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How do I wean off of Methotrexate?
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Leesa
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 Posted: Sun Nov 13th, 2005 18:27

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I am starting the MP near the start of January. I found an incredible doctor and he is with me all the way! He suggested that I post this question to see if anyone had any recommendations on the best way to get off off the Methotrexate before starting the protocol.

I was on 15mg and last week I only took 12.5 mg. I plan to begin the MP aprox January 9th.

I am also on 1 drop of Predforte eye drops because I have had keep getting Uvitius back every time I discontinue the drops.....will this be a problem to start the MP while on one drop a day?

I get all my blood work back this week on Wed and will post the results then!

Getting ready to start,

Leesa



____________________
Sarcoidosis(12-04 biopsy):Uvitus-eyes, Swollen- Parotid Glands, Granulomas-arms, some joint pain & fatigue; Started MP 1-06;Phase 2 03-06 Phase 3 07/06 NO MORE Eye Drops! Have not been on Protocol for several years (Sept 2011)
murcierashley
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 Posted: Mon Nov 14th, 2005 19:41

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Congrats on finding a good doctor. I was on MTX and prednisone. The reseach team, namely Meg, informed me that you don't have to wean off of MTX. You just stop taking it. That being said, I would suggest you wait for a reply from the research team before you stop taking it. They will provide you with links that support this. This is what Meg told me: "Although MTX lingers in the tissues for several weeks, the body does not become physically dependant on it so there is no reason to wean from it. It your symptoms flare, the Benicar blockade should help."
Just wanted to share that with you so you'd know there was one less thing to worry about. Good luck to you.

Maria



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Maria: pulm sarc(Dec 2000) 3L-6L O2 24/7; dyspnea (severe) chest pain cough fatigue rash; 8/05 1,25D-43 D25-22; Ben 40mg/q6h 9/12/05) Mod Ph2-2/2/06; Spiriva (q1d),Tramadol(50mg)& Guaifen as needed; NoIRs avd D & sunlight; 8/06 25D-10
Rosie
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 Posted: Mon Nov 14th, 2005 19:42

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Hi Leesa,

You need to ask the Dr who put you on Methotrexate about how to stop it.

I was taking it for about a year, 12.5mg per week. I was so ill from the whole treatment process that I decided to stop. I went to my rheumy and asked what the procedure was for discontinuing methotrexate and he said that it could just be stopped, no weaning necessary. So that's what I did.

I was very, very sick at the time and did not notice any worsening of my symptoms after stopping metho, in fact, only after I stopped it did I see my sed rates finally start to come down (go figure).

Good luck to you.

Rosie



____________________
Thyroid Disease, FMS, Functional Cervical Stenosis/ACDF, Osteopenia, Parox Atrial Fib, Insomnia; 9/05: 1,25D=53, 25D=27; stopped D suppl (525iu/day) on 8/3/05, 4/11: 1,25D=49, 25D=15
Margo
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 Posted: Mon Nov 14th, 2005 21:01

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Leesa,

Meg asked me to answer you, as my daughter has been on some of the same medications. (You can read more about her at Teen on MP.)

My understanding is that people generally wean from Methotrexate so they can tell at what dose their symptoms return. Otherwise, I don't think that weaning is necessary. Do you notice that the Methotrexate has reduced any of your sarcoidosis symptoms?

My daughter has had a lot of benefit from the Marshall Protocol while using Pred Forte eye drops - but we are concerned that the pred drops might be interfering with resolution of her uveitis. From my experience with my daughter, I imagine that you could benefit from the MP, even while using your current low dose of Pred Forte eye drops. If you can successfully wean from the pred drops, that would be even better.

Benicar is likely to help you wean down from the pred drops (just as it helps people to wean from oral prednisone). (There is also research that suggests that medicine in the same class as Benicar helps

I would ask your doctor about changing from Pred Forte eye drops to one of the lower strength prednisolone eye drops (such as Pred Mild, or Lotemax). Initially, you might need more than one drop per day of one of those drops, but you might be able to decrease to only one drop per day, and then to one drop every other day, and so on. People are more likely to be successful weaning from prednisone when they wean very slowly.

There is a new, NSAID eye drop called Nevanac, which may also help you wean from the Pred Forte drops.

I hope this helps.

