Back on mino

[Jeni]

Hello everyone!

I finally got my brand name mino from Canada. There was a mix-up with my address and I didn't get it for about a month. I wanted to update what is going on with my situation as I have found it extremely helpful to read everyone's posts! Thank you all soooo much for sharing.

I really feel like an idiot for not investigating the stomach and arthritis connection earlier. I just read someone's post about ulcerative colitis and arthritis being connected. I don't know how I miss these things! I think it's really easy to get discouraged when you've had this disease for more than 20 years, and very easy to just give up looking for a cure! Of course I checked into food allergies years ago, but I don't think that I've done enough research about the connection between all those stomach problems and arthritis. I read someone's older post about baking soda and acidosis that was really interesting, and my sister has been bugging me for years to drink apple cider vinegar! I need to check into these further. I have noticed a huge difference since I doubled my probiotics! Thank goodness! I was very bad over Thanksgiving and Christmas, eating tons of wheat and dairy, and I definitely have paid for it! So, I know there is definitely some stomach connection between my arthritis and the food I eat– I just need to do some more research again! And no, I don't have celiac, but I was tested under less than optimal conditions. For instance, the last time I tested borderline, I had only eaten a little bit of bread for a few days before the test. My family doc said that you need to eat it for about 3 weeks to get an accurate result. Oh well, I'll get tested again in a year or so. In the meantime, I will continue avoiding gluten as I can definitely tell when I've had too much! The probiotics really help with the gluten when I do cheat…..? don't know why this is…

Back to the minocycline… I have been taking 50 mg brand-name mino on M,W,F for three weeks now and so far my stomach has been ok. I have been taking it with food to lessen the indigestion I had a couple of months ago. So far the only stomach problems I have been noticing have been when I am undergoing a particularly bad day dealing with my divorce. Luckily it will soon be over! I am quite hopeful that I will be able to tolerate this lower dose. I know I read that some other members take their mino with food-right? I know that it interferes with absorption, but I've got to watch out for my stomach here! Also, I am taking the mino with breakfast or lunch since I am up and about, and not lying down. I was taking it at bedtime before, and 30 minutes of waiting before getting into bed didn't seem to be enough time to prevent severe indigestion. Of course it could have been the higher dose or the fact that it was generic mino. I just don't know!

Anyway, just wanted to let everyone know how it was going since I always find so much wonderful information and insight in other members' posts.

Thanks to you all for sharing!

Jeni

[Davit]

Hi

I'm from Canada and the type of minocin I use is Lederle I believe. Any way it opens in my intestine instead of my stomach and I can take it on an empty stomach. You can tell this type by shaking it. You will hear the little prills rattle. If it is powder and doesn't rattle it isn't this type. Generics do nothing for me but bother my throat and stomach.

[Jeni]

Hi Davit,

My brand is Stiefel and it seems to be powdered. That's interesting about your brand dissolving in the intestines and bypassing the stomach. I'll remember that in case I need to try something else!

Thanks!

Jeni

[judy cash]

Jeni,

 You are right about being able to take it with food. Dr. S in Iowa, told me to take it on an empty stomach,  if it doesn't bother me….but it if bothers me to take it with food. He said he would rather me take it with food and receive less benifit than to have problems and not be able to take it at all.

Judy

[Davit]

Did no one say that its Ok to take it with food if you increase the dose because if you take it with food you only get 80%. Not a big loss for a little comfort. Just don't take it with milk or Calcium and avoid Iron. They bind to it making it less available. Besides if you take Calcium it should be on an empty stomach.

[Jeni]

Hi Judy!

Thanks for confirming that! Sometimes I don't remember exactly what I've read on the boards since you guys post so much great info!

jeni

[Jeni]

Thanks Davit,

I think I'll consider trying 100mg M,W,F in a few weeks since I'm taking it with food. I didn't consider that before.

jeni

[Davit]

Hi Jeni

Ive been trying to find what the half life of Minocyclin is. That would tell me how long it stays in my system. Some people take extra on Friday to get through the weekend. You might not have to increase for the whole week or if your Arthritis isn't bad you might not have to increase at all. You probably noticed that people here take varying doses depending on what works for them. I'm at 50 mg maintenance M,W,F. and have never been able to get lower. I stopped it when I had Staph. and got worse so I obviously still need it.
My biggest heartache is that I didn't start it sooner before I got so much damage.

Davit

[Jeni]

Hi Davit,

I actually tried tetracycline more than 20 years ago but I didn't know enough about it and didn't realize just how much damage I would have 20 years later. I was only 24 at the time and my rheumatologist said go ahead and try it. I remember that he seemed amused at the time. I could kick my self in the rear end for not reading the book more thoroughly!!!! I just didn't realize how bad things would get, and of course I trusted my doctors more than some wacko book! I think I took the tetracycline for a couple of weeks and when nothing happened I gave up!!!! Now that I am wiser (I hope!) I am trying this approach again, but much more sincerely! I am really sad that my feet were so damaged that I have a really hard time finding shoes that are comfy. I know it's silly, but I want to still wear pretty shoes! Also, I don't know how much damage I did to my knuckles at karate. I was so sure that punching those bags wouldn't do any damage, but who knows.

