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MERCOUMA
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| Joined: | Wed Oct 31st, 2007 |
| Location: | Paris, France |
| Posts: | 41 |
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Posted: Sat Dec 8th, 2007 00:52 |
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Benicar post
Dear all,
I've started the Minocycline pills last monday, and today, i'm taking the third dosis. I was apprehensive before taking my first dosis because my disease (presume sarcoidosis) is not definitly identified (may be a low stage) and I was waiting for the reaction of my body, hoping that there will be.
Because the low stage of my disease, and because the pill was difficult to divide (sticky powder !) i took 50 mg directly (still on this dosis).
I think that my experience can be intersting for you because of my low stage and I will try to describe my progresses correctly.
Benicar Blockade still in place (3 times a day). Mino 50 mg every 48 hours.
To be honest, I was very happy whan, 5-6 hours after my first Mino, I felt a body scratch from head to toe. The tolerance of this syptoms is perfect (may be 2 on a scale of 10). It's definitly linked with the Mino, because I did not have this before; I mean that i had prurit during my disease, but not during the past few weeks. Moreover, this time I have a few pimples on different part of my body (one on the face, other on abdomen,...)
Others signs: joint pain equal than before (exept on the knees thath I don't remember having had before), headache equal, orchitis equal,... The difference that I can see is that all these signs seems to happens at the same time, wich was not the case before MP.
Eye and photosensibility: As I say before, I'm not photosensitive. Before MP, I experienced trouble on the right eye just since one month. Now, on MP, I feel no difference for the left eye, but on the right one, i feel like if it was warm and sensitive every time. Sometime, when i'm outside, i put glasses in order to relieve it. I try to avoid light any time.
I plan to stay at this dosis of Mino untill the 7th one (each 48 hours), even if I don't feel so bad, after what I will increase dosis. For sure, I continue to avoid food with Vit D, i limit my sun exposure, and i go on taking Benicar 3 times a day.
Thank you so much for comprehension and for your support and advices. I'm so happy having found you. I'm eager to increase mino dosis but I will go step by step, waiting 15 days on the 50 mg dosis before increasing it.
All the best
Mathiew
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Vascularitis early stage.Lymphopenia,joint pain, Neck and thyroid nodes,irritable bowel,...,1-25D=30 & 25-D=27,6.Began MP 28/11/2007.No other Meds.Wearing Oakley Glasses.First Mino dosis 3rd december.Phase II 15/01. Phase III 20/03. Last25D=10.
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Posted: Sun Dec 9th, 2007 01:38 |
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Thanks for checking in. Please use our new reporting format. This provides a 'snapshot' of your current situation so we can provide an accurate response. It's important that you include all the basic information in your report so we don't have to ask for clarification.
MP meds:
Palliative meds:
Light exposure:
Symptoms:
Comments:
Plan:
Questions:
You weren't on Benicar for very long, you only have Oakley sunglasses and you started taking 50mg of minocycline. It is very important you follow the Phase One Guideline exactly.
Even though your diagnosis is not definitive for sarcoidosis and you believe the disease is at an early stage, subclinical inflammation can cause intolerable, even dangerous, immunopathology. As your still immunosuppressive 25-D comes down, your immune system will begin to function better so it's important to be more cautious.
Be sure to notify staff before you take any action that is unfamiliar to you. Staff usually respond within a few hours but we ask members to give us more than a day to answer time sensitive questions.
You have reported increased eye inflammation and that only wear Oakleys "sometimes" when outside. See Will the immune response cause increased eye inflammation?
Oakleys are okay for artificial light indoors only. See Light avoidance simplified. Ordering information for NoIRs to use outdoors is in Protecting Your Eyes.
You need to reduce your dose of minocycline to the recommended 25mg every other day and see If antibiotics are effective at very low doses, why do we ramp up the dose?
If you have trouble dividing the capsule you can see how others do it in How do I take a low dose of minocycline when the capsules only come in a larger dose size?
