Antibiotics for the treatment of RA | Arthritis Information

Hi all, I was recently put on minocycline for the treatment of my RA. I am also on Enbrel, so I do realize I am not strictly on Antibiotic Protocol (AP). I am using mino as a DMARD as I was having gross allergic reactions to MTX, and so far, it has been working. I do not know much about the use of antibiotics and I do realize there can be major problems with the long term use of them (which I am hoping to avoid!). I am hoping by posting here I can get some imput from the community, as well as find others who may be using antibiotics alone or in combination with other drugs.

I am taking minocycline 100mg 2x daily, Enbrel, 4,500 total epa/dha fish oil, probiotic, trazadone for sleep, low dose naltrexone, luten for my eyes, biotin for my hair and nails, calcium w/d, additional vit. D (I have low levels) and a multivitimin. I take nothing without my doctor's imput and advice.

Things really began to be rough for me last fall. I was having horrible allergic reactions to something and my drug protocol of Enbrel and MTX were not working. I was beginning to get pleural effusion on my left lung with RA nodules (my good lung) and some of both on my right. My RD switch me from Enbrel to Humira in Nov., but I got a bad case of pneumonia and had to go off all meds until Jan. When I went back on my meds, I began to have the same allergic reactions, amplified! It had to be the MTX, so off I went. Yep, I got better as far as the allergy went, but oh brother! Did I ever begin to realize just what that MTX did for me!!! The Humira was just not enough on its own to keep the inflammation in check. I was in so much pain. I spoke with my RD about other treatments; Orencia - no, because I had prior lung issues. Remicade - didn't feel it would help much due to the Enbrel and the Humira not doing well. Rituxan - she felt would not hold things at bay for me. No sulfer, allergies and no plaq, prior liver issues. We then discussed adding the fish oil and the minocycline as DMARDs and she said we could try.

I have been on this protocol for 5 weeks now and am just beginning to see relief. I have not (knock on wood) had any problems so far. I take the probiotic, florastar, 1x daily and eat a really good yogert. I hope this is enough to keep the yeasties at bay! I am sure I am leaving things unsaid, but hopefully, you all get the gist.

Anyone else on AP or a combo there of? If you are, will you share your tips with me? Do you take anything else as a preventative? How are your labs?

I hope someone else will share any info they may have.

Waddie

eta; There is more of my history and good information on the thread "Combination Therapy for Rheumatoid Arthritis".
waddie2009-05-31 13:04:17

I'm so happy you started a new thread Waddie go Waddie!! I'm glad that you've made this selection.... I'll be watching your progress and wishing for the best!!Waddie,

Thanks for starting this thread. I am considering adding ABX to my protocol but for different reasons. I consistently have bronchitis when on any type of DMARD. In fact, I am on abx right now. My RD has suggested it several times, so I might add that to my regimen. Keep us posted on your progress!

Phats

I may still add ABX, no final decisions have been made but it will be in conjunction with other dmard/s. Am really interested in your journey, Waddie and how you progress. Thanks for your voice. LindyQuestion: with a biologic, I find the need every couple of months to take an antibiotic for infection......

taking one every day would that be preventative? and reduce the infections?

or would that be setting us up for bacterial resistance?

Phats,

My mother was put on a "preventive" antibiotic program three times a week last year by her doctor to keep her from getting bronchial infections and so far so good! I believe it is not Mino but instead a cillen drug.

Waddie,

I was taking Plaquenil and Mino together originally, but now am just on Mino. I had no bad effects with the Plaq but was so scared because I have such bad vision to start with that I got off it after the Mino helped me. My doc had wanted me to start Enbrel with the Mino but changed his mind after the Mino had good results.

Babs,

That is my primary concern with this line of attack.

[QUOTE=babs10]Question: with a biologic, I find the need every couple of months to take an antibiotic for infection......

taking one every day would that be preventative? and reduce the infections?

or would that be setting us up for bacterial resistance?

[/QUOTE] From a wholly personal perspective, long-term antibiotic therapy, whether AP or in combination with other DMARDS requires the same kind of weights and balances as the consideration of any other treatment for RA: a rational consideration of the potential side effects of treatment. Do the benefits outweigh the risks? What steps can be taken to minimize or avoid side effects? What treatments are available to counter possible side effects?

There are two difficulties, as I see it, that have not been adequately addressed with respect to “pure” AP, 1.) a common, identifiable, organism found throughout the RA population 2.) a large, properly randomized, multi-staged double-blind study to determine both efficacy and risks of long term antibiotic therapy.

Knowing that I have not answered the questions re: antibiotic resistance, I will continue to skirt the issue by saying that of course there is a risk, however the tetracycline class of drugs have been used long-term for many years to treat acne and UTI without a marked increase in antibiotic resistance.

An in-depth discussion with your physician, and maybe even your pharmacist, is the place to begin harvesting answers to the questions re: resistance and prevention.

From personal experience, the most annoying, and persistent, side-effect was yeast infections that were not prevented by dietary changes and probiotic ingestion.

