What is remission?

[suera]

At a crossroads here, doc wants me to start the mp or Enbrel.

I am better than I was last year. Then I had excruciating pain in feet/knees and hands. Now my feet are better, my knees hurt but dull not sharp. I can walk, can't stand long, nor any other activities i.e. golf, skiing,tennis. My hands are still hit or miss, some days good, other days like two hooks. What is remission? Should I be content with this improvement, and I am grateful, or can it get even better?

Thanks,

Sue ra 2 years ap 1 year

[Michele]

Sue,

That's a question that's been bugging me since my whole flare started last September. If the first rheumy had offered Enbrel instead of MTX, I would never have found RBF. MTX was way too scary for me. My cousin was doing well on Enbrel. But rheumy said MTX had to be failed before going to Enbrel. I bolted.

It's impressive your doctor gave you MP and Enbrel as options! What kind of doctor gave you options outside of the standard rheumatological box?! Is this an AP doc or rheumatologist or regular MD?

Unfortunately for all of us, this decision rests upon our own shoulders. But I can offer you a couple bottom line questions I ask myself:

Do I firmly believe my RA has an infectious root cause?
The answer to that guides my decision between Enbrel and AP or MP.

What quality of life must I have immediately vs. longterm?
If I was 70 years old, I'd choose a palliative like Enbrel. But at 44, I'm looking for curative. With a herxheimer reaction to AP, I'm certain there are bugs still being killed.

I hope others chime in here with ideas on how they've chosen their path!

Ask lots of questions Sue!

Michele

[Maz]

Hi Michelle,

Your rationale to go on and stick with antibiotic therapy, be it AP or MP, pretty much mirrors my own. I'm 47 and figure there are quite a few years left in the ol' workhorse yet. So, I'm going for the cure, knowing that it means I'm going to have to somehow figure out how to navigate all the the ups and downs along the way. If I were in my twilight years, I too would probably go for palliative, immunosuppressive relief….and a lot of it.

Peace, Maz

 

 

[Maz]

Sue – in answer to your question…

….”remission” to me means to be completely asymptomatic. However, for me to state with confidence that I was have reached “credible” remission, I would have to be symptom-free for a reasonable length of time – say a year or probably even longer – with no flares/herxes. To reach the cure stage would really be retrospective in the sense that I'd have to be symptom-free for the rest of my life. I guess I won't know I am fully cured in that case until 've reached the end and ready to meet my Maker. 😯

You mentioned the options your doc is giving you. Does that mean you are wavering between Enbrel and MP and just can't make up your mind?

Peace, Maz

 

[John McDonald]

This question bugged me too. But remission means considerable improvement, abatement, even temporary cure, doesn't it? It also must mean that the disease may linger or may return. I would say that if the cause is bacterial infection, then cure would mean the complete destruction of every single bacterium. If the cause is mysterious, idiopathic, self destruction, then, well I don't know.

At 14 months of AP I still had some ache in my finger joints, especially after white knuckle LA freeway driving. I was still taking Celebrex at that time more from fear than need, but still taking it. But I started describing my improvment as “credible remission”. I pretty much had my life back. Now add to that 2.5 years of MP and I have herxed each and every single week of that 2.5 years including this week. But I rarely have RA herxing now. I still have some 2 year old Celebrex left but I use it for the odd headache now. My joints virtually never hurt and when they do I usually only know by making a fist or by rubbing my feet hard. I am not cured. At least once a month I still get the tiniest RA herxing, but I have to make a fist or rub to know it. So I decided to call this 98% cure of RA, because that is about how much or little I worry about it now. But as I said I am still herxing, just in other organs and tissues. So I am not yet rid of these bacteria and I reckon if I stopped I would eventually get it all back, including the RA. If I did stop I might be in remission for a month, or a year or ten years or longer. No one knows.

I should add that I did stop antibiotics for a few weeks in 2006 for an overseas trip, and I did not stop but cut way back on the abx for 3 more overseas trips later that year. Each time I enjoyed some “remission” from herxing as well as disease.

I wouldn't choose the Enbrel. I don't have the medical background or the laboratory or the omniscience to know or prove if my disease is auto-immune or infection. But I would rather bet on infection because that outcome can have a cure. And so far my bet is paying off brilliantly. There is no cure for auto-immune.  If that theory is right then you can only slide down the rope getting worse each year. The auto-immune meds are frightening but justified by the docs and patients against the hopelessness and inevitable decay. I don't like that scenerio.

