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Medical Forum / Diseases and Disorders / Lupus / December 2003newly diagnosed...
Hi All, I am a 43 F, newly diagnosed with SLE. I am beginning prednisone and see the Rheum about 2 weeks into the therapy. He is great, supportive and thorough. I have been ill with abdominal pain and a low grade persistent fever (that lowers during my period) muscle weakness and fatigue for over 6 months. Hair loss and rash that I attributed to the stress of illness.(I am working, too) Full Inf. workup with CT scan and Xrays that showed all normal or neg results. I have only begun with the joint pain even though a bone scan last summer showed hotspots in almost every joint in my body. I thought I'd be happy to finally get a Dx, but I am bummed. :-( What can I do to lessen the side effects of the Prednisone?? I am normal weight and don't want to gain. Also should I ask for pain meds? (even motrin 800 doesn't work for me.) The heating pad is my dearest friend. Except they don't make one BIG enough! I will soon be hooked up like multiple strings of Xmas tree lights!! Thanks, and god bless, Teresa Hi Teresa, I would like to welcome you. I am glad that you found the news group and I hope we can be of some help. It is a bummer when you are first diagnosed. I knew there was something wrong, but I kept hoping it was something that could be fixed easily. Pred does tend to put weight on most people. You can help lessen the gain by eating vegetables and fruit and avoiding junk food and sweets. I think that pain meds might be helpful. It would make you more comfortable and more inclined to exercise as much as possible. It is hard to walk when joints are so painful. I find that long, hot baths help ease my pain, at least temporarily. It may take some time for you to get replies. So many are busy with holidays preparations. You may have to be a little patient. Talk to us anytime, though. There is usually someone around. BJ-Sk. Canada > Hi All, I am a 43 F, newly diagnosed with SLE. > I am beginning prednisone and see the Rheum about 2 weeks into the therapy. [quoted text clipped - 18 lines] > Thanks, and god bless, > Teresa > Hi All, I am a 43 F, newly diagnosed with SLE. > I am beginning prednisone and see the Rheum about 2 weeks into the therapy. [quoted text clipped - 18 lines] > Thanks, and god bless, > Teresa Hello Teresa and welcome to the newsgroup. I think that depression is one of the reasons some rheumies don't always diagnose Lupus (right away). I know when my thyroid acted up, I thought, okay where's the pill to fix it... Same for fibromyalgia. At that point, I did not understand the concept of chronic. Everything had to have a "fix" by means of a pill. I know better now, unfortunately. The good news is you've found a great bunch of caring, funny, loving lupies. I too like long hot baths for pain. I like the clawfoot baths. Unfortunately the one here is not one and aggravates my back. Previous ones were and I could fall asleep so good in the clawfoot bath. I can't answer your other questions, but me and Maggie will find stuff if you ask. you may wish to save the Welcome I just posted. You'll want the Dr. Daniel Wallace "The Lupus Book" 2nd edition. Andy and KC also maintain a FAQ . http://www.ghg.net/schwerpt/aslfaq30.htm There's extra stuff there that you may not find in the book or on websites - straight from this newsgroup and poster's experiences. Post often, we worry when we lose track of posters. J PS Sometimes the Prednisone can be weaned down after a bit (or up during a flare). There's threads about that currently on the newsgroup, but you'll be working with your rheumy closely on that for a while. Hi Teresa Welcome to the group. I believe you have seen that the folks here are amazing and have so much helpful information to share and more support then you could ever want or need:) If I were you I would ask about the pain meds just in that I suffered for so long without pain med and had miserable miserable years before my pain was addressed with proper relief. My heating pad is also my best friend and I use it almost every day. I would not be able to do anything without my medication though, and I hate depending on it but not having it would be so miserable and inactive I don't want to consider what my life would be like not having it. There is always lots of discussion about addiction when you speak of treating chronic pain but I feel that what you will find is a there is dependence and then there is addiction. Our bodies may depend on the medication but I personally get no other sensation or