Hi OC GAL, I am really so sorry you are having so many problems with everything. I hate having to keep going up and down with the prednisolone as well. I too find that if i go below 10mg of prednisolone, i am okay for about a week, then i start to get a massive flare again, so then i end up having to go back up on the steroids again, it is so frustrating. I have never actually been down to 3mg, the lowest i have been is 5mg and they kept me at a 5mg maintenance dose, as my body just doesnt like it if i go any lower. Alot of the time though i am up at 20mg or more for about six weeks again, its like a pattern sometimes. I am always relieved to know i am coming back down on the prednisolone though, as i have had so many other problems with shortness of breath, headaches, and thinner skin now. The list is endless, so i do understand what you mean. Maybe you are too low on the prednisolone again, you need to ask your doctor or Rhuemy as this doesnt sound good does it? I have a lot of the symptoms you do. The frequent urination drives me potty sometimes. I am supposed to be starting this new drug called Duloxetine, but every time i have wanted to try it, i have had something where i have had to get up early, and i have heard it has a sedating effect that hangs over into the morning. The Duloxetine itself sounds okay, its supposed to help with fibromyalgia, although its actually an antidepressant, although the way i have been feeling over the last few days perhaps i could do with an antidepressant too, hehe. And its also said to help with the urination thing, The thing with the frequent urination, thats a Lupus thing, its called Irritable bladder, which not alot can be done about usually. So thats why when the doc said about this new drug for me, i thought i may as well give it a go, just havent had chance yet. Its interesting about what you say about the type 2 diabetes, as i am often feeling as though i am craving sugar and jittery through a lack of it, which soon clears up as soon as i have one of these sachets i could get from the chemist which have all the essential salts, sugars and electrolytes in them. I tend to drink one in the morning, as thats when its at its worst most of the time, but it does happen at other times too. I do really feel for you at the moment. It is so frustrating. I wish i could wave a magic wand and get rid of everything thats making everyone feel so unwell. As i said before though, you do need to go and see either your doc etc,. Anyway i wont waffle on anymore, you take care, look after yourself, let me know how you get on, love and hugs Astrid40xoxo
Ann A. said:
No, I have not experienced this, but boy do I feel for you.
The high blood pressure and heart rate can be due to pain. I have a lot of the conditions you speak of, but I have chosen to not take prednisone. I think I'd rather have the lupus than the side effects I read about prednisone. You are going down so slowly, I think your back pain and headache are probably due to lupus or other conditions rather than lower prednisone. If you were lowering it every day or two, I would suspect the prednisone. Maybe the cellcept or another drug is causing these symptoms, and the prednisone was hiding those side effects. My adrenals have shut down too. Instead of accepting the prednisone for that problem, I learned that there are 48 chemicals in the adrenals, and cortisone is only one of them, so I take natural adrenal supplements, that have all 48 chemicals in them. I also have diabetes, but they don't call mine type 2. They call it auto-immune diabetes because it gets better and worse depending on how lupus is attacking it. So sorry for all you are going through. I guess I didn't understand the question. You asked if "this" happens with lupus, but you mentioned so many different things. Do you mean them all, or one certain thing? I feel your frustration! I've had to exchange natural remedies for all my symptoms except for a few prescriptions. Lupies often react a lot to prescriptions.
Hi, i feel the same also - the government should stay out of that part . NOone can say how much pain i am haveing and when it happens , they can only go on my word and yes there are some people who FAKE the pain just to get the meds . to sell them - but the doctors can tell if the pains are really real or not , so don't think that they don't !!! I think because of the way the world / times have become that everything goes now and people are just doing things to make / get money and not thinking of the well being of anyone health , and that's only what i think !!! smile So , just be carefull and try to only take the pain meds / or get them as needed - when you need them ....Beverly L.
Well hang in there !!! and hope for the best !!! Beverly L.
aisa64 said:
My primary Doc can no loger write me a prescripton for pain med, my rheumy can't either. Now i have to go a pain center once a month, which i can"t afford. The prescripton is only for 30 days. The reason for this law is because people from other state come to get pains meds to sell on the street. I don't know what the law makers were thinking when decides to do this, It's only hurting the people who really in meds in order to function. asia64
haitianbarbie88 said:
Took the last of my pain meds today. My rheumy appt isnt until the 18. My mom is coming to advocate for me due to the fact that I get really emotional and forget things. I may end up going to the er tomorrow( not sure if they can help) bc I just can't sit in pain for 16 more days. ;(
Hay , when i go to the doctors and they ask that Question - "what is my pain on the scale of 1 to 10 , my reply is 20+( really i do be in that much pain at the time of the appointment , cause by then the pain meds that i took are not WORKING so , the doctor always just go up on the dose !! which sometimes i just don't take them , i find that going to sleep helps me better to relaxe !!! smile ..... I thinnk it is wrong to be in our condition and they (doctors ) know that the LUPUS cause chroinic pains they should help us due to the fact of haveing LUPUS and dealing with the pain of it ... Thy know what we go through... Beverly L.
