and I'm not real happy with the answers i got. My crp is .2 something which is great, she says I am in complete remission and i was astounded. How the hell can be in complete remission and have so much swelling, pain and just over all feel like sh*t???!!!!!
She said my vit d and calcium levels are way low and that could have something to do with it, so more vitamins. She said the swelling i have isn't from the ra but probably a neuropathy of some sort. i don't really understand what neuropathy is so hoping to have some time today to google but if anyone has some good sites or info, that would be greatly appreciated.
She also started my on lycria and gave me norco instead of vicodin for the pain but i believe its still the same base drug with less Tylenol.
The shaking she said is also probably from neuropathy. She said my weakness may be as well or it could be an accumulative affect of the long term steroids. She said the steroids won't help with neuropathy swelling so i can go ahead and start weening i mg every three weeks. Boy, its going to take another 6 months to get off the crap!
I asked about the antibiotic treatment and she says she didn't think it was appropriate for me because of the gi troubles i already have, the fact that my stool sample is clean and I also have a yeast problem.
I spent over 30 minutes with her but don't feel that I got any new or useful info other than my swelling isn't caused from ra, which was news to me. This swelling has been present, to varying degrees for 2 years, way hasn't anyone told me this before?
I am to continue my 70ml of mtx weekly as well as the weekly humira and placquenul and will start to ween down on the prednisone.
It seems several of us are in this same situation where they tell us our disease is under control but we still feel awful!! Whats up with this??
Hi Michele - this all seems bizarre to me. One of the others will be answer your queries re neuropathy & your remission. I was told hardly anyone with RA goes into remission - is that true?
Michele,
They think I have neuropathy as well. It is basically damage to your nerves. Autoimmune diseases like RA, Vasculitis, Diabetes and Sjogren's can cause the problems. Your nerves become damaged causing all kinds of different symptoms. It usually starts in your hands and your feet. I've been researching it a lot myself, especially in relationship to the RA,Vasculitis and Sjogren's. I'm finding it difficult to find any really good information. They are so focused on articles about people with Diabetes and HIV that I am having a hard time understanding how it relates directly to RA. Sjogren's, which I have always thought of as a rather benign illness when compared with other autoimmune problems evidently can really cause nerve problems.
Your Rheumy actually may be on her toes with this because pain and tingling are the first signs of neuropathy. And, our nerves call heal if you can get treated. However, the pain can be excuriating.
Did she give you a referral to a Neurologist because that is who really needs to evaluate you and give you medications for this problem?
I do have a couple of links. I hope others post more because this is evidently a more common problem than most know about. Right now, it is causing me major distress.
http://www.thebody.com/pinf/neuropathy.html
http://www.ninds.nih.gov/disorders/peripheralneuropathy/peri pheralneuropathy.htm
Neuropathy seems to be ignored until it gets really bad. Carpal Tunnel Syndrome is one form of it.
If you have that, you are still going to feel bad. And, we've talked many times about how bloodwork is not quite the indicator that some Rheumys want it to be. Mine said that both my RA and Sjogren's are under control. Well, I don't know about that. I am so sick from the nerve problems that I can't tell you for sure.
If you can get down on the prednisone, it will be better on your body. She's also taking the safe approach with your RA by keeping you on your other meds in the meantime.
Do get to a Neurologist. Mine has already helped me.
I'm sure not going to come on here and dispute what anyones doctor say; but I'll agree with Cassie....it sounds strange.
You might be in a medication induced remission....but it doesn't really even sound like that. Sure would be interested to know if this "Remission" continues once you aren't on the medication.
"Remission" isn't even a word my doctor uses. Even after all these years even when I've been doing well he'll only say "Looks like we're doing a pretty good job of controling it"
Let us know what you learn about the neropathy. I'd be interested to know that too.
I guess she is saying remission because my crp is down and my labs look good. I am sure it is from the drugs and would guess it would come back if I stop so I don't have a problem continuing the medications. She said that hand and feet swelling from ra usually presents as swelling at the joint, my hands and toes swell between the middle joint and the base of my hand or foot, there really isn't a joint there, just soft tissue.
I have been trying to read about it but as Deanna said, its mostly combined with hiv or diabetes, I will check out the links she gave me in a second.
I did develop reflex sympathetic dystrophy in my ankle three years after a nasty fall and apparently that is nerve related as well and it was after that, that I really started having medical issues. Apparently RSD is pretty nasty and can travel to other places and never really goes away.
The symptoms that I can find on neuropathy describe me to a T. Muscle weakness, shaking, tremors, cramps, change in bowel habits-I went from years of constipation to now chronic, severe diarrhea. Dry eyes, blurry vision, dry mouth. Dizzy, especially when standing, nausea, intolerably to heat and cold, urinary incontinence. Jaw pain and ringing of the ears. Troubles breathing and heart palpitations. The list goes on.
