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Very curious. I hear of almost everyone acting like steroids are instant relief in major flares. Does anyone on this board NOT respond to them besides me?!! Help.
My wife used to respond to 25mg / day at first…
She went down to 2mg/ day once, now back at 10mg/day.
What’s your dosage?
a little history…I have never in my life taken a steroid until a month ago and here is what I have had….20 mg for 1 week, pretty much no response to that. My Rheumy wants me on 5 mg 2x a day for a month, I have been holding off because I do not feel like I respond to them, my 2 finger joints do not go down while on them……well, I cracked lastnight ONLY because I have a valentines party to attend tomorrow for my 7 yr old…..as head room mother I NEED to be there…so. Lastnight I took 5 mg………sore as ever this morning and to be quite frank…it pisses me off. Sorry for the rant but this mama needs working paws OK? SO FRUSTRATED. I can’t be the 1st person that isn’t helped by them, I do not understand this!
Howdy MKay,
Ill be honest- I took steroids for a foot injury a few years back and I swear I was Superman. Felt like I could do anything- I think it was about 20mg with a decreasing dose over the next 2 weeks. I really thought it was a miracle drug because I felt like I could run thru a wall. Im not sure why it was prescribed- I didnt have any swelling and not a whole bunch of pain either. Jump ahead 2 years later- I was diagnosed with RA. They put me on steroids right away- nothing- nada. Joint pain and swelling did not decrease at all. I was told to stay on it by my rhuemy anyway. Currently I take 3.5 mg a day, again because the rhuemy told me not to stop it. I have noticed no change. I plan on getting off it all together but my rhuemy wants me to drop one drug at a time and currently I am reducing my MTX dose so Prednisone is next. Sorry- not a big help but I dont think steroids work the same for everyone and boy they are not good to be on long term. I have been doing the AP for about 2 months and I have been feeling much better!! I wish you well- I have young children also and nothing is as painful as not being able to play with them!!
KeithThey never helped my daughter at all. I don’t think you are alone. Good luck with the party – 7 year olds can be good helpers, especially when candy is involved :).
Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.
way way back before I’d heard of AP – somewhere between 1987 and early 90’s, on 2 occasions I was given a steroid injection because of agonising attacks. The first time, it was right into the wrist joint, the second in the Glut. muscle. On neither occasion did this do anything for the pain/inflammation. I have not had one since. I have heard that, with Palindromic RA, this is not unusual. Also, no NSAIDS ever did anything for me either in terms of pain/inflammation – which I also believe is quite typical of Palindromic RA. This, of course, could also be the case for Lyme which has since been dx’d as at the root cause of my PRA.
Be well! Lynnie
Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)Thanks everyone. It’s so frustrating when you THINK you have some “magic” in a bottle for emergency use only, and you find yourself waking up not one ounce better-if not worse. This disease is not for the faint of heart that’s for sure. Onward.
Hi Mkay,
The first time I tried steroids for my RA I thought the same thing. They did not give me enough so I felt miserable too. Also, most of the times I have taken a bigger dose it does not kick in the same day but the next day for me. I have heard this about cortisone injections, they work in a couple days. I would not recommend them, they are hard to taper off and cause severe side effects.Hope you have fun with the kiddies, take care.
How long have you had RA?Trust me I’am anti-steroid I just took 5 mg while praying for working fingers so I can function at her party tomorrow. I do feel better hearing they didn’t work for some of you also. I was beginning to get a complex. lol
If I don’t laugh I may cry.Anyone else have no response to them? Keep the stories coming….
Oops didn’t see your question, I have had ra around 15 years now.
MKay,
It’s frustrating when the miracle drug doesn’t work! I’ve been there, too. Prednisone did not help me a bit. I had a bad reaction to it, too. Now I wonder if that happened because I also have lyme coinfections along with the mycoplasma infections. I don’t know. But, I’m sorry your Mama paws are not working!!! I understand and sympathize!!!
Michele
@Michele wrote:
MKay,
It’s frustrating when the miracle drug doesn’t work! I’ve been there, too. Prednisone did not help me a bit. I had a bad reaction to it, too. Now I wonder if that happened because I also have lyme coinfections along with the mycoplasma infections. I don’t know. But, I’m sorry your Mama paws are not working!!! I understand and sympathize!!!