It is my considered, albeit completely personal opinion, that if I would have aggressively treated my RA to get it under control and then added antibiotic therapy I would eventually have been able to either reduce or eliminate all but pulsing antibiotic therapy for maintenance. As always, hindsight is better than foresight.

To discussion, yeah! Shug well, I think you did address to a point.. w/ the acne use long term. Are there any studies on that aspect of antibiotic usage and long term affects? I am not familiar.. but will try to research when I have a moment.

Thanks, Shug!

Here's a little background. I have more, but I'm off to do some retail therapy for the wedding. I'll check in later

http://www.npr.org/templates/story/story.php?storyId=5162937

http://www.redorbit.com/news/display?id=244974&source=r_heal%20th

http://www.sciencedaily.com/releases/2001/05/010524061717.htm

http://www.msnbc.msn.com/id/30143726/

http://cme.medscape.com/viewarticle/702214

[QUOTE=Lynn49]http://www.npr.org/templates/story/story.php?storyId=5162937[/quote]

Having briefly skimmed each of the articles, what lingers in my mind is this quote from the above link:
[quote]"There's a belief that some of these antibiotics may actually alter your immune system," says Margolis, "and this slight alteration could be the reason that somebody develops the upper respiratory tract infections we saw."

Sorting this out will require much more research, says James Del Rosso, professor of dermatology at the University of Nevada.

"That study is far from being definitive in terms of telling us what we need to do," says Del Rosso, and whether antibiotic use can lead to immune system changes. The study and the body of evidence, however, on antibiotic resistance can be viewed as caution flags, says Del Rosso.[/quote]

It is, at least to my admittedly skewed perspective, the alteration of the immune system that plays into antibiotic therapy in RA treatment.

I don't think the tetracycline drugs would work as a preventative for infection. I do know that the tetracycline class of antibiotics aren't a bacteriacide, they are a bacteriastat(spelling). They interfere with the proteins that the mycoplasma need to live, thereby reducing the number of mycoplasma. They also modulate the T cells of the immune system. Since perfectly healthy people have also been found to have mycoplasma in their joints, I'm thinking maybe its the immune modulation that works. Does anyone really know? I don't think so. There are several DMARDs that they don't really know how they work. Anyway, just putting my two cents worth in. Good discussion.

[QUOTE=panda]...tetracycline class of antibiotics aren't a bacteriacide, they are a bacteriastat(spelling). [/QUOTE]

Perhaps a simplistic minimalsist's definition would be helpful, or not!

Bacteriacide=any chemical agent that destroys bacteria

Bacteriostatic=an agent that inhibition of the growth of bacteria

Waddie, I have been using AP and Plaquenil for getting close to 2 years now. When my RA first appeard in February '07, it attacked my shoulders, and I couldn't raise or really use my arms. I was so tired and sore I could barely turn over in bed.

I see a rheumatologist and a physiatrist (an integrative medicine ACAM physician) who have both helped me. The rheumatologist has cut my plaquenil from 400 mg/day -- down to 300, 200, and now 100 mg/day. When I saw her a few weeks ago she said she thought I could go down another step -- just take a couple of pills on the weekend (400 mg/week!). I pulse dose minocycline MWF, just once a day.

I am doing really well. I work full time at a busy, high stress job -- shop and cook and exercise. I am back to my old self -- not 100% -- I tire more easily. And not every body part works perfectly. But even my family forgets I have RA. I am very, very grateful to have this life back. My RH factor has come during this time by close to 50%. One other marker has moved into the normal range. And my SSA-A, while still very high, has also declined. It's very encouraging, andnot something she sees on plaquenil alone.

I am very diligent about supplements -- fish oil and probiotics and MSM and multivitamins and vitamin C and DHEA, etc. I had a prescription for Celebrex in the beginning, but I almost never use any NSAID or painkiller anymore. And I eat a very healthy diet -- rich in fruits and vegetables, lean protein and such -- little alchohol, treats on occasion. It's worth it. Good luck to you.

thanks panda and Shug....

Interesting Bonnie Lou... hope you continue to improve.

Shug, Good job!. Wasn't sure how to phrase it. Grrrrr, had a nice long response and hit the wrong
Thank-you all for your responses! It was heartening to come home today and find them! I worry most about antibiotic resistant infection and, after reading the articles Lynn posted, it seems a valid worry. I guess that is just a wait and see thing for me now, no? Seems the articles suggest the most common being an upper respiratory infection, something that I am already vulnerable to. No point in worrying though... que sera sera... on with the program. My other big worry is exactly what Shug had problems with - (dun-dun-daaaaaa) yeast infections! I read somewhere (maybe on the other thread) I should be taking 2x the amount of probiotic supplement I am currently taking. (Wish that was covered by my insurance ) Probiotics are the only thing I have added without the permission of my RD. I just did not think to ask her about it but it made sense to me to take them and I didn't think it would hurt. I may up them if I feel "yeasty" before I see her. Shug, what kind did you take? I take florastar.