The problem is that there doesn't seem to be an easy fix. She did not refer me to a neuro person yet, I see her again in 6 weeks and if things are still the same, I will definitely as for a referral. Off to try and do more reading
All I can add is that Lyrica did help some but not totally. The intense burning settled down but the pain and numbness is still there.Michele, don't wait until your next appointment. Just call the office and say that you want a referral to a Neurologist. Or, you can ask about something like Neurontin. They tried me on that and the pain relief was immense. Unfortunately, it made the tremors in me worse so they changed me to Bacolfen.
Also, my Neurologist started me with PT to help with all of this stuff. What I've read does sound pretty discouraging. But you have to keep believing that there is someone out there that knows how to help you. The first PT wasn't going to follow the Neurologist's recommendations so I switched.
We might not be able to get entirely well, but we can find our best solutions. If you don't have to have a referral, you can just call a Neurologist directly. But I like getting a referral from another doctor. It seems to work out better. Besides, if you call your doctor and say that you want a referral maybe they will pay better attention to your problems.
You shouldn't have to live with less.
Just don't wait because if may take some time to get into that appointment. So you wait 6 weeks plus another 4-6 weeks. That's about 3 months of agony that you don't need to be going through.
I'd ask this doc how he/she defines remission. Yours doesn't sound like remission I've seen described. I copied the following from http://arthritis.about.com/od/arthqa/f/remission.htm, and it doesn't sound like you:
While there is no known cure for rheumatoid arthritis, up to 30% of patients may feel they are "cured" of their disease. What these patients are actually experiencing is a clinical remission. A remission in rheumatoid arthritis is defined as the absence of clinical signs of inflammation. While a very small percentage of patients may be able discontinue their arthritis medications, over 95% need to continue on the medication to remain in remission. The American College of Rheumatology (ACR) classification criteria for determining clinical remission include:
It would bother me a lot if a doctor looked only at my lab tests to determine how I was doing. That would make me think he was looking at paper and not even seeing me, the patient/person. If the only valid aspects of disease are numbers on a page, they are playing a game of numbers and not providing real health care to human beings. That may not describe your doctor. But it would make me step back and wonder.
I agree, something is definitely still flaring. However, I have to admit that I do feel better in the am and the pain gets worse as the day progresses, which is more neuropathy than ra. Apparently, the rheumy is also going by the location of the swelling. Since my lab shows a low crp rate and my swelling is more in the soft tissue area rather than the joint areas.
I have never tested positive for ra or ana, but we all know that really isn't an exact indicator. After reading some, the neuropathy does seem to fit, especially since I have already had the reflex sympathetic dystrophy. It explains why I can't tolerate hot, why I get so dizzy, the sensitivity I have to everything, including my socks, to the point that I have already cut out all the elastic in my socks!
I looked up on line to try and find a doctor and most of the neurologist seem to also have a phys degree?! I don't think I will wait until my next appt. I think I will call the rheumy Monday and if they aren't willing to give me a referral, Ill find one on my own as my insurance doesn't require it but I have no idea to see. I found an 800 number to the hospital for doctor referrals so I will start there Monday if the rheumy isn't helpful.
Glad to hear your going to pursue it. You've been through so very much these last few years. You need a break.Michele, sorry to hear about your problems, here are a couple of points that may be of help. It seems very likely that my RA was actually under control (???remission???) for several months before we realised my foot pain was not RA but neuropathy. This was confirmed by a Nerve Conduction Test done by a neuroligist. As has been said above, getting info on neuropathy is not easy so Google like mad. Still trying to address the neuropathy problem but looking hard at B12.
The other point is that here in Australia it is generally not ethical for a specialist to refer a patient to another specialist but to alert the family doctor to any suspicions they may have and leave it to the family doctor to issue the appropiate referral. If it's the same where you live then your rheumy has acted prudently by raising the suspicion of neuropathy and leaving it to your family doctor for further action. I'd be interested to know if your health system is the same or different as there have been posts from time to time in which a specialist has been dumped on for not referring to another specialist, a situation which normally just does not happen here.
Good hunting with the neuropathy search. BTW, my rheumy took me straight off Arava as there is a possible link, don't know about any of the other meds.
Michele,
If you go to the arthritis foundations website there is a phamplet you can order about soft tissue swelling in RA. You may want to order and bring it to your doc. I had a RD that didn't think my tissue swelling was RA and I found another RD. I think your swelling probably IS your RA. Sorry you are going through all this.
I agree Trixie. I think it's wrong that he hasn't referred you to a nero yet too. My doctor has tried to get me to go for a while now....but I've been putting it off. (and my problems aren't even half of yours) He's prescribed Lyrica; which has helped some, but he too suspects neropathy; which can be caused by RA he says.
RKgal makes a really good point about the labs too. So many of us we dx'ed with RA without positive lab work. You were as well....so how can he go on this? Even when I've been at my worst my Seds rate is only in the 30 range. That's high for me.
