First visit to AP Dr.

[magsmc]

I am back from my first visit to the “AP” Dr.  I feel disappointed and confused about what to do next.  After a long discussion and x-rays, she feels I have too much bone erosion/damage to use the antibiotic protocol as a treatment.  She feels mino. is really an option if there is mild disease, and no bone erosion, but in my case wants me to use an injection (Embrel) and possible methotrexate.  I have never used these drugs before, and have actively tried to avoid them.  I used NSAIDs up until pregnancy, and have been off meds for about 8 years while having children.  I have had joint damage along the way, I am aware, but can function day to day and don't feel it's intolerable.  Yet, the dr. says I must consider DMARDs not ust mino. or my future looks bleak due to the progression of the damage so far.  I am wondering, is it the case that mino. is not a viable treatment option if there is active inflammation and already permanent damage/erosion at some joints? 

[Maz]

[user=411]magsmc[/user] wrote:

  I am wondering, is it the case that mino. is not a viable treatment option if there is active inflammation and already permanent damage/erosion at some joints? 

Hi Magsmc,

Really sorry to hear of your disappointment after visiting the new AP doc today. I can only imagine how you must be feeling. :crying:  Of course, only being AP patients ourselves, none of us here can advise you what to do, but we can offer suggestions that might keep the light of hope on for you. I hope so…

Have you had a chance to read, “The New Arthritis Breakthrough,” by Henry Scammell yet? In it there are case studies of others who found AP late and have recovered and, although it can be a slower process to turn around more longstanding disease (thereby risking more joint damage), it can and has been done. Also, Dr Brown felt that IV Clindamycin was also indicated for people who were severe or who had their disease for a long time. This was to jumpstart the therapy and might also be used as an adjunct at intervals to speed progress and get people through flares. So, although this doctor was not very positive about AP, it's but one opinion, so try not to give up hope. Every AP doc has their own philosophies and some are more experienced than others, as with anything. 😉 There are other options for you to consider and it may just take going to a more experienced AP doc. And please do read or re-read the book, because it will renew your hope…as it has done for me many times before.  

This said, there are others in your shoes who do AP in combination with other DMARDs, like a biologic, methotrexate or plaquenil, for instance, until the AP has a chance to kick in, to waylay further inflammation and damage, and they can gently wean off their other meds later. How one does when they wean off the other drugs is very individual and it can be an easy or hard thing to do, sometimes taking patience and time. In truth, this sort of combination is like taking two meds that are working at odds with the other, because the whole idea of AP is to retrain your immune system to defend itself against the onslaught of infection and the other sort of drug is trying to prevent your immune system from doing its intended job. However, 'needs must' in some cases and it really depends on how you feel about this personally. If you are worried about more damage while you wait for AP to work (and you are a mother with young children who needs to keep going), then this might be an option to consider for a temporary period of time. It's probably taken a long time for you to become sick and so it will take some time to reverse things.

In answer to your question above…yes, minocycline is a viable treatment option if there is active inflammation and already existing joint erosion. Afterall, we all have some active inflammation or we wouldn't be taking anything. It's also an approved American College of Rheumatology DMARD, but usually isn't given the credit it deserves, because it doesn't work in quite the same way as the other drugs and relief may not be as immediate. It takes time to 'retrain' the immune system. Further, like any DMARD, it can't reverse the damage that has already been done, however it is very effective at getting to the root cause of rheumatoid disease, which the other drugs do not. For some it works fast…as in mild, early cases. For others, it takes longer as in severe, longstanding disease.

At this point in the game, it might not hurt to get a second opinion from an experienced AP doc such as Dr S in Ida Grove, Iowa or Dr F in Riverside, Calif, if you can manage a trip to see one of them. IV Clindy would probably be a good choice to get things started. Travel might be totally impractical with your young family, but if you could find a way, it might be your best bet to get a good start on AP…and also to renew your hope. Another option is to call Dr S in Iowa, who does do phone consults on certain days/times and ask him what he thinks in your case. He's a very experienced AP doc…considered one of the best…and trained under Dr Brown, so he won't lead you astray with this. It might just do your heart some good to do this. 🙂

Wishing you well in your decision-making process!

