All 3 drugs at the same time?

[DiamondTNT]

First, I want to thank all of you here that have helped me make decisions about my RA and treatments for it, which first started noticeably to 'hit' me on June 12, 2008.  By the 6/26, I ended up in the hospital thinking of Tetanus, never once thinking of RA since I found out I knew NOTHING about RA.

After blood and urine tests for just about everything, my RF is very high and I am told I have a 'severe' sudden onset case of RA.  OK, my life is changing drastically and I have a lot to learn.  My primary care Dr referred me to a Rheumy and 7/02 I started on 10mg Prednisone daily for 30 days; a week or so later I started 200 mg Plaquenil 2 x daily.  Since it was finally determined that I should not have the Shingles vaccine, I started 2.5mg Methotrexate x 3 on 8/31, x 4 on 9/07, and am supposed to go to x 5 starting 9/14 and every week thereafter.  She had me go off the Prednisone after the 30 days by just cutting it off.  After researching that drug, I found out that is not a good thing to do and I should have been slowly weaned off from it (explains what was happening to me that first week off).

OK, most of my body parts outside of my torso hurt almost all the time now, but not like the 'somebody is holding a torch on me with other little demons inside using sledge hammers' that I was having happen prior to these meds.  This can and does change almost hourly.  I'm not as exhausted as I was, but still tire out pretty fast with what was just normal exertion – very frustrating.

Yesterday, I kept my appointment with my Rh Dr and brought some of the physician printouts from this website, wanting to talk about AP vs the drugs she has me on.  She was insulted and refused to even look at them!  I am now searching for a new Dr and will not stop until I find the right one.  Meanwhile, she prescribed ADDING Enbrel to start right away, which I really don't want to do.

My question here is: Anybody been on all three of these kinds of drugs all at once? Plaquenil, Methotrexate, and Enbrel.  Considering everything I've read about these three, it seems pretty dangerous to me.

[suera]

Well I am on Prednsione, Methotrexate, Minocycline and Enbrel.  I would suggest if you can give  the AP therapy a good try before you submit to any of these more “dangerous” drugs.  I tried AP for 1 1/2 years and admittedly didn't start, or even find out about AP until 1 1/2 years into my sudden onset RA diagnosis.  I wish I had known about it right off the bat as I wonder if it would have worked better for me.  It  did  help, no doubt, but not enough that I was anywhere near a somewhat normally functioning person.  Good luck to you and I hope you can find a really good AP doctor in your area.

Sue

[Maz]

Hi DiamondTNT,

Really great that you managed to find your way to this site…welcome! You'll find lots of great people here with lots of experience and information to share…along with tons of support to get through the rough patches. Most of us have been there and know what you're going through.

I personally haven't been on any of the traditionally used rheumy drugs and, knowing my very swift onset, severe RA was triggered by an infection (Lyme Disease and coinfections), it soon became clear that I needed my immune system to help fight these.  Like you, I probably should have been hospitalized in the beginning, but I'm a stubborn old moo and, against my PCP's advice, I started researching on my laptop from the bed and sofa (tapping the keys with my swollen, stiff fingers) and found myself a physician willing to treat me with antibiotic therapy. In spite of all the naysaying that antibiotic therapy wouldn't work for me, because I was too severe, I am now having 95% improved days after 22 months of treatment. It hasn't been easy, because I was unable to take anything but Advil for the pain (Lyme loves prednisone!) and I was fortunate to have a good family support system to help out when I couldn't move for months.

If you haven't read it already, I highly recommend getting a copy of “The New Arthritis Breakthrough,” by Henry Scammell. I cringe at the title whenever I type it out, because this is not a new therapy and has been around since the late 30s! This book has become my bible and I've read and re-read it about 5 or 6 times now, constantly referring to it for answers to my questions and those of others who frequent the board. It will explain all you need to know about the rationale for antibiotic protocol (AP).

If you would like an AP physician list for your state and/or the most experienced in the US, if travel is an option to you, then I'd be happy to send you one in a private message (we only use physician initials on the bulletin board to protect their privacy ;)). Just let me know.

Most often, in very severe cases, Dr Brown would use a series of IV Clindamycin to jumpstart progress and would then move on to low dose, pulsed oral antibiotics, although each patient is different and a knowledgable AP phyician will normally tailor a protocol to suit the patient.