It's all so very confusing! Definately try to get referred to a nero....sounds like you definately need to seek treatment with him.
Good Luck Sweetie. Sounds like you are having a horrible time with things. Hope things settle down for you soon.
Michele,
Just wanted to tell you what my RD says about the so-called "Remission." On my last blood tests, both my CRP and Sed Rate came back in the normal range for the 1st time since I was diagnosed (5 years ago this coming February). So the first thing I said is, "Why am I still in so much pain?"
His answer is that once the RA is under control (he does not use the word remission) you will still have residual pain. The damage that has been done to your joints previously will still cause pain. So he believes this is the time to really focus on controlling the pain. I am fortunate that my RD is also certified in pain management.
I have Trigeminal Neuropathy as well as Peripheral, which in his opinion was caused by nerve damage due to RA. I am taking Gabapentin (generic for Neurontin) to help with nerve pain and I cannot tell you what a difference it has made for me.
Anyway, once he took the time to explain to me that no matter how under control the RA is I will never be pain free, it helped me to deal with it a little better. Before that, I kept thinking if the drugs are working why do I still hurt. Now I realize I will always have pain, it has helped me to accept what is happening and to concentrate on ways of controlling the pain.
I so hope you are able to find appropriate help so you can have a much better quality of life.
When I first was diagnosed in March of this year I went on a huge downhill slide. From occasional pain to pain daily. I needed a walker at night by July and a wheelchair twice on my first trip to my AP doc in August. By May I started with what they called 'unexplained neuropathy'. I had an appointment with one of the top Neurologists in the US. They were trying to find out why I had carpel tunnel in both hands and one foot as that is unusual to RA (or PRA) which I have. The areas effected were numb and still had 'pins and needles' too. Tell me how I could have both but...you get my drift.
I had peripherial neural testing where they stick little needles in your various body parts and see if you can feel it. They also did this vibration thing with what looked like a tuning fork to see when you stop feeling the vibrations. In my feet I had damage - I couldn't feel the fork doing it's thing. My hands were better - but 'going'. I, too, had a lot of soft tissue problems.
Anyway, I was freaked, made an appointment with an AP doc and because of a screw up at the Great U was unable to get the 'official results' of the study for months. I never went in for the MS testing they wanted because I was presenting enough shaking, tremors, etc. that while it wasn't MS they wanted to 'be sure'.
By the time I was able to reschedule an appointment I'd been on AP for 2 months I think. These neuros are sneaky guys - they meet you in the lobby so they can watch you walk. Half way back to the room this guy says "wow, you're walking fantastic". The last time I was hobbling and they had to help me stand up. I had made the decision to just get the results and get out - I had been 'interviewing doctors' about AP and was not going to waste my time describing what I wanted and the research etc. This guy was a neuro and not going to help me so why waste my time? He asked me what meds I was on. I said I 'found the cure - antibiotics' and expected a negation thing as I'd got from every rheumy and GP I'd met so far.
Not this guy - he was intrigued. He went to the Roadback site, looked under studies and then opened Pub Med and read some of the actual studies and compared them. He said, "there's real science behind this". I wanted to say "duh" but as this was the only doc interested I didn't. :-)
Anyway, he told me there are 3 types of neuropathy. The first is actual damage from a disease like diabetes and MS. The 2nd is from swelling like in RA. And the 3rd is like when you get hurt and a nerve is damaged. He said that nerves will heal themselves but it takes a long, long time. In my case, he said, reduce the swelling and the nerves would eventually heal.
On AP it did. The swelling went down and the hands and feet 'came back'. I think the lemon/olive oil drink helped a lot because I added the lecithin for reducing neuropathy. I just have a teeny tiny bit left on my right hand and I think that will go away soon.
I also wanted to comment - My mother is starting AP on the 10th because of GI problems. She has IBS and problems with her stools etc. It is so bad she has to curtail her life so she can always be near a bathroom. This means no shopping, or going out to parties etc. Anyway, she couldn't take it anymore. I gave her some of the research linking H Pylori and mycoplasma to IBS etc and she didn't even read it. She had seen how bad I was and how much better I am now and asked her doc for the Mino. Her doc said no. And a 70+ year old woman who was concerned about hurting her docs feelings on multiple occasions got angry inside when her doc said there wasn't enough research. She just quit her doc and came over to mine. Yes, she knows it can get worse before it gets better - but she can't take it anymore and is willing to try. Also, I have GI issues and have even seen pictures from a scope I had showing stomach erosions. I'm doing fine on the Mino and when I get off the NSAID's my stomach will be able to heal.
Finally, I just want to say something about rheumy's in general. I am starting to believe in a conspiracy theory - and while you don't know me - I much prefer my OWN conspiracy theory than somebody elses. And the theory that these guys know and don't want to help us is beginning to be something I believe in now.