Photosensitivity is more than eyes becoming sensitive to light. Photosensitivity means any symptom provoked by exposure to natural light or bright lights. The amount of light you can expose yourself to depends on the amount of symptoms you can tolerate.
During Phase One you will learn to identify your immune response symptoms and manage all aspects of the MP....avoiding light and vitamin D, getting adequate rest, pacing activities, eating well, etc. You will gain experience adjusting MP meds and using your personal tool kit to maintain tolerable immune system reactions. This skill will carry you smoothly through the protocol; when you have learned to manage on a day-to-day basis, you will be equipped to handle a crisis if it occurs. Carry on.....
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MERCOUMA
Health Professional
| Joined: | Wed Oct 31st, 2007 |
| Location: | Paris, France |
| Posts: | 41 |
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Posted: Sun Dec 9th, 2007 11:45 |
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Thank you Meg for your advices. I will try to divide Mino dosis as best as I can. I've ordered Bolle glasses but still waiting.
I'll keep in touch. Kindly.
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Vascularitis early stage.Lymphopenia,joint pain, Neck and thyroid nodes,irritable bowel,...,1-25D=30 & 25-D=27,6.Began MP 28/11/2007.No other Meds.Wearing Oakley Glasses.First Mino dosis 3rd december.Phase II 15/01. Phase III 20/03. Last25D=10.
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MERCOUMA
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Posted: Mon Dec 10th, 2007 19:34 |
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Hello Meg,
After reading differents posts, i tryed to lengthen the time between the doses of Mino to 72 hours. Effectively, it provokes me a stronger reaction on the last day. Signs was more or less the same than before, but with a higher discomfort.
Can we consider that this changed of schedule is equivalent (on the third day) than the reaction I might have the second day by taking 25 mg of Mino. Or do I have to take 25 mg of Mino every 48 H?
Thanks for your help 
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Vascularitis early stage.Lymphopenia,joint pain, Neck and thyroid nodes,irritable bowel,...,1-25D=30 & 25-D=27,6.Began MP 28/11/2007.No other Meds.Wearing Oakley Glasses.First Mino dosis 3rd december.Phase II 15/01. Phase III 20/03. Last25D=10.
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MERCOUMA
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| Joined: | Wed Oct 31st, 2007 |
| Location: | Paris, France |
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Posted: Sun Dec 16th, 2007 19:49 |
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Hello Meg,
MP meds: Olmetec 40 mg three time each day. Mino 25 mg every 48 hours since one week.
Palliative meds: None
Light exposure: Wearing Bolle 100. Covering myself.
Symptoms: My symptoms decresed since i passed to 25 mg Mino. I can't said that I feel something different now than before beginning the MP. Except a mild orthostatic hypotension.
Comments:
Plan:
Questions: Because I started with 50 mg Mino, how long am i suppose to stay at the 25 mg dosis ?
Thank you for your support
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Vascularitis early stage.Lymphopenia,joint pain, Neck and thyroid nodes,irritable bowel,...,1-25D=30 & 25-D=27,6.Began MP 28/11/2007.No other Meds.Wearing Oakley Glasses.First Mino dosis 3rd december.Phase II 15/01. Phase III 20/03. Last25D=10.
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Posted: Sun Dec 16th, 2007 20:15 |
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It's good to know symptoms are less with decrease minocycline.
In your next report, describe your sun exposure (e.g. 1 hr daily commute to work or 2 hr trip to doctor on Monday only or 2 hrs playing tennis outdoors on Friday or housebound all week in low lux home) for the week. This provides a clue to the cause of any symptom increase and helps you correlate cause/effect
Finding the low enough/high enough dose level when increasing or changing meds that works for you is part of the experience gained throughout the MP Journey. Until you know, it is best to err on the side of caution. Stay at each subsequent dose level for a minimun of 3-4 doses with tolerable symptoms at all times before increasing. See How to adjust MP meds. Assess the options one at a time. Do not hesitate to use any of the adjustments suitable to you.
