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Posted 4/21/2011 3:32 AM (GMT 0)
Thank you Omega! It is a lot worse today and only on the 2nd day of the Medrol pack... (still heaps better though than the past few weeks so I can't complain too bad...but it feels like it is coming back... I may have to ask the doctor to put me on the prednisone? Is it stronger than the medrol? Last time they hospitalized me on decadron and finally it worked but I was on steroids for almost 3 months by that point of all different kinds because at first they thought it was my adrenal glands. Really tired or I'd write more but thanks so much for your advice!  Nicki
Posted 4/21/2011 12:48 PM (GMT 0)

Lynnwood said...
I don't really know if there are differences between the medrol pack and prednisone. I think the prednisone requires a little more processing in your body before it becomes usable, while the medrol is already closer to the natural prednisone produced by the adrenals. I do know that the dosages are not 1-to-1, ie. 1 mg medrol does not equal 1 mg prednisone.

Sometimes it is worthwhile to consider a doctor even without insurance. I know many people think that is impossible, but I'd rather be in debt than in the kind of pain it sounds like you have. Rather than rely on your dr to find a rheumy, I'd call my insurance company directly and see what they say. There are lots of good rheumies in the Atlanta and surrounding areas.

Thank you Lynnwood for your help! I kept looking yesterday and must have missed this post somehow! Today is a little worse yet (but still nothing like the past few weeks!) It is not intolerable--just slightly concerning I would say since I am now on day 3 and symptoms coming back more and more... ugh! and its my b'day today! But we are going to celebrate no matter what! I have my husband already offering to bake my favorite cake from scratch and my little son who is my life!!!  And EASTER!!!  So I am not going to let this get me down this weekend. It felt so good the past 2 days to be able to clean the house... yeah.. I know... it sounds like such a small thing really--but it probably depresses me worse than anything when things get out of order or need dusting/vacuuming and can't get out of bed to do it--and my husband (bless his heart) is so tied up just trying to keep up with diaper changes, running around with the little fellow, dishes, and laundry (essentials...).  He really tries but nothing like being able to clean your own house--it was a bigger b'day present to wake up to things so clean today than anything!!!  Lynnwood, you really have helped me to stay positive and have hope that things are going to turn around soon. I have to say if it were not for you and the others, I really think I would have lost it the last few weeks especially... Thank you again!!!  Nicki

Posted 4/21/2011 8:18 PM (GMT 0)
Happy Birthday and just take it easy on youself. Enjoy your day with your family.
Posted 4/21/2011 9:07 PM (GMT 0)
Thank you, Frank! I appreciate that! I have been having a wonderful day being able to PLAY with my son!!!
Nicki
Posted 4/22/2011 2:07 AM (GMT 0)
I am so glad for you...I know how little ones can wear you out. Enjoy!!!
Posted 4/22/2011 3:59 PM (GMT 0)
Thank you Frank! I am excited about a "flashlight" easter egg hunt our church is having for the children tonight! It will be the first hunt my 16 month old son will be able to really take part in! (Last year he was in his stroller just watching as he was only a few months old). I talked to my family doctor again today telling him about how the steroid decrease is bringing back symptoms and he said that the Mobic he had me on should be doing the same thing as the steroids and he will not give me any more steroids without a diagnosis. That kind of upset me since I finally found something that has given me so much relief after months of this!!!! But he did also say he was going to push this rheumatologist to take me early and see me right away and said he didn't think that the ANA test would be affected by the steroids? I don't know anything about that... but he seemed a little concerned that the medrol the ER doctor put me on might affect the tests. (They already know I have an elevated RF). Anyways... he is supposed to call me back by sometime later today and let me know when the rheumy can actually see me... but it sounds now like it will be in days instead of in weeks or months like they originally were telling me--THANK GOODNESS!!! So it is good news although I am a little peeved that he wouldn't be more understanding about the steroids... I'll see how it goes this weekend and cross my fingers that it goes well and start back on the Mobic when I run out. Thanks again Frank!
Posted 4/26/2011 6:17 AM (GMT 0)
Wow. Something is very wrong here, when someone in so much pain, claiming NO quality of life (which I have also felt for the past several years), hardly able to do the things other people take for granted, is replied to with so many "Me too-s!" I knew there were a lot of crappy doctors out there but this is ridiculous.