When I first went to my rheumy and he said "best fit" is RA I didn't want to believe him because I KNEW how my disease started. I am truly the luckiest person on the planet in that the absessed tooth came weeks before the first PRA flare.
I think I've posted about when I'm hysterically talking to my GP about antivirals (did I mention how desperate I was?) and she told me we'd try all the traditional drugs a few months at a time until 8 years go by and then we'd do ABX or AZT. Those were her exact words. I don't think I mentioned that my rheumy is in the same office and he had hours that day so we got him to 'conference' with me, my husband, and the GP. He was there for that conference. He's the one suggesting plaquenil - the one drug I was not willing to take because of the vision thing.
We go home and hubby says they'd be doing more if it was their family. We find AP. The rest is history.
We make another appointment with the rheumy to ask for mino. His response when he sees the book and my husband says "we want minocin" is "well its better than any medicine I could give you". Oh yeah? Why didn't he offer it in the beginning?
He gave me the script but really has done no monitoring. I am on my own with this. I have "interviewed" seven docs and all have been willing to write script but nobody is willing to monitor me. By the time I got to number eight, I was like a junkyard dog on a leash. She, at least, was willing to look at the studies and monitor me. As of yet, I have not heard back about what she thought about the research.
I, or people I know, have been told by rheumies that 1) minocin can cause lupus 2) minocin can cause hepatitis 3) I reserve it for my really worse off patients and 4) it doesn't work. If they know enough to know what the EXTREMELY rare side effects are, then they know that just changing to doxy can work if those EXTREMELY rare side effects happen. And if these guys are talking patients out of trying AP - then they would have no 'proof' that is DOES work, do they?
Sorry if my anger is showing. I lost a year of my life because of these guys. Think of how much better how much faster I would have been if he would have given me the Mino in March.
As for remission - have you looked at your paperwork yourself? I'm glad somebody posted the definition of remission. I don't think I agree with it ( :-) but it's good to see it. I think if you have any signs that you have RA you are not in remission. I still have twinges etc. But I am only about 1/2 way to 'remission'. My RF went from 706 to 353. My CRP went from 10.8 to 5.8. Yet I feel fantastic. According to that post I have a lesser chance of getting remission. But I think I will - because of how my symptoms have lessened and how I am responding to AP.
Anyway, again, I am praying this isn't too pushy and 'loud'. I've been trying to hurry the typing and the hubby is standing over me because we have to take down all the XMas stuff today and start going room to room and packing up the house. We're moving across the county at the end of the month. Again, I hope I wasn't abrupt - I just felt compelled to comment.
Hope it helps,
Pip
I think you just laid in a very good case for AP. If I see my Rheumy again and he just keeps taking me off meds, then I might just investigate the AP therapy. It's the part about getting worse that bothers me so much right now. I'm so bad right now, I can't even conceptualize what worse would be like.
But I'm glad you said all of this. It gives me more to think about. And you were not abrasive or offensive, just told your story. Thank you for that.
And what a story it was! Gosh, Pip, thanks for sharing. I am beginning to buy into your conspiracy theory, my (former) rheumy, whom I saw for 10 years, certainly knew about AP, but never mentioned it, even when I developed lung involvement. "Well, when your lungs get really bad, we can try Cytoxan". Gimme a break, that is a cancer drug much stronger than Mtx. Luckily, I found the roadback.org website, found a new rheumy, and have begun AP. Like you, I am pretty much on my on about monitoring, etc., but that's OK, i have help from roadback. When I asked about AP (on my last visit to my former rheumy) he said the standard line: "you might develop resistance, we might need it later for something, you could develop lupus". Total scare tactics. He was, as Cheryl Ferguson from RB so eloquently put it, "content to monitor the inevitable downward spiral". Good health to all, whatever treatment you choose - but let it be YOUR choice, after you have been informed about ALL the options, including AP. Love to all, PatYeah, I didn't understand the whole "you can't do AP if you have GI problems" Justin has Crohn's and one of the options out there for him...SURPRISE...is AP. >.< Why does all of this have to be so confusing? Why does everything seem to lead us astray. LoLI had colitis and am doing AP so... you just got to take your probiotic everyday.. i take mine at like midnight
Deanna,
Even some AP docs buy into the 'you gotta hurt' mentality but I no longer believe it. There are enough posts on people being knocked on their butts at pulsing 200 mgs MWF and dropping back to 50 mgs MWF and working their way up and being fine. The whole thing about AP is learning how to manage your herx. Twice over the Holiday I had to skip a dose because I was doing too much and couldn't 'afford' a herx. I'm still doing fine. :-) Fingers crossed!
I soooo know what you mean about being worried about it feeling worse. I know for me that was the part that scared me the most. But I hurt so much I figured it was only going to get worse so might as well bite the bullet and deal with it first off the bat. I figured most people posted that they saw something around the 6 month mark - something that made them keep going - so I was willing to give AP a year to show me something. Imagine my surprise when it was only a couple of weeks.