haitianbarbie88 said:
Hey Ang! Not exactly.... I went to my pcp she told me she doesn't feel comfortable prescribing me narcotics someone else gave me? But she wanted to change my dose of steroids? Makes no sense. And once I got assertive and kept calling my rheumy she had her nurse call me and say that she will no longer be perscribing me pain meds that it was only supposed to be for short term and that she needs my records from the last er visit to c how it went. Seriously? Since when is lupus pain short term? Ur a Rheumotologist for god sakes. Soooo I'm hoping that once I get to the appt on the 18 and my mom comes she can speak some sense into her and I will be able to get a pain med I can take prophylacticly so I can keep my pain at a steady rate instead of taking a thousand pills once my pain reaches at ten.
draginfli said:
So the deal with the pain meds is that he won't refill for you to last you until your appointment?
Also - I'm glad your mom is going to go with you - also, it is good to keep notes during the day to take with you.
I AussieJen, this site is wonderful !!! and hope that you are able to find some time to get into some of the discussions that are here - it is funny how we think that we are the only one going through the problems of this LUPUS stuff , but to find out that there are other with some pain s/ problems that you have it relieve that stresss level a little bit !!! smile so any way, hope that you get the time to join in when you can ... By the way i always tell people that i am going to mve to Austuria , some day !!!! LOL..... Beverly L.
AussieJen said:
I can't tell you how great it is to read through the discussions here - even though I haven't participated so far (just because of tiredness usually) I am constantly amazed at the similarities in people's experiences. I still get some pain (mostly localised) pain in joints and random stomach pain but it has never been as bad as my initial flare up which had me in tears many nights so it helps me knowing that if I coped with that, I can cope with this. But I coped with it because I had to - not knowing anything about Lupus or what was happening to me. I find it terrible that doctors are withholding pain medication for people who are diagnosed with Lupus and therefore really need it. I struggle with fatigue and brain fog quite a lot (for me both have continued to be a big issue since I was diagnosed) and so talking to a doctor about what's going on is really difficult at times, so to add confrontation about pain medication into the mix, sounds awful. I've started taking notes about my journey (when I remember) just so I can give the doctor specific examples about pain/feeling sick/headaches so forth, and I've found the doctors take me a bit more seriously by doing it.
Hay Ann A. , and that's how am going to be - outlive whatever this LUPUS stuff has for me and hope that everyone else does the same - Keep FIGHTING and NOT GIVING UP!!!!.... Beverly L.
Ann A. said:
Beverly,
I have been living with a dx of lupus for 45 years. At age 65, I am still finding much enjoyment in my life - like the birth of my new granddaughter who is my sixth grandchild. I have less pain than at any other time in the past 20 years. My flares come less often and they are milder than when I was in my 30s and 40s. I have now outlived many of my friends who thought of themselves as healthy. I have also outlived many physicians. Beverly L. said:
It has become funny to me now that things sometimes get out of order for me - but begin self willed i am not going to let this Lupus stuff get the best of me !!! and neither should you !! smile As for the time length of Life , i've been told and read that there are peole whom has lived for a long time with this , and i've also have a aunt that was a friend to someone who had Lupus and the young lady was born with it and she died in Nov. or Dec. 2011 , my aunt knew her for a very long time and went through tough times that she went through. But she took care of herself and on top of that she was 18 at that moment when she passed ... But i hope that you take care of yourself and do the Heathly things that WE should do for Living with LUPUS have to do , and am going to also ... Beverly L.