Sue – it isn't an easy choice. To begin with, a year isn't quite long enough for Dr. Brown's AP. For some it is, but not for many. You could give AP some more time. If you are lucky enough to have a doc offer MP then you should consider it. There is nothing that says you must stay on it if you don't like it. I made an aborted start at MP in May of 2005 before trying it again in September. I wasn't sure I ever would start it again except I had a bit of a relapse in my “credible remission” to push me in.

Good luck.   -john

[suera]

Thanks for all your replies, I appreciate each one.

I know we must make our own choices, I was just unclear on what I am striving for, of course I want to be the way I was but maybe that is unrealistic and being like I am today which is limited but so much better than I was before ap is what I should be content with.  Do people on ap or mp get well enough to say ski, play tennis etc? Do people on Enbrel get well enough to do these things? I don't know anybody that I see with ra, don't know what is realistic to expect. My girlfriend has a co-worker on Enbrel and according to her he golfs, runs every day and is just like he was before ra…can this be expected? In my Arthritis Today magazine there was a woman on the cover that was on Survivor….what I feel like just getting through the day completing little mundane tasks is “survivor” for me! It probably isn't even fair to think this way as we are all different but I need to compare, does this make sense?

My rheumy wants me on Enbrel, along with his prednisone and MTX which I am on and afraid to get off of…are they doing anything. Well I know the prednisone is but we all know of the love/hate relationship with that.  My ap doc is encouraging me to also give the Enbrel a go. The Naturopathic Doc. is the one who wants to start the mp.

Anyway thank you all so much.

Sue

[richie]

Hi

The goal keeps changing as you feel better and better —you will find as you feel better the bar keeps getting raised –when I was sick –first goal was to “just feel a bit better”eliminating fatigue –then it became regaining use of hands –then regain swallowing –then Raynauds and on and on —-when you were feeling poorly I would wager your immediate goal was to be in the position your are in now –my only opinion is that an antibiotic protocol got you to this point- why abandon an antibiotic approach which seems to benefit you ??? I am not a doctor nor a strong champion of the MP but seeing the choice between MP and Enbrel and since you will be under a doctors direct supervision MP seems to be the better alternative —

Remission in my opinion is a complete absence of any symptoms and no further progression —personally I believe remission is a temporary condition that has to be maintained through the use of antibiotic –I dont feel total cures are at hand in most of these illnesses

Richie

[casey]

Gosh , these decisions are hard and for me. i have to make decisions if i want to “palliate” my a young child at 13 or try for a “cure” with MP so my son can lead a normal life.  That should be easy. It is, IF MP is a cure. Myself, i am 44 and would take “palliative” if i knew i would stay in remission forever. and just because AP is simpler. Unfotunately that is left to the unknown.

I wonder what the chances are of a child having many remissions for life when having a few flares at a young age. My disease showed as a disease last yr for me at 44. He has to get through 32 yrs to get to me.

Its all just depressing!!!!

Casey

[Joe M]

Sue,

To answer your question, yes, people on a biologic (Humira in our case) do get well enough to golf, jog, play softball, bike, etc.  Michelle has returned to doing all the things she did prior to RA.  I agree with the other poster who said remission is being asymptomatic – to the point you forget you have RA. 

Joe

[Michele]

Casey,

As the parent of two boys, I completely sympathize, because these life decisions are horrible. We've had to make some tough calls already, too. (ie. twin to twin transfusion syndrome, a cyst removed from the front of the brain, stitches or staples, spinal tap, now it's tonsilectomy or not.) Once the boys were verbal, it was really helpful to have them also express their opinion. And so far, they have always chosen the decision we would choose. It's also given them ownership of a difficult process that they have to personally go through. What does your son want to do?

We were really impressed yesterday with our son (he's 8) who has had numerous strep throats in his response to the ENT saying it was our call if we wanted his tonsils removed or not. Since we take him in to start antibiotics at the first sign of strep, the ENT was comfortable leaving them in. When we asked our son, he said, “I need time to think about it and I want to talk to another child who has recently had the procedure done.” Boy does he learn by watching us go through our own health difficulties. Ultimately, it's the parent's decision. But having the child involved in that process helps because it is their body after all.

Hang in there!!! John's “omniscient” would be so helpful for us all!