And while I surmise that the immunesupressents are what makes it take longer for AP to kick in - there are 2 people that post that after decades on the regular drugs they got relief within a month. They had good days and bad like the rest of us - but it was definately not a year - so maybe it wouldn't be for you either. The only way is to try and see what happens.
Pat - doesn't that just chap your hide when you hear stuff like that? Mino works by interfering with the microbe's reproduction and is one of the least likely drugs to cause ABX resistance. The reason we're having a problem with broad spectrum antibiotics becoming resistant is that Big Pharma pumped all their research into drugs that worked on a 'slash and burn' philosophy - not on targeting specific parts of / or particular microbes.
And the Lupus thing is by far the most common. Let's see - I can have a genetic test to see if I have the gene for Lupus. If I don't - no problem. If I do - take Doxy. Sheesh. They know this!
Katie - my neice has Crohn's (we think) and her mom now has RA. Her mom just started AP too. If I keep this up my whole family will be on Mino! (Just kidding). I just get angry when I think of my mom's doc. She refused to run the test - a test - and her nurse told my mother she should just plan better (about the bathrooms). Didn't these guys go into medicine to HELP people?
Mark - I should take my probiotics at midnight too. Are you taking 3 -4 X the recommended dose? I am but I also got a script for Diflucan. Too many people had problems because of not taking the probiotics so I want to be sure I'm covered. I worry that I'm too close to the Mino and I'm killing off to much of the good stuff.
Anyway, thanks for listening to my rant. My husband says they'd be telling us about it if they somehow got paid. I'm beginning to agree.
Pip
While we don't have insurance right NOW, the last time Justin saw a doc they REFUSED to give him a presric. for probiotics. WHY!?!? They told him to eat the yogurt with them in it, and that was good enough. Yet dairy gives him problems. Um, HELLOOOO IT'S CROHNS!!! >.< We had so many bad doctors for him this past year, I thought for sure I was going to outright slap one of them. He was in a flare for 6 months and no one "knew what it was" because they were making him drink the dye, and then doing x-rays and nothing was showing up. The last doc finally went "oh, well x-rays and dye have been known to mask signs of Crohn's. You need an ultra sound." Low and behold - FLARE! Duh. What morons. :(AP people, Iam confused.
You can get Lupus from the antibiotics? huh?
And what I don't understand is the extra meds, like diflucan. I took tetracycline, minocycline and doxycycline for years. As I developed some acne in my 20's. It took care of the zits just fine. I never had any problems, never took diflucan. Who knows maybe it was holding off my RA?! I've been wondering about that, seriously.
Please explain about the lupus and the "side effects" of the antibiotics. Because I never had any side effects and my dermatologist never said anything to me either. I was probably off and on the antibiotics for 10-12 years. I know I took 2 pills a day and they switched me around on the 3 varieties because I was told that your body became resistant.
Thanks!
Hi Trixie, minocycline can cause what is called drug-induced lupus (DIL). Many other types of drugs can do this too, but it is rare. And as my former rheumy admitted, after trying to scare me about this, the DIL goes away when you quit taking the minocycline. I believe (correct me if I am wrong, somebody) that doxy is even less likely to cause DIL, so some docs prefer it to to minocycline. I think it is quite possible that your RA was held off by the antibiotics. The side effects from taking antibiotics, called a herx or Herxheimer reaction, are from the toxins released into the body by the bacteria as they die off. If you had no bacteria in your body (other than the acne types) nothing else was being killed off, so no herx. The herx is actually a good thing in that it shows that AP is working. It is not always extremely painful, some describe it as a flu-like achy feeling. Can't tell you myself because it hasn't happened to me yet, and may not, since some SD people don't experience it. If this doesn't explain it enough, keep asking, and those more knowledgeable than I will be able to help.
All the best, Pat
Oh, the diflucan (or Flagyl, Nizoral, etc.). Not all AP docs use these, but from what I have read they often help quite a bit, as systemic yeast infections can be a problem. Most people take a good probiotic which replaces the beneficial intestinal flora eradicated by the antibiotics. The probiotic has really helped me, yogurt is good too, but dairy must be eaten at least 2 hrs away from doxy, so it is sometimes hard to fit it in.
Katie, isn't Crohn's also an autoimmune disease? I would think that antbiotics and a good probiotic would be helpful. I don't know all the science behind this, but some think that the autoimmune diseases all get started because of "leaky gut syndrome", which is when toxins which are supposed to remain in the colon to be eliminated, somehow leak or infiltrate the wall of the colon into the body. The body then reacts by producing antibodies to these toxins, starting the inflammatory response which can manifest itself as RA, SD. SS, PA and on and on. At least, this is how I understand it. &nb sp; Best regards, Pat
Wow, loads of info here, Thanks!!! I think with me the rheumy was saying the ap would cause my diarrhea to be worse. I often wonder about the leaky gut syndrome, I have read some on that. I have had IBS since I was 15, I'm 36 now. I was always constipated, I took miralax a prescription laxative for years. I had the bloating and cramps and pain, the whole nine yards. This past March or so, I suddenly switched to diarrhea. I'm talking explosive, gotta go RIGHT now, 15-20 times a day kind of diarrhea! Looking back, I started plaquneil last January and wonder if that is causing the diarrhea?