Bonnie, Panda did you have problems with this? I, like Paula, eat very healthy. No preservatives, little sugar (though I did binge on sugar Sunday night! ) tiny amounts of red meat, mostly fish and chicken, lots of fruits and veggies, whole grains and green and white teas. I agree, the diet helps my over all well being. I have recently cut gluten from my diet and that has made a difference in bloating and other tummy issues. Bonnie, I always did take fish oil, but it was JasmineRain who turned me onto the benefits as an anti-inflammatory! I discussed the subject with my RD and we came up with a daily dose. I am starting to smell like a fish!Paula, it would be wonderful to be where you are!!! Good job and I hope you are able to maintain!

Panda, are you able to keep your RA controled on your current protocol? Did the mino cause side effects as well or was it the mtx and Arava? I couldn't take Arava because of severe abdominal pain and the mtx caused nodules and rashes. I would LOVE to be able to do without the biologic all together, but I will be happy to continue to feel good and I hope my labs will prove things are under control.

What, exactly, is the lemon/olive oil drink for? Is it necessary?

Thank-you all for your responses and your support. Lynn, thank-you for the articles!
Shoot! I meant to update! My eyes are still inflamed! He has me scheduled to come back in one month and if things are no better, he will put plugs in to see if that helps with the dry eye. Mean while, more steroid drops and Restasis. Bad news there and the Cardiologist is not happy with what he hears. May not be doing as well as I think, shoot again! Anyway, I go for doppler and echocardiogram (don't really know if that is all one word!) and a 24 hour monitor thing on Mon. next.

Shoot!
[QUOTE=waddie]Shoot! I meant to update! My eyes are still inflamed! He has me scheduled to come back in one month and if things are no better, he will put plugs in to see if that helps with the dry eye. Mean while, more steroid drops and Restasis. Bad news there and the Cardiologist is not happy with what he hears. May not be doing as well as I think, shoot again! Anyway, I go for doppler and echocardiogram (don't really know if that is all one word!) and a 24 hour monitor thing on Mon. next.

Shoot!
[/QUOTE]

Hang in there, waddie.. I've had the plugs and popped them both out within a month... not good, but what can I do??

Did the Opthamologist also say to use Sustane in between Restasis and steroid drops? You must be sure to do all of them at least 15 minutes apart so that you don't wash one away with another.... also, if you refrigerate the Restasis, it feels better going in. Good luck w/ that.. My eyes have been such a bother this last year

I have no knowledge about the heart issues... I wish you the best with all that... sorry you have to worry about it.

Hi Waddie,
Nope, never had a yeast infection. Been on probiotics for about 15 years and have never had a yeast infection in that time. Minocycline helped me alot, but not enough(I kept getting bad headaches and had a feeling of pressure in my head), kept taking it and added sulfasalazine
About three months after adding sulfasalazine I started feeling almost normal-joint wise- for the first time in three years, but just couldn't take the headaches anymore so I stopped taking it. Needless to say, the headaches eventually went away.....but now have a significant amount of pain and swelling in most joints. Doc put me on prednisone last week and am feeling so much better. Suppose to discuss starting a biologic in two weeks. Thats where I'm at now. As for the lemon drink, it never seemed to do anything for me but make me nauseaus, but its worth a try.
[QUOTE=waddie] Shug, what kind did you take? I take florastar.[/quote]
Whatever brand has the latest expiration date...I just checked the last I bought was Quantum Probiotic Complex when I was taking antibiotics for cellulitis
[quote]... eat very healthy.[/quote]
Our menu would fall in the Mediterranean category. I cannot even remember the last time I ate red meat or refined sugar.

Like Lindy, adding antibiotics to my combination therapy is still a possibility.

Waddie, please keep us updated about the cardiac and eye issues.

RE: olive oil and lemon. I faithfully ground up a whole lemon whizzed it in the blender with olive oil and a splash of filtered water and drank it down, but frankly did not find it especially beneficial, however with a grind of black pepper, a few crystals of sea salt and a modicum of fresh herbs it makes a good salad dressing.
Waddie, I have not had problems with yeast -- but I am very proactive in prevention. I take very strong (and expensive) probiotics. My doctor tests me for yeast periodically. Because he was concerned about leaky gut, I had blood allergy testing done (also expensive, and not generally covered by insurance). I discovered I did have inflammatory reactions to a number of food items that I thought were good for me -- including milk, almonds and navy beans. I have altered my diet to avoid these substances. If you can afford it and are open to it, you might find that testing helpful.

Each day is an adventure. It's hard not to attribute every new ache or pain to either the RA or the treatments. I hope your heart and vision problems are resolved. My husband is an ophthamologist, and he treats a lot of RA/Sjogrens patients. Most cases are manageable.

Take care.

[QUOTE=Spelunker] RE: olive oil and lemon. I faithfully ground up a whole lemon whizzed it in the blender with olive oil and a splash of filtered water and drank it down, but frankly did not find it especially beneficial, however with a grind of black pepper, a few crystals of sea salt and a modicum of fresh herbs it makes a good salad dressing.
[/QUOTE]

that was funny, Shug,

but seriously, I have a gentleman in my office who is from Lebanon... he puts LEMON in everything.. every soup he eats... every salad dressing.... sprinkles into his tea..... He thinks that lemon is the best thing for whatever ails you!!!