Michele

[roserdRA]

To me remission means–Illness almost gone! Cure follows remission. Remission means to me all pain gone, even the slightest, cure means that there are also no more “auto”-antibodies detectable (not even a negative titer-but zero!). I personally do not believe in the “Auto” theory.  IMO there is a good reason for our bodies to produce these antibodies and they very well target correctly. There is evidence, that when a fluorescence is attached to monoclonal antibodies, they can be detected to only go to infected sites and never healthy joints.

In my case– I still feel “quirks” here and there but simultaneously with my improvement my bloodtests keep improving as well.

My good days now, are as I never was ill — my bad days are what my good days used to be!

If I compare good days to previous good days— there is tremendous improvement.If I compare my bad days with previous bad days—there is tremendous improvement!But I have to mention that I hardly have bad days anymore and since months it is completely gone from a lot of joints.

I have to request my Anti-CCP and RF tests regularly from my Doctor, when I see him every few months. His opinion is, that they are irrelevant. Not for me so. Especially because they showed a steady drop in these Antibodies. This is a great boost to my confidence to be able to beat this.

I am on 100mg generic Mino twice a day. It will be 1 year in mid April.

[casey]

Michele,

I know what you mean about children helping make decisions. This is especially hard for my son becasue he has watched his grandmother get worse with her lupus for many yrs. To the point that gramma(not on AP) now cries from constant pain and has very little , if any enjoyment in life because of her pain.He has visited her in the hospital many times in the past before he developed this disease. So now he somewhat sees himself becoming her but because he is a child “feeling” no pain yet, he sits on another side thinking it wont happen cause grammas old now and she has had it for many yrs so i wont get it till i am old . He knows that i developed symptoms at 44 , so in his mind you just have to get old before you can get sick.

On the other hand, his AP doc told him how important it was for him to avoid gluten, take his probiotics, have these blood tests done , take his abx and he may never get as bad as his mother or grandmother. Now i have to say, for his age he has been very good with all this but he has said to me on occasion “mom, we're not living anymore, I cant eat like the other kids, i cant have sun, i have to take supplements at school etc etc and i think that i just want to live like normal people and if i die , i die, whats meant to be is meant to be”. Believe me , that is a killer  for any parent to hear. I cant let him do go that route because i know what that will do to him but on the other hand, i have to let him live with this disease somehow , not die, living with it. I try to have the happy medium here but its all, just plain hard.

If it was entirely up to him, he would chose, take the abx, live and play in the sun , eat all foods but gluten and dairy, eat the other foods he shows allergy to on blood tests and just go on till he gets sick enough to go the next step. Because he feels well, he doesnt see much of a prob yet . i see he feels well on the outside but my family has a history of disease targeting the kidneys which is something you dont feel happening.

He knows what AP is and has a small idea of MP ( same as me) and he has heard me talk to others by phone about both. He told me one day he would just rather go to MP and get rid of it if it is a cure. He doesnt know the herxing degree that MP may have on the kidneys. i have talked to a few who are better from MP but one actually ended up with renal failure due to the herx to get better. And that experience occured 1 yr after starting MP.This person also didnt have rheumatic disease but had upteen other ailments that didnt “appear” to involve these organs. So given the fact that lupus often hits the kidneys, what type of risk am i as a parent here taking? Maybe none but maybe a life and death one too. This is all just plain hard and depressing. My husband said flat out no to MP last night . Whether some do well and are cured, he is afraid to take that risk. He is happier with AP being around for 50 yrs and no one died of it( abx not the disease). My husband is one though who lives in denial and doesnt want to accept we have this anyway , AP or MP or whatever P is out there.

Do i want to take that risk on MP? I would be a little more than willing if i  had a MP doctor right in our town if something arouse. Am i confortable with AP, yes but is it working?

That brings me to Roses posts about test results. The antibodies are showing negative now, but Rose you wrote something about the “monoclonal antibodies going to the affected site. So this may mean, that even though he is neg in ANA and dsDNA, the disease is progressing in other sites?

This is the whole part that has me and it all started when i scrolled the MP site and read about the vit D thing. I was so happy that his antibodies went to negative. none! but when i read MP and it said when the ANA is neg, the disease is progressing. Given all his D info, if TM is right , then that appears true.

So i went from a very happy encouraged parent to a very uncertain parent based on Mps info and this D thing.

I also know that  you dont have to have any antibodies to suggest disease. so what do i think i should do. Go for more on MP and maybe risk more and hope its a cure or stay on AP and hpoe it works for remission.

either way, the kidneys are at risk in this family! Question is ” do i believe this D thing??? Its hard being a parent!!

Casey

.

