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Post by steve201 on May 19, 2009 3:09:37 GMT -5
this is the place to talk about medical issues ...so let's keep this one here for people to use and find medical answers to thier questions.....
Can we talk poop here??? ;D
Steve
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Post by jeffn on May 19, 2009 6:31:33 GMT -5
So with all the recent happenings how has everyone been doing?
I recently had my annual Rheumy check up in Boston and my SED rate is down to 2 it was 7 in Oct and my recorded high was 43 in March of '07. My hemoglobin is now normal for the first time since GAVE two years ago. It had been just below normal since June of '07 but now has moved into the normal range. So not bad. Doc told me to stay the course and keep taking 100mg of mino twice a day. Have to come back and see him in a year.
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Post by klw1960 on May 19, 2009 7:24:58 GMT -5
Hi Guys,
I just had my visit for IVIG at Cleveland last week and am holding my own. Skin score is a 23 which is higher than in December but not as high as it once was. In June I do my annual PFT and heart echo. Bloodwork is okay. I started on cellcept in March and had to go off a few weeks ago as I developed shingles in my face and head. Started back on it last week and am doing okay. The good news is that there is now a generic version of cellcept and my cost went from $100 with a prescription card to $6.00. Finally got a break there.
An Steve, I am pooping just fine.
K
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Post by steve201 on May 19, 2009 7:53:51 GMT -5
I recently had my qtrly check up and everything in the blood work was great....my a1c was 6.1...down from 8.1 a few months ago..but the insulin was the one that did most of the work as well as my diet was changed....haven't had a decent coke in ages!!...
so..I'm doing quite well right now..
Steve
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sammie
Junior Member
Posts: 64
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Post by sammie on May 19, 2009 9:38:35 GMT -5
Hi Everyone,
Steve and Jeff I am glad you are doing well. K I am glad about the cellcept cost and that you are doing okay despite the skin score going up.
I have been having some GI issues since Mother's day. I had been feeling nauseous for a few days before and that morning I vomited as soon as I finished my breakfast. It was like my breakfast didn't want to go down. I quickly to an anti-nausea pill. I had an appt with my PCP the next day and I told her about it and how I was still feeling nauseas, She told me to keep taking the pills. I usually get pneumonia when I vomit but thankfully that didn't happen as I took the pill right away.
Well the nausea continued all week and I also get terrible pains and esophageal spasms, I have even had to take some of my demmerol, which I really don't like to take.
Yesterday I called my GI doc and went in. He said he things I pulled some muscles when I vomited, but after I left I realized he didn't mention what was causing the nausea. He said we have to treat this conservatively and that I am very complicated. I have had so many doctors tell me that! I am sick of hearing it.
So he wants me to continue on the pills and also the demmerol when needed.
Anyhow I am frustrated and not feeling well. I had to vent!!
Thanks for listening,
Sammie
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Post by joannern on May 19, 2009 9:52:21 GMT -5
I am doing ok. After many tests they decided my restrictive pericarditis was not going to be helped by open heart surgery. I do need to have a stent in the right coronary but have to wait until the bruising from the heart caths resolves. I am feeling ok.
Right finger ulcer has helaed.
Iticing and dry mouth are making me nuts, but life goes on.
See nephrologist next month to see how kidneys are faring.
Joanne
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Peggy
New Member
Posts: 33
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Post by Peggy on May 19, 2009 12:26:25 GMT -5
I just had my checkup and my PFT was the same as in February. He's not happy about all of the muscle pain so he put me on Methotrexate. I am already taking the Cellcept and he thinks the Cellcept is the reason my lungs haven't gotten worse and my skin is a little better. He also had me see a cardiologist who did an echo and EKG which were both good. He put me on Nitro to keep on hand as I'm having some chest pains. I have a stress test on Thursday. I am also dealing with a lung nodule that I just had another CT done today. Hopefully I will have the results in the next 2 days or so. If it's changed in appearance or grown then the oncologist wants a biopsy done and also a PET scan. Please pray that it will be the same as it was in February. All in all its just the same with terrible fatigue and muscle pain. I do know that compared to alot of people I have it pretty good and that I could be alot worse off.