I am still on Enbrel and won't try to wean myself off for a couple of months. When I do, I am going to go very slowly. I am hoping and praying that the mino will work! When I start weaning myself off, I'll have to remember what you said about taking a little more mino on Fridays.

Jeni

[Davit]

Hi Jeni

I wonder how many other people share the same story. I just gave away my ski's because my ankles are so displaced to the inside that the ski's tip. My feet are two sizes larger now. I destroyed my knees with cortisone shots, so now they are artificial. My hands are nearly useless but some of that is 14 years of working with a chain saw in the bush. I too tried tetracycline 20 or so years ago and my doctor was gung ho, but she didn't know the protocol so thought that if some was good then more would be better. I got so sick and then she moved before we could figure it out. Next came the Methotrexate which I thought was terrific till It stopped working, so my Rheumy added Sulfasalazine but that gave me hallucinations. By then I was so crippled I was looking at spending the rest of My life in a wheel chair. When I stopped the methotrexate I thought I would die. Every joint ached and I could barely walk. The only time I have hurt worse is when I got staph in my spine. BUT! Within two weeks I could see a change. I kept a journal and some colour coded charts. I started juggling the dose and could see week from week what worked. This is where I had a few weeks with an odd day with a double dose till I got it down to what was the maximum I could take before I herxed. I also found a few foods that I could no longer have, the main one being corn flour which is in every thing. And the other major was Aspartame. Aspartame will put me almost immobile in about an hour or less. I no longer eat in restaurants and have got tired of explaining to my friends why I can't. It's not worth the gamble. This is a bit long winded but the point I'm trying to get across is that for those people thinking they don't want to do the antibiotics because look at me now. Well yes I may be a bent and twisted shadow of the man I was but I'm still here and I can still walk and all the pain and damage is due to taking conventional medication for too long. Two years ago I built a very large shop and greenhouse by my self and every thing was going about as good as it could for a 57 year old. I put a 7 foot fence around my garden to keep the deer out. Life was good again.
But I had to go and fall off a tractor and break my femur. (leg). That healed but I got staph in it and it moved to my spine where it did some nerve damage. But the arthritis is not getting any worse. I'm slow but I'm still mobile which is something I wouldn't be without AP. I have a friend trying to do antibiotics and Methotrexate together. It doesn't work. She is going to be bed ridden pretty soon and I would imagine not live long after that. If you have to take a DMARD for a while still the Minocin starts to work do it but I would not recommend trying the two together for any amount of time.

Davit.

[Jeni]

Wow! You have certainly gone through a lot! I am really hoping the mino works. I am fortunate in that my damage isn't too bad. I will definitely do everything I can to get off the Enbrel!

Thanks!

Jeni

[Eva Holloway]

Jeni,

you can request the Lederle when you order again. Since you wil be calling for your refill make sure you tell them you would like the Lederle, that's what I did. I am glad you are on ther Minoxin, I could tell the difference when I changed from minocylin to Minoxin.

Wishing you a good year and the best of health.

Eva:D  

Eva Holloway

[JBJBJB]

[user=236]Eva Holloway[/user] wrote:

Jeni,

you can request the Lederle when you order again. Since you wil be calling for your refill make sure you tell them you would like the Lederle, that's what I did. I am glad you are on ther Minoxin, I could tell the difference when I changed from minocylin to Minoxin.

Wishing you a good year and the best of health.

Eva:D  

Eva,

Does the insurance cover the cost when order from Canada?

[Eva Holloway]

JB,

no I have to pay this out of my own pocket ( 165.00 Dollars) since Medicare only pays for the generic stuff. The same is with LDN  (115.00 Dollars) since it has to be compounded I have to pay for that also. It is for a three months supply for both respective/ Medicare would pay for Naltrexone pills if I had to take the large dose every day, but they will not pay for the compounding down from 100 mg a day to 4.5 mg a day. We manage because I know I need it,  they send 100 capsules, it lasts me more than 3 months since I take 1 pill MWF only. I also take Biaxin TuThSa.

Eva:D

Eva Holloway

[Davit]

I'm afraid that I to have to pay because it is not generic but I think that I pay less than that but I would pay twice that just for the benefit. At least I don't have to pay to see the doctor for the prescriptions. In fact since I am on a disability pension I don't pay for operations or hospital stays either. A small perk for living here in the frozen north. (joke only, it's not that cold here.) May I wish every one here a Happy New Year and I hope this is the year we all get better.

Sorry for mentioning a brand name but I think in my case it is better. I also had trouble with the Generic which isn't all that much cheaper. I have a friend using the Generic but he takes twice as much so where is the saving?

Davit.

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