Margo



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Parent of teen-aged sarcoidosis/uveitis patient on the MP
Leesa
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 Posted: Thu Nov 17th, 2005 12:22

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Thanks so much for your reply. I brought the info to the eye doc yesterday and he is going to try to switch me to one of those eye drops.

Did Methotrexate take away a lot of my Sarc symptoms? Sort of...my perotid (speling?) glads were VERY swollen and it took those away (along with Prednisone at first) and I had grandulomas on two spots on my arms and those are gone, but I am not sure if it really helped with my reoccurring uvitus or not?? Fatigue and constant infections on my hands whenever I had a cut, yes it helped a bit.

But...I am excited to do the MP. I start in January after a big family trip. Can you tell me more about how you did the protocol as far as the avoiding sun light. That seems to be my biggest mental challenge and for a teen, I bet it was hard. Has she started to resume some normal activity now? (didn't I read that she is in faze 3?)

Do you feel that the Benicar was crucial in helping the eye during the MP and especially during the herxing?

Any other helpful advice for a mother of 3 preschoolers? (I am scared but excited). I am happy to get any advice , I intend to conquer this!!

Thanks for everything! Leesa

Last edited on Thu Nov 17th, 2005 12:29 by Leesa



____________________
Sarcoidosis(12-04 biopsy):Uvitus-eyes, Swollen- Parotid Glands, Granulomas-arms, some joint pain & fatigue; Started MP 1-06;Phase 2 03-06 Phase 3 07/06 NO MORE Eye Drops! Have not been on Protocol for several years (Sept 2011)
George
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 Posted: Mon Nov 21st, 2005 06:28

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I go for my Vitamin D panel blood work tomorrow and then will see my doctor on Tuesday.  He is suppose to get me started on the MP.  But... I've been on MTX for almost 3 years now.  I am up to 20mg weekly.  I'm still having so many problems that I am now desperate to find something that will work.  When I didn't take the MTX I was completely disabled, so I didn't really have any options other than to take it.  I have to work, outside, for a month, beginning around Dec. 11th.  I am very concerned about stopping the MTX before I finish that work.  But, as I understand it, I should not start the Benicar unless I completely stop taking the MTX, right?  I can barely function sometimes, even with the MTX.  I am excited and hopeful about starting the MP.  Should I wait until January to stop the MTX and begin the MP in complete earnest?  Or should I stop the MTX and start the Benicar and pray I do fine through December?  Or what?  I'll be discussing that with my doctor, but I need some advice anyway so I won't go totally unarmed.  I've read all the frequently asked questions and other threads, but I can't seem to find enough info to be sure about what to do.



____________________
Pre-MP. RA 3 yrs,10 mos--AP 3 yrs 3 mos. MTX 20mg/wk, Mobic 7.5mg/day, Elavil 10mg/day, Benicar 20mg Q8H, Minocin 100mg BID MWF.
Aussie Barb
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 Posted: Mon Nov 21st, 2005 06:58

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George

Welcome to MP.com ... Thank you for reading the Information in preparation.. You would need to stop the MTX when beginning the Benicar. and you need to be able to diligently protect yourself from light to begin the Benicar. December is almost upon us.. If you absolutely have to do that work, and you want to begin MP, it would be advisable to spend this next month preparing yourself and your home for the MP..  do you know how to do so?

see The Essential Information is in ABOUT THE MARSHALL PROTOCOL and all links alphabetised in the ABC of MP .. let us know if you have any questions..

Here are some of the aspects to start with the "non-medical" aspect of the Marshall Protocol as soon as you can.

It is very important that you avoid vitamin D from food and supplements. That includes natural sources, such as egg yolks, fish, fish oil and fortified dairy products. you will see by reading the labels that Vitamin D is added to many foods… including some brands of orange juice and bread.

You also need to avoid Natural light to skin and eyes, and avoid bright lights in eyes. The windows in your home must be covered to block the light from entering even if the windows are shaded by trees or overhang, or are facing north. If you go outside you need to cover up completely. That includes long pants, long sleeves, scarf, hat, and gloves. You also need to obtain, and wear NoIR sunglasses inside and out. Fluorescent lights in offices and stores can also cause problems in your eyes, and you should wear the NoIR glasses there as well as when you are watching TV or working on your computer.