Waddie-

Good luck. THis seems like a great discussion.

Thanks Paula and Bonnie Lou for your contributions.

Waddie,

Sorry to read about the problems you are having with your eyes and your heart

I'll be keeping you in my prayers [QUOTE=waddie]I really like my eye doctor, he is very confidant he can help me. That whole eye plug thing sounds scary, but he says his wife is a big chicken when it comes to anything being done to her eyes and she had to have it done. He said she felt no discomfort. (But he would say that, right? [/QUOTE]

having the plugs placed in my eyes by my Opth was a cake walk! Seriously, NO discomfort what so ever! Someone (could be JSNM?) had theirs cauterized, I don't think I'm interested in that. One plug fell out the first month.. and the second sometime in the next 3 months...

Sustane and Optiva..I use both interchangeably.. Both have little or no preservative... which is drying.

I am the same way w/ my enbrel shots.. the day before usually brings me a bit more inflammation... day of (if in a.m.) or day after (if taken at night) brings me right back to feeling good.

Waddie, I'm basically on the Med. diet and I don't eat ANY sugar. When I do eat sugar I have joint pain. I've never had swollen, red joints with my RA. Just swollen and painful. I had sugar a week ago = a very sweet dessert. The next 3 days my fingers and wrist were painful and swollen. Sugar really can affect me. Take care, Lindy

Lyn, I'm convinenced that my diet plays a role in my swelling too. I know I should eat better and I would feel better *for many reasons*. I should keep a diary and that would be very telling.

[QUOTE=LinB]Waddie, I'm basically on the Med. diet and I don't eat ANY sugar. When I do eat sugar I have joint pain. I've never had swollen, red joints with my RA. Just swollen and painful. I had sugar a week ago = a very sweet dessert. The next 3 days my fingers and wrist were painful and swollen. Sugar really can affect me. Take care, Lindy[/QUOTE]

RE: olive oil and lemon drink:
[QUOTE=waddie]... I did a search of the forum and still do not understand exactly what it does...[/quote]

The drink is touted by its proponents as a detoxifier. A search on http://www.keephopealive.org/ will provide some information.

This is what I understand about the drink:

Citrus fruits (like other fruits) contain pectin. The best source of citrus pectin in found in the area between the pith and the rind. “Modified Citrus Pectin” is, or at least was, sold as a supplement making various claims regarding its supposed benefits. There are few, and those few are not very well-documented studies, that indicate citrus pectin might be helpful in maintaining and increasing the function of the human pancreas.

Thus, the recommendation for the whole lemon, skin, pips, pith, and all. There is some evidence the fresh citrus pectin can balance blood glucose levels, stimulate the venous and lymphatic system, and act as an ‘aide’ in that part of digestion that takes place in the stomach. The fatty acids in olive oil, so says the theory, protects the stomach lining from the vitamin C, and lubricates the bowels for better elimination of toxins.
[QUOTE=waddie]I keep reminding myself, I just started to feel better a little over a week ago. Maybe I just need more time for the meds to work or maybe there is another something I can add.[/quote]
From my perspective treating RA and its "concomitants" can be compared to a very long freight train: it takes more than a few moments to get the train up to speed and more than an instant to stop the train and uncouple the cars that hold organ involvement, ocular involvement, and all the others cons that need to be put on the siding.

Someone told me that if nothing else RA will teach me patience. I am beginning to see the wisdom in that counsel.

Cheers!!
Thanks Shug for the info. I sure don't need anything for the bowels at this point
Patience! Something, I think, that every mom tries to teach their child from early on. RA surely is a lesson in patience. You are a gem Shug!

Lindy, I know you are right on about the sugar. I usually do not eat sugar at all, though I do occasionally use Agave nectar in my tea. I am slapping my hands for indulging like a child on Halloween! I knew better! Phats has the right of it with a food diary, and in my assessments I occasionally make food notations. I know I have other food sensitivity issues as I can tie food to my migraines and rashes! I am a mess!!!! Waddie-

I wish you well with the Antibiotic Protocol but without the help of people who have been successful with AP, it may be difficult. Wil see.

Waddie, You're doing very well to date with the meds that you and your doctor decided was the best for your situation. Jan has been successful with AP and I'm sure that she'll help you when you need the help of someone who is taking AP. She's an active member of the forum and has quite a lot of AP information and experience. There's also other people on the forum who are on AP, they may not be as active or vocal as some of the other APers but they'll be there if you need them. You can also post on the Roadback forum, they'll help you out, won't they?

I've always said that the most important thing that RA taught me is patience. I had none prior to RA and it was a long, hard road of learning for me.

Lindy

Lindy and Jan, thank-you for your support. Jan, I was hoping you would be able to share some of your experiences with AP with me. It seems to be working well for you and you seem to have little trouble from your RA. I would hope if you have any tips on how to avoid any pitfalls, you would share with me and others thinking about AP. There is much to be said for personal experiences. I have received great support from Panda, Paula and Bonnie! I am grateful in immeasurable ways for this support! Thank-you ladies!