There is much information to digest on the main website, too, if you haven't found it already. Here are the “Newcomers” and the “Education” links to help you start.

http://roadback.org/index.cfm/fuseaction/education.sub/subgroup_id/8.html

http://roadback.org/index.cfm/fuseaction/Education.main.html

We have to work with our physicians for a long time when we get sick like this, so it's really important to find a doc who will partner you and listen to your concerns. There's no room for physician ego, as we need all the support we can get! Just my humble opinion, but you're wise to look elsewhere. 😉

Welcome!

Peace, Maz

 

 

[Cheryl F]

[user=756]DiamondTNT[/user] wrote:

Yesterday, I kept my appointment with my Rh Dr and brought some of the physician printouts from this website, wanting to talk about AP vs the drugs she has me on.  She was insulted and refused to even look at them! 

Diamond,

While the story you describe is common around these parts, it is infuriating every time I read it related to an RA patient's request.  I cannot begin to understand why a rheumatologist would be offended when a patient asks about a PROVEN therapy for RA, that is on the list of APPROVED treatments.  Now, while I don't agree with it, I do understand when patients with diagnoses other than RA are refused a prescription for minocycline, but I cannot understand it when it happens to RA patients.  These doctors have some nerve refusing to prescribe a treatment from the list of approved treatments, honestly, I don't see how they get away with it. 

Find a doctor who will work with you to offer all of the viable alternatives and then weigh the pros and cons and YOU DECIDE!

Good Luck!

Cheryl

[linda]

A rheumatologist who just cuts you off after being on prednisone for 30 days? That alone would send me running. Even PCP's know better than that.  As for the MTX in comb. with Enbrel, they are now prescribing MTX with biologics to prevent the formation of antibodies to the biologic, which causes them to be ineffective after several months or a few years. It sounds like a lot, especially with the plaquenil, but we sort of have to pick our poison until the AP kicks in- but yes, the fewer meds we can get by with, the better.  I would use Plaquenil instead of prednisone, given the choice.

I still can't believe your rheumy just stopped the prednisone like that – people have died from doing that. You're lucky nothing serious happened to you. Find a different doctor – ASAP.

[Silvia]

Hi Diamond:

I was diagnosed with RA initally in 2001.  I was put on Plaquenil, which worked very well for me for about 3 years.  Admittedly my initial symptoms where not as severe as you describe yours, the pain started in my wrists, then moved to my shoulders, then my feet, over a period of several years.  The plaquenil took away the pain in my wrists within a couple of weeks, really quite dramatic improvement.  I thought I was home free, then when it moved to my feet, and specifically settled on my right foot and started destroying my midfoot joints, I was prescribed methotrexate.  I took that along with the plaquenil for 6 months, with no result.  I then was put on Arava, same result but to add insult to injury, my hair started falling out!.  I was then put on Enbrel (still with the Plaquenil), six months of that, no results.  Then we added methotrexate injections with the Enbrel.  Six months more of that lovely combination, no results.  I was sent to the top rheumatologist in Toronto, who was no more help than his disciple who sent me to him, he figured he would try Humira. I felt very vulnerable, being on all these immunosuppressive drugs, I was not comfortable taking these, particularly because nothing was working!! It was at this point that I stumbled upon the roadback and have started on mino 100 mg MWF. I've also had a course of IV clinda in July.  When I attempted to up my dose of mino to 200 mg MWF I went into a herx, and I'm still there, so I'm now on a short course of prednisone to allow me to function (mainly walk).  The onset of the herx was quite dramatic, in comparison to the slowly progressing worsening on my pain and swelling in my foot, I'm convinced that it really is the classic reaction of the mycoplasma dying and releasing the toxins and then the body having an allergic reaction to them.  I'm very convinced (after speaking to many people on this site, including some of the listed AP physicians and reading Dr. Brown's book twice) that AP treatment is the most logical, safe and effective way of treating this disease.  I'm continuing with AP for as long as it will take to work, which I know can be a long time.  I don't believe that any additional trials with another biologic like Humira would be effective for me at this point.  I think since you're early in the course of your disease, you have a very good chance at an excellent result.  Best of luck to you, keep us posted on your progress.   Silvia

[DiamondTNT]

Thank you all so very much for your replies.  I spent some time yesterday searching for another Rheumy and put in a call to the nearest Dr on the RBF Florida list.  I will be working on my Primary Care Dr, begging in fact, to take this on with me. 