Michele
Michele,
First off thank you for replying. Very weird you say this because I just told my husband at dinner the reason the steroids won’t work on me is probably because I have lyme. I don’t want the dx of lyme, but I feel I’m not getting better because I truly don’t know. My GP tested me for lyme in January and ALL they told me was it’s NEG. and it’s RA. I requested the western blot and to be quite honest I’m not even sure that’s what they used. Fast forward to January 30th I went to a rheumy and I said to the PA before the doc came in that I suspected lyme, she said nope it’s neg. SIGHS. I feel like no one is listening. The rheumy comes in and he examines every joint on my body says RA….do I sit there and argue his dx? I go back March 4th and trust me him n I are going to be having a little “sit down”.
Please tell me how you were finally diagnosed with lyme. I’m thinking abut ordering the Igenex test and walking it with it and INSISTING they do a blood draw so I know for sure what exactly I have and that we are treating it correctly. Will he refuse this? Will he think I’m completely nuts? If it’s RA and not lyme FINE, I do not care I just want to feel better. ANYONE with lyme please tell me how your doctors reacted to you wanting the IGENEX done and how to go about this. ENOUGH is enough, something has to give. I know my body better than any doctor but I feel as if they just want to slap you with a dx and move on. Don’t get me wrong I DID like this rheumy and he seemed open minded and I DO think he will work with me, or I would’ve all ready moved on. I’m just super frustrated right now and need to be moving in the right direction. I feel like I’am spinning my tires instead of moving forward.
Thanks again this board is a lifesaver; literally.
P.S. He also dx’d me with flexor tenosynovitis of the middle finger and this is what is making me SUFFER. It’s painful on top of the hand on the joint that leads to your midle finger and the palm tendon. I’ve never experienced such pain and I’m no wimp. Let’s put it this way if it would’ve been a tooth this morning I would have had it pulled. SO PAINFUL. It almost leaves my hand useless at times and this JUST came on after I was doing a 3 room renovation before xmas. The major pain/swelling started on xmas day. I don’t even know, all I know is I have never had pain like this before and I have gave birth with no meds.
He also dx’d me with flexor tenosynovitis of the middle finger and this is what is making me SUFFER. It’s painful on top of the hand on the joint that leads to your midle finger and the palm tendon. I’ve never experienced such pain and I’m no wimp. Let’s put it this way if it would’ve been a tooth this morning I would have had it pulled.
mkay – I have often had that sort of agonising tendon pain in the palm tendon – felt like someone had pulled them up through my wrist and stretched them to snapping point. Whatever the rheumy may have diagnosed you with, he will be dx’ing from his paradigm (which is not infectious origin and which is not Lyme). If it were me, I would be having the Igenex tests to really rule in/rule out Lyme and/or co-infections. There are many, many nay-sayers in conventional medical circles, coming from a position of ignorance about the ways that Lyme manifests and also of the shortcomings to many types of lab testing. Igenex would be my choice to really rule in/rule out and then I’d proceed from there. You dont need your rheumie to do this, any doc can do the blood draw.
Be well! Lynnie
Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)Ahhh…well, ditch this Rheumy for helping with lyme. You won’t convince him. It was my first Rheumy who did the wrong test for lyme. My Elissa test was negative. I think the Rheumy’s mean well, but they are trained to look at chronic illness in only one way. They prescribe immune suppressing drugs. There are a lot of alternative medical types who look at chronic illness in other ways…so don’t waste your breath on this rheumy who insists your test was negative. He knows no other way and has been thoroughly trained to not look outside of his own clinical box. He is a consultant for you. If you think you may have lyme, go to a consultant that deals with lyme and see what they say.
I ended up getting the necessary items directly from IGeneX and having my general doctor draw the blood and send it. I had (and still have!) two bands positive. 23 and 41. 41 is not that specific to lyme, but band 23 is. So, the next problem was that the CDC criteria is not met…they suggest a positive test is five positive bands. If you go this route, insist to get a copy of the lab report so you can personally see what the report says. My general doc told me it was negative and the report showed two positive bands.