These measures may help you to start feeling better soon.

It is advisable to order your NoIR glasses asap because they usually take some time to be delivered..  and for Safety and Efficacy, we recommend having the glasses before beginning Benicar. Avoiding vitamin D and if possible, wearing your glasses etc may go some way toward reducing the vitamin D as required.

Please check all precautions / instructions in the Phase One Guideline see NEW Addendum.  some have it printed to check with regularly. It is important to follow the essential aspects and guidelines as written for safety and efficacy of treatment. Your Dr may call Dr Marshall anytime to discuss your treatment.
1. When your Doctor orders Benicar, we recommend asking s/he to Rx Minocycline at the same time, to have in hand for use when required.

when you do get your blood test results see What to include in your preliminary test result reports.

thanks, Barb ...



____________________
♥Barb♥: Dx Inflammation - Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04-Aug2010| barbliv @ hotmail.com | ABC of MP| Barb's Story|
George
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 Posted: Tue Nov 22nd, 2005 02:32

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Thanks, Barb.  I think I'll do just that--wait until January.  In the meantime I will be getting the Redi Shades and such in order to keep all sunlight out of my house.  I've ordered the NoIR glasses, also.  In January I will be in a better position to be home and stop the MTX, then start the Benicar.  I just know that without the MTX I could not even walk or lift my arms, so I am a bit scared about stopping it, since I live alone.  Totally disabled is a pretty frightening thing! 

I'm busy now just trying to learn which foods I can and cannot ingest, so that I can avoid the Vitamin D and any added folic acid.  I guess all that is enough to work on until the first of January.  Hopefully just those few things will help me feel a little better. 



____________________
Pre-MP. RA 3 yrs,10 mos--AP 3 yrs 3 mos. MTX 20mg/wk, Mobic 7.5mg/day, Elavil 10mg/day, Benicar 20mg Q8H, Minocin 100mg BID MWF.
Margo
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 Posted: Fri Dec 2nd, 2005 18:06

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Leesa,

This is what I understand about the issue of weaning from methotrexate.

1)It is not harmful to the body to just stop taking mtx. This is in contrast to prednisone, where abruptly stopping can cause a number of problems, from rebound inflammation to some difficulties as the body has to quickly begin producing adrenal hormone (which is suppressed by prednisone). People are advised to wean from prednisone. Our rheumatologist says that the effects of mtx might linger for four to six weeks after stopping.

2)In conventional medical practice, people are advised to wean from methotrexate in an attempt to see at what dose their symptoms return. Sometimes, they are then advised to continue methotrexate at a lower dose.

3)I am not sure if there is a risk of rebound inflammation from stopping methotrexate abruptly. My daughter's ophthalmologist thought it was a risk, but her situation is more difficult to interpret because she stopped the methotrexate soon after eye surgery. After an earlier eye surgery, when she was still taking methotrexate, she experienced increased inflammation in the eye (uveitis) as a result of the eye surgery.

4)Because methotrexate has some antibiotic action, there could be more Herxheimer reaction if someone begins Benicar while still on methotrexate. So far, I have not found any medical articles that describe how methotrexate is supposed to work when used to treat uveitis, rheumatoid arthritis, or sarcoidosis. Trevor Marshall has suggested that the reason mtx can help in these diseases is its (mild) antibiotic action. Whether or not it has other effects that would suggest tapering, I cannot say.

In my daughter's case, she was taking a higher dose than many (30 mg once a week by injection). She hated the injections and the nausea, and so did we. We also saw very little benefit from the mtx, and a big down side, as the nausea, even with anti-nausea medication, lasted for half of the week. Finally, she just couldn't stand it anymore.
Her uveitis increased, and then has slowly decreased. As I mentioned above, the uveitis might have increased in any case because of her eye surgery.

Does the doctor who originally prescribed methotrexate have suggestions about tapering the dose?

Margo



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Parent of teen-aged sarcoidosis/uveitis patient on the MP
Leesa
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 Posted: Sat Dec 3rd, 2005 20:21

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The doctor that is treating me for the MP is not the same doctor that prescribed the Methotrexate. My Rhumatologist was unsure about the MP so I went to one of the doctors on our list and he happens to be a pediatrician and does not have a ton of experience with Methotrexate as my Rhumatologist did. He said to check with her on the weaning process, she indicated by phone that I did NOT need to wean.