Yesterday afternoon RA decided to take over all limbs with swelling, some pain, loss of motion in my wrists, knees and ankles, making it difficult to walk the dog.  Right knee is now 'cracking' about every third step.  Poor little guy is not understanding why we can't go as far or as long as before.

Very interesting reaction last night.  My husband suggested I try some of the Bio-Freeze gel I've had for long time and rarely ever used, so I put it on from my knees down and my elbows down, which is where I hurt the most.  It's always interesting feeling it work in and within 5 minutes, the pain was almost gone and the motion almost back to normal.  As I was drifting off to sleep I could feel various parts of my torso 'jumping' and 'moving' under the skin and thought of all those little 'bugs' running away from the bio-freeze.  Well, waking up this morning just before 5, it was very obvious that they have gone back into my limbs with a vengeance.  Anybody else had a reaction like this to topical meds?  It has my mind jumping to what really happened and what use this could possibly be.

Chatting with my husband last night and with your responses here we've decided to get the Embrel and start it, at least for now.  Today will be my last time with this Rheumy to check my TB test and be taught how to use the Embrel injection. 

I am more determined than ever to go on AP and get some quality of life back, so I've set my target date that I WILL find a Dr to help me with this within a week.  I am a fighter. 

More about me: http://www.mortgagefraudwatchlist.org/

[DiamondTNT]

Forgot to reply to Maz. 

Thank you!  I have been here reading and learning for almost 6 weeks before I registered and posted.  About the only thing I haven't done yet is get THE book, which I will order today.

 

[A Friend]

[user=756]DiamondTNT[/user] wrote:

….Well, waking up this morning just before 5, it was very obvious that they have gone back into my limbs with a vengeance.  Anybody else had a reaction like this to topical meds?  It has my mind jumping to what really happened and what use this could possibly be.

Chatting with my husband last night and with your responses here we've decided to get the Embrel and start it, at least for now.  Today will be my last time with this Rheumy to check my TB test and be taught how to use the Embrel injection. 

I am more determined than ever to go on AP and get some quality of life back, so I've set my target date that I WILL find a Dr to help me with this within a week.  I am a fighter. 

More about me: http://www.mortgagefraudwatchlist.org/

DiamondTNT,

I love your attitude!  But some things that might be helpful in making the decision about Enbrel. 

I'm sending you a PM, with two links that might be helpful, especially since you mentioned the TB test, as the first article gives lots of attention to organisms found that are common to it and other diagnoses. 

It is good to start with Dr. Brown's work in the Scammell book, and it is also good to have a plan — shortterm (a year or two) and longterm… just in case an additional plan is needed.  We patients need to read, read, read; and study, study, study… to discover things that apply to our own case and the plan we will first use.  We are all different, and one size does not fit all with therapies. 

I found the most incredible, assembled information last night that I'm thinking about posting into a new topic.  But for right now, I'm just going to send the two links to you — which perhaps you may want to read while you are waiting for the book, to get an overview of organisms and their activity and what they cause.   

The 2nd link (in my opinion) is an option for that “after 2 years” if you are not satisfied with your progress. 

Best of luck to you,

AF

[DiamondTNT]

Busy day, yesterday.  Had my 'final' appointment with the original R Dr. and gave myself my first injection of Enbrel.  As much as I don't like this, I feel it's the right decision for now, until I get going on the AP.  I have no idea if the Enbrel helped or not, but I am feeling a lot less pain today.

Again, thank you so much to those that have responded and sent more link for my education!

Even baked an apple pie today, completely from scratch.   :blush:

[suera]

However we get to feeling better is good  in my book.  Granted I would rather feel better using AP but there comes a point when you just  have to get back to your life.

Sue

[hollybell]

lymes loves pregnizone

I am on pregnizone would my rumy of tested me for lyme before giving preg? I sure hope so. How do you know if you have lyme dis. I have a positive ra factor.