feelings from my medication other then relief of the pain - some of it- as I am never pain free. Searching the group on topics of pain meds you should see a lot of info on the topic if you are interested. I am happy that you have a diagnosis, and I know that is a a two sided victory. I would also highly suggest THE LUPUS BOOK as it is incredible what you will learn from it. I did not read it until I was years into my illness( SLE, fibro, reynalds, chronic migraines, chronic ibs, and much much more:) I foujnd my copy at amamzon for cheap. Anyway, welcome to our group. Nicole C. in Austin, TX Hi Teresa! Welcome to the group! I hope you will make yourself at home with us. I used to take the IB 800 & had an awful reaction. It may have actually induced some of my hearing loss. Not to scare you as I believe I had a predisposition for the autoimmune disease that's responsible for that. However, it *can* do this to people. If you notice ringing in the ears, I would advise you to stop it & contact your doc. Other drugs can too, so like I said, don't stop it unless you experience the ringing. You might talk to your doc about Ultram. Many people here take it & it's a strong drug, but it's not a narcotic. There's also many other pain meds, but this is the one I take, so I just *had* to recommend it. : ) If you're going to be on a high dose of pred for an extended period, or even a few weeks, my doc always told me it was a waste to take anti-inflammatory meds while on 40-60mg. It will only upset the stomach more. Just a little side note I thought I'd share, but you should okay this with your doc nonetheless. I'm going back to slaving in the kitchen now as well as various other rooms in the house. Will be checking in periodically to gripe though. : ) So, post any questions or concerns you have & lean on us all you want. Depression is normal, Teresa. If you think you need meds, do not hesitate to ask for them. Some just need time & some need help. There's no shame in either. aHug4u, Maggie Thanks Maggie, I hate to take pills of any kind, even vitamins! I was kinda hoping that they would call me back, tell me the labs were clear and that Prednisone would NOT be required. Didn't happen. Up until 6 months ago I was a very healthy individual, used to run every other day, and never even OWNED a thermometer! Now I am hugging the heating pad, trying to decide which joint hurts the most and will get the heat...and logging my temp per the Rheum's request.(he's mad that my past MD's were not precise about taking vitals) Time to rent some movies, I guess... Decking the Halls is SO beyond me now! LOL. Thanks, Maggie Teresa Hi Teresa! I hate to take pills too. I cannot swallow a pill without food. Do you have trouble swallowing them? Or, do you just not like taking them because of what they represent? If it's the former, I have it down to an art & tell you just how to proceed. With the latter, however, I can only assure you that you're not alone. I hope you do not have to take the prednisone either. Nobody here likes to take it, but it will help you beyond belief. My halls aren't decked either....except with dust. I just have no desire to put myself through all that when I'll just have to pack it up. Not only that, but I'd most likely leave it up so long, that I'd just say, hey(!), may as well leave for next Christmas. I think that's one of the worst part of getting sick--not feeling like doing all the things you used to do. You remember silly things even, like, I used to be able to squat like a pro. LOL! I could too. I could clean a whole house, squatting. Now I'm on my bee-hind cleaning. You keep up us updated, k? I'll keep good thoughts going for your test results & if all goes well, you'll be feeling better before you know it. Remission is always a possibility too. You may have to fight the good fight first, but you won't have to fight it alone.... Hugs, Maggie Hi Maggie, Pills...I have trouble swallowing them even with fluids. I may try it the *baby* way and use a spoon of yougurt, pudding or applesauce. They seem to just tumble about in my throat and feel like they never go down. I also am dismayed by what the pills represent...My whole family spent 6 months telling me nothing was wrong and that a fever of 101 must have been *normal* for me! (never was before) I can't tell you how many quarrels I had with hubby about why I didn't cook, clean or do anything more than make it to work, through work and home! I simply could not afford to spend what little sick leave I have on a vague array of symptoms...fever , nausea, abd. pain, dizziness, weakness... So