Lindy, you sure have the right of it, patience! Seems we are always waiting with this disease in one way or another. I have now added the mental image of the freight train Shug talked about in my mind, slow to start and stop. It helps in thinking this way when dealing with the drugs, the time frame in which they work and my patience for it all. The mental stress is what I feel like I am fighting at present.

The best I can do right now is to handle one thing at a time, first the cardiac and then the lung issues. One piece at a time, like a big jigsaw puzzle in my mind, finding and fitting the pieces together to solve the whole. Patience.

My mom had her results of the liver biopsy yesterday. It is a good news/bad news thing, good; no cirrhosis yet, though there is extensive scarring. Bad news, Lupus has become active again. I did not even think of Lupus, it has been 4 years since she had the lung episode and she has not seen the RD in 2 years (she refuses to go saying it was a waste of time! You hang in there Waddie

I'm sorry to read that your mom's Lupus is active again....Hopefully the med will work quickly.

I'm glad to read that your joint pain is so much better. It sounds like the combo therapy is working well

You take care and keep posting about your success. It's so good to read positive stories!

Lynn

[QUOTE]I wish you well with the Antibiotic Protocol but without the help of people who have been successful with AP, it may be difficult. Wil see.[/QUOTE]

Is this the clarion call of Cassandra?

Waddie, I can only echo what Lindy and Lynn have said. While it is comforting to have the "help" of folks who have been down the same path, success is not always measured in the same way and right now It certainly looks to me as if you are experiencing success: your combination therapy has succeeded, at least to this point-it has begun to accomplish its intended purpose. And that is certainly one large slice of the successful pie.

I am so sorry you have so much additional stress placed on your shoulders right now. There is not much that can be done, as you well know, except to keep that helmet strapped on tightly and tackle what can be on any given day.

Cheers! Shug
[QUOTE=Jan Lucinda]Waddie- [QUOTE=Henrietta] [QUOTE=Jan Lucinda]Waddie-

I wish you well with the Antibiotic Protocol but without the help of people who have been successful with AP, it may be difficult. Wil see.

[/QUOTE]

AKA "if it doesn't work for you its your own damn fault!!!"
[/QUOTE]

Good luck to you too!!!!

[QUOTE=LinB]

I've always said that the most important thing that RA taught me is patience. I had none

prior to RA and it was a long, hard road of learning for me.

LinB-

Sorry, I am busy and don't have the time for much sharing and support. Maybe there are others who are. Don't know.

Lindy

[/QUOTE] yes Jan we know you only have time for driveby sh!t-stirring and resurecting dead topix [QUOTE=Henrietta]yes Jan we know you only have time for driveby sh!t-stirring and resurecting dead topix [/QUOTE]

Troller Henrietta-

How sweet!!!

[QUOTE=Henrietta]yes Jan we know you only have time for driveby sh!t-stirring and resurecting dead topix [/QUOTE]

Yeah you have definately got that right!

Waddie I am glad to hear you are doing so well and there are many of us here that will support you. You do not need the support of a person that is on AP in order to succeed!

[QUOTE=Dalmatinka][QUOTE=Henrietta]yes Jan we know you only have time for driveby sh!t-stirring and resurecting dead topix [/QUOTE]

Yeah you have definately got that right!

Waddie I am glad to hear you are doing so well and there are many of us here that will support you. You do not need the support of a person that is on AP in order to succeed!

[/QUOTE]

Dalma, friend of troller Henrietta-

How sweet!

[QUOTE=Jan Lucinda]Waddie-

I wish you well with the Antibiotic Protocol but without the help of people who have been successful with AP, it may be difficult. Wil see.

[/QUOTE]

Waddie.. dear.. This is good stuff.. and I am glad to hear of your positives w/ your fight! So sorry about Mom though.. I hope she takes this wake up call and turns her attentions to taking care of herself..

Jan.. there are plenty of people here who can help waddie w/ her choices of meds.. and all are willing to help her find whatever info she should need... AND, she can ask anything we can't all help her with at the Roadback...... all kinds of stuff... right at our fingertips... nothing will be difficult...... guaranteed!! ;)

[QUOTE=Jan Lucinda]Sorry, I am busy and don't have the time for much sharing and support. Maybe there are others who are. Don't know. [/quote]

[QUOTE=babs10][QUOTE=Jan Lucinda]Waddie-

I wish you well with the Antibiotic Protocol but without the help of people who have been successful with AP, it may be difficult. Wil see.

[/QUOTE]

Yes, she can always get information at Road Back but, of course, it is up to her if she wants to go there. It is up to her to find information.

[/QUOTE] Waddie, Researching information and having support available by people who are using the same medications are two very distinctly different issues. We can all research, some more than others but one learns. Support is very different - support is something that is given from the heart and is given freely with no strings attached.

There's intelligent people on the forum who have the resources to find any information that's required to stay on top of the current information regarding treatment and the diseases associated with RA. We'll gladly share our resources, advice and information with anyone on the forum who needs support and we'll do it with heart.

