What is remission?

[casey]

Michele,

I tell ya,NEVER does one worry about something so much until it involves their kids. It was worry with my diagnosis but  never like this. The power of love !

I know what you mean about kids understanding and taking part in their decisions.

My son knows what this disease can do to him just by seeing the condition and pain his gramma is in and by visiting her in the hospital many times. (she is not on AP)

He understands he is on AP and has to change his diet among many things to hopefully never get that severe. He has had  struggles with going gluten/casien free and those hard times hit more so at school on pizza , spag, or hot dog days. I have learned how to make gluten free pizza but he cant always take it because of this 4 day rotational thing. We have been doing this same thing with the same foods for 9 months and it is unbelievably hard.  If we didnt have to rotate , it would be easier to just stay gluten/dairy free.

Now on top of that, summer is coming and sunshine and lupus dont mix. He knows this because he sees his gramma in the sun for 5 min and she is red as a beet in exposed spots. So now, he realizes this could happen to him and thinks we are going to take his soccer and baseball away. And our pool which is in the sun. And then he is concerned about looking like this if he is in the sun.I dont know what to do because i feel i have taken all his life away some way or another.. And then he asked me about track and field and sports at school. He has always accelerated in sports and but some of this requires full days competing in the sun. What do i do???

we have discussed this as a family and if there is one damn disease that robs just about everything involving life , its lupus! (and thats not to say other diseases dont rob).

My son has heard me talk to people on the phone about AP and MP. He is aware that on AP , he will have to watch the sun for the rest of his life including his diet. He has heard MP MAY get to the root of it all. He has told us many times  that he  feels ” he and we , are not living anymore and he wants to be able to do the things he used to do and  if it is our time and GOD wants us , well then he wants us but at least we lived” . Boy, thats hard!!!! Now i am teary..again.

If i gave him a choice of AP and MP, he would pick MP if he heard the word “cure” regardless of the risks. I like that idea too but if something happened with an “intolerable herx” and he ended up ..being worse off, that would kill me . But i feel that way anyway,knowing what he has to do for the rest of his life even on AP. And what if MP or AP doesnt work?

Oh this is a round circle and something that is hard for me to deal with and accept. What should i do here? What is the best possible route i can take to give him the best life possible? I dont know the answers but i know this” this feels like a life sentence wondering about the death penalty . i truly hope no other parent here  ever has to walk the road that a few of us are on.Its the worst it can get.

Casey

I posted an small addition to this on the “remission” post.

[casey]

Opps!, i did 2 posts here on this subject . thought i lost the first one . sorry to have repeated myself.

[suera]

Oh Casey my heart just breaks for you and your son. Whenever I think of younger people with any of these diseases it just makes me heartsick.

I certainly don't know what I would do but if I am not mistaken I remember reading that there are those who eat whatever they want and still do well on the ap. Do you know if he has certain food sensitivities? I went gluten free for awhile and noticed no difference. If you can tell a difference it is probably easier to stick to the restrictions. Also on the rheumatic.org I think I read about some really superior sunscreen for people with sensitivity to the sun. I know you probably know all this, it just breaks my heart to think of a teenager not able to eat pizza or play sports when he wants to. With your family history you must be worried sick constantly about what can happen tomorrow but as hard as it might be I think you have to try to live for today always keeping in the back of your mind if symptoms creep up. You are on the right path with ap and as you look into mp maybe you will decide to try that. I don't know what to do either but since I must make a decision soon ap/mp I do find myself looking at all the things I couldn't do last year that I can do now, so I am feeling more and more like I shouldn't abandon the ap yet. Also I am very intimidated by the MP board and for my simple mindedness I would prefer to, well,  keep it simple.

One more thing about supplements, and I have tried many, but we took a trip to San Francisco last summer for 10 days, I brought only my meds and probiotics so I didn't take any supplements and I felt better than I had in awhile, maybe it was the vacation itself but it has always made me wonder if I am not just throwing my money down the drain.

I cannot begin to imagine how hard these decisions are for you, I pray for you to find strength and guidance.

Sue

[casey]

Sue,

Thanks  for the thoughts and prayers. They are much appreciated!

Casey

 

[Michele]

Casey,

My heart breaks for you and your son, too. I worry about mine so much.
There are so many crises right now in my family I can't even bear them.

May God help us all,

Michele

[richie]

Hi

A few points –how could possibly anyone hear of anyone dying from AP or MP unless they are in direct communication with many sick folks  –does the person say ” I died ” on a board –The plain fact is people who come to AP or MP too late can and do die –this is a result of the disease process –As to your 13 year old –how will you get anyone to prescribe Benicar to someone that young ????

Richie

[casey]

Ritchie,

You would be suprised how many kids are on benicar on the MP site so obviously there are docs that WILL and DO precribe benicar to children. I am not saying my son in particular would be one prescribed it, but it is happening.

As for people coming and saying they died due to MP or AP on a board”, that was uncalled for . It may be the disease but it may be the “intolerable  herx” not under control especially on MP That gets them. With all due respect, i think the way you worded that was uncalled for as some of us are in a real struggle on how to deal with our disease.

Casey

 

 

 

 

 

 

 

 

 

 

casey

[Ellen RA-AP]

When I first felt symptoms my PCP sent me to a rheumatologist, and the one I picked was at a well known Boston hospital.  While I was in the waiting room a woman was waiting with me, and she said, “7 years ago I was diagnosed with RA and I went to this doctor at (the other great Boston Hospital I go to now) and he put me on antibiotics because they believe that RA is caused by an infection.  I went 7 years without a symptom, but now some of my symptoms are returning so I decided to find someone young with fresh ideas.”  I call that karma, my angel trying to bop me on the head, but instead I thought,” hmm, that is interesting.”..of course at the time I still didn't know I had RA.  So, I see this “young” doctor with her “fresh” ideas, and she puts me on mtx and prednisone, followed by Arava, Plaquenil, and then finally ENBREL.  Up until the time I got the enbrel I felt like I was free-falling from a building and I didn't know where I was going to land.  All of those meds in a years time. 

What I will tell you from my experience is that Enbrel did help some of my daily symptoms, but I will not say that I felt it stopped the progression of my disease.  Perhaps it made the progression more bearable?  I started it in May and by Sept. that little voice in my head that tells me “something here just isn't right!:sick:” led me to this website. .. The Arthritis Breakthrough… Dr. T…  Sept I started AP and by Jan I took myself off of Enbrel.  THe thought of going into my bathroom to inject myself with “it” was more than I could take.  But I am not here to tell you to not try it, I am just telling you that in my experience AP works at dealing with the root of the problem, not the symptoms.

As far as remission goes, I wonder, from an infectous stand point, if the issue isn't so much not getting rid of the mycoplasma as it is getting reinfected by it and being that much more susceptible to a relapse.  The lady I met went off the minocin for her symptoms to return.  Common sense will tell you that if what you are doing before leads to remission you were on to something, but youth has its charm I guess…

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