pain cant take prendisone anymore suggestions

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panther fern
Regular Member


Date Joined Feb 2011
Total Posts : 163
   Posted 4/5/2011 8:28 AM (GMT -6)   
hey having trouble with swelling and pain, lupus, rhuematoid and osteo mild, fibro, gerd, ibs gulf war syndrome, and others, ny main meds are methotrexate and orencia infusions klonipin at night to sleep and oxy er i can not take steriods prendisone it makes my blood sugar high diabetic not terrible borderline any suggestions

tfofd
Regular Member


Date Joined Apr 2011
Total Posts : 56
   Posted 4/5/2011 12:59 PM (GMT -6)   
How did you get that many health problems diagnosed? Doctors tell you it was one disorder and then another?
 
Autoimmune disease causes muscle pain so a fibromyalgia diagnosis in the presence of Lupus or RA is unnecessary. Osteoarthritis is not due to autoimmune disease and your arthritis would be due to Lupus or RA. Your likely either going to have Lupus or RA, I'd be telling my doctor they need to get their facts straight.
 
Your on oxy. That's a strong pain pill. Narcotics only last for so long and pain rebounds. Doctors here rarely prescribe such. You can't even get lortab now for a tooth abbcess. Ultram, and that doesn't do anything.
 
There are other corticosteriods. I like Toradol injections for pain relief but in the case of renal problems or Lupus, you likely can forget that.

tfofd
Regular Member


Date Joined Apr 2011
Total Posts : 56
   Posted 4/5/2011 1:00 PM (GMT -6)   
Plaquenil can calm pain down too.

panther fern
Regular Member


Date Joined Feb 2011
Total Posts : 163
   Posted 4/5/2011 8:13 PM (GMT -6)   
I have been diagnosed with all ... started with the persian gulf. I was diagnosed with fibromyalgia before the lupus, then lupus ... RA in a few joints i had a hysterectomy, so i have tiny bit of osteo, part of the persian gulf stuff... it is complicated... to say the least..Because I got ill serving in the middle east they are putting everything down. It is now that the iraq/afgan stuff is going on and more people are getting sick and people from the first gulf are having many symptoms such as auto immune and other things everything is documented. I mostly just say lupus because it covers my joints. it is beyond frustrating. I have a great rheumy, and he also does a rotation at the VA hospital once a month so he is familiar with a lot of people with Agent orange or problems with exposure to different chemicals or whatever. Who knows? all i know is I am sick, swollen, and in pain ... a lot and it is almost 20 years of declining health and tenacious. the oxy i take is a slow release day and night i have breakthrough pain meds which are narcs as well but i do not find them to be beneficial as they are not an anti inflammatory and i already take a slow release i take them only if i have really bad nights. Yea toradol is nice but i think with the MTX and orencia and the cortisone injection s in specific joints dont think toradol is a choice...lol

I was on plaquinel maybe i could try that again. I have been sick for a long long time I have had several doctors over the years for second and third opinions. I have told them i am a hypochondriac and they tell me i most definitely am not.... so yes the fibro is an unnecessary dx I understand but when i am not in a full flare then it is fibro

i will have to look plaquinel up to see if it helps with inflammation... take care... I actually have more symptoms that are really making me a bit worried i get to pick a neurologist next. memory and brain issues...It would be nice to just not take any meds for awhile. I have tried that too... not a good idea for me. Hey.. it could always be worse. Hugs to you and hope you have some really good days. what state are you from? I find physical therapy and massage to help a ton! Heating pads and icepacks too depending on the joint ice packs for migraines...

tfofd
Regular Member


Date Joined Apr 2011
Total Posts : 56
   Posted 4/5/2011 8:48 PM (GMT -6)   
I have been through the rigamaroo. Chronic fatigue syndrome, EBV, autoimmune disease, Lupus, Fibromyalgia, Myofacial pain syndrome, and now MS or mixed connective tissue disease. Still waiting to see a rhematologist. I will be happy to get the autoimmune diagnosis back, I have been sick for way too long not to have treatment. I've responded to antimalarials but it only lasted for so long, and that was that. The autoimmune disease can make you sick everyday, very bad sick, for me, the difference in the flare is that I am bedridden and I cannot make myself do anything. Alot of days, I don't do much anyways, but at least I stay out of bed. I could not manage through life right now without neurontin and toradol. Narcotics just make me vomit. I loved duragesic pain patches at one time, but my tummy couldn't handle it anymore. I haven't tried prednisone yet, but more than ready to. I love PT too, but you can't go constantly. My doctor offered to get it for me in home, and tell a little lie that I was so sick I couldn't drive, but I told him no. He diagnosed me with fibromyalgia but he doesn't take any of my symptoms seriously, and that's hard when your having serious pain and no one will do anything. No one believes I'm sick because of that diagnosis. My ANA is high, I have mixed patterns, and my RNP is high. I don't fit completely into the criteria for mctd or ms, but maybe I'll get lucky and find out it's one or the other. I need to know what's really wrong. Don't want them playing a guessing game with me anymore. Thanks & I live in west virginia.

panther fern
Regular Member


Date Joined Feb 2011
Total Posts : 163
   Posted 4/6/2011 2:47 PM (GMT -6)   
it is hard not having a firm dx. harder sometimes really knowing whats wrong. I am so tired of being my own patient advocate. I know too much, sometimes i would rather be oblivious to everything. i live in colorado. for the past 4 years michigan before. It really doesn't matter what auto immune you have because there really is no cure. Face it everyone is terminal..lol it is how we deal with it. we just know from now until whenever we have different obstacles. somedays i just don't want to play in the jungle gym, or master another obstacle. I am to the point where the rheumatolgist has done all that they can... and i just have to do the best ii can and wait until the flares are on vacation.
I hope they are able to pin point what dx best fits your symptoms. take care.

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7699
   Posted 4/6/2011 3:50 PM (GMT -6)   
People can, and do, encounter long interludes when symptoms are not present. Many people on this forum have had periods like this 0 with lupus they are not called 'remission', instead they are times when 'your lupus is quiet'.

Having a firm dx doesn't really happen that often for lupus patients, more often we are treated by symptom and the process of elimination. Most AI diseases work this way simply because there are no defining tests. The best the drs can do is treat the symptoms. And if you dr refuses to do that, I suggest getting a second opinion.

Most of us *can*, and do, feel better.
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

tfofd
Regular Member


Date Joined Apr 2011
Total Posts : 56
   Posted 4/6/2011 5:09 PM (GMT -6)   
I'm so sorry. That's kind of my fear, getting better, getting worse again, then nothing working. I had one antimalarial that worked for a month straight, after I quit taking it, it did no good afterwards. Plaquenil worked for 3 months of 5 that I used it. It was hard to finally feel better after 14 years and then end up sick again. All you have to depend on is medication to make you feel better, crappy choice.. but it's better than nothing.
 
I really don't like having to tell a doctor how to do his job. It burns me up. But it happens frequently. I think because I got one that just doesn't want to do anything for me. That old butthole. I should have ran the day I met him.
 
 
  
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