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Lee
Member
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Posted: Tue Dec 1st, 2009 13:30 |
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Not sure which forum to ask this but since Dody mentioned the valium helping IP I will try here .... My doc will ONLY give me generic meds. When I asked for brand name valium he really reacted and said quite loudly that the street value for brand name meds like valium were UNbelievable?! Well I was floored and could not even think of a rebuttal as it was so out of character for him. I have been seeing him for 2 years and I thought we had reached the point where he trusted me but maybe not?! He does help me with the abx for the MP but this too is always generic. He is afraid of Benicar and only gives me 40 (per day). I get the other from my MP doc in Va Beach where we used to live. It is time to renew that I am sure that doc will not help me as it has been way over one year since I have seen him. He does know how much Benicar I take and I figure he will now give me more ....maybe??
It is taking me longer than most on the MP. Could it be the generic meds? I can tell you the generic valium was useless.
I see my local untrusting doc tomorrow is there information somewhere so I can discuss generics vs brand with him?
Thanks! Lee
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2003 SARC w/COPD
D ratio-2.13 Ph1-2/05 Benicar| 4/05 PH2| 06 Ph3| D25=5.4 2007-TSH-0.09 probiotics/silymarin/sunlight w/noirs
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Deb Grabetz
Support Team
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Posted: Tue Dec 1st, 2009 13:41 |
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Lee wrote:
It is taking me longer than most on the MP. Could it be the generic meds? I can tell you the generic valium was useless.
I see my local untrusting doc tomorrow is there information somewhere so I can discuss generics vs brand with him?
Hi Lee,
My educated guess is that it is taking you longer than most on the MP due to your level of illness and not so much the generic meds.  I am now almost at 2 1/2 years on the MP and only halfway through Phase II. I know that some would suggest I add a third abx but I have gone that route already and became so ill that it is just not worth pushing it to me. So I am taking it as my body is willing...A slight increase is still landing me in bed...so from my own experience, I think it is the illness.
My sarc has gone totally undiagnosed and untreated for so many years that it is no wonder it is taking me longer than some others. Yet, I am getting better all the time.
I did a search on brand name vs generics and there are varying opinions on this. Some say by U.S. law generics must be the equivalent of brand name, where other articles say there is a different absorption of generic brands. Here is an article you may have interesting. I suppose in the end you may be more comfortable if you could take brand name. It seems that your doc could be more willing to comply with what makes you feel more comfortable and if taking brand names would do that, I think I would push him for those! Just a suggestion!
Generic vs. Brand Name Drugs: Maybe Not the Same | NBC Washington
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D12542, Ph17/07, MPh2 9/07, B12, cover up, NoIRs,return to work after 2 years off- 4/07D2511
5/09 D25<4
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Lee
Member
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Posted: Tue Dec 1st, 2009 15:36 |
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Thanks Deb! You are probably right. I have a 5 year anniversary coming up in Feb. and I am loads better but still not able to work .... Now that hubby has his DX of LGL (leukemia) I need to think ahead even more. I just have this weird feeling lately that I am doing something wrong. I am pretty good with my diet but could do better. I do use a slight bit of plain olive oil spray and need to stop that! I just love to start my meats and veggies with it .... I have two cans of canola now so no excuses. I am probably better than I think, just alot of stress yet masking my wellness .... I am taking your generic vs brand info to the docs tomorrow .... Thanks again!! Lee
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2003 SARC w/COPD
D ratio-2.13 Ph1-2/05 Benicar| 4/05 PH2| 06 Ph3| D25=5.4 2007-TSH-0.09 probiotics/silymarin/sunlight w/noirs
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eClaire
Member
| Joined: | Mon Sep 25th, 2006 |
| Location: | Virginia USA |
| Posts: | 1417 |
| Status: |
Offline
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Posted: Tue Apr 27th, 2010 05:04 |
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I get my blood taken almost every month... though this last time, I waited about six weeks. The last two times my veins were hard to find (I'VE NEVER HAD THIS PROBLEM) and they used a vein on the outside of the right arm, and both times, that vein rolled. (AGAIN, NEVER A PROBLEM BEFORE.)
Well, today, I forced myself to try on a new top in a store. I rarely look at myself in a mirror save looking to see if I am applying my lipstick correctly or if I've got a white fleck of zinc stuck to my face, but there I was under the bright lights checking out how I looked in the top I was considering. What should I discover?