Warm hugs,
Peggy
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Post by joannern on May 19, 2009 13:19:19 GMT -5
Peggy,
Prayers are coming your way. They seem to be finding more and more of these solitary pulmonary nodules as my pulmonologist calls them. Many times they remain unchanged, and I am hoping that is the case for you. I have one too, but it has been over five years and no change. You can't help but worry though. Glad the heart tests were good so far.
I will be curious to see if the methotexate gives you some relief. My rheumy is considering it.
Joanne
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Post by carolyn12 on May 19, 2009 13:35:46 GMT -5
Peggy: I also have nodules in my lungs, and I'm having a high resolution ct scan done next week. Had regular ct scans done before, so I hope these nodules are nothing to worry about.
Also a PFt is scheduled and I hate those tests, it really wears me out, but I have to tough it out.
carolyn
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Post by Cubby on May 19, 2009 14:00:41 GMT -5
KLW: That is awsome!! I know of another individual, LaurenM, who was on IVIG and Cellcept with Dr Wigley at Hopkins. She recently told me she is in remission. All of her skin is soft and a lot of her treatment is done. Not sure which, exactly. She did not show up here yet, but you can find her on INSPIRE.
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Post by klw1960 on May 20, 2009 10:53:11 GMT -5
Peggy, do I understand this right you are on cellcept and methotrexate at the same time? If so, Whoa....that is some heavy duty meds.
K
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Peggy
New Member
Posts: 33
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Post by Peggy on Jun 8, 2009 11:58:06 GMT -5
Yes, both at the same time. Is that normal? I am so wiped out and I have terrible fatigue with the disease itself. I have my apt on Thursday with the pulmonologist to find out what the huge amount of ground glass that developed in just 3 months is all about. I also am bringing the stress test with. My local doctor said he couldn't explain to me what was in it and that I'm to bring a copy of the test as well as the cardiologist's report to give to her. Talk about confusion. I just want some answers in what's going on.
Warm hugs,
Peggy
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Post by Cubby on Jun 8, 2009 20:05:15 GMT -5
PEGGY: Is there any chance your doctor could try IVIG with the Cellcept?  Lauren, who used to be a member when this was the old board is in full remission after only a year. ALSO, KLW here on this board does cellcept and IVIG and is doing well! Also, many of us do AP. I do AP with Photopheresis and am almost in remission. My point, is that there are other options. Could you bring these options up to your doctor or perhaps get another opinion? Just wondering...... SAMMIE: So sorry you are having those problems again! |
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Post by chosen on Oct 11, 2009 22:26:28 GMT -5
I had a CT done of my lungs a few weeks ago and the pullmonary Dr. said I had 3 non-calcified tiny lung nodules and they were nothing to worry about. My rumey wants to check them again in 6 months. I didn't know these things were so common. Someone on inspire said they happen from not breathing deep enough.
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Post by ltulip on Jan 12, 2010 17:47:01 GMT -5
Hi All, I am new to this site. I was introduced to the site by JeffN. I just joined today. Steve, Jeff suggested I ask you this question about doxcycoline. I am not currently on AP therapy, but intend to ask my doctor to prescribe it for me. I have read Henry Scammell's books, the Road Back Foundation website, and I am ready to move forward with the treatment. Currently, I am taking rotating antibiotics for problems with my gut. One of those antibiotics is doxy. I have currently rotated to doxy. Two weeks on, one week off and then rotate to another antibiotic 2 weeks on, 1 week off). I take 500mg 1x @ day (was taking 500 mg 2x @ day). Jeff says you are taking doxy as part of your AP therapy. What is the dosage protocol for SD? What can you shareabout your therapy? Thanks Linda
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Lauren, who used to be a member when this was the old board is in full remission after only a year. ALSO, KLW here on this board does cellcept and IVIG and is doing well!