As your 25-D drops and your immune system is no longer suppressed, you can expect more immunopathology
Carry on.............
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MERCOUMA
Health Professional
| Joined: | Wed Oct 31st, 2007 |
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Posted: Fri Dec 21st, 2007 18:53 |
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Hello Meg,
MP meds: Olmetec 40 mg three time each day. After one week on 25 mg without any noticeable Herx, i've passed the last week on 50 mg dosis but I did not noticed many changes, except the fact that my eye sensitivity and my prurit has decreased as time goes along. I planned to switch to 75 mg dosis next time.
Palliative meds: None
Light exposure: Wearing Bolle 100. Covering myself. Spending 1 hour driving during day time each day to go to work, and another hour coming back but at night. My desk is dark. I'm trying to limitate the time spending on the computer. On wednesday, I had a meeting where i had to spend all day doing presentation on a bright screen and at the end of the day, my right eye was tired.
Symptoms: A mild prurit which has decreased to reach a score of 1 on a ten point scale.
Comments:
Plan: I'm planning to go to spend holidays in my family in Bordeaux (550 kms from Paris).
Questions: None for the moment. I'm going ahead through the MP journey.
Thank you for your help
(To reduce white space at the end of a post, slide the space bar on the right all the way down and move your cursor to the end of the page. Or hit the end button or the down arrow to advance the cursor to the end of the page. Then, click backspace until the while space is gone.)
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Vascularitis early stage.Lymphopenia,joint pain, Neck and thyroid nodes,irritable bowel,...,1-25D=30 & 25-D=27,6.Began MP 28/11/2007.No other Meds.Wearing Oakley Glasses.First Mino dosis 3rd december.Phase II 15/01. Phase III 20/03. Last25D=10.
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Posted: Fri Dec 21st, 2007 22:20 |
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In phase one, it's a good idea to experiment with minocycline and Benicar to see how they work for you. Extend the mino dosing schedule to every 72 hours to see if symptoms are dampened or if more immunopathology is provoked. And conversely, when symptoms peak (not necessarily intolerable), reduce or stop the mino dose to see if that dampens symptoms.
You could also try taking lower-dose minocycline every six or 12 hours to see if mino has an anti-flammatory effect for you. When a symptom approaches intolerable try an extra Benicar to see if that measure is effective to quell the symptom. The resulting information can be added to your personal tool kit and could come in handy in the future if symptoms become intolerable and you need to adjust MP meds to manage immunopathology.
See What precautions do I need to take when I am going out or when traveling away?
Have a safe trip..........
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MERCOUMA
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| Joined: | Wed Oct 31st, 2007 |
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Posted: Mon Dec 31st, 2007 22:39 |
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Hello Meg,
Before all, I would like to wish you an happy new year for you and for all the MP team. You are doing a wonderfull job very usefull for many of us. Thank you and hoping your work will be recognized soon...
MP meds: Olmetec 40 mg three time each day. Mino 75 mg every other day.
Palliative meds: None except paracetamol / dextropropoxyphène for headache
Light exposure: Wearing Bolle 100. Covering myself. Concerning the light, I've noticed some changes about my eye sensitivity. I do not seem to be photosensitive any longer. Since more than 15 days, the initial feeling that I had on my right eye (the only one where I experiment problems before MP) almost completly disapear. Yesterday and today, I experiment a remind of this feeling because I drove 6 hours night/day to come back to my house in Paris, and today, I have an headache and a rignht eye tiredness. Sorry Meg but I have no family in Paris (except wife and son) so it was important to visit them in Bordeaux.
Symptoms: When i increase the Mino to 75 mg i experiment new prurit (2/10) and I noticed the "coming back" of one symptom that I had 9 month ago, and which had disapeared since then. It is sternum sensitivity, in some definided points of the bone. I can feel it if I push on it. This time, the sensitivity came with pimples. My others symptoms are parethesia, pain on the elbows and on the right heel, and a mild bowel pain. These signs are not new for me, but they are stronger the second day (instead of the prurit wich only exists the first day) and stronger again if I wait 72 hours. Taking mino at 50 mg seems to dampen these symptoms. I did not try extra Benicar.