Heather said:
wow! I just read the part about having problems holding things & standing for any length of time ...I have just started having this problem over the last three months. like, sometimes I cannot even hold a coffee cup. I thought maybe I was just a reject sle patient cause my Rheumatology Dr doesn't say anything when I told him. I have all these crazy things going on in my body and for the first time since my diagnosis I'm scared. how long do we normally live with this disease? does it eventually kill us or just debilitate us & cause us to be in such pain & misery that we just wish it had killed us? I can't hardly function most days & my rheumatologist says it's impossible to get ssi disability for sle ...in pain worried & giving up hope
I can say , it is a time comsomming experience .... and really you don't need an attorney !!!!! Just make sure you keep ALL of your doctor appointments, medical files and the statement from the doctor the Rhuematologist,saying that you are not able to work due to you have LUPUS ( it has to have the diaganoise of LUPUS on it ) . But tell the doctor that you are appying for it and he/ she will know what to do from there , hope that your wait isn't a long as mine was B4 they Finially approved me !!! bbut it cost me 1 -1/2years lot , because i couldn't find my iold medical records from a doctor who retired and i didn't have contact information to provide to the JUDGE .. But yes it is worth the wait if that's what you want to do !!!! Even to know this it's not money that the government is giving to you, it's money that you put away for a day like this !!!! That's how i look at it - and i got mine ... So yes , get the help / money that's yours ..... Beverly L.
Please be carefull , sometime these pain doctors just want to give us the relief of the pain , instead of realizing that there is a cause for the pain which is LUPUS , make sure that you let them know about the LUPUS stuff!!???? ... Beverly L.
Nellatator said:
I have pain in my hands and arms. My rheumatolgist prescribed pain medicine that only got rid of the pain temporary. I said, I can't live with pain so I went to pain doctor. He prescribed a low dosage of methadone. That medicine got rid of the pain. I believe you answer is to go to a pain specialist.
Never loss the FAITH !!! God is always there , maybe not when we want him but ALWAYS on time ... God bless you and hold on to your FAITH .... Beverly L.
haitianbarbie88 said:
Since I can't sleep at all I've decided to write back everyone who replied to the post. THE LORD HAS ANSWERED OUR PRAYERS! Thank god! I went to the er yesterday after school around 3 pm. By this time my pain was about a 9. I had all my lupus pain plus I felt like my son had brought me a head cold home from school. Lucky me lol. I was immediately evaluated by a triage nurse and placed in a waiting room. After speaking with a couple more people the np came in. I told her my story about my pain and my dr. Then proceeded to make it known that this was my last resort and if i didnt get help from her id be in the er every day until i saw my rheumy again. She felt bad and told me not to worry that she would take care of me. She gave me her personal evaluation and found out I also have a double ear infection on top of the lupus pain. Also a lot of redness in my throat. Which i now believe is also infected. To make a long story short she gave me pain meds right away and an antibiotic. I stayed for another 20 and was later handed a perscription to 75 pain pills and 10 days of antibiotics. Thank you all for your prayers and strength. Sometimes we get so low that we forget to trust in god and keep our faith. Who would've thought the day after my pain meds ended I would get a new script for something even better. I appreciate all of you and I hope I can help you all at some point the way you've helped me. ;) xxxxooooooo barbie
thanks for the reply. It's taken me a few days but I've finally got back here. I think some of the new laws mentioned in this discussion sound like officials are so worried about drug trafficking that they are punishing the people who actually need the medication. In Australia, we often follow the US models but at the moment, (as far as I know) any of my doctors can offer me pain medication. Thankfully, at this point I don't need strong pain killers but I know that can change at any moment - that seems to be the nature of this illness. I have always taken comfort that if I needed something stronger, I could readily get it. Seems like the government/lawmakers over there are poking their noses in something they shouldn't.
draginfli said:
Aussie,
I take daily notes too because I have the brain fog and extreme fatigue as well, along with some memory issues. Without the notes, when I get to the doc, it is like I know what I want to say, but it just doesn't come out right. You are right - the docs seem to appreciate when we have organized our thoughts and symptoms for them.
I didn't participate here very much when I first joined - I just read some of the discussions and sort of thought that I didn't have anything to offer to help anyone else. Then, I realized (exactly as you said) that our similarities are what qualify us to help others. Just reassuring each other that we are not crazy is a certain kind of brother/sisterhood!
I am still amazed at the quantity of Lupus patients who are denied pain medication! :( I can't imagine handling this pain with no relief. My prayers are for everyone out there who needs relief!
