Bad report from Dr Appointment

[APbeliever]

Today, I got a very bad report from my appointment with the doctor. He told me I had some erosion in one of my foot as well as osteoarthritis in both my hands. My hands and wrists were always hurting a lot even with Methotrexate. The only time I got relief was from prednisone. He told me by following the AP therapy, your joints are getting permanent damage (erosions). I am very frustrated and tired. Don't know what to do now. As you know osteo also is a side effect of RA. I am afraid now by not using Enbrel as per his recommendation(Enbrel or Humira), I have made permanent changes to my own body. Any advice will be appreciated. He also wanted me to start using Fosomax (jaw breakers) or Actenol to increase the bone density. My SED rate always varies from 18 to 29 and I am male. Amazing isn't it? With that low of SED rate, erosions are occuring.

[Randy]

I have never seen or heard anything about getting permanent joint damage from AP.  If that is true, how quickly is that supposed to come about?  I certainly very much look forward to hearing what others have to say about this.

Diffuse SD since Apr '07
AP since Feb '08
100mg Mino twice daily
Stopped Clindamycin IVs Aug 2019
"No one should profit over someone else's illness"

[linda]

I don't think that AP causes joint damage, but instead joint damage can occur while waitiing the year or 2 it takes for the abx to really kick in; also, if herx reactions are too strong, joint damage can occur from that as well. That's another reason there are so many different doses and regimens, individual herxes vary in severity and abx are adjusted as necessary. It's why anti-inflammatories are important to take with AP until inflammation calms down, in addition to helping the abx get thru the inflammation to the affected joints.

At least, that's my story and I'm sticking to it.;)

[Maz]

[user=1212]APbeliever[/user] wrote:

He told me by following the AP therapy, your joints are getting permanent damage (erosions). I am very frustrated and tired.

Don't know what to do now. As you know osteo also is a side effect of RA.

I am afraid now by not using Enbrel as per his recommendation(Enbrel or Humira), I have made permanent changes to my own body. Any advice will be appreciated.

He also wanted me to start using Fosomax (jaw breakers) or Actenol to increase the bone density. My SED rate always varies from 18 to 29 and I am male. Amazing isn't it? With that low of SED rate, erosions are occuring.

Hi APBeliever,

I'm a bit confused by your doctor's comment that AP is causing permanent joint damage. You've only resumed being on antibiotics for a month or so now, is that right? If you were still experiencing pain while on mtx and pred, then isn't it possible that joint damage was occuring then?

Also, I don't quite understand the comment that osteo is caused by RA. They are two very different types of arthritis. Osteo is caused by the wear and tear of aging and is not considered “autoimmune.” RA is an inflammatory disease that is considered to be “autoimmune.” It's not that a person can't have both at the same time…they can, but my understanding is that RA is not a cause of osteoarthritis; it's an entirely different condition. Also, there are no drugs to prevent osteo (just bone loss, as in Fosamax)…immune-suppressing drugs won't touch it. Doxycycline, however, has shown some efficacy in studies for slowing the progression of osteo. 

There are some folk here who take a biologic with their AP and later find they can wean off them. If you are afraid of joint damage and feel the need to choose something, then a biologic may be your only option (particularly with your liver issues). Although, there is no guarantee that any drug will prevent joint damage and, if it does, that it will work indefinitely. 

Would definitely recommend researching the Fosamax and Actenol. I think it may have been A Friend who posted research out of Canada that revealed that these bone density drugs were actually causing bone spurs in joints. I'd also be cautious about adding high dose calcium without adequate magnesium and Vit D3. Calcium has a tendency to cause build-ups throughout the body, not just joints…but, gall bladder, arteries, calcifications that are a prelude to certain cancers, etc.

Hope you find your answers, APB. I know these decisions are difficult…I'm just a little surprised that your doc is blaming your erosions on AP when you haven't really been on it long enough for that kind of conclusion to be drawn.  :doh:

Peace, Maz

[JBJBJB]

I just had same experience this week. My hands also showed erosion. 
http://www.rbfbb.org/view_topic.php?id=3987&forum_id=1  

I fully understand the feeling of shock, disbelief and frustration. My problem is lack of inflammation control. I need to do something about it while I am on AP. 

Don't make any decision now. I'd do more research and talk to several people who are in your situation, and see how they are dealing with this situation. Going back to these toxic medicine is very easy. I still have a full bottle of unopened plaquenil. It is going to be my last resource if I cannot find other anti-inflammation med.

Hugs! JB

[APbeliever]

AP does not cause joint deformities or osteo but waiting for it to kick in does cause erosions of the joint. Maybe, I should have taken Enbrel instead of MTX to calm down the inflammation as I did have a lot of it when RA hit me. The only thing that helped was taking MTX along with AP that finally calmed it down. But reading the side effects on roadback site and as per Dr F's suggestion, I decided to drop MTX which was a big mistake on my part. I believe Dr B also mentioned it in his book about individuals who had developed osteo as a result of ongoing inflammation problems with RA. My doctor only mentioned that by following AP therapy and not doing something to curb RA pain completely by using drastic therapy (MTX, Enbrel etc), I have caused erosions to appear in my joints and also have developed osteo in my hands and feet. Maybe, I did not make it so clear in my post earlier. Sorry for the confusion.

 

The statement below is from the site mentioned below.

“

Inflammatory Response
The inflammatory response is an overreaction of the immune system to an injury or other assault in the body, such as an infection. This response causes specific immune factors, called cytokines, to gather in injured areas and cause inflammation and damage to body tissue and cells. The inflammatory response plays an important role in rheumatoid arthritis and other muscle and joint problems associated with autoimmune diseases.