Shug, thanks for posting about the lemon/olive drink. I don't think it will hurt except for causing some stomach issues. Not sure how your stomach mucosa would react to that much citric acid all at once. Would it be possible to make the drink and drink it slowly in small amounts during the day? Would that alter the affects? Guess I need to research. Lindy

[QUOTE=Jan Lucinda][QUOTE=Dalmatinka][QUOTE=Henrietta]yes Jan we know you only have time for driveby sh!t-stirring and resurecting dead topix [/QUOTE]

Yeah you have definately got that right!

Waddie I am glad to hear you are doing so well and there are many of us here that will support you. You do not need the support of a person that is on AP in order to succeed!

[/QUOTE]

Dalma, friend of troller Henrietta-

How sweet!

[/QUOTE]

Nope I do not know Henrietta, just am tired of the games you play. You bring ancient posts up to the top and NEVER offer any support even to people who are on AP because you do not "have time". Yet you have the time to find these old posts. You are definately a pot stirrer!

[QUOTE=Dalmatinka][QUOTE=Jan Lucinda][QUOTE=Dalmatinka][QUOTE=Henrietta]yes Jan we know you only have time for driveby sh!t-stirring and resurecting dead topix [/QUOTE]

Yeah you have definately got that right!

Waddie I am glad to hear you are doing so well and there are many of us here that will support you. You do not need the support of a person that is on AP in order to succeed!

[/QUOTE]

Dalma, friend of troller Henrietta-

How sweet!

It takes two to stir a pot.

[/QUOTE]

[/QUOTE] Waddie, haven't heard from you in the last couple of days. How are you doing? Let's keep this thread going irregardless of any of the less than positive postings. I know there are many of us who are following your progress carefully and are anxious to learn from you. LindyHey Lindy, I feel like a Raggedy Waddie right now! I had all my cardiac test on Mon., and returned the 24 hour heart monitor today. My next appt. with the CD is at the end of the month, unless he sees some major thing from the echo, doppler or 24hr monitor (fingers X'd). I have had some major edema in my right ankle and leg and a little in the left. I hope this is just the joint, it does swell there quite often. But, CD was very interested in this it seemed. My joints are doing pretty well over all. I have a brown spot on my left arm and I know it is from being in the garden! I am pretty careful about sunscreen but sometimes...

I have noticed that one day prior and day of my Enbrel shot, my joints are a little achy. I am going to try the lemon/olive oil drink, it may well be a herx. If not, I will see what else may be available to me. My next RD appt is at the end of July. I get the feeling that if I could just get on top of things, this could work well. I suppose that is the goal for everyone any way. Mean time, my cats still look at me with hunger in there eyes because of the fish oil! You have a right to feel like a raggedy Waddie. What a week. The lemon/olive oil is worth a try. Stress is so much part of this disease and I'm so sorry that your mom is having a Lupus flare. Lupus is even more mysterious than RA. I just hadn't read anything from you in a few days and was getting worried. Sounds like you have it under control!! LindyI feel like the duck swimming in the pond; calm in appearance but swimming like mad under the surface! take it easy, waddie... You need to de-stress (and Mom does too) and relax a little... please.

kick those feet up!! get the swelling down....

(BTW, edema: Isn't that when you push into what looks swollen and it dents?)

Hugs... hang in there waddie.. your great days are coming!!!

I have this visual image of a very serene appearing, well groomed Mother Duck crowned with a highly colourful crash helmet making her way across a wind-ravaged pond getting ready to step upon the railroad tracks to halt the next scheduled freight train. Once she has the train motionless on the siding, she will uncouple the car containing STRESS. You can do it woman, you can!

Babs, not answering for Waddie...edema is swelling of tissue or joints from accumulation of body fluids. Pitting edema is just as you describe it.

A toast to a stress-free day for everyone!

Lindy

Hi Waddie,

I can only wish you every success that you can get your problems under control with your new treatment regime. I say 'under control' meaning that if your new regime eases the symptoms so they are manageable; that to me is some success.

I believe the meaning of Jan's post was - Medication it affects people differently and should you have a question about something it is usually better to ask people taking the same meds as you in order to perhaps get one answer that may fit your situation. In this particular case Apers helping & supporting Apers.

I believe this is an interesting and worthwhile thread and thank you Waddie for starting it!

[QUOTE=waddie]Thanks in the biggest way for that visual! [/QUOTE]
My pleasure! For anyone seeking relief from arthritis and other related inflammatory diseases, "The Arthritis Bible" supplies the latest wisdom on conventional drugs, exercise, physical therapy, diet, vitamins and minerals, traditional herbs, and folk remedies. That is great news Waddie, thanks for sharing it. Any step forward is a blessing, and sometimes we are grateful to just stay still, and not keep getting worse. When will your cardiac testing be complete?

I have had pain in my left foot recently, and thought my RA was getting worse. But the x-rays looked good, in fact my rheumatologist thought the foot looked terrific -- so it must be a soft tissue problem of some sort. I started prolotherapy on the foot a few weeks ago (another alternative medicine treatment that has been helpful for me). This is a slow process so it will be months before I know if it is helping. It's hard to always be so patient.