Peace, Maz

[whaleharbor]

Magsmc

I was told the exact same thing as you.  Exact…by a non-ap rheumy.  I'm going to see Dr. T in Boston (mostly because it makes sense geographically). 

Like you I am very functional but have clearly had damage.   I just wonder what these docs did before Enbrel?  Were we all left to suffer damage, did they just not worry about it, are they over estimating the damage?  Is this drug company hype…or truly a advancement of the science…because in 17 years of this for me, this is the first time that I've heard this and the damage for me happened very early on.

So, while I can't offer anything to you…at least you know you are not alone.  I suspect there are many of us these days being told the same thing.

I'll keep you posted on my visit with Dr. T…please keep us posted on what you do next as well.

— whaleharbor

Minocycline 100mg every other day with food...lots of food: Zydus brand. Celecoxib 200mg twice per day: Greenstone brand.

[magsmc]

Thanks very much.  I am working very hard today to not be depressed about the visit.  I have read the book, and mentioned it to the AP dr., she just seemed to disregard most of it.  She had a warm manner, and seemed concerned and caring, she just obviously follows a very aggressive medicalized approach.  I am very concerned, because according to xrays, I have pretty major erosion in a number of joints.  I am trying to wrap my head around all of this…it is a case where I have spent years trying to manage with holitic/health/wellness/alternative approaches, and have improved, but if this damage is occurring perhaps I'm also in denial and used to the pain, and I need to accept stronger medications to get the damage under control.  I don't know!  How can I contact Dr. S. who does phone consultations?  I live in GA, and yes with 3 kids under age 7 it wouldn't be easy to travel…but I will also do what I must to try to get better, so if I need to I will!  Do you know of any closer drs. to me worth consulting.  By the way, the one I met with was Dr. B. in the Atlanta area.  Also, I still have the 100mg mino. that I was taking (took it 5 days twice a day then it made me very sick – yes, I know too high of a dose).  I am wondering if I should continue taking it once or twice a week since I have it?  I know there are no set answers, I appreciate the support very much.  It's hard to keep my chin up right now. 

[Joe M]

The introduction of biologics are indeed an advancement of the science.  They are the first drugs designed specifically for RA.  All the other drugs – methotrexate, plaquenil, prednisone, gold, sulfasalazine, etc. were drugs borrowed from other diseases.  Methotrexate, for example, is chemotherapy.  Biologics target one protein (TNF-a) out of the millions that are involved in the immune response. 

Rheumotology has also changed a great deal.  Twenty years ago, the doctors were told to treat with the least powerful agents first, and only go to the heavy hitters if the light stuff wasn't working.  We now know that most joint damage happens in the first few years of the disease.  This has changed the treatment strategy to be more aggressive right from the start, which is why many new patients are now being offered biologics.  They are clinically proven to stop or slow damage in even the most severe cases.

This is not to promote any therapy, just wanted to answer your question.  RA was called the “crippling disease” for a reason.  Now it doesn't have to be.

Joe 

Note: This is in response to Whaleharbor

[Maz]

[user=411]magsmc[/user] wrote:

I am trying to wrap my head around all of this…it is a case where I have spent years trying to manage with holitic/health/wellness/alternative approaches, and have improved, but if this damage is occurring perhaps I'm also in denial and used to the pain, and I need to accept stronger medications to get the damage under control.  I don't know!  How can I contact Dr. S. who does phone consultations?  I live in GA, and yes with 3 kids under age 7 it wouldn't be easy to travel…but I will also do what I must to try to get better, so if I need to I will!  Do you know of any closer drs. to me worth consulting.  By the way, the one I met with was Dr. B. in the Atlanta area.  Also, I still have the 100mg mino. that I was taking (took it 5 days twice a day then it made me very sick – yes, I know too high of a dose).  I am wondering if I should continue taking it once or twice a week since I have it?  I know there are no set answers, I appreciate the support very much.  It's hard to keep my chin up right now. 