Recently, I have been to a gi guy who did an upper endoscopy which showed some erosion's but nothing series. I saw a crohn's guy who did the barium swallow with small bowel follow through and that came back negative. However, as a previous poster mentioned and I have read, I guess the barium can actually mask problems? The crohn's guy also ran blood work and sent it to the prometheus lab in CA and it came back with a 87% that I do NOT have crohn's. No one has given me an explanation as to the diarrhea. I take lots of lomotil and deal with it best I can.
I haven't called the rheumy for a referral yet to the neurologist. I'm feeling a bit over whelmed and I think the lycria has me feeling confused and more dizzy, I hope that passes soon. My girlfriend who is a family practice doctor asked me if they have done an mri on my head and neck to check for MS. No one has ever mention MS to me so I will Google that today.
There is definitely something wrong with me. The rheumy did mention the left over pain after a flare subsides but she was adament that the swelling I have isnt from the ra?! The swelling isn't going away, my outer fingers and toes are almost completely numb to the touch. I have never shaked like this before in my life. I'm tired and achy and weak and dizzy. I'm also tired of doctors. I have literally seen dozens of doctors over the last couple of years and no one can up with an real explanation for anything, including the 5 miscarriages.
What sort of things would a neurologist do and what sort of treatments do you think they could offer?
The Barium only masks Crohn's when used in conjunction with X-Rays. If they did an ultra sound, they got a good view. Not sure what you mean by a small bowel follow through, because it seems each doc has a diff. idea of what that entails. Justin has had such severe Crohn's that they have removed several several feet of intestine, and yet it does not always show in his blood work. It's a hit or miss. Kind of like with the RA blood work. He also suffers from severe anemia when he is in a flare, as well as the diarrhea you are describing. He has had to have blood transfusions before, he was so deathly anemic.Hi All!
Trixie - the docs 'insinuate' you can get lupus from Minocin. They say a lot of things about the side effects, but if you look them up yourself, you see Mino is the SAFEST drug you can take for RA, Lupus etc. What Pat and I were trying to say earlier is that these guys know these drugs work and are safe - or else why would they know enough about the side effect profile of the drug to scare people away from trying it. When I looked up Mino and the Plaquenil he was trying to steer me too...I was flabbergasted. Just appalled, really.
I did a ton of research on it before I tried it and it seems that in EXTREMELY rare cases people on Mino get Lupus symptoms. Even some AP docs do not want to take a chance and will prescribe Doxy to be on the safe side. Nowadays there are blood tests to see if you have the gene for Lupus. If you do not, then you will not get "minocin induced Lupus'. If you go off the Mino the Lupus symptoms go away. If you do have the gene; you can go on Doxy and not have a problem. I had the blood test and did not have the gene for Lupus so it was not a problem for me. Now get this - as crazy as this sounds - I would have still taken the Mino even if I did have the gene for Lupus. Why? Because my research has 'proved' to me that the so-called-lupus-symptoms are probably only a herxheimer response and if I wanted to kill off all the infection I had to work my way through any weird herx I had. I think I am going to get the EXTREMELY RARE lung herx that regular docs call a drug-induced-pneumonitis. Why, because I've had atypical pneumonia many, many times and I am a smoker (yes, I know I'm dumb - one health crisis at a time). Anyway, regular docs freak and want to take you off the Mino - but I think if I have an infection in my joints, and the buggers like to travel, why wouldn't they be in my lungs? My weakest body part are my lungs. So...eventually I'm going to herx like heck there.
Also, you were 'on and off' the ABX for years. That says you did not have a 'build up' of bad flora in your gut at the time. From the posts I've read, it seems to me that for most people that AP stops working on, they were not on the probiotics and they get horrific yeast infections. The pain from that is similar to RA flares too. I think Pat mentioned the "leaky gut'. I know for a fact that was instrumental in my illness. I know my gut started leaking toxins into my blood stream. Heck, I've even seen pictures of my stomach erosions from NSAID's etc. What I have to do to heal is deal with the stuff that already escaped (parasites, toxins, etc.) that started my PRA, then make sure to close the barn door so nothing else comes thru too. When I can get off the NSAIDS I intend to do the hyperpermeable gut healing diet and see if I can go for 'the cure'. But until I can get rid of the NSAIDS everything else is a holding pattern. Does this make sense?