However, my doctor and I decided to wean becuse I have a huge trip planned over Christmas... but the Methotexate does not seem to help my Uvitus which is my biggest problem, so I could stop the Methotrexate abrubtly if it is better for the start of the MP. I plan to start the second week of January, right after my trip. I was on 15mg 1 time a week and I am now down to 10mg.

Any advice?



____________________
Sarcoidosis(12-04 biopsy):Uvitus-eyes, Swollen- Parotid Glands, Granulomas-arms, some joint pain & fatigue; Started MP 1-06;Phase 2 03-06 Phase 3 07/06 NO MORE Eye Drops! Have not been on Protocol for several years (Sept 2011)
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 Posted: Sat Dec 3rd, 2005 21:11

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Leesa,

Here is what we know about discontinuing Methotrexate:

Benicar should be started only after MTX has been discontinued to avoid an intolerable Herxheimer reaction due to MTX's antibiotic action.

It is not harmful to the body to discontinue MTX abruptly. This is in contrast to prednisone, where abruptly stopping can cause a number of serious problems, from rebound inflammation to an adrenal crisis as the body has to quickly begin producing adrenal hormone (which is suppressed by prednisone). People are advised to wean very slowly from prednisone.

In conventional medical practice, people are advised to wean from methotrexate in an attempt to see at what dose their symptoms return. Sometimes, they are then advised to continue methotrexate at a lower dose.

Some doctors think there is a risk of rebound inflammation from stopping methotrexate abruptly. Taking a few weeks to wean from MTX, while probably not necessary, is the cautious approach to avoid the symptoms of rebound inflammation.

Some doctors say that the effects of MTX might linger for four to six weeks after stopping. This effect would be rebound inflammation. The Benicar blockade will reduce inflammation so it is not necessary to wait 4-6 weeks after discontinuing MTX to start Benicar.

Best,

Meg

Leesa
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 Posted: Fri Dec 9th, 2005 21:19

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I was taking 15mg per meek of the Methotrexate. I weaned down to 12.5 for 2 weeks, 10mg for 2 weeks and then 0 last week, I was thinking I would stop in order to get it out of my system before starting the MP on Jan 9th. However, now I am nervous that I may have a "flair up" of some sort that will effect our family trip or something that may make it more difficult for the Benicar to control. So...I can not decide if I should wean or not? Stop or not?

Before Methotrexate I had very swollen Parotid Glands and some joint pain in my fingers (not too pad) and a ton of hand infections if I got a paper cut or something and fatigue early every evening and reoccurring Uvitus. After taking Prednisone and Methotexate and then weaning off the prednisone I only had the reoccurring uvitus. So.....should I continue Methotrexate until I start the Benicar or just stop now. I can not decide???? My doctor is unsure but suggested maybe weaning becuse of my family vacation, but I do not want it to effect my starting the MP Jan 9th..... help???

I am totally prepared, I have my lux meter, I have my NoIRs (all 3), I put up ready blinds on the shady windows (behind 2" wood blinds) and I sewed black out curtains for all other windows and hung them on a tension rod behind the blinds that already hang, I am dimming the lights and starting to cut back on vitamin D foods (this is the next step). I am off of all my supplements, I quit running and training for my half marathon and have my gloves and hats and long sleeves and pants ready to go......

I am struggling with a case of Uvitus right now again, but as soon as I am a bit more stable we are going to try to get me off of Predforte to Lotemax and then later to Nevanac.....but my eyes are really being a bugger right now!!!!

I am emotionally ready too. AM I MISSING ANYTHING?

Back to the food-if dairy product ARE NOT fortified with vitamin D and have less than 6% vitamin A and either say no D or does not say on the label, can we have them? Examples-half and half by Horizon, they do NOT fortify with vitamin D, cheese and yogurt again NOT fortified or no D on label? Can you eat any food with egg yolks in them OR do you have to read labels and if it says egg or egg yolk, then it is a definite NO, like pasta and many baked goods? How about soy mayonnaise with no egg?

This is my list of questions for now...........

