dilemna | Arthritis Information

I'm a newby -- this is my first post, but I really need advice. I've been taking methotrexate for seven years. Now my RD says my liver enzymes are too high and I have to stop taking it. I'm also on Pred, Paquenil, mobic and flaring badly. All of the biologics are out because of infection risk. I have asthma and a history of brochitus and pleurisy. Oh yeh, I'm also diabetic and can't have high doses of pred.! RD says I need a liver biopsy to determine cause of high enzymes. Gastro guy says its extremely dangerous, and to find something else to take in meths place

Has anybody else out there been caught in this kind of mess? What to do, what to do, what to do!!!???

Hi Inky and welcome to AI. Glad you found us, but sorry that you have to be here. You came to the right place. Is there a way to maybe not be on such a high dose of mtx? Or is your dr saying absolulty no to it? Now im not sure but are you able to take remicade? I dont remember if it is in the same class as Humira and Enbrel. What about sulfasalazine? When I was first dxd they put me on that and plaquanil and initially it helped, maybe that is an option? Feel free to ask any questions you may have, someone is always on and someone is bound to be able to help you out.

~Shannon~

I have not been through this, but wanted to wish you a welcome. I am sorry to hear that you are struggling with so much. Keep posting and let us know how you are. Love, JuliahI haven't been in that situation personally, but I've read testimonials from
many people who have. There IS another alternative your doctor may not
have told you about, and it's called Antibiotic Protocol Therapy. This is
not a quackery, alternative therapy. It has been in use by some doctors
since the 1950's and was pioneered by an accomplished arthritis
researcher and doctor, Dr. McPherson Brown. There are over 10,000 files
at the Arthritis Institute of Washington DC which chronicle his
successes. Unfortunately, due to various political and other reasons, there
has been an 4 decade long institutionalised rejection of this clinically
proven therapy by the medical world in general, but as more and more
research validates Dr Brown's findings, this is slowly changing.

AP uses Minocycline, and approved DMARD by the American College of
Rheumatology, to control and sometimes even reverse RA (as an added
bonus, many people report it also helps their asthma!) Many people on
this board are using it with varying degrees of success. You can learn
about AP therapy by reading "The New Arthritis Breakthrough" by Henry
Scammell (probably available at your local library) and visiting the Road
Back Foundation at www.roadback.org. Also, some people on this board
are very knowlegable about this option, such as Pip!, Karin, me a bit, and
others. It's generally considered to be more effective when you take the
time to research the therapy and how it works.

I hope this information helps you. It sounds like you're in a scary place
and you need to know there are still options.

The Road BackAnd also look into taking fish oil supplements. It has helped me tremendously!!! Be sure to talk with your physicians about it before using it; fish oil can affect blood sugar levels - it could change the amount of medication and/or insulin you need to take for your diabetes.

Welcome, and hang in there!

Hey Inky;

I'm on AP too and it saved my life. Right now your biggest concern is the liver enzymes. I had 3 elevated LFT's in a row prior to starting AP and was terrified they'd take me off Minocin because sometime the LTF's spike as we're processing toxins. When are they talking about doing the biopsy?

There is a lot of reseach linking Milk Thistle to helping the liver flush out and process toxins. I think that made a major difference in how my LFT's returned to normal within 2 1/2 months of starting AP. You can get it anywhere - I got mine at WalMart.

Another thing I think you should do is the whole/lemon drink. It was developed for AIDS patients and works to help the liver flush. I know for a fact it worked on me because my husband MADE me drink it (I HATE LEMON) because it really cut my herxes enough so that even he noticed it. APer's herx (mini flare) as we get better so....I have no doubt it should help you now with the flaring and the LFT's.

1 whole lemon rind, pips and all in a blender
1 cup water
1 Tbs cold pressed olive oil
couple Tbs's concentrated frozen OJ ( I used Cherry)
Stevia for sweetness (OK, I admit, I used Splenda) Blend, Strain (it's messy)
Add 1 heaping Tbs lecithin to reverse neuropathy

Hope this helps,

Pip

Inky, hello and welcome to AI. I don't have anything to add except I'd talk to your RD about AP therapy. Have you been on Arava? Or isn't it an option for you? Keep us posted on your progress. LindyI just want to pipe in again regarding the liver drink (good work, Pip---I feel
kind of "duh" for not mentioning it). The really important ingredients are the
lemon and olive oil, and i just make mine with one whole lemon, olive oil
and water. I find it quite tangy, frothy, and delicious! The OJ and other stuff
some people just add in to make it more palatable (except lecithin---I don't
know anything about that one). Use a fine metal sieve to strain it and press
out the liquid with a rubber spatula. Once I used a not as fine sieve and the
texture was somewhat offputting. I just wanted to simplify in case you didn't
feel up to ingredient shopping just yet.

