking it.  If you find that you're still getting nauseas and/or vomiting, try several smaller "meals" during the day rather than three larger meals.  Sometimes just nibbling on a couple of saltine crackers or pretzels and sipping on something like ginger ale will help settle your stomach.  I also find that I have to really watch my caffeine intake while I'm on prednisone, not only because prednisone already makes it even harder for me to sleep, but the caffeine also adds to my stomach upset when on the prednisone.  If you normally drink caffeinated drinks, you may want to at least try to limit them while on the higher doses and see if it helps any.

I'm like you in regards to prednisone tearing up my stomach.  I don't always vomit while on it, but it sure does make me nauseas, especially if I forget to eat something before taking it and if I don't take some sort of stomach med (prilosec, protonix, prevacid or tums)

Also be sure and watch for any signs of bleeding such as unexplained bruising, bleeding gums when you brush your teeth, severe stomach pain, tar or coffee ground looking stools.  Because you also take Plavix, your risk of bleeding may be increased with the addition of the higher doses of prednisone.

I hope I've been able to give you some advice/words of wisdom.  If there's anything else I might be able to answer for you, please do not hesitate to ask.  I hope that a) the prednisone continues to help, b) you start feeling better real soon and c) you're able to wean down off the pred soon.

Best of luck and please keep me posted on how you're doing.

robyn
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Avatar_f_tn
thank you for your words of advice. This is the highest dose of pred I have been on so I am a bit concerned. There was no mention of when they would wean me off of it. i was put on it a week ago. My toe is looking better as well as my other rash on my body.  My toe does still feel as though it wants to explode however when it is not elevated. My blood sugar was always within good ranges.usually under eighty.no one seemed to find my toe to be related to blood sugar issues.
  The first few days I was home I think I actually had some issues with fluid retention that I didnt recognize for what they were. We had a wedding reception to go to and it was casual. I was wearing jeans and a comfortable outfit but it felt as though I had been doing sets of stomach crunches especially on my left side, my ribs and side muscles hurt so astoundingly and up between my shoulder blades. I had some difficulty occasionally breathing and found myself breathing shallowly so I didnt hurt so badly. I got to a friends house and begged some aspirin as I also had a headache which was very odd for me. I had not urinated all afternoon although I had been drinking. Finally about eleven thirty I went to the bathroom. We were with another couple and had to wait on them to go home or we would never have stayed as late. I was very worried to see brown urine when I went. Never a good sign. I began drinking water like crazy to try to move things along through. along about four in the mornign the damn burst and I began to go normally and by late morning all of the pain in my ribs and back was gone away. Was this pleuresy? Sp? or edema? It sure seemed to be related somehow the pain and the non going. I worry it will happen again. I am a ostrich usually aboaut the whole lupus thing, I pay attention enough to keep myself in good shape but refuse to dwell on the whole issue so that it becomes my life and it takes over my entire existance.seems like it wins then and it doesnt get to. So I ignore it as much as humanly possible to keep it in line. hope that makes sense. Thank you for your input.
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Avatar_f_tn
I'm glad to hear that your toe is doing somewhat better and that there are no issues with your blood sugar.  Being on the 80mg daily for just a week now isn't all that long of a time, so I wouldn't be too worried about it, especially if you're feeling ok.  Do check with your doctor when you go as to when they're thinking about beginning to wean you back down to your normal maintenance dose of it.  The shorter amount of time you're on the higher dose, the less chance of you experiencing more of the "bad" side effects of prednisone.

I'm not 100% sure about your urination issue, but I'm guessing it could be the beginnings of a urinary tract infection or dehydration.  Of course, when you're dehydrated (and you can be without "feeling" thirsty), your urine becomes much more concentrated and darker in color, however, a brown color usually isn't a color you'd see.  Brown colored urine COULD mean there's blood in your urine (red blood mixing with yellow urine creates brown urine), which could be present if you have a urinary infection.  Did/do you have any other symptoms of a urinary infection such as fever, burning or pain during actual urination, urgency to go but inability to urinate much?  If so, I'd definitely suggest going to your doc (or at least calling him) and see if he thinks you should be on an antibiotic for a possible UTI - they may or may not want/need you to come in and give them a urine sample for testing, especially if there's a possibility of blood in the urine.  With the pain you had in your back and side, it's also possible that you maybe passed a kidney stone - that could also produce blood in your urine.

I don't think it was pleuresy - with that you usually more pain in your chest, especially when trying to take a deep breath - and it doesn't really sound like edema - edema usually refers to swelling in an extremity - legs, feet, arms, hands, fingers.  So I'm definintely thinking more along the lines of something with the kidneys or urinary tract.  Keep your water intake up and be sure to keep yourself well hydrated.  Cranberry juice (100% juice, not the sugared "cocktail" drinks) is also wonderful for urinary or kidney problems.

If you start having the brown colored urine again, definitely get an appointment with your doctor - tell them you're having brown colored urine and you don't know if it means there's blood in your urine - and explain the pain that you had/have.  If it is blood in your urine, you don't want to mess aroudn with it and need to find out the cause, however, if it doesn't return and was just a one time incident, there's probably not much to worry about.

I, myself, find that I urinate a lot more whenever I'm on prednisone.  It's a combination of the prednisone always makes me "very dry" - my mouth constantly feels like I've been chewing on cotton balls - and for me, the prednisone does tend to raise my blood sugar and elevated blood sugar can make you need to urinate more often.  The doctors aren't usually concerned about the slight rise in my blood sugar when I'm on it, however, they do keep an eye on it because when I was on that high dose of the prednisone for so long, my blood sugar was definitely haywire.  I don't have any issues with my blood sugar when I'm not on prednisone, so we all know for sure it's the med that causes the problem (as well as it being a well known side effect).

I understand your feeling about not wanting your lupus to take over your life - the challenge is to find the happy medium between not dwelling on it while also being aware enough of your own body to notice subtle changes that could indicate a flare or new symptom of the lupus.

Oh, by the way, headaches are very common with prednisone also.  I ALWAYS have more headaches when I'm on it.  I call it my steroid headache and know for a fact that it's related to the prednisone because as my dose of prednisone decreases, so does my headache.  I know in my case that some of the headache is again due to teh prednisone "drying me out" - my sinuses get dry and that adds to the headache.  I find that a saline nasal spray (non medicated, simply salt water) helps to keep my sinuses and nasal passsages moist and can help reduce the headache - definitley doesn't take it away, but can make it more tolerable.

Do you usually find that you have trouble sleeping with the prednisone?  I normally have a tough time sleeping anyway, but it's horrible when I'm on prednsione - doesn't matter what the dose is, but of course, the higher the dose, the more trouble I have.  If you do have trouble sleeping with it, talk to your doctor, there may be something he can prescribe or recommend to help.

Keep me posted on how you're doing and let me know ifyou ahve any other qeustions that I might be able to answer.
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