Leesa



____________________
Sarcoidosis(12-04 biopsy):Uvitus-eyes, Swollen- Parotid Glands, Granulomas-arms, some joint pain & fatigue; Started MP 1-06;Phase 2 03-06 Phase 3 07/06 NO MORE Eye Drops! Have not been on Protocol for several years (Sept 2011)
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 Posted: Sat Dec 10th, 2005 01:18

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Hi Leesa,

It's great to know that you are so well prepared and excited about starting the MP.

Since Methotrexate makes you feel better and you want to increase your odds of feeling okay while on vacation, you should ask your doctor about continuing the Methotrexate until after your vacation. It can be discontinued abruptly before you start Benicar.

To prevent increased eye inflammation, you should wait until you are on Benicar before you begin weaning from the prednisone eye drops.

FOOD TIPS has posts on Dairy Products, Carbohydrates, Breads, pasta, cereal, etc. and Oils which will answer your specific food questions.

Let us know if and when you have any more questions. :)

Best,

Meg

Leesa
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 Posted: Sat Dec 10th, 2005 01:40

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So taking Methotrexate up until close to the start of the MP rather than weaning off of it now (a month early) will not "slow me down too much"?

Thanks for directing me to the food answers, there is so much information on this site (a great problem to have) that sometimes I can not find it (especially with two preschoolers and a toddler hanging on to my ankles :)

Meg, you are wonderful!

Leesa

 

 



____________________
Sarcoidosis(12-04 biopsy):Uvitus-eyes, Swollen- Parotid Glands, Granulomas-arms, some joint pain & fatigue; Started MP 1-06;Phase 2 03-06 Phase 3 07/06 NO MORE Eye Drops! Have not been on Protocol for several years (Sept 2011)
Leesa
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 Posted: Tue Dec 13th, 2005 17:55

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Could all of the changes that I have made so far be causing me to not feel as good as I did before making the changes (just a few weeks ago)? The changes I have made consist of: lowering the methotrexate from 15mg to 10mg over the last month-and skipping one week all together, wearing my NoIRs outside, all my windows are covered and my inside lights are dim, I am limiting my vitamin D foods, and am off all my supplements and am not running anymore. Two weeks ago my doc told me that I had Uviuts again, I have been using 4 drops a day of Predforte and I do not feel as good as I think I should by now (my recovery does not feel as fast). ALSO...My eyes are VERY light sensitive and do not very feel good over all, I sometimes have kinda hot flashes and/or feel light headed and a  bit nauseous. I also feel VERY confused like I can not concentrate; brain fog and am tired really early at night. My eyes, head and brain feel just miserable.

I just do not feel myself? What do you think? What should I do, I have my family vacation coming up and sure do not want to feel like this. BUT, I am not sure if I want to take anything that could interfere in my starting the MP January 9th. Any recommendations?

Leesa


Last edited on Tue Dec 13th, 2005 21:20 by Leesa



____________________
Sarcoidosis(12-04 biopsy):Uvitus-eyes, Swollen- Parotid Glands, Granulomas-arms, some joint pain & fatigue; Started MP 1-06;Phase 2 03-06 Phase 3 07/06 NO MORE Eye Drops! Have not been on Protocol for several years (Sept 2011)
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 Posted: Tue Dec 13th, 2005 21:21

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Leesa,

The reduction in sunlight will cause a reduction in 1,25-D and that triggers a cascade of other hormonal adjustments. Since the body craves homeostasis or stability, when hormones are in flux we don't feel so good.

It sounds like your immune system is beginning to function better just with a reduction in sunlight and ingested Vitamin D. The result is an increase in inflammation due to the Herxheimer reaction.

I know this isn't particularly good timing for your vacation pre-MP. But if your symptoms are tolerable, you can just ride it out knowing that it is the expected effect. Try to maintain the sunlight reduction that you have in place now to avoid increasing your 1,25-D and causing even more symptoms. The following tutorials might be helpful:
THE EFFECT OF SUNLIGHT/DAYLIGHT AND BRIGHT LIGHTS

The effect of light on the brain (amygdalla)

Hang in there,

Meg

Leesa
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 Posted: Tue Dec 13th, 2005 21:32

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Thanks for the info!

I am going to the eye doc tomorrow. If he sees improvement, even if my eyes do NOT feel much better, should I worry a bit less? Because right now I am a bit nervous about my eyes, as you can imagine?