Without exaggeration, something drastic needs to be done. I have lost all of my friends ,l had to give up Graduate school (a tragedy, as my future was quite promising) and have gone from being a gregarious, busy happy single mother who managed to get her B.A. with honors, a double major, and work full time through it all to someone who has given up all her dreams, hasn't dated in 12 years, at 51 has to use a cane to walk and still has problems with doctors with looking cross-eyed at me as though I have no right to be so fatigued going to the corner store wipes me out for the rest of the day.

Doctors need to be policed. By us, the patients. What I have read here today, both in response to Niki's plight and what she has reported herself. borders on abuse. For so many of us to say, yeah, me too, in answer to negligent doctor reports, is criminal. Before I die I swear to God I am going to start something, an organization or even just a patient report site where we can warn each other against all the crappy doctors, anything that will make these arrogant sadists realize that they will get rich no longer from our visits if they cannot treat us with dignity.
Posted 4/26/2011 4:01 PM (GMT 0)
Dear Read Deeply,

Your words came very appropriately to me this morning where I can hardly even type my fingers so swollen. The steroids they gave me last week were amazing--a pure cure for me. then they wore off and my fam doctor would not give more saying he'd lose his license if he gives steroids with no diagnosis in place. I called every rheumatologist office between here and Atlanta surrounding area--only one took my insurance (and booked till December). I ended up in ER again Sat and the doc gave me another solumedrol shot but nothing to go home on, so was fine for around 36 hours again and by last night excrutiating pain, swollen again... called my fam doctor--and he had left for the day after promising both friday and monday to call me back with a rheumatology apt... I was crying and asked secretary what am I supposed to do. I'm too weak to even ask for help anymore--so weak. She said she didn't know. she is just a secretary. Then the doctor surprised me with a call around 6:00 and said he can get me in to a "friend" who is rheumatologist on May 2nd and he gave him "permission" to give me 10 mg Prednisone for 7 days until I see him. I was so relieved. Felt like he really believes me. Told him I was in so much pain and he said is the tramadol not helping? He gives me 3 pills a day--useless--Ibuprofen works better! It is prescribed to take 2 pills every 6 hours, but if I take that it helps but I run out in a few days cause he only gives me a few at a time. So he called me in 6 vicodin to use "sparingly" this week as needed. I took 1 last night and had much relief but saving the rest for when it gets really bad as it already is bad this morning. I wish I could tell the doctor to take his medicines sparingly and stay in bed for the next month. When someone is in this much agony--pure pain--I see no excuse for them not treating the pain better if they are not willing to treat the problem with steroids. The prednisone has not really taken affect yet. I don't know if its because it got so bad yesterday before I took it or what. Usually the solumedrol shots worked within around 6 hours for me and lasted around 36 hours (roughly) but the follow up 4 mg medrol pack they gave me for 6 days the first time really kept me comfortable for around 4-5 days in the end (the last couple days it started going south again). I am hurting too bad to keep typing and have to "sparingly" hoard the last few pain pills I have for the agony I know will come towards evening... but wanted to share with you all what is going on even now. We have a cure--the steroids-- so now my question to the doctor is: do we know what the problem is?! We have the cure! They just refuse to give it to me without diagnosis... but hopefully this 10 mg prednisone will start working better soon. I took the first dose yesterday around 7:30 pm... so maybe it just needs more time and I took today's dose this morning already....  I'll keep you all in touch. Thank you for all the prayers, the "me-too's" and the care. I agree with Read Deeply that somehow something has to be done to stop this. I had the ER doctor tell me that I need to be more proactive and find a rheumatologist to see me when they don't take you without referal (for one) and also there are none here in GA practically that take my insurance!!!!  That is a lot of guilt to throw on a patient (and tell them that they refuse to give you any more steroids in the ER) when you are in that much agony! (My goodness--who asks for steroids that make you bloat up like a whale unless they are the only thing helping you and you are in excrutiating pain!!!--It was not like I was asking for pain medicine even!)  Thank you all. I am really at the end of my rope again and trying to stay positive from thinking of the precious few days I had of pure relief last week over my b'day and Easter week...  Nicki