[DiamondTNT]

I guess I won't know how I will feel hour by hour!  Very frustrating.  Yesterday both legs felt like they were overfilled with lead. 

I now have an appointment this coming Friday with a DO that is on the RBF list and relatively near me.  I've spent today talking with my insurance 'case manager' and this selection will probably  force me to switch to this Dr as my PCP.  I sure wish my current PCP would agree to do AP with me, but I couldn't talk him into it.

It was suggested that I call other Rheumys in my area to see if any of them would do AP for me, so that's what I've been doing today.  My geographic area is not a large population, and it turns out that the vast majority in this specialty,  which there of few of anyway, are in the same offices as the one I'm not getting along with, so I didn't bother checking with them.  One that I called last week never has called back since I insisted on knowing if he would consider AP before I set an appointment.  The one that I spent most of my time on the phone with multiple calls back and forth said that with my RF at 362 I would not be a good candidate for AP!  But, he is willing to discuss this with me. 

Hmmmmm, I will keep my Friday appointment and see what happens.

[Maz]

[user=756]DiamondTNT[/user] wrote:

The one that I spent most of my time on the phone with multiple calls back and forth said that with my RF at 362 I would not be a good candidate for AP!  But, he is willing to discuss this with me. 

Hmmmmm, I will keep my Friday appointment and see what happens.

Hi DiamondTNT,

Really good that you're keeping your Friday AP doc appt. I say that because my RF was in the mid 500s at its worst. It is now in the mid 30s! My anti-CCP, which was also well above the upper parameter used by my lab (>60 and mine was likely in the hundreds), came down for the first time between May and July to 45.

AP seems to work no matter how severe…it just takes a little longer for those of us who are more severe. 😉  It's hard not to let those “medical pronouncements” get the better of us, I know, but I am so glad I waited it out to see these results. Although bloodwork isn't the be-all-end-all and how we're physically feeling on AP is what matters…it sure is nice to see those numbers come down. Just takes a lot of persistance and patience.

Peace, Maz

[Maz]

[user=778]hollybell[/user] wrote:

lymes loves pregnizone

I am on pregnizone would my rumy of tested me for lyme before giving preg? I sure hope so. How do you know if you have lyme dis. I have a positive ra factor.

Hollybell,

Unfortunately, there are no accurate standardized tests for Lyme. If one is lucky enough to test positive on ELISA and WESTERN BLOT, then you may get the standard 3 to 4 weeks of doxy (which for chronic cases of Lyme and where coinfections may be implicated, this is wholly inadequate).

Rheumies don't necessarily test for Lyme Disease as a matter of course, either…only if it'suspected or mentioned by the patient. Even then, they will only accept positive tests (as per the infectious disease society of america guidelines).

Some of the most chronic cases of Lyme fall through these loopholes all the time. This is why the Lyme Disease Association (LDA) and International Lyme and Associated Diseases Society of America (ILADS) recommends that patients who suspect Lyme Disease go to a Lyme Literate Physician (an LLMD) in order to get a proper clinical assessment of their symptoms. LLMD's diagnose Lyme Disease based upon patient history and presentation of symptoms and will treat with or without positive tests, if Lyme and coinfections is suspected. They don't mess around, because they know the tests are inadequate at best.

There are some labs that do more sensitive testing, but these tests are generally done “out of pocket” as they are not CDC approved. I got testing done electively through IGeneX labs in CA and tested positive on Western Blot…a test my PCP refused, because I only showed equivocal on standard ELISA. The specialty labs affirm that any sensitivity to their tests indicates exposure to Lyme, but that specific bands showing positive are conclusive for it. Whereas the CDC requires 5 specific bands to be positive, IGeneX labs only requires 2 specific bands for a definitively positive result.

This is probably more information than you wanted and hope I haven't confused thigns for you, but in a nutshell this very controversial disease really does require a diagnosis from a Lyme Literate physician, if suspected.

Peace, Maz

PS You're right…the Lyme pea soup of infections loves anything that may suppress immune function…prednisone, DMARDs and biologics. :crying:

PPS I was very RF and anti-CCP positive for RA when I began antibiotic therapy. These numbers are now coming down with the appropriate combinations of antibiotics.

 

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