it's rather a rude shock to find out that, indeed, something's really wrong. I keep telling myself that I am NOT *sick* but simply in a different state of health. The Rheum says I will feel a LOT better with the prednisone and after 6 months being ill, I am ready for that part. PS For scrubbing when I *have to be close to the ground* I use the thick foam kneeling pads that they sell in Gardening shops. So far I only have one knee affected...this week. LOL Have A Merry Christmas Eve! Teresa Hi Teresa! Girl, I had the worst tonsils in my school district & the doc was always doing a throat culture. I still have flashbacks! : ) Why a pill makes me gag when food doesn't: It's a head trip, is all. We swallow food without a thought. It doesn't get stuck, even if it's sticky. It's the way we swallow it, I'm sure. We're relaxed & we've done it for decades, so we're used to it. That is how I swallow my pills. I chew up my food & get it back there to where I'm ready to swallow it naturally & then I place the pill right on top of it. You can't feel the pill at all & then I take a drink & swallow it all. I have a 100% success rate--okay 99.8%, it doesn't work well with ice cream & fruit. We're talking bulky foods. The kind that makes you thirsty. When I'm nauseated, I will use saltine crackers. And, after 10 years of taking pills like this, I can now swallow 2 Ultrams & 1 Zantac at a time with just fluid....on a good day. I have learned to psyche myself out by just getting my reflexes ready for a natural swallow & then pop in the pill. If I'm the least bit nauseas though, I grab the crackers. A lot of people here have went through just what you have with family. I currently go through it with my brother. I'm not married & my children are dogs, literally-a lab mix & a mutt. Father died when I was 26, my mother at age 31, so aside from an extremely large extended family, my brother's all I have & he's a butthead on a good day. Slowly, he evolves. He actually asked me what he could bring tomorrow. oh-WOW! He's frying the turkey & I thought that would definitely be the sum of it. Then comes the whammy! What else can I bring, he says? They do tend to come around. Some much later than others. I know it hurts terribly though. And thoughts are always going on in your head. Like, why doesn't Mrs. Jones, that conivving, gossiping, low down, dirty rag of a woman get this instead of me? How about all those murder suspects still running free? Huh, God? I can only say that those answers are within ourselves. For me, it's on a deep spiritual level. To do it alone, with little understanding outside this group has made me realize many things. Will your husband go to the doctor with you? I think that really helps others here. For them to hear first-hand what this disease is all about. I hope you have a wonderful Christmas! If you want to talk tomorrow for any reason, you can post & Mair or myself or someone will be checking in from time to time. I'm gonna go dig up a post the Mair made & put it on the front page, so you can see it, k? Hugs4u, Maggie > Hi Teresa! > [quoted text clipped - 16 lines] > then pop in the pill. If I'm the least bit nauseas though, I grab the > crackers. Eggcellent ! Sometimes it's how I hold my head and neck too. Know how we tend to lean our heads back when we're trying to drink water (and hope the pills slide down the back of the throat?)..well sometimes I reverse that and bend forward.. Are ultrams big? Sometimes the chalky ones (like Calcium or some pain meds) are worse to swallow. Hugs J [...] > Eggcellent ! > Sometimes it's how I hold my head and neck too. > Know how we tend to lean our heads back when we're trying to drink water > (and hope the pills slide down the back of the throat?)..well sometimes I > reverse that and bend forward.. The only way I can swallow pills is by taking a sip of some beverage, keep it in the mouth and then just throw in the pills and swallow it all. I have never had any problems getting the pills down this way. It's especially good for Pred, since it's uncoated here and tends to stick in the mouth if you take the pills first and then the fluid, which is very unpleasant because of the bitter taste uncoated Pred has. > Are ultrams big? Sometimes the chalky ones (like Calcium or some pain meds) > are worse to swallow. Ultram (at least here in Sweden) are small and in oblong coated capsules so they are easy to swallow. Nina > Hi All, I am a 43 F, newly diagnosed with SLE. > I am beginning prednisone and see the Rheum about 2 weeks into the therapy. [quoted text clipped - 12 lines] > > What can I do to lessen