Posted 4/26/2011 5:03 PM (GMT 0)

Dear Nicki,

I wish I could scream and cry for you. I am so sorry for what you are going through. Free advice and hugs. I would go with you if I could. If you could find the closest hospital to you with a lupus/ms/autoimmune disease  research dept, do you have someone who could look online for you for drs. belonging to the American Rheumatology Society? (I'm sorry if the name is wrong, it's close). Hunt articles in the listings of the American Medical Association, then present yourself to the nearest emergency room with a board certified rheumatologist  and refuse to leave until you are seen by their on call rheumatologist. I mean it, refuse to leave. Literally. It is now mandated by the JCAHO, (Joint Commission on the Accreditation of Hospitals), to which all big hospital medical centers pay to be inspected and credentialled by, (in fact, if a hospital is JCAHO certified, the federal government pays them more $$$),  that pain be treated. Hospitals are now required by law to have standards of care for pain management, (be it emotional, or physical)  and chart documented proof that these standards are followed, as evidenced by THE PATIENT STATES THEY ARE FEELING BETTER. And obviously, the system is failing you big time. I am a retired nursing instructor and was an ICU nurse for 21 years. We teach that pain is the "5th Vital Sign" to be assessed, as a standard rule, with temp, pulse, resp. and b/p. It is required that adequate standard interventions be met or the crap can hit the fan. Legally, and think lawsuit legal, and insist on seeing an autoimmune disease specialist, AND the hospital social worker/chaplain, and do not leave the stretcher, or sign their legally required discharge papers until you have an appt. for at least reasonably immediate outpatient help. Don't be intimidated by their threats, or threats about insurance coverage. Take a deep breath and practice telling everyone, until someone listens, that you can't keep on living like this. There is no law that says a family dr, or ED dr. can't prescribe prednisone for symptoms. I even think prednisone response is used as a diagnostic tool in itself. I can't give medical advice of any kind, but I am telling you what I would tell my sister or my daughter. Hang tough and God bless,

suetoo

Posted 4/26/2011 5:38 PM (GMT 0)
I'm sorry you are having trouble finding a rheumy. I don't really understand the referral issue (unless it's something with your specific insurance) -- I've seen 5 rheumies at different times and only once had a referral. (Yes, I'm in GA as well.)

Could it be they have different answers if the drs office calls vs you calling?