I truly feel like i live with a” life sentence” so to speak of when the “death penalty” arrives!

[Tiff]

Casey, do you know someone who you think died due to MP?  Are you sure?  You have to keep in mind, many of the people on that protocol are profoundly sick.  things are going to happen I suppose.  Like you, I would sure like a local doctor.

Boy, it looks like a few of us here are really at a crossroad with AP, MP or other meds.  How about we all vote on is since this is an election year? :dude:

 

[casey]

Tiff,

i havent heard of anyone dying on MP or AP for that matter. But in the end , if anyone did, we probably never would know whether it was the disease or the protocol that caused it.

MP is apparently a much more “aggressive protocol”, so to speak , to get your health back by ridding any  pathogens permanently. I have studied the site somewhat but i think it will take me along time to go over the whole thing and even longer to understand it

there have been some severe “intolerable herxs” that have caused hospitalization. I guess thats why you learn how to use benicar (when,how much etc) and/ or lower your abx to bring about “tolerable” herxs ” .

Like you, i am nervous of it because it looks extremely intimidating , just by the site itself. And because of that, i would feel more comforatable if i had a MP doc right here . I know i have this infection in my kidneys and i know my mother does and i know lupus affects the kidneys in many so i guess i would have to justify how far i would go to completely elimate these bugs vrs the risks i may put on those organs in trying to cure this.

Each is individual and i see people herx in many ways from different parts of the body they didnt know were infected in the first place. This just goes to show me how interacellualr these pathogens are . Now if i had joint damage and was slipping back on AP and i had a knowledgable doc , i probably would go for it with some hesitation. But if i had organ involvement which i believe i do, well , i need to think that one out.

On that note , i am pulled 2 ways with my son. He is young, maybe MP could get this out of him BEFORE the bacteria have many more yrs to proliferate . 13 yrs vs me at 43  yrs of acculmulating crap.

Also, i have an interest in MP simply because of the vit D theory. And because of how lupus patients and the sun dont mix  and the sun is vit D so there has to be something to this. When i had my son first tested for disease, it was due to him having lupus symptoms suggestive to me from studying my own disease and those symptoms occured right after laying in the sun for a few hrs on a summer day. High , unexplained fever with headache and dizziness and low wbc in particular lymphocytes. Thats the first time i had his ANA , dsDNA tested and if i had not read about my own disease, his would have been diagnosed sunstroke and left at that.He also had 2 other dizzy spells in summer while being in the sun and this is why i think there is a strong link to this D thing.

This is only my case and why i have an interest. I would like to keep him on AP and have my doc keep tweaking his abx so some of this can be killed off before i jump to MP and sit worried about “organ”herxs(which i would anyway) .But maybe i can give him a chance to “cure” this now at his age but to what risk? This is where i need aknowledgeable MP doc …right next door.

Tiff, keep researching MP and you said you have a doc experienced in it. Is the doc close to you? I also know some docs have refused MP on some patients, so that tells me a little something to.

crossroads! crossroads! I'm still sitting at the yield sign!

[SusanSD]

Sue, Michele, and everyone,
      I guess I'm reaching for remission, but that's just a word. As Casey and others have stated, it's the life we want to reclaim, the potential for a future full of possibilities not pain and sickness. I believe in AP because it has given me more hours in the day when I am ME and not 'me with a disease'.
      When I was sick, I couldn't open bottles or put on earrings without dropping them, or put my daughter's hair up in pigtails. I can do all those things now, but what researcher is going to measure those activities?
       My doctors have not mentioned Remission, but I know I am better because of this critical incident:
        Walking out of daycare, 6 months ago, my 20 month old ran out into the patio, which is fenced from the main road. I let her run thinking it was safe. I saw her run towards the fence's gate to the main road and thought to myself, “it's okay, it's closed”. Nevertheless, I started to walk toward her, and she looked back, laughed and ran away as if to say “you can't catch me”. I couldn't believe it as I saw her run through the gate – the gate door had not latched and I couldn't see that. I immediately bolted after her, while she kept running, looking back at me, and laughing. I raced toward her as fast as I could, while she ran over the sidewalk and onto the grass, oblivious to the road before her. I caught her on the last inches of grass before she reached the road; she was still laughing. My heart was pounding, but my legs were fine – no pain or aches. All the fluid that were in my knees in my first year with SD had cleared up. So my now 2 year-old daughter says “tank you” to AP and Dr. Brown and RBF.

[Author]

Posts