AussieJen said:
I can't tell you how great it is to read through the discussions here - even though I haven't participated so far (just because of tiredness usually) I am constantly amazed at the similarities in people's experiences. I still get some pain (mostly localised) pain in joints and random stomach pain but it has never been as bad as my initial flare up which had me in tears many nights so it helps me knowing that if I coped with that, I can cope with this. But I coped with it because I had to - not knowing anything about Lupus or what was happening to me. I find it terrible that doctors are withholding pain medication for people who are diagnosed with Lupus and therefore really need it. I struggle with fatigue and brain fog quite a lot (for me both have continued to be a big issue since I was diagnosed) and so talking to a doctor about what's going on is really difficult at times, so to add confrontation about pain medication into the mix, sounds awful. I've started taking notes about my journey (when I remember) just so I can give the doctor specific examples about pain/feeling sick/headaches so forth, and I've found the doctors take me a bit more seriously by doing it.
I think my memory is affected too. I certainly have little flare ups where I can't remember much about them and if I don't think to write them down I really don't recall how long they went for or much about them. Which is both a blessing and a curse. It's a curse because I hate being foggy, I feel stupid because I can't articulate my thoughts but it's a blessing because I also forget the down times pretty quickly.
When I was first diagnosed I was offered heavy steroids and I refused them. In my twenties I was on prediscelone(sp?) for 18 months and I put on a load of weight and my moods were really affected. That was for ITP or low platelets which I believe is sometimes a precurser to Lupus. So anyway they put me on plaquenil with a low steroid and two things for my stomach - nexium and maxalon. That was a few years ago and now I have started getting very sensitive and sore eyes. And I have a blind spot that's been found - but they assure me it's not the medication - it's an eye abnormality. Oh sorry this is all off topic really. Anyway, good to hear from you!
Hi there AussieJen, Its great that you have been able to come on and participate this time. Yes, the tiredness is such a nuisance to say the least. I have just been through four days of feeling so tired that it affected my mood and my way of thinking about things. I knew i just had to go to bed and sleep for as long as i needed to, otherwise it would only get worse. It was the same for me, the first time i had a massive flare up, the pain was indescribable. I was just lucky that i had changed doctors and finally got a doctor who was listening to what i was saying and knew immediately what was wrong, obviously i still had tests to have, but he acted immediately putting me on high dose steroids and pain meds. It is totally disgusting that adequate pain relief isnt being given to those who need it. They have their reasons i suppose, but it should be if somene is in pain, then their course of action should be to help relieve it, not make someone suffer more because of it. It really upsets me and appalls me that there are some LWL members out there without any meds to help with the pain they are in. It is a good idea to keep a diary of events, and keep a copy so that if a doctor doesnt have time to look at it there and then, then you can pass it over to the doctor if they dont have time there and then to look at it. And also it might be useful as it might show patterns of when the pain is worse etc, which could be helpful as some things might trigger it. I do try and distract myself if i am in pain as much as i can, but of course there are times when this is just not possible. I try and find things like hot water bottles, a tens machine, cold compresses, or anything that might ease the pain a little. Okay its not going to take it away, but anything that helps is a bonus. I just wonder how many people out there are having the same problem regarding pain meds at the moment. Like you say Aussie.Jen, memory comes into it as well, remembering to do all the notes as well when you arent feeling good is not easy. And also if your memory is impaired due to the Lupus then that doesnt help either, i know mine is, they put my poor memory down to the fact i have the Antiphospholipid Syndrome, and have had epilepsy/seizures due to brain involvement. So of course that doesnt help. I make myself notes everywhere for everything now, otherwise things just get forgotten. Anyway bye for now, take care, look after yourself, love and hugs Astrid40xoxo
Since I can't sleep at all I've decided to write back everyone who replied to the post. THE LORD HAS ANSWERED OUR PRAYERS! Thank god! I went to the er yesterday after school around 3 pm. By this time my pain was about a 9. I had all my lupus pain plus I felt like my son had brought me a head cold home from school. Lucky me lol. I was immediately evaluated by a triage nurse and placed in a waiting room. After speaking with a couple more people the np came in. I told her my story about my pain and my dr. Then proceeded to make it known that this was my last resort and if i didnt get help from her id be in the er every day until i saw my rheumy again. She felt bad and told me not to worry that she would take care of me. She gave me her personal evaluation and found out I also have a double ear infection on top of the lupus pain. Also a lot of redness in my throat. Which i now believe is also infected. To make a long story short she gave me pain meds right away and an antibiotic. I stayed for another 20 and was later handed a perscription to 75 pain pills and 10 days of antibiotics. Thank you all for your prayers and strength. Sometimes we get so low that we forget to trust in god and keep our faith. Who would've thought the day after my pain meds ended I would get a new script for something even better. I appreciate all of you and I hope I can help you all at some point the way you've helped me. ;) xxxxooooooo barbie
No I haven't had this either, but I feel for you too. I hope someone has advise for you.