Also, I find it interesting that your skin doc had you rotate the ABX. In AP it is now recommended that you rotate the ABX so you do not become resistant and it keeps working for you. There is a point at 7 years where if you are going to be resistant, you will. I intend to rotate just to be on the safe side.
Yeast is one of those things that get blamed for everything and it is not just one thing that causes our immune system to go haywire. It is a multiple, cascade thing so we must address every aspect of it to heal properly. The problem is if we have tendency towards yeast, we do not know what is going on internally until all hell breaks loose. At that point yogurt is not enough. There are people I trust who say they had such bad yeast that they were on 4 difucan a WEEK. Goodness! If you want, google "yeast infections" and read about the various bad flora that can rupture our intestines. Then go to Google Images and put in the 'latin name' of the yeast. Look at some of those pictures of the yeast branching out of the intestines. How can we heal if that is what is going on in our bodies? And since intestines do not have nerves - we don't know.
Michelle,
Just guessing here - but if you take Plaquenil and are suppressing your immune system, then if you had a myco infection in your intestines, wouldn't that mean the beasties could run amok and hence the diarrhea?
I still think you need to drop that rheumy. We all get swelling in some form and I just don't understand that doc. Please believe me when I say I am not trying to be mean, I just think that person either doesn't know her job or is not looking out for you. And I'm glad to see you are looking into the neuro issues. That's the thing that had me most arguing with my docs - I kept saying neuro issues are not part of RA or PRA and wanted to know what was going on. I had the tremmors too. And the shaking. And I was numb (and pins and needles) on both hands from the middle finger out and on my left foot. It was freaky. All of this resolved quickly on AP tho. So, when I went back for my neuro results I really didn't care to find out if I had MS because I now knew I didn't. If you are researching MS - don't let yourself get freaked out - there is some scary stuff out there that scared me half to death. Try www.cpnhelp.org for some postive info. OK?
Pip
P.S. I have had 3 miscarriages - and my research has shown me that I probably should not have trusted my fertility specialists. :-( There is now a lot of research that is showing women with unexplained miscarriages tend to get pregnant and maintain that pregnancy if treated with a round of ABX prior to trying to concieve. All I know is that the only pregnancy I had that resulted in my beautiful daughter was immediately after a miscarriage - where I had a recent Rhogam shot, had had a D & C to clean out the uterus, and was on ABX. Hmmmm.
Pip, thanks for all the good information. Yes, my dermatologist did switch me around on all 3 antibiotics. Tetracycline first for probably over a year then mino and then doxy. After about 5 years it was under control and went off then it restarted again and went back on it, then off and then on again, I too had female issues and that's was caused the breakouts - antibiotics where the only thing that worked. I'm finding this stuff more and more fascinating...
One thing though, Pip. I don't think plaquenil suppresses the immune system. Doctors and scientists don't know why plaquenil works for RA. At least that is what I have read.
Thank you for your help Pip!
Oops. My bad. I knew that. Sheesh - see my embarrassment!
Plaquenil is an anti-malarial and works by killing in infection.
http://www.healingwell.com/community/default.aspx?f=29&m =300164
Even more fascinating, true? That's the drug that freaked me out and when I found out it was a anti-malarial I thought - see - they know this is an infection. But most docs just say we don't know how it helps. Hmmmmm.
Pip
[QUOTE=Trixie66]Pip, thanks for all the good information. Yes, my dermatologist did switch me around on all 3 antibiotics. Tetracycline first for probably over a year then mino and then doxy. After about 5 years it was under control and went off then it restarted again and went back on it, then off and then on again, I too had female issues and that's was caused the breakouts - antibiotics where the only thing that worked. I'm finding this stuff more and more fascinating...
One thing though, Pip. I don't think plaquenil suppresses the immune system. Doctors and scientists don't know why plaquenil works for RA. At least that is what I have read.
Thank you for your help Pip!
[/QUOTE]
Trixie,
I just started Plaquenil a week ago. My prescription insert states the following:
| "Drug Information For: PLAQUENIL 200MG TABLETS |
| Ingredient Name: HYDROXYCHLOROQUINE (hye-drox-ee-KLOR-oh-kwin) Drug Manufacturer: SANOFI WINTHROP Common Uses: This medicine is an immunosuppressant and antirheumatic agent used to treat systemic lupus erythematosus (SLE) or rheumatoid arthritis. It may also be used to treat other conditions as determined by your doctor." |
I asked my pharmacist about it and he said that while the drug is an "immunosuppresent" it doesn't actually completely shut the immune system down but rather slightly tames the immune system so it doesn't attack the joint tissue as aggresively. It has only been (1) week and I haven't noticed any difference yet. It's supposed to take 8 - 12 weeks to make a difference. I'm keeping my fingers crossed!