the side effects of the Prednisone?? Be aware prednisolone is not good for long term use. As soon as your illness calms down you should be reducing the dose slowly with the supervision of your doctor and regular checks. Also it can lower your immunity, particularly around chickenpox, where it can cause shingles, and things like flu. So you need to stay away from people with infectious illnesses as much as is realistically possible. The severity of the side effects depends on the dose. It can be physically addictive in that your body learns to rely on it and needs it. > I am normal weight and don't want to gain. It depends on how much prednisolone you are on and how long for. If you are on a high dose for a long time it is helpful to consult a dietitian about it. Also consult your doctor about whether you need to take something to protect you against osteoporosis. Calcium and vitamin D supplements are a possible requirement. Come back to us if you do experience weight gain. It is not inevitable. > Also should I ask for pain meds? (even motrin 800 doesn't work for me.) Yes. But be aware pain meds cause side effects. Constipation, nausea, confusion, for example. Some like codeine, can be addictive. It is only by trial and error you can find the right one. Be aware that some, like ibuprofen, can upset your stomach, and care should be taken in case they cause ulcers. I just take paracetamol and very occasionally codeine, but codiene gives me very unpleasant side effects. It may be a good idea to get a small prescription for a pain med and then go back and see your doctor to discuss how it works. Don't take more than one kind of pain med at the same time unless your doc advises. Where do you live? I dont recognise motrin 800. Take care and come back soon, Lynne > The heating pad is my dearest friend. Except they don't make one BIG enough! > I will soon be hooked up like multiple strings of Xmas tree lights!! > Thanks, and god bless, > Teresa  Signaturefor an alternative look at current events, go to http://www.greenpeace.org.uk/ Hi Lynne, >Where do you live? I dont recognise motrin 800. I live in California. Motrin 800 is just prescription strength Ibuprofen. Thanks for the tips on pain meds. I can't take codeine. and aspirin doesn't work. I haven't tried something like Tylenol yet...but I am guessing that it would not be a first choice as it is not as good an anti-inflammatory. Thanks! teresa > Hi Lynne, > [quoted text clipped - 7 lines] > Tylenol yet...but I am guessing that it would not be a first choice as it is > not as good an anti-inflammatory. If you are on prednisolone that should have a fairly strong anti inflammatory effect. That is what it does, immunosuppressant and anti inflammatory. Its its reason for existence, as far as I am aware! Yes, I think paracetamol and tynol are simililar or the same. I once had an argument of sorts as to whether paracetamol is an anti inflammatory or not. It is my understanding that it is *not* an anti inflammatory. It is a straight painkiller. My doc has prescribed me up to maximum dose parcetamol, two 500mg tablets up to 4 times a day. I rarely take the maximum dose. Exceeding the dose can cause liver damage. I like them because I dont get *any* side effects from them. Some people have said they make them constipated, but I don't have that trouble. I was on ibuprofen for a while but it upset my stomach quite badly. Also there is an oil called Olbas Oil, which is good for rubbing into painful joints/muscles. We buy it in the shop here, but in your country you may have to buy it online. It is a UK product. Lynne [...] > Yes, I think paracetamol and tynol are simililar or the same. I once had > an argument of sorts as to whether paracetamol is an anti inflammatory or > not. I often get confused with the US names, but I've figured out that Paracetamol and Tylenol are the same. > It is my understanding that it is *not* an anti inflammatory. It is a > straight painkiller. You are right Lynne; it's not an anti-inflammatory. It's also easier on the stomach than NSAID:s. My sister can't take any NSAID:s because of her Crohn's, but she is allowed to take paracetamol. Nina Merry Christmas! The Ultram I take is generic-Tramadol. Sadly, it's the size of baby aspirin. But in my defense, they aren't coated. I learned this the hard way, trying to be brave. : ) Hugs, Maggie Merry CHristmas Nina! The prednisone isn't coated here either. Ugghh! That taste is still in my head! Now I will have to eat twice as many goodies to get rid of it. : ) Hugs, Maggie |
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