My right elbow looked lumpy. It is puffed up, swollen on both the inner and outer part of the elbow.
The tissue is dense (not at all like the tissue in my left arm).
It does not itch and it does not hurt (though my right rotator cuff is threatening to do a repeat of the pain it gave me for 9+ months early on the MP... before my left rotator cuff is done doing it's thing, having already taken away my range of motion on the left side).
The temperature between the right and left elbow seems no different.
Has anyone else experienced anything like this?
Claire
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42mo on MP; CFS FMS MCS COPD hypermob IBS/GERD osteopor; 125D48 25D<4;
NoIRs during most daylight outings; Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08
* Ph2.Oct-Nov08 * Ph1.Jan09 * Olm.alone.Jun10
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Freddie Ash
Member
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Posted: Tue Apr 27th, 2010 14:27 |
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HI CLAIRE
This is Fred in WV. I put a reply in your phase 2/3 site about your elbows and the ones I had also.
Remember, we are all in this together and I am pulling for us.
Your friend in Sarcoidosis
Freddie
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Freddie: dx-sarc 2/82 lymph; skin, eyes, joints, esophagus, intestines, spleen, heart,lungs-meds digitek, L-thyroxine, nexium, furosemide, nattokinase36mg,eat cinnamon w/meals,25D-7; 125-D43
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Lee
Member
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Posted: Tue Apr 27th, 2010 21:52 |
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I too have funny elbows. The get red when I shower and it looked like inflammation has spread the little bones inside to make them really weird looking??? They hurt upon wakening but once warmed up are ok until I carry heavy things like groceries. But I will add that they are better since the MP ....
We have a tentative offer on the carolina house ... Will I be moving AGAIN??? Lee
____________________
2003 SARC w/COPD
D ratio-2.13 Ph1-2/05 Benicar| 4/05 PH2| 06 Ph3| D25=5.4 2007-TSH-0.09 probiotics/silymarin/sunlight w/noirs
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expate
Member
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Posted: Thu Jun 3rd, 2010 01:41 |
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Lee wrote: Not sure which forum to ask this but since Dody mentioned the valium helping IP I will try here .... My doc will ONLY give me generic meds. When I asked for brand name valium he really reacted and said quite loudly that the street value for brand name meds like valium were UNbelievable?! Well I was floored and could not even think of a rebuttal as it was so out of character for him. I have been seeing him for 2 years and I thought we had reached the point where he trusted me but maybe not?! He does help me with the abx for the MP but this too is always generic. He is afraid of Benicar and only gives me 40 (per day). I get the other from my MP doc in Va Beach where we used to live. It is time to renew that I am sure that doc will not help me as it has been way over one year since I have seen him. He does know how much Benicar I take and I figure he will now give me more ....maybe??
It is taking me longer than most on the MP. Could it be the generic meds? I can tell you the generic valium was useless.
I see my local untrusting doc tomorrow is there information somewhere so I can discuss generics vs brand with him?
Thanks! Lee
Hi Lee,
This is a late reply, but maybe it will help. I take Valium when I fly (I used to be phobic and it allowed me to get on an airplane and not hyperventilate, and though I'm much better now, I take it just in case). When generic Valium became available, I got that. Well, I tell you, it just didn't work. I was flying somewhere and it just didn't calm me at all. So, I got my doctor to write the prescription to be dispensed as written.
To get brand name Valium from a pharmacy is MORE expensive than getting this "on the street". I have this on very good college aged student authority. I wonder when your doc last tried buying it on the street. 
So, when Eckard's [sp?]quit carrying the brand name, I switched pharmacies. I now go to Walgreen's. Once the pharmacist there mistakenly filled my prescription with the generic. I asked for name brand. He said he was just curious, but why did I insist on brand name. Rather than get into it over how "it's just the same as generic", I told him that I took it for my fear of flying, that the fear is a psychological reaction, that the placebo effect is a psychological reaction and that I have more of a belief in brand name Valium. I am, by the way, a very brand loyal consumer. 
All of that is to say, stick to your guns, educate your doctor as much as you can, and abandon him before you abandon your truths.