Magmc,

Everything you mentioned above (your questions about possibly being in denial, asking about stronger meds to control damage, etc) are the kinds of questions you can ask Dr S when you call for a phone consult. He will be able to tell you, in his long experience, how patients with longstanding disease have done on AP and whether IV Clindy would be a good option for you. So, hang tight and don't get too depressed about this…hard, I know, but you've only had one medical opinion thus far….and like any opinion, it is just one perspective of many.

To get Dr S's contact details, you can drop a note to apdoctors@roadback.org . Be sure to ask specifically for Dr S's information and the days/times to contact him for phone consults. One thing to consider is that Dr S will also consult with patient's local doctors on AP and IV, if you can find a doctor who will be willing to work in this way.

There are other AP doctors in the southeast that you can contact and can ask for “the best” and ones who are known to do IV Clindy in the surrounding states. Dr S in Chatanooga, TN comes to mind and Dr K in Lufkin, TX, but there may be others much nearer to you. 

Perhaps a few people will chime in here and will private message you their AP doctor info, if near the Atlanta, Georgia region.

If you're experiencing worsening right after starting mino, then it's a good sign it's starting to work, although you didn't say exactly how you felt “sick.” Did I miss another post on this? If by “sick” you mean an increase in existing symptoms, it's probably a herx. If you are experiencing dizziness, this is a common, early symptom that passes as your body adjusts. If nausea when you take on an empty stomach, you can take a few crackers or apple sauce, just to coat your stomach a bit. Probably not a good idea to take it with a heavy meal, though, especially not dairy as it reduces its effectiveness. Also, no supplements for a two hour window before or after mino. Some people find that if they lower their dose (to Mon, Wed, Fri pulse dosing – either 100mg once or twice a day) that herx symptoms, nausea and dizziness are much easier to handle. Again, Dr S should be able to help with dosing questions given your symptoms.

Hope this helps a bit, Magmc…I know it's not easy at your stage of the game to decide what path to take – AP, conventional meds or a combo of both. It wasn't easy for me, either, when I was initially diagnosed and so severe.  I don't think it's ever easy for any of us. In my case, the decision was pretty much made for me as regards biologics, because I have a brother with MS and, having close family members with this disease, is a contraindication for me. I also have a mother-in-law with psoriatic arthritis and have seen how the usual meds for that have worked for a time (and had their own nasty side-effects), but have eventually worn off and really haven't done much to stop her progression.

I don't mean to sway you either way, but you've been your own health advocate for many years now and feel sure that armed with all the available info, you will feel better about making a fully informed choice for yourself. So, keep the faith in your ability to do the research and ask the questions….and just don't let one doctor's medical pronouncements influence you either way at this point. You've been at this for a long time already…so a few more months to evaluate and make a decision isn't going to make or break anything. Just take that doctor's opinion as one of many that will lead you to the best option for you.

Peace, Maz

 

 

 

[magsmc]

The worsening I experienced didn't have to do with the arthritis or inflammation, that was actually improved a bit in the 5 days I took it.  My problem was a severe migraine headache with dizziness and nausea, as well as diarrhea.  So, I don't know if it was Herx from some die-off or if it was simply side effects of the medicine.  I did take it on an empty stomach so that may have been the problem.  I have tried for so many years to avoid the medicines…I am a bit cynical of the pharmaceutical industry…but I am realizing my damage may be more severe than I even realized, and I am especially concerned because the inflammation for the last year has been in my neck and that greatly worries me.  I can function day to day, and am pain tolerant…but my goal is to be in good shape in 10 or 20 years, and with that in mind I don't yet know which way to go…stronger meds or not.  I am nto a believer in just treating symptoms without finding the root of the problem, but also recognize I can't just sit by while damage continues to occur.  I feel very disconcerted, and have no one in my life who understands all this.  I appreciate your support.

[Author]

Posts