Comments:
Plan: I took my first 100 mg Mino tonight
Questions: None for the moment. I'm going ahead through the MP journey. I stay watchful about all the changes that can occur in my symptoms...
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Vascularitis early stage.Lymphopenia,joint pain, Neck and thyroid nodes,irritable bowel,...,1-25D=30 & 25-D=27,6.Began MP 28/11/2007.No other Meds.Wearing Oakley Glasses.First Mino dosis 3rd december.Phase II 15/01. Phase III 20/03. Last25D=10.
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Posted: Mon Dec 31st, 2007 23:28 |
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| Thanks for checking in. It looks like you are doing well, having learned to independently manage immunopathology by adjusting MP meds and using your personal tool kit to manage immune system reactions. Keep up the good work.....
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MERCOUMA
Health Professional
| Joined: | Wed Oct 31st, 2007 |
| Location: | Paris, France |
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Posted: Sun Jan 6th, 2008 15:30 |
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Hello Meg,
MP meds: Olmetec 40 mg three time each day. Mino 100 mg every other day.
Palliative meds: None except one Quarter of Bromazepam one night
Light exposure: Wearing Bolle 100. Covering myself. The problem of my right eye which came back because of the christmas trip, is solve now but it took a while (5 days) to do so.
Symptoms: The prurit still occurs on the first 100 mg dosis but no longer now. The other signs are still more or less present. A new sign occur this week: hematomas on the legs (3), especially on the cafts. I had, during the past year, noticed these hematomas and there is no indications that these ones are linked with the treatment. But, as i suppose that they are part of my illness, it can be the case. Anyway, they are not stronger or bigger than those I had before.
I sleep a lot and I need rest. On wednesday, I stop the clock alarm without any conscience of it, and miss the time to go to work!! First time it happen to me!
Plan: Making new 25 D dosage. Creatinin and CRP too. Wait for instructions.
Questions: Do you know cases of hematomas and vascular problems similar than mine in people with Th1 diseaese? What do you advice me in order to progress to phase II ?
Thank you for your help and support.
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Vascularitis early stage.Lymphopenia,joint pain, Neck and thyroid nodes,irritable bowel,...,1-25D=30 & 25-D=27,6.Began MP 28/11/2007.No other Meds.Wearing Oakley Glasses.First Mino dosis 3rd december.Phase II 15/01. Phase III 20/03. Last25D=10.
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Foundation Staff
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Posted: Sun Jan 6th, 2008 19:02 |
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Thanks for checking in..... It's good your eye feels better. Keep in mind that Bolle 100 sunglasses are only equal to NoIR 10% and may not be strong enough for outdoor use. See Protecting Your Eyes
Any symptom that correlates with MP therapy is due to immunopathology. Immunopathology may reveal areas of inflammation still subclinical (hidden) such as the skin lesions you describe. You can assume (until proven otherwise) that any symptom you now have while on the MP, is due to an immune system reaction.
Cutaneous manifestations of sarcoidosis are common and varied. See Symptoms of sarcoidosis. The body of folks with systemic Th1 infection severe enough to cause sarcoid granuloma is going to exhibit wierd physical phenomena as it heals. These include spots on the skin which are often red. This article by a practicing dermatologist explains that both "specific" and "non-specific" skin lesions are found in sarcoidosis
Before you leave phase 1, it's important to try increasing Benicar to see the effect it has on your symptoms. When a symptom approaches intolerable try an extra Benicar. If that is not effective, increase to every four hours around the clock (set an alarm) to see if that measure is effective to quell the symptom.
The second and third phase guidelines are available to study participants upon request at completion of phase one. Please see How do I know if I'm ready for phase two? for information on how to request the questionnaire.