You might also ask to have your CD 57 test drawn. It’s another indicator for lyme coinfections. That has to be done through LabCorp only. There are only a couple of LabCorp labs that do this test. It’s a morning blood draw. But, that will give you a much better sense of how compromised your immune system could be from lyme. Anything lower than a 60 indicates lyme. (Mine was a 33) This test also has problems that on any given time of day it can fluctuate, but most LLMD’s want that fluctuation to be above 100.
The doctor I have been working with is a Rheumy that has lyme disease herself, so she is a “heretic” among rheumatologists. I’m sure her peers call her a quack. But, I am out of pain in her care. My lab tests show all the same bands of lyme and babesia is off the charts beyond high, but through her diet and detox plan, I feel pretty darn good! I attribute that to diet and detox because my labs have not changed a bit. I also know I have mycoplasma pneumonia and viral infections. Chronic disease is multiple things going wrong in a system.
My best advise would be for you to ask to get a list of LLMD’s and get a second opinion from a doctor that looks at chronic disease differently. Go to a different consultant. By the time I found the rheumy with lyme herself, I’d seen 13 other doctors. Part of that was I stayed in my insurance network thinking I would avoid paying out of pocket. Rheumy with lyme is an out-of-network doctor with high prices. Well worth it to be out of pain!!!
Second piece of advise, keep a binder with copies of all of your lab work in chronological order. This is for your own reference and for any other doctors with whom you may consult.
Other factors for me: I had a Genova Diagnostics genetic test done to find out I am missing genes to detox on my own. I not only miss the gene for glutathione, I miss a gene to the precursor that makes glutathione. That’s why I had enormous herxing on tiny doses of minocycline and why I had intense fibromyalgia. I do not detox on my own at all. Detox is so critical for me. Mold can also cause problems for people with detoxification pathways that do not function. Heavy metals is also a contributor to chronic illness. (ie. mercury amalgam dental fillings) Another factor for me is that I had babesia symptoms. I knew it because folks on this board told me my symptoms matched babesia. I asked every doctor I saw if I had babesia. They all said no. When I finally went to my first LLMD, he did the wrong babesia test!!! My rheumy with lyme found the babesia. There are multiple kinds and I just happened to have the more rare version of Babesia WA1.
I’m blathering on too much…but those are the key points of items that helped me unravel my illness to recover quite a bit. I still have more to go in recovery but I am soooo much better! If you intuitively think something else is going on than RA, trust your instincts. But find doctors who specialize in what you think you may have. Most Rheumy’s do not understand lyme. And neither do Infectious Disease doctors. If you don’t know of the huge political debate between IDSA and ILADs doctors, arm yourself with the points of contention between these two medical societies before you proceed to a Lyme doctor. ILAD’s doctors treat chronic illness while IDSA docs claim chronic lyme doesn’t exist. The semantics of the disease causes problems politically and leave us poor patients in pain and bewilderment at these specialized doctors inability to look past their semantics and seek solutions for the humans they are treating. Personally, I think the labeling of the illness is part of the problem. The word “lyme” really means borellia burgdorferi. But most people who say they have “lyme disease” have a complex illness with many things beyond just Borellia Burgdorferi.
I’m blathering on too much. Take what works for you and ditch the rest!
Michele
Great post Michele – not blathering at all, you make very salient points and give great information. And I totally agree with you about the label of Lyme. It’s started to be changed to ‘Mixed Infectious Systemic Disease’ by alot of Lyme Docs. The Lyme label really only accounts for the BB strain that was first discovered in Lyme CT. It’s so much more than that.
Be well! Lynnie
Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)Thanks Lynnie. I get carried away sometimes. 😉
Mixed Infectious Systemic Disease does seem more inclusive. The whole “Lyme” semantics gets very dicey.
I live in Virginia and our legislature is currently debating a bill that forces doctors and labs to disclose how unreliable lyme testing is. Check this out:
http://www.icontact-archive.com/FBkbi1IUxiGEZy8CZmrP8-HZipaV5Fc7?w=4
Michele
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