Inflammation probably plays at most a minor role in the formation of osteoarthritis and is more likely to be a result — not a cause — of the disease. However, inflammation may play an important role in the progression of osteoarthritis and in its chronic nature. The effects of the inflammatory response in osteoarthritis are likely to be different, and less severe, from those in rheumatoid arthritis.”

http://adam.about.com/reports/Osteoarthritis.htm

 

[APbeliever]

Maz dear I am taking adequate calcium along with Magnesium and Vitamin d-3 with chelated zinc. Thank you all for your wonderful advices. I don't believe in calcium supplementation since I believe that osteo developed due to rampant RA inflammation and prednisone/prilosec (calcium blockers). Doctors often tend to forget that prednisone and prilosec are known calcium leechers/blockers. Does anyone here have erosions that healed up after getting remission? Is it possible? I believe someone here posted about erosions in their fingers healing up with vitamin d-3 /calcium supplementation.

[PhilC]

Hi APbeliever,

The problem isn't with the AP, the problem is that you have a doctor who does not know how to properly treat you with it. In fact, it appears that he may not believe that it actually works.

I did some research a few years ago on the bisphosphonate drugs used to treat osteopenia and osteoporosis because my mother's rheumatologist wanted to put her on one, and a friend's mother was on Boniva and having bad side effects. They are nasty drugs.

Osteoporosis Drug Fosamax is Bad for Your Heart
http://articles.mercola.com/sites/articles/archive/2008/05/20/osteoporosis-drug-fosamax-is-bad-for-your-heart.aspx

Fosamax: Is Long Term Use of Bone Strengthening Drug Linked to Fractures?
http://abcnews.go.com/GMA/OnCall/fosamax-long-term-bone-strengthening-drug-linked-fractures/story?id=10045179

Similar to the story in the above article, my mother knows a woman taking Fosamax whose femur (thigh bone) snapped in half just from getting up off of the sofa. My mother also knows another woman who took Fosamax for five years and now has bone cancer. Coincidence? Maybe, but I doubt it.

Be sure to read this article:
http://www.drmirkin.com/joints/J159.htm

According to that article, temporarily adding immunosuppressive therapy to the AP is sometimes necessary.

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[Kim]

Phil,

I share your concern over the osteoporosis drugs.  My osteo is bad and for years ALL of my doctors have been pushing the bisphosphonates and I've flatly refused.  The risk/benefit ratio just isn't there.

kim

[lynnie_sydney]

APB – I have little doubt that any thinning of the bones would be due to use of pred. And I too would suggest researching the drugs such as Fosomax befoe starting them. It sounds as if you are caught between a rock and a hard place here – listening to a doctor who doesnt believe in or know much about AP, reading other information and then trying to sort out a treatment regime. It must be very dificult for you. If it were me, I'd now consider how much I wanted to pursue AP as my preferred way to go. If that is what I chose, I'd move heaven and earth to go see one of the best AP docs in the country. Lynnie  

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[APbeliever]

Thanks Phil, I read Dr Mirkin's website and my arthritis started with an infection that went for 3 weeks with diarhea and end result was arthritis one fine morning when I woke up literally with it. Doctors thought it was sudden onset of reactive arthritis but it did not go away like they usually do in six months or so. Rheumy's first thought was reactive then Crohn's disease followed by seronegative RA.

[APbeliever]

Thanks lynnnie, yes I am finally going soon to one of the finest AP doctor in the country:D. But AP doctors don't treat osteo or do they? Doxy is not an option due to liver pains with doxy. I had my Mino reduced down to just 50 mgs three days a week due to liver pains. I have strong belief that my liver gets fat with tetracycline family drugs and I gain weight as well with them. I was on Mino 200 mgs three times a week for 8 months before liver pains made me stop it. I restarted after three months on reduced dosage.

[Lynne G.SD]

There has been a lot of problems with bone density meds if taken for more than 5 years.Here is some U.S. info. It was on the news here in Canada the other night and if I can pull up the article I will pass it on.

http://www.wxyz.com/content/news/seenon7priority/story/Fosamax-May-Be-Linked-to-Bone-Breaks/pfZstH3s40CkT8P5xtj85Q.cspx

[Lynne G.SD]

Here is a bit more info I had on file.

http://www.searcylaw.com/practices/bisphosphonates-/

[Eva Holloway]

APbeliever,

channel 13 just run a two day episode about Fosomax, they found out that it actually did not help and several people had femur breaks instead the bone staying well. It was on Monday and Tuesday this week. Dr. K. took me of Actonel since it always made me sick to my stomach, taking Prednison and Actonel just didn't work for me. Wish you would have seen this news.

I have RA and DM, I am not sure if I had any errosion; there were days I couldn't open my hands because my fingers looked so bad, but when I got off Prednison finally I found out that I had also osteopinea. When I took physical therapy they had to be very careful because I broke two ribs without knowing. Enbrel is just as bad as Methotrexat. I had one infection after another, My first RA drug was Methotrexat, then cytoxen, then followed Cellcept and Enbrel, with always taking Prednison. There were days I felt so bad that the doctor gave me a shot of Prednison, several times I would get over 100mg. Never realized that all that medication has caused more damage to my body than the antibiotics and supplements.

Keep on taking the antibiotics and cut down on your medication the rheumy offers you. I remember when mine offered me a large variety of those drugs, and I went for them. It took some time to get off them, but I finally did it. It was hard. I still have a bottle of Predniso, why I don't know, I should toss them out because I am doing so much better and yes it has taken me two years to get to this place. So don't give up.

Eva:D

Eva Holloway

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