Depressing Rheumy appointment

[Fran]

I went to see my rheumy today (its been a year since I've seen her last) to see if she would prescribe LDN.  She said I've really progressed with joint damage since the last time I saw her and refused to prescribe it.  She said that the AP was obviously not strong enough for me and I have permanent joint damage.  I'm really bummed.

I obviously need to do something different but not sure what to do.  I'm considering having a phone consultation with one of the doctors who are willing to prescribe LDN over the phone but that seems a little “fishy” to me.  Has anyone else done that?

This joint damage has occurred while I've been on AP (since that's the only medication I've taken since I got RA).  Has this happened to anyone else?  Where does one go from here?

[Kash]

I am a newbie around here.  But keep trying to find the answer that agrees with your gut.  We know our bodies really well.  Keep going until you find the doctor your instincts are telling you is right.

[lizbeth]

Hi Fran,

Sorry to hear about your joint damage.  I am only new here but was wondering if you are seeing an experienced AP dr or is your rheumy prescribing AP for you?  If what I am understanding by reading posts here is right then I would presume that if your symptoms came back in July that some other meds may be necessary.  If you are experiencing pain and inflammation and don't have this under control it will cause joint damage.  An experienced AP dr should be able to help with the correct meds to suit your indiv needs.

I hope this helps.

[judy cash]

Fran,

Just wondering if you have ever seen Dr. S, in Ida Grove, Iowa?  I drove over 700 miles to see him as he is one of the best AP doctors. I started AP last June with a visit  to see him, I had one week of IV'S, then oral mino, since then. I have done really well until lately. I called DR.S and he said that I should benifit from another round of the IV'S. I plan to make the trip to Iowa soon.  Sometimes you really need the IV'S as a boost. I really believe that I would not have done as well without the IV's.   Wishing you the best.

Judy

[jims]

I understand very well how depressing it can be with a rheumatologist. LDN has helped my sleep and my skin, and I am three months into the therapy. The way I found a doctor was to google search Integrative health medical doctor low dose naltrexone and my area and came up with one about a hundred miles away. There are some lists maintained out there by yahoo groups LDN as well. It seems to do especially well with MS patients and is also being used as a fertility drug if that helps. I am sorry to hear about your joint damage. Did you get to look at the X-Rays? Biologics and methotrexate are the mainstays of the rheumatological profession, and the ones who will stray from those are few. My dream MD has RA and is a rheumy that has a PHD in molecular chemistry and a degree in Naturopathic medicine. Does anyone know of such a doctor? Good luck with your pusuit of answers, jims

[Fran]

Thanks all!  Judy–Yes, actually I have seen Dr. S.  I've had two rounds of Ivs with him.  The last being early Feb of this year.  I did well after the first IV clindy, but this last round I've seen no improvement and really feel I've gone downhill fast.  I used to be on mino but had to stop due to a sensitivity I developed.

I consider Dr. S to be my “rheumatologist” but just didn't feel comfortable asking him for ldn as I already feel I “use” him so much by calling him and he let me do the last round of IVs at home through a home health care agency.  That was why I went crawling back to my old rheumatologist to ask for the ldn.

I actually called a doctor in PA today after my disappointing rheumy visit and I think I will be able to do a phone consult with him for LDN.

I really believe in AP but I'm really getting concerned that I am not going to be a responder.  Sorry to be such a “debbie downer” but I've just been really down about how bad I've gotten lately.  🙁

[Parisa]

Fran,

When you don't respond, you need to look into other things like Lyme disease.  You know you respond to antibiotics since you responded in the past.  Now it's a matter of finding a combo that will work.  If you have Lyme disease, there are all sorts of combinations of antibiotics used.

[Trudi]

[user=13]Parisa[/user] wrote:

When you don't respond, you need to look into other things like Lyme disease.  You know you respond to antibiotics since you responded in the past.  Now it's a matter of finding a combo that will work.  If you have Lyme disease, there are all sorts of combinations of antibiotics used.

I thought the very same thing–

Trudi

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[linda]

I understand Fran, it's got to be frustrating and scary too. Unfortunately, AP doesn't reverse joint damage. I know what I'd be thinking, that it doesn't do any good to conquer the infection if by the time that happens I have so much joint damage that I'm still disabled. And we also have to remember that these diseases can and do affect other systems and organs, like respiratory, circulatory, renal, eyes, etc., and that damage won't show up on an xray of a hand.

Obviously the anti-inflamatory you're using isn't working. I think you should call Dr. S, I don't know him but it seems to me that you have a legitimate reason to call the doctor that is treating your illness. I'm sorry you got bad news.

linda

[kasdance]

Hi Fran,

I actually got my pcp to prescribe it for me. I printed a packet I made with tons of LDN info and pretty much pleaded my case. She was familiar with the drug but unfamiliar with its use in RA but said she would be willing to temporarily try it.
Good luck
~Kristin

[Kim]

Fran,

Sorry you're struggling.  Parisa and Trudi hit the nail on the head with being tested for Lyme.  Iowa is a hotbed for Lyme and most doctors there are clueless about how to test or treat properly.  Please search the board for previous posts on Lyme testing with Igenex Labs. 

If you've followed this board you know how many of us have Lyme-induced rheumatic diseases.  If you treat the Lyme you'll be treating the RA, SD, or whatever. 😕

Take care…..kim

[Rosey UK]

Hi Fran,

My deformity came whilst I was on DEMARDs, so take no notice. The rheumatologist all  have a go at me as though I'm causing my own deformity and disease, with AP. I tell them I had this when I was on monthly Gold injections, and prednisolone.

regards

Rosemary

[Joe M]

Hi Fran,

What a scary thing to hear.  It sounds to me like your doctor has your best interest at heart as she's probably seen the long term effects of joint damage from RA.  RA affects everyone differently but some things seem certain – reducing pain and inflammation does not directly correlate to stopping joint damage, and most damage is done in the early years of the disease.

This article does a good job, in my opinion, of objectively reviewing the major studies that have been done with minocycline for RA.  It discusses lab findings, clinical findings, and joint erosion.

http://www.nras.org.uk/about_rheumatoid_arthritis/newly_diagnosed/which_drugs_are_used/minocycline_therapy_for_rheumatoid_arthritis.aspx

I'm sure LDN helps many people in many ways but I don't think anyone has ever claimed it stops joint damage from RA.  And Lyme should be investigated if you suspect you might have it.  I don't know of any Lyme treatments that stop RA joint damage though.  If your goal is trying to stop joint damage ASAP, you should work with your doctor to decide if there is anything on the market that will do that.

Joe

[rajah99]

Hi Joe

So are you saying that AP treatment is not going to prevent joint damage?

If someone has been recently diagnosed, and has very high RF readings ( above 600), that would indicate being more prone to serious joint damage,  then is AP not really suitable for them?

Im new with all this, and been reading as much as i can on this site almost every night for 2 weeks. But i cant get my head around whether AP slows the joint damage or just relieves the symptoms. I read the article that you posted, and the Prof implies this very conclusion.

[anno]

I read the article too. I thought they were very vague in their claim about x-ray results. Which studies showed this?  If lab numbers return to normal, and life returns to normal, it's hard to believe joint damage is continuing.
Also,  I didn't see any low-dose pulsed trials. They all used 200mg daily.

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