I use it when I'm not doing as well and it really does work.Gimpy-a-gogo39311.4531365741Wow - I completely forgot about milk thistle! Thanks for bringing it up! While more stringent studies are needed (to determine efficacy, optimal dosing, etc), it certainly seems to be a cheap and effective treatment for liver ailments. It's widely used in Europe to treat alcoholic cirrhosis of the liver and other liver diseases.

The lecitin reverses neuropathy. She said diabetes so...

I had neuropathy in the beginning so since that's now gone...

Thanks,

Pip

Inky while I haven't needed it personally I knowof others who have taken milk thistle to help control their liver enzymes. It has helped them stay on medicationWelcome to the board. Hi Inky, I too, welcome you to the board. Everyone has given you great
advice. One thing I would like to add is I noted you are diabetic. Make sure
you keep your diabetes under extreme control as this in itself can cause
systemic inflammation and make it harder for you to keep your RA in
control. Make sure your doctor is ordering glycosolated hemoglobins so
that you can keep it in check. I only take plaquanil so don't have much
experience with the rest of them. Good luck and keep us posted.

Wow! Your response is wonderful! I've been on minocine for at least five years (low dose) for skin problems (lichen planus, rosacea and a little bit of psoriasis) and just this summer had to stop it because of reaction! I tell you folks, I'm a mess!

I notice that some of you have "senior member" under your names. I'm 70, so I guess that qualifies me as "senior" But I refuse to give in to this stuff.

I'm an artist (do colored pencil portraits), love to crochet and knit, and am into beading (its addicting!) My hands are giving me trouble and that scares me!

Thank you so much for your replies and helpful information. Years ago I was into a RA message board and it was so helpful I thought I'd get in touch again. You guys just jumped right on it - you're great! It helps to know some of you have been where I am and have found things that help.

Inky, I'm an artist also, oils, colored pencils and pens, collage, and I design and make jewelry, silversmith, and bead. You're so right beading is addictive. There are a lot of us on the forum who make jewelry and bead. Keep those hands moving, girl and never give in. Lindy

Hey Inky -

Were you on Mino and the other meds at the same time? What kind of reaction?

Pip

Pip,

How much and how often are you suppose to drink the Lemon drink?

Marybeth

I'm not Pip but I know you're supposed to drink one lemon olive oil drink a
day, if possible, for as long as symptoms last.

Hello & welcome to AI

As you can already see...we have a great bunch here.

Peace & Love...Neasy

GoGo and Marybeth -

I know I stopped taking it when the flares went away but I'm wondering now if that was such a good idea. Here's my thinking.

The liver is an incredibly versitile organ - the only organ in the body that can regenerate. Regeneration is in the mechanism that measures the amount of circulating bile you have. When a liver is diseased or overwhelmed there is a point where the body says 'whoa, need more liver' and makes the liver larger...so...now you have a larger liver thats trying to process more bad things. IMHO the problem happens when liver also turns 'fatty'. Diet??? Who knows. But now you have an enlarged, fatty liver. That can't be good.

Another worry I have is the 'cascade effect' of these diseases. Everybody says it's part of auto-immune but I've never heard of anybody on Mino getting another disease. No, let me correct that, I've heard of people with more MTCD showing more defined symptoms when starting AP which then lessen and go away on the therapy and I've heard of one guy on the advanced MP who says he got gout from the benicar - but how do you get a disease that messes with uric acid levels from a med? I didn't look into it but again it goes along with my theory that MIL on Mino (which goes away when you stop Mino) is not an allergic reaction but a 'herx'. Not that anybody is likely to continue to work thru that kind of a herx (I would).

So, IMO 'weakening' a already weakened liver with the potential of another AI disease is a recipe for disaster.

On the RB I noticed that people really flaring were taking the whole lemon drink twice a day because it was mentioned that you can't make a large batch and save it for later as it it gets really bitter when it sits. I can attest to that really bitter thing.

I'm just thinking out loud - but if somebody is on the traditionals and/or AP - until they really reduce their med loads (think Joonies poll) then the Whole Lemon drink can only help.

It's not like mainstream meds ever warns us 'Stay away from too much lemon and God, forbid, don't use Olive Oil".

Pip