OC GAL said:
I started decreasing my Prednisone 1 mg/mo got down to 3 mg & started having severe back pain, leg heaviness & headache. My B/P went up to 150/80 & HR 103 I have spinal inflammation & have to have IV Prednisone. This is the second time this happened. I also have cardiolipid Ab & take Plavix. My Rheumie put me on 40 mg Prednisone for 5 days. I'm so sick of going up/down on this Prednisone. I also take Cellcept 1,000 mg which is suppose to be a steroid sparing drug. She says this Transverse Myelitis can cause paralysis. I've had spinal taps before that are neg. She says these symptoms are due to lupus flare. This also affects my bladder causing frequent urination. My cortisol level was 2 (normal 6-8), guess my adrenals shut down. i also have diabetes Type II from yrs of high dose Prednisone. Has anyone experienced this with Lupus?
Hi Beverly L, thanks for replying and yes I think sharing does help the stress, but even just hearing other people's stories helps you to not feel so alone. Well there are certainly many beautiful places to live in Australia - but right at the moment it's particularly windy here in Kirkstall. I went outside earlier and I swear every part of me hurt because the wind was that fierce. But in spite of the wind there are green fields and ploughed paddocks and loads of parrots and gallahs so I'm not complaining! I've lived most of my life in the city (Melbourne) so it's quite a contrast.
Beverly L. said:
I AussieJen, this site is wonderful !!! and hope that you are able to find some time to get into some of the discussions that are here - it is funny how we think that we are the only one going through the problems of this LUPUS stuff , but to find out that there are other with some pain s/ problems that you have it relieve that stresss level a little bit !!! smile so any way, hope that you get the time to join in when you can ... By the way i always tell people that i am going to mve to Austuria , some day !!!! LOL..... Beverly L.
AussieJen said:
I can't tell you how great it is to read through the discussions here - even though I haven't participated so far (just because of tiredness usually) I am constantly amazed at the similarities in people's experiences. I still get some pain (mostly localised) pain in joints and random stomach pain but it has never been as bad as my initial flare up which had me in tears many nights so it helps me knowing that if I coped with that, I can cope with this. But I coped with it because I had to - not knowing anything about Lupus or what was happening to me. I find it terrible that doctors are withholding pain medication for people who are diagnosed with Lupus and therefore really need it. I struggle with fatigue and brain fog quite a lot (for me both have continued to be a big issue since I was diagnosed) and so talking to a doctor about what's going on is really difficult at times, so to add confrontation about pain medication into the mix, sounds awful. I've started taking notes about my journey (when I remember) just so I can give the doctor specific examples about pain/feeling sick/headaches so forth, and I've found the doctors take me a bit more seriously by doing it.
I just brought Aleve and tylenol for my pain during this recent flare. Plus, Bengay for the swollen joints. I am using mostly over the counter medications and natural sleep aides to help me with the sleeplessness. But today is a good day, the flare is passing and I was able to shop with my daughter for food and laugh together. Beautiful day.
I think in moderation everything is fine. However, I will head the advice regarding NSAID and Aleve. Most days, when I am in pain, tolerating it is my goal.
This is like biofeedback! I learned that when younger, but it only works when I can stop what I'm doing. It doesn't work when I am busy. It also only works (for me) when pain is 2 to 7 on a scale of 10. After that, the pain is too bad for me to control. I wish everyone could learn this. It is wonderful to feel that you can control something, and it does make pain more bearable.
Ann, I love that you continued working 43 years after your SLE diagnosis. Do you have any tips on how to balance working, stress and SLE? Please share.
Ann A. said:
Over the past 40 years I have tried many different approaches to dealing with pain. One of the most important people in my life is my "pain psychologist" who is employed by the same rehabilitation hospital as my pain management physician. I don't do very well with just tolerating pain - but I have learned many mindfulness techniques that have allowed to me cope when drugs were not appropriate, like when I was working (which I did for 43 years after my lupus dx)., I did not really start learning the mindfulness techniques until about 22 years ago. I wish I had learned them sooner.
Ann A. I also have SLE, but I have so much trouble trying to work, especially with the myositis, which makes my muscles very weak and walking is a problem, as well as my memory and trying to remember things, especially when I become overwhelmed, and I have a problem with my patience, I literally want to fight people for no reason, when they are on the road driving what I call stupid, but it probably is me instead of them, so I don't drive anymore. I hate crowds and too much noise. Can you explain this, and have you ever experienced any of this? I also have anxiety attacks easily.