Odette
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Hypervitaminosis D 1,25-D 52 pg/ml, 25-D 38 (4/08), 25-D 34 (8/08), 25-D 29 (10/08), 25-D 14 (3/09), 25-D 15: D3=15, D2<4 (6/09): all ng/ml, started Ph1 7/17/08, Ph2 11/4/08, Ph3 2/18/09. Covered up, but no facemask any longer. NoIRs. Home low light.
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Lee
Member
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Posted: Thu Jun 3rd, 2010 02:04 |
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Thanks ....I still cannot believe how bad that generic valium was ... I am rid of that doc by way of leaving the area .... He was very hard to work with but I was able to get generic MP meds. I hope to get my old doc here that was very understanding about the quality of brand name meds. I too have an extreme case of "fear of flying" . I am hoping as I am cured of this dreaded th1 and make less adrenalin maybe I can fly again ....soon!!! I have missed out on so much by not being able to fly since 9/11 .... Lee
____________________
2003 SARC w/COPD
D ratio-2.13 Ph1-2/05 Benicar| 4/05 PH2| 06 Ph3| D25=5.4 2007-TSH-0.09 probiotics/silymarin/sunlight w/noirs
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expate
Member
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Posted: Thu Jun 3rd, 2010 02:21 |
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I have found that the more you fly, the better it gets.
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Hypervitaminosis D 1,25-D 52 pg/ml, 25-D 38 (4/08), 25-D 34 (8/08), 25-D 29 (10/08), 25-D 14 (3/09), 25-D 15: D3=15, D2<4 (6/09): all ng/ml, started Ph1 7/17/08, Ph2 11/4/08, Ph3 2/18/09. Covered up, but no facemask any longer. NoIRs. Home low light.
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eClaire
Member
| Joined: | Mon Sep 25th, 2006 |
| Location: | Virginia USA |
| Posts: | 1417 |
| Status: |
Offline
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Posted: Thu Jun 3rd, 2010 05:08 |
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I use diazepam and it used to not work for me, but now it does. I asked for brand and when I found out the price (the pharmacist told me before filling), I said "Never mind."
My generic olmesartan from Cipla is great. I prefer it over brand... hands down.
Claire
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42mo on MP; CFS FMS MCS COPD hypermob IBS/GERD osteopor; 125D48 25D<4;
NoIRs during most daylight outings; Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08
* Ph2.Oct-Nov08 * Ph1.Jan09 * Olm.alone.Jun10
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expate
Member
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Posted: Tue Jun 22nd, 2010 16:14 |
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I was trying to save my insurance company some $$$ and requested the generic for Benicar. My pharmacist told me that there is no generic Benicar.
Thoughts?
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Hypervitaminosis D 1,25-D 52 pg/ml, 25-D 38 (4/08), 25-D 34 (8/08), 25-D 29 (10/08), 25-D 14 (3/09), 25-D 15: D3=15, D2<4 (6/09): all ng/ml, started Ph1 7/17/08, Ph2 11/4/08, Ph3 2/18/09. Covered up, but no facemask any longer. NoIRs. Home low light.
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eClaire
Member
| Joined: | Mon Sep 25th, 2006 |
| Location: | Virginia USA |
| Posts: | 1417 |
| Status: |
Offline
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Posted: Tue Jun 22nd, 2010 21:42 |
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No generic in the US... everyone who uses generic buys outside of the US market. (Mostly because, in the US, their insurance company will not pay for Benicar in the amounts needed.)
Last edited on Tue Jun 22nd, 2010 21:43 by eClaire
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42mo on MP; CFS FMS MCS COPD hypermob IBS/GERD osteopor; 125D48 25D<4;
NoIRs during most daylight outings; Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08
* Ph2.Oct-Nov08 * Ph1.Jan09 * Olm.alone.Jun10
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expate
Member
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Posted: Tue Jun 22nd, 2010 22:54 |
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*feels very fortunate that insurance has not questioned Benicar use*
*knocks on wood*
dette
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Hypervitaminosis D 1,25-D 52 pg/ml, 25-D 38 (4/08), 25-D 34 (8/08), 25-D 29 (10/08), 25-D 14 (3/09), 25-D 15: D3=15, D2<4 (6/09): all ng/ml, started Ph1 7/17/08, Ph2 11/4/08, Ph3 2/18/09. Covered up, but no facemask any longer. NoIRs. Home low light.
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