I am dancing anyway. I start a 6 week 'hip hop' class on July 1 -- so that foot had better hold up! Life is too short to not be dancing....

I love to dance! Well, I mostly am doing good to slow Waltz occasionally now, but I still love it! Hip-Hop is ambitious! I love my podiatrist! He keeps me on my toes! I sure hope your issues are minor... July 1st in not far away.

Speaking of July 1st, that will be the date of the first test, so while you are dancing, I will be on versed! Waddie!! what good news this is (and -we- will take all the good news we can get, eh?!).

The combination of Enbrel and Minocycline must be doing a good job for you if you have be flare-free under all the stress of the last few weeks. YES! Good new, indeed.

[quote] The waiting is killing me! I just want it decided, settled and over![/quote]
Well! aren't you just little Mz Impatient? [QUOTE=bonlucas]Waddie, I have been using AP and Plaquenil for getting close to 2 years now. When my RA first appeard in February '07, it attacked my shoulders, and I couldn't raise or really use my arms. I was so tired and sore I could barely turn over in bed.

[/QUOTE]

Bonnie-

Glad you are doing so well and good luck to Waddie.

Just so everyone is clear on this point.....Waddie is doing combination therapy using both Enbrel and Minocin.....

http://cme.medscape.com/viewarticle/560135

Combining Medications Often Best Strategy To Battle Rheumatoid Arthritis

http://www.medicalnewstoday.com/articles/89168.php

Good luck with whatever it is, Minocin only or combination.This thread has good information on not only the use of antibiotics for RA, but other treatment combinations. Lynn is correct, I am using Enbrel, minocin and fish oil to control my RA.

I have, thus far, had few problems using minocin. I wonder if I must go off the mino prior to the surgery? I know I have to stop the Enbrel and the fish oil about 2 weeks prior to any surgery, but I am not familiar enough with the mino to know about that.

Anyone had any experience with this? I will consult my RD when she clears me for surgery but still, personal experience is nice to know. I don't look forward to being without my meds!

I definitely had to come off all abx 3 wks prior to surgery .. by order of my surgeon. Not forgetting any pain meds or anti-inflammatories as well if I could.

Don't forget to ask how long after surgery before you can start taking them again !!

why do they want you off the antibiotics for surgery? Seems somewhat counterintuitiveHi Buckey,

As I understand it - they don't want you to be taking a medication that may be a hindrance if something happens post op, ie taking one set of antibiotics when you may need another for the problem you now have ... it's just standard practice.

Not forgetting two things;

1 - Your surgeon's understanding of your disease & treatment is most probably not their area of expertise.

2 - That the AP abx you are on may be for example Tetracyclines; and as you know Tetracyclines are only used to target some infections not all infections.

Edited to add this:

In my case I asked my PR Dr and her advice was to come off all abx one week prior to surgery and if all went well restart a week after -- My specialist surgeon insisted I come off 3 wks prior to surgery, so that's what I did (I wasn't inclined to question his judgement).

Maz-aust2009-07-15 17:34:10

interesting....my surgeon defers to my rheumatologist about meds but that also comes from a long standing relationshipwith him

as did my opthamalogist for glaucoma surgery.... she said to ask RD.... [QUOTE=buckeye]

interesting....my surgeon defers to my rheumatologist about meds but that also comes from a long standing relationshipwith him

[/QUOTE]

When I was doing AP, I had a surgical repair with plating of an old fracture and, like with you, the surgeon said that was the RD's turf. I continued the MWF Mino and added ten days of Keflex for post-surgical prophylaxis as prescribed by the surgeon.

Perhaps abdominal surgery would have had a different protocol from the RD.
[QUOTE=Maz-aust]Hi Buckey,

Not forgetting two things;

1 - Your surgeon's understanding of your disease & treatment is most probably not their area of expertise.

2 - That the AP abx you are on may be for example Tetracyclines; and as you know Tetracyclines are only used to target some infections not all infections.

Edited to add this:

[/QUOTE]

Sounds like a good surgeon.

I don't know why it is some of you read into & presume things that aren't there.

The question as I read it was that Waddie didn't know if she should come off the abx prior to surgery and asked if anyone else had some experience with this. I replied to the question as I had recently had an operation and said relayed what had happened to me.

However, it seems there are now some of you questioning the process, ie who asked who what, and who made the decision. Let me be very clear, I didn't say my surgeon didn't consult with my doctor, I just said the surgeon made the call, he wanted me off 3 wks prior and I came off 3 wks prior. The end result was that the surgeon got what he wanted.

Good grief people he is a Specialist Surgeon, who are you to question his reasoning.

Have any of you considered it may have actually been the type of procedure that was going to be carried out that determined what was going to happen?

Edited to put in:

As it was both my Surgeon and Doctor agree that it is the disease I have that contributed to why my platelets are not doing their job and that is why I needed 600 units of blood 2 days post op

Maz-aust2009-07-16 18:28:37No, Maz, I was not questioning "the process", and reading back over the replies it does not seem anyone else was either. Rather, each of us simply responded regarding our experiences, in much the same way you had responded. From where I sit no one presumed anything.

