Inflammation

[Sandra]

Hi all just a question I have been thinking about.....is there ever a time when "we" people do not have inflammation? My SED rate or ESR is consistantly about 3X the norm...ie if it is supposed to be 25 I'm usually at 80 anytime...right now I bet it's higher as I am in tough shape right now. What i was wondering though is with AI disease is there ever a time when the inflammation is non existant? Thanks Sandra

[Katybarstool]

Hi Sandra

Interesting question. I'll be interested in hearing the answer to that one.I had a battery of blood tests last week, when I was in a minor flare. We don't get to see the full results in the UK, but I bet I will be told everything is 'normal'.

Kathyx

[Scottietottie]

Hi Sandra 

I'm not sure whether inflammation has ever actually shown up on my blood tests but my doctor has told me it's inflammation that's at the bottom of most of the aches and pains.
I do know I've been taking pain killers daily for the past five years if not longer and I can't say I'm ever pain free. I'm not in severe pain. It's not incapacitating me but it's my present 'normal'.

Take care - Scottie 

[wednesday mc haggis]

I am sore everywhere most days, athralgia and myalgia , i know i have inflammation i can feel it at my knees for sure, yet my ESR is normal range, all my bloods are unremarkable, seems to be no correlation sometimes between bloods and symptoms in AI , why its taken so long to convince docs, i seem to show nothing at all, yet im like the sahara , sinusitis , headaches, glands flared up ,  IBS flared up , CNS symptoms, thick mucous in throat ,cold feet ,pins and needles, limbs feel heavy ,most days im hoarse,im quite deaf , tinnitus ,  some days im fine somedays breathless on walking about, brain fog, pain, fatigue that means i can be active 5 hours a day , anymore and im ill  , honestly can say 2 days a week i get a reprieve, and other 5 days im drastically tired, yet my bloods are unremarkable lololololol go figure , ppl here seems to have such similar symptoms yet such different blood results, but seesm to me were all imflammed :-s

Tx

[eyeamdry]

I've been taking Plaquenil and Methotrexate for two years.  For about the first 18 months, they threw in prednisone.  My readings went from "too high" to what now looks fairly normal.  I also have pain med Vicodin to help deal with the rest of the pain I have.  I have to say, though, most days, I'm better than I was before I started the meds.  I think that was key.  Start the meds, stay on them.........

My rheumatologist's PA explained that I'm sort of SJS in remission.  I still have it, but it's sort of simmering.  I STILL HAVE DRYNESS, DRYNESS, DRYNESS.  Eyes and mouth.  I also have numbness and neuropathy.  But, I do think that I'm living the best I can given my situation.  I get the IBS, fatigue, some days in bed all day etc. 

Sandra, what are you taking for inflammation?  Lucy

[Sandra]

Hi all thanks for the replies...so far I take nothing but advil and tyelnol 3 when things get bad, I do take prednisone and have since 1989 when I was diagnosed with Addison's disease. But the pred is only at 7.5 mg daily for the replacement of a non-functioning adrenal gland.
I have tried plaquenil at 200 mg and at 400 mg. The 200 mg seemed ok but my rhuemy wasn't content and raised it to 400mg that dose I could not take. I began having cognative problems, memory, confusion, fear just didn't feel myself at all.
So now that the inflammation is steadily bad and I hurt an awful lot, there is also lung involvement. My respirologist wants my rhueny to try something else and I would like to try something else. MY mother-in-law takes methotrexate for RA and seems to do pretty well, I talked to her allot about it and any problems she might have had. She only told me in the beginning she got mouth sores, bad ones, I remember...but then after being off it for a year or so her new rhuemy asked her to try again and this time gave her folic acid to take with it and since she has had not trouble.
My rhuemy thinks that I may have lupus, but any testing specific to lupus has been negative. My immune system is really messed up I understand that now there are several antibodies that I test positive to, I am IgA deficiant, one rheumy I had a few years back in Toronto first tested me and after the initial visit he pretty much said you can go home I see no issue here but later called me back. Of coarse i questioned why as he had all but told me i was ok and the nurse insited I come back..it's a 2 hour drive for me...when I saw him he said and I quote " I would like to tell you you have lupus but I can't, it's bigger than that" ... .shoot i didn't even know really what lupus was, now it's years later and I understand completely what he was saying, my immune system is a mystery and I get all sorts of weird symptoms and problems.it dosen't scare me anymore though, I don't care what it's called or even if it has a title as long as I get to live life and do it without too much pain. So that's why now after all this time I am going to ask to try something new. Thanks Sandra