Leesa



____________________
Sarcoidosis(12-04 biopsy):Uvitus-eyes, Swollen- Parotid Glands, Granulomas-arms, some joint pain & fatigue; Started MP 1-06;Phase 2 03-06 Phase 3 07/06 NO MORE Eye Drops! Have not been on Protocol for several years (Sept 2011)
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 Posted: Tue Dec 13th, 2005 22:12

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Leesa,

It's good that you are seeing the eye doc tomorrow. Hopefully, the steroid eye drops have been keeping your eye inflammation down.

Another option that Barb suggested is for you to take minocycline low dose at frequent internals to suppress your immune system until you can start Benicar. That might make you more comfortable. Read over this FAQ and let us know what you think:
Why and when do you recommend taking minocycline frequently?

Best,

Meg

Leesa
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 Posted: Wed Dec 14th, 2005 02:00

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Meg,

Thanks for the info. Yes, I would like to take the minocycline now-for my family vacation-if it will NOT slow down my start date for stating the full protocol. Would I take it with the Methotrexate or discontinue? Would I be able to start it even if I took 10mg of Methotrexate last Sunday? How long would I take it? 100mg twice a day or 100mg every other day? Would it make me "feel" better (like when I took Prednesone?) Would I discontinue before the Benicar?

In my preparation for the protocol, I really did not intend to do anything different until after this vacation, but in getting prepared I guess the small changes actually made me feel worse, which is really good news because it means that I am already responding, which means that when I really start, it will work and I will get better (of course after feeling worse now and then from a Herx, which again is really good news). Did that make sense?

So now what, I leave for the vacation in a week and a half? Please advise and then I will talk to my doctor.

What do I do about sun on the vacation? I was going to go skiing?

Thanks,

Leesa

 



____________________
Sarcoidosis(12-04 biopsy):Uvitus-eyes, Swollen- Parotid Glands, Granulomas-arms, some joint pain & fatigue; Started MP 1-06;Phase 2 03-06 Phase 3 07/06 NO MORE Eye Drops! Have not been on Protocol for several years (Sept 2011)
Aussie Barb
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 Posted: Wed Dec 14th, 2005 02:37

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Leesa

You are showing the effects of cutting the light.. of your body starting to respond to the change of the decreasing 1,25D.. which is, as you say, the good news in that sense..

As you have read re using the frequent mino,  this is a way of suppressing those symptoms, to try to keep you more comfortable..

It wont slow down the start of the MP for you.. no worries about when you took mtx last.. you can stop the mtx and / or begin the mino if / when your Dr says it is ok..

Once you begin the mino you will probably need to take it till / and when you begin the MP and whilever your body is responding to avoiding/ light..

To go into the sun on vacation, after having avoided light may now exacerbate your symptoms as it causes fluctuations in the hormones.. that will be known best by trial and error..  your eyes will be best protected if at all possible and ... >>

Mino has the warning : Avoid prolonged exposure to sunlight or artificial UV light (e.g., tanning beds). Minocycline may increase the sensitivity of the skin to sunlight, and severe burning may result. Wear protective clothing and sunscreen if exposure to the sun is unavoidable. (sunscreen of course doesnt protect you as far as MP goes..  and ketoconazole is only recommended on an as needed basis more for the essential small areas of exposure when someone has to protect to go to work) see How does ketoconazole cream work?

You will not need to discontinue the mino to begin the Benicar when it comes the time to begin the Benicar but you may need to change the dosing and schedule then .. and you will then of course need to discontinue the mtx as previously discussed.

How much mino to take: How much any person needs to feel comfortable is individual.. but if you wish to discuss with your Dr beginning at the lower amount of 25mg twice per day for a start.. to see if that holds you at a comfortable level.. too much per dose or per day will be more uncomfortable...

There are varying combinations that you can try.. virtually any combination of 25mg either Q12H or Q6H, or 50mg either daily or Q12H, or 100mg Daily or twice daily...depending which dose/schedule is most comfortable for you.. While not taking Benicar, to a total of 200mg max per day depending what is necessary .. and that is reduced to total 100mg max per day if taking 40mg Benicar Q6H..

Let us know if you have any questions. all best, Barb ....



____________________
♥Barb♥: Dx Inflammation - Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04-Aug2010| barbliv @ hotmail.com | ABC of MP| Barb's Story|

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