Dunno but wishing you the best of luck,
Posted 4/26/2011 6:02 PM (GMT 0)
The real issue unfortunately is being a medicaid patient--where only one clinic in Atlanta (can I say starts with E----) takes it and only has 2 rheumies both booked until Dec (one doesn't even take new patients) but my fam doc did finally get one actually locally who will see me as soon as my insurance changes over on May 1st to a different insurance through medicaid (I don't know what I am allowed to say online or not so please forgive me if I say too much)...  But he said he begged and pleaded with this rheumy to see me and although he is slam booked will see me May 2nd "as a favor" so I am incredibly grateful. The prednisone so far seems to be helping a very little bit but not as much as the solumedrol shots did (maybe because it takes longer for pills to work and will kick in better by tonight?) I just started the prednisone 10mg last night... I once had a lumbar drain put into my back for 2 weeks to remove fluid from my brain after my 2nd brain surgery because I was losing cerebral spinal fluid from the operating site and they had to take the pressure off the site by pulling it back towards my spine (?!) but anyways--it was excrutiating pain (the only severe pain I really can remember my whole life although I have had pretty bad pain before) and the pain I am having now is so similar to this. It is starting in my head and running down my back real bad in lower back and down my legs--real deep seated in bones feeling. My husband is beyond frustrated and has been on the phone with the doctors too for me now (and typically he is very quiet and uninvolved in problems). We are floored by the lack of care by these doctors. My fam doc really had not done anything until this past week after he had been promising for the past 2 months "he was working on it" and come to find out he had not even made a phone call yet at that point until he saw I had to go to the ER twice (and was upset at me for doing that and getting the steroids because he said it will "mess up" his diagnosis now)... I mean, what was I supposed to do? I felt like I was dying this week it was so bad (and I know it sounds like I am exaggerating--but I have been so weak and so much pain it has been unreal!) (And this is coming from someone who cannot even remember childbirth pain--it did not even bother me--so I feel like typically I have a very high tolerance for pain). I am trying to take it easy until May 2nd and just hang in there on my precious prednisone diamonds and couple pain pills. I think I may follow your advice SueToo if it gets any worse and go to the Atlanta hospital, "E" and see if they can see me through the ER. I believe they are a teaching hospital and they did my last brain surgery and all.... they do have rheumies there since they said they couldn't see me till Dec. so I guess they would also cover their ER?! My poor husband now is down with a bad cold (bless his heart he has been so stressed out by me) and my baby has been wanting so much to go outside and play again like I did with him last week when I felt better. It breaks my heart for him too--he is so little and deserves to be able to go out and play and not be stuck with a sick mother when there is a CURE!!!  Steroids!!!  I don't know what, why, how, when, where with these steroids--but I do know that they give me relief for some magically unexplained reason--incredible relief usually. I don't understand the hesitation to use them? My neurologist used to give me steroid packs in the past for just a bad migraine! They are acting almost like I have an addiction to steroids and what is my problem? I can't believe that attitude?! I mean, who in the world takes steroids just for the fun of it? They make you fat and have so many horrible side-effects? I just need them for relief right now... and they think I am crazy that the steroids help me and Mobic doesn't help (as much) because they "both do the same thing" according to my fam doc.  They don't for me. The Mobic helps a little (with just the joint pain I have) but not any other symptoms. The steroids even help clear up the rash on my face and everything...  Thanks everyone for your support. My fingers are about to fall off--hurting so bad. I really really don't know what I would do without all of your thoughts, support, and prayers. They mean SO much to me!!!  Nicki
Posted 4/27/2011 2:09 PM (GMT 0)
Dear SueToo, I especially wanted to thank you for your post yesterday!!! It really meant so much to me to hear "from a nurse's perspective" on how this all works. It is so confusing at times. My first visit to the ER the doc said to come back anytime--it was obvious to him I was in a bad lupus flair. My second trip although the ER doc grudgingly gave me a shot of solumedrol, he made it clear that my "condition" was a "chronic one" and not "immediately life threatening" and that I had no business coming to the ER for steroid shots and if I ever came back he would not give me anymore!!! So it also seems that from doctor to doctor they have different opinions on all this! Then he had the audacity to tell me that I needed as a patient to become more proactive and find a doctor that would help me sooner! As if I have not been on the phone daily and online searching for anyone who could see me soon!!! And I am so weak at times it is all I can do to type or hold a phone!!! Do they not understand this?! I feel it is desperately wrong when we have to beg and plead for relief from doctors. They should be treating us with the same dignity that other patients receive for much less dificult issues, diagnoses or not. To me, it is enough to know someone has an autoimmune issue whether or not they have pin-pointed the exact type. That should be enough for them to treat you with whatever works for you in particular. Thank you again so much for your post. It really helped me out yesterday! Nicki
Posted 4/28/2011 11:15 AM (GMT 0)

Hi!

You're more than welcome, I am so glad I can help. Document everything, and don't give up. There are alot of drs. out there who are jerks. Diagnosing AI is tough on a good day with a good dr. Our symptoms, like the lab report abmormals too many drs. are anal retentive about, come and go. The one constant is how terribly this illness affects  our day to day function and quality of life. Drs. need to be more accountable in how they treat their patients, I don't mean to lump the good in with the bad, but I like the idea of a rating system for lupus drs.

hugs,

suetoo

ps. and my skin still crawls when I remember how many times I heard people say...

"But you don't LOOK sick"!!! smhair shocked

Posted 4/28/2011 12:43 PM (GMT 0)
Yes! I've sure heard that one! I'm really weak today and sore all over--had pain running bad through head/spine/lower back into legs last night--felt like pain from lumbar-drain I was on once. pretty intense. not sure if I 'look sick' enough for these docs--but at least fam doc seems to be believing me as he finally put me on prednisone...10 mg. really appreciate you suetoo. I'll write more later but hard to sit at moment. Nicki
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