From a personal POV, there is no good grief about it, I was not questioning your surgeon's reasoning, nor from what I read has anyone else. Rather, we simply responded regarding our own experiences with our surgeons.

I stated quite clearly that perhaps the protocol for abdominal surgery on AP would be different. So, yes, there was certainly consideration for the type of procedure.

[QUOTE=Maz-aust]I don't know why it is some of you read into & presume things that aren't there. Waddie, I'm glad you brought up the point about fish oil and bleeding. It's a concern and I was told to stop when I had my surgeries. I also had an eye bleed due to fish oil and I had to back down on dosage. People don't realize that this is one of the side effects. I also bled post op CD even though I had stopped fish oil 2 weeks prior. It's a constant juggle of meds. LindyLindy, I don't think (since I don't have a date for surgery) that I will restart the fish oil. I do love, love how it takes the inflammation away, so I will be missing my daily dose! Waddie, the same cautions and precautions re: bruising and bleeding applies to flaxseed oil as for fish oil.

http://www.umm.edu/altmed/articles/alpha-linolenic-000284.htm
[quote]Because of the potential for side effects and interactions with medications, dietary supplements should be taken only under the supervision of a knowledgeable health care provider.Because of the risk of increased bleeding, you should stop taking omega-3 fatty acid supplements before surgery and tell your surgeon that you have been taking the supplements.[/quote]

Thank-you so much for the article, Shug! I will certainly discuss this with the surgeon. I have not taken any fish oil since before the carotid procedure, so hopefully, by the time surgery date rolls around, this will not be a factor.

I think I will print this out and take it with me to CD, RD, and OD as well as new guy. When I reported to CD what I was on, he said no worries, should be ok to continue!!!

Glad I stopped... I would have hated laying there any longer with the 250# Nurse dude pressing on my leg! Did I mention he made a cell call to his DW with his free hand? Yep, I laid there like a log and tried not to be too intrusive on his conversation... "What am I doing? Oh, nothing, just holding pressure... How's your day goin'?" To Waddie,

I am glad I could at least let you know that you should have abx as one of the things to ask about next time you see your doctor - how long should you be off it (if at all) and how quickly can you resume taking it. But don't forget you should be building up credit for the time you were on it in anycase -- so it isn't a foregone conclusion that you would go back to the beginning if you came off some of your meds. Your doctor/s know which meds you need to stay on and which ones they would prefer you to come off.

To everyone else,

I apologise if I seemed to take things the wrong way - you are right, I didn't read it as it was meant to be and obviously I was having a sh*tty day, I agree that all our experiences have a value on a forum such as this.

Maz-aust2009-07-20 18:02:22

Maz,

Thanks for apologizing. We all have bad days sometimes. It takes a big person to apologize and make things right.

pHATS

it's cool Maz.. ;)

we all need to realize we feed this site w/ information......some solicited... some not..

it's all important, IMO.

Ok everyone, I said I would let you know so here it is:

I got the results of the 2nd opinion last Monday, & he agrees with my PR Dr & thinks it could be the start of RA as well but apparently the test results are obscure and not definative. He was definate about me having PRA though (interesting!)

However, the result of his report is that I am of last Monday back on Doxy with bloods drawn, even although I was having a minor flare at the time; the results were ESR 39, CRP 39.6 & Iron 143 -- so although my inflammatory markers are up a little from last time (why wouldn't they be when I coming down off a flare at the time) the results are positive, and it is great news about my iron levels. I have had a few aches & pains over the weekend, herxes I believe, so I am back on the MSM as of yesterday. (prefer to take MSM than drink the 'whole lemon drink' even though I like lemons!) Oh yes, and the Amoxil has been doubled in dose to 5ml MWF.

My next appt is now end of Sept.

[QUOTE=Maz-aust] [QUOTE=Maz-aust]Ok everyone, I said I would let you know so here it is:

My next appt is now end of Sept.

Glad the results are positive!!!

[/QUOTE] [QUOTE=Maz-aust]To Waddie, To Waddie,

Believe me I am not trying to make you feel any worse, but if you look at it - you have to have the operation, you have RA & the associated pain, and every time you have had an operation you have been in agony -- add to all the fact that my surgeon made a point of telling me that patients who have arthritis issues usually flare after an operation, because your system is affected by the operation itself plus the anaesthetic. Like you I was dreading what was going to happen, thinking I would be back to that excruciating agony I used to experience.

BUT, I just wanted to let you know that although I thought, at one stage, I was heading for a flare, and yes it got sore, it actually passed within a few hours and didn't come back AND it wasn't anywhere near as sore as it used to be -- after I came out of hospital & for the next couple of weeks yes I was a little achey but I didn't flare & at no time did I feel the pain I used to experience.

Just keep positive ,,, am thinking of you,

Maz

PS : We all have a habit of exagerating what we think will happen, it's a great feeling when you realise it isn't as bad as you thought it was going to be !!!
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