Ryan
Wow, I am loving all this info!!! First I have also heard that for some "unexplained" reason woman with repeated miscarriages of no know origin seem to have a better rate of success after antibiotics. I saw an infections disease specialist who ran a boat load of tests. I, at one point did test positive for hep c. They did a viral load and genotype several times over a year so we know it wasn't a false positive. Somehow, my body killed the infection on its own. I have had three tests since than that show no diease detected! After that, is around the time all my medical problems began. I theorize that my immune system jacked up so high to kill the hep c that it brought out the ra or whatever it is I have.
I was found to have been exposed to the chlamydia pneumonia virus in the past. That was just about 2 years ago and I did do a month of antibiotics to supposedly kill it. I forget just what antibiotic it was but it was the same all month. I briefly looked at that site pip posted and will go back and read more about that!!
I have often wondered if the placquinil was causing my diarrhea. I actually made the executive decision last night to stop the placquenil. I will go down to one a day for a week, instead of my normal dose of two a day than just stop it. I have also decided to stop my prevacid and see what happens. I am also going to try and reduce my dose of zanaflex, a muscle relaxer I take at night as well. I feel I am on way too many drugs and need to streamline my drugs a bit.
I really don't think I have MS but I do believe the mri's would be a good idea just because I do have some much crap going on. Read my last response in the ms thread I started.....I am feeling better on the lycria and extra vitamins.
Ok, I want to go read more of that chlamydia pneumonia site....
Michelle,
I think there is a cascade thing going on with these diseases - sort of like the straw that broke the camels back. I also think I was exposed to a virus (parvo) that my body couldn't handle getting rid of. I think I posted about the RA and AZT research I had found in Belgium and that when I was so frightended I was trying to get a doc to prescribe antivirals. My friend the OB/GYN said antivirals would not work for a myco infection - so - in my quest to heal I intend to do everything. ABX, antivirals, heal the gut, quit smoking (damn) - but my health is worth more than a holding pattern, if that makes sense.
Glad the site that Pat and I mentioned caught your interest. Go girl, you can beat this! All you got to do is determine to try and handle the herxes. The rest is history!
Pip
[QUOTE=micheleb]Wow, I am loving all this info!!! First I have also heard that for some "unexplained" reason woman with repeated miscarriages of no know origin seem to have a better rate of success after antibiotics. I saw an infections disease specialist who ran a boat load of tests. I, at one point did test positive for hep c. They did a viral load and genotype several times over a year so we know it wasn't a false positive. Somehow, my body killed the infection on its own. I have had three tests since than that show no diease detected! After that, is around the time all my medical problems began. I theorize that my immune system jacked up so high to kill the hep c that it brought out the ra or whatever it is I have.
I was found to have been exposed to the chlamydia pneumonia virus in the past. That was just about 2 years ago and I did do a month of antibiotics to supposedly kill it. I forget just what antibiotic it was but it was the same all month. I briefly looked at that site pip posted and will go back and read more about that!!
I have often wondered if the placquinil was causing my diarrhea. I actually made the executive decision last night to stop the placquenil. I will go down to one a day for a week, instead of my normal dose of two a day than just stop it. I have also decided to stop my prevacid and see what happens. I am also going to try and reduce my dose of zanaflex, a muscle relaxer I take at night as well. I feel I am on way too many drugs and need to streamline my drugs a bit.
I really don't think I have MS but I do believe the mri's would be a good idea just because I do have some much crap going on. Read my last response in the ms thread I started.....I am feeling better on the lycria and extra vitamins.
Ok, I want to go read more of that chlamydia pneumonia site....
[/QUOTE]
Diarreah can be a side affect of Plaquenil. This list of possible side effects was also taken from my script insert:
"Possible Side Effects: SIDE EFFECTS, that may go away during treatment, include headache, dizziness, diarrhea, nausea, loss of appetite, or abdominal cramping. If they continue or are bothersome, check with your doctor. CHECK WITH YOUR DOCTOR AS SOON AS POSSIBLE if you experience skin rash or itching; ringing in the ears or loss of hearing; fever or sore throat; unusual bleeding or bruising; blue-black discoloration of the skin or inside of mouth; hair loss; mood changes; vision changes or disturbances; or unusual weakness. If you notice other effects not listed above, contact your doctor, nurse, or pharmacist."
Hope this helps.
Ryan
Ryan,
If you read about plaquenil use for SLE and RA, it usually clearly states that no one knows why it works for some people with auto-immune diseases.
Also, on Sanofi's (manufacturer) website; I could not find anything saying it's a immunosuppressent. It does say it suppress some action within the body for Malaria. But it states again that it is not known why plaquenil works on auto-immune diseases SLE and RA.
Personally, I do not believe that Plaquenil is an immunosuppressant. It doens't say it in my paperwork from Walgreens either. However, I've read on some sites that say it is. I think they are putting the drug into a dmard classification and other DMARDS are immunosuppressants.
You are entitled to your opinion and I to mine. Just wanted to explain mine.