Keep up the good work..........
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MERCOUMA
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| Joined: | Wed Oct 31st, 2007 |
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Posted: Tue Jan 15th, 2008 22:18 |
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Hello Meg,
Sorry for being late for my reporting but I had a little computer problem.
MP meds: Olmetec 40 mg three time each day. Mino 100 mg every other day. As you told me, ifound the opportunity to try an extra Benicar. I had a strong headache this week and instead of using paracetamol or Ibuprofen, I used Olmetec 40 mg. It definitly works on me very well, and it also decreases my bowel and heel pain.
Palliative meds: None
Light exposure: Wearing Bolle 100. Covering myself.
Symptoms: Not many. Still bowel and heel pain. A strong headache one day, solved by an extra Benicar.
Comments:
Plan: Waiting for my 25 D dosage by the end of the week ; I ordered creatinine and CRP dosage too.
Questions:
Thank you for yous help and support.
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Vascularitis early stage.Lymphopenia,joint pain, Neck and thyroid nodes,irritable bowel,...,1-25D=30 & 25-D=27,6.Began MP 28/11/2007.No other Meds.Wearing Oakley Glasses.First Mino dosis 3rd december.Phase II 15/01. Phase III 20/03. Last25D=10.
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Posted: Wed Jan 16th, 2008 18:23 |
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Thanks for letting us know you are feeling better......... Keep in mind that Bolle sunglasses may not be strong enough for outdoor use. See Protecting Your Eyes.
Keep up the good work........
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MERCOUMA
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| Joined: | Wed Oct 31st, 2007 |
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Posted: Thu Oct 8th, 2009 11:35 |
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Hello,
Giving news after a large time without any. Still on the road.
Now Phase 3 Bactrim again ; second month of Bactrim.
I can say now that results of the protocol are really incredible!! No more blood in the noose, diminution (but not disppearance) of granulomas in the neck, diminution of all pains (muscle, numbness,...) and off all the pruritis, diminution of hematomas on the legs, and.... return of a Lymphocytes count over 2000 ... not occurs since 4 years !!
I can say that the last IP reaction i experiment are 1- veins reaction (link to hematomas) on the legs but now only when i change an AB...2- Kidneys pain (but they are less than the fisrt time i was on Bactrim.
One last thing which can appear marginal but that can have an importance to understand some physiological and pharmacological interactions beetween body and MP: before starting MP , i'd noticed that the hairs of my legs (internal faces of thigh) proggressivly disapeared and they turned to "baby skin)!!! After almost 2 years on MP, i can definitly assure that i recover all my initial "hairy thighs" and even more than before illness! Also noticed that since i'm on MP, hair are appearing in place where they never do so before: for instance in my noose !! But don't worry, i'm not becoming a King Kong !!   Anyway, this may have relation with hormonal mecanism ??
Hoping that things are going on well for all the MP community especially those who takes part of the researching team. Hoping to hear from you soon. Mathieu
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Vascularitis early stage.Lymphopenia,joint pain, Neck and thyroid nodes,irritable bowel,...,1-25D=30 & 25-D=27,6.Began MP 28/11/2007.No other Meds.Wearing Oakley Glasses.First Mino dosis 3rd december.Phase II 15/01. Phase III 20/03. Last25D=10.
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BARNEY
Moderator
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Posted: Thu Oct 8th, 2009 14:07 |
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Hello Matthiew,
Glad to see your progression on MP.
The hair on my head is getting thicker which had gotten very thin preMP.
Keep up the good work.
HANG IN THERE, WE WILL MAKE IT!!!!BARNEY
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64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,Benicar40/20mg&xtra
as needed,stage5,
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Dr Trevor Marshall
Research Team
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Posted: Thu Oct 8th, 2009 15:57 |
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Mathieu,
Mice bred without a VDR have alopecia - they are hairless. It is reasonable to expect that the human VDR is also somehow responsible for hair growth
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