Seronegative arthritis

[stile RA]

I just discovered the RBF after reading Dr. Brown's book and feel like there might be some hope. I have been having all the classic symptoms for the last 9 years (except visible red,hot, swollen joints), that were getting worse and was I getting sicker and sicker. But in July of 2008 my fingers, elbows, knees and ankles started getting very,red,hot swollen. My gp has done many,many tests but couldn't tell me what was wrong. He finally sent me to a Rheumatologist and he said I had seronegative arthritis, gave me 2000mg of sulfasalizine a day and started me on 30 mg of piroxicam instead of the 2400 mg of ibuprofin I had been taking for the pain, then sent me on my way. I had no idea what this thing he said I had was and started doing some research and was discovering how deadly these DMARDS(?) are that drs. prescribe. What I found brought me almost to despair. Until I read Dr. Brown's book a few weeks ago. Now I have been trying to find anything on AP I can.  Seems like this is an uphill battle. After reading the side effects of the meds and then reading the book, I felt like I needed to get off sulfasalizine. I go see my dr. in a few weeks and am going to approach him with AP. Does any one know if sulfasalizine, being an immune suppressant, would interfere with the AP? thanks. 

[Maz]

[user=1140]stile (RA)[/user] wrote:

Seems like this is an uphill battle. After reading the side effects of the meds and then reading the book, I felt like I needed to get off sulfasalizine. I go see my dr. in a few weeks and am going to approach him with AP. Does any one know if sulfasalizine, being an immune suppressant, would interfere with the AP? thanks. 

Hi Stile,

Welcome to the RBF support forum:D, though sorry you had to seek us out:(!

Usually, if a patient is on other rheumatological drugs when they find AP, it's generally not considered a good idea to go off these other drugs cold turkey in order to start AP. You've read the book, so you'll already be well aware of the herxheimer reaction, which is a common worsening of symptoms in rheumatic diseases, an immunologic reaction, due to toxins flooding the body when there is bacterial die-off. This, in combination with rebound from coming off the other drugs too quickly could make things pretty uncomfortable for a while. In effect, one would be wading through the common herxing months (worsening of symptoms) while also going through drug withdrawl. So it's always best, if a drug isn't containdicated for use with AP, to wait to wean off the other drugs once physical symptoms and bloodwork stabilises and has begun to improve. It can be hard to wait it out, but it is well worth it in the end, because increased inflammation in the early months can prevent the antibiotic reaching the target (the joints in your case) and so if this inflammation can be kept to a minimum, then the ride is much more comfortable.

I've done some checking around for drug interactions with sulfasalizine and this website give a pretty thorough picture of what is to be avoided. I've scanned it and wasn't able to find any antibiotics that may be contraindicated for use with sulfasalizine, but you can give the lists the twice over and additionally talk with your local pharmacist to be sure:

https://www.changehealthcare.com/rx_brands/drug_interactions/13957

The physician's desktop reference is pretty sparse on drug interactions for this drug:

http://www.pdrhealth.com/drugs/rx/rx-mono.aspx?contentFileName=Azu1045.html&contentName=Azulfidine&contentId=78

Stile, Idaho is really short on AP docs, I'm afraid, but if you're willing to travel out of state, we could give you some alternatives, if your doc is unwilling to prescribe minocycline to you. Minocycline is an approved American College of Rheumatology (for off-label use) DMARD, because it is recognized as having some immune-modulating and anti-inflammatory effects, so you could present this to your rheumy as a good reason to try this, as a safe, effective alternative. Apart from the newer biologic drugs, all the standard DMARDs are “for off label use,” because they were originally designed to treat another disease but found to be effective for rheumatic diseases. Methotrexate, for example, was originally designed to treat cancer. Plaquenil is a chloroquinine drug that was designed to treat malaria….etc. Minocycline  is considered “off label” for rheumatic disease, because it's not recognised by the ACR as being effective for its antibacterial properties…unfortunately.

Have you see the Dr Brown movie that was just loaded? It's from way back in the late 80s, so a bit dated, but you might enjoy watching Dr Brown talking about AP and his rationale for using it:

http://www.vimeo.com/3154687

All the best and if we can help with a physician list, let us know!

Peace, Maz

 

[lynnie_sydney]

Stile – I answered your original questions on the first thread you posted (now on page two). I hope you received the links.

Re the sulfasalazine. You dont say how long you've been on it. I was put on it (actually with good results) some years ago, way before I'd even heard of AP. It took about 4 months for it to kick in. My new AP doc now thinks it was the antibiotic component of the drug that worked for me. In terms of coming off it: if you haven't been on it for very long and if you are not yet deriving any benefit from it (average time I think they say for it to kick in is 12 weeks), then I cant see any problem in weaning off it. That's what I did (and I wasnt even on AP then). If you are further down the track with it and you ARE deriving benefit from it in terms of symptom subsidence, then I'd probably look at weaning off much more slowly. You will, of course, be better off if you have the support of a doc who is conversant with AP before starting this AP road. 

BTW, before starting an AP road, be sure that you read up on the Jarisch-Herxheimer response, the apparent worsening of symptoms before improvment begins. A link to some info from our main site pasted below. It actually means the drug is getting to its target and is a good sign. However, it can be confusing and frightening for newbies if this is not well understood. Best to you. Lynnie 

https://www.roadback.org/index.cfm/fuseaction/education.display/display_id/91.html

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)

[Caroline Ann]

Sorry to respond so late, but I only now saw the post, having been absent from Roadback for several months.

You can ask your doctor for Plaquenil, a benign & much safer drug than Mextotrexate.Twenty years use without negative side-effects & it works.

I  asked my Rheumatologist for it, after refusing Mexotrexate as Rx for Sero Negative Arthritis.  After 6 months on Plaquenil, I experienced a gradual remission.And it can be taken concurrently with Minocin & other drugs/vitamins. (Buy the minocin in Canada & save.)

However, after some period of time, it is my understanding that the body no longer responds to Plaquenil effectively.  FYI: I was told by another seroneg patient thatSero Negative Arthritis is like RA except it is missing one of the antibodies.

I hope this helps.

[stile RA]

[user=30]lynnie_sydney[/user] wrote:

BTW, before starting an AP road, be sure that you read up on the Jarisch-Herxheimer response, the apparent worsening of symptoms before improvment begins. A link to some info from our main site pasted below. It actually means the drug is getting to its target and is a good sign. However, it can be confusing and frightening for newbies if this is not well understood. Best to you. Lynnie 

https://www.roadback.org/index.cfm/fuseaction/education.display/display_id/91.html

Hi Lynnie, Thanks for the info. I began AP in July and I think I am experiencing the JH response. This is the worst I have felt since I began having symptoms 9 yrs ago and I keep hoping every morning that it will get better. I guess I just feel worn down and worn out with it all and am feeling like it never will improve so I can get back my life.  Anyway, thanks again and sorry for the meloncholia.  :doh:

[lynnie_sydney]

Stile – sorry that you are feeling so bad. I'm wondering whether you dropped the other drugs cold turkey or pretty fast and may be you're having some rebound effect from that as well as a herx – which could be pretty darn painful! Also what dose of mino (assume it's mino) are you on? You may want to think about reducing your dose or even having a wash-out period of a week or so and then re-starting at a lower dose. Might be worth talking to your doc about this. Certainly sounds like you need a little help right now. 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)

[Caroline Ann]

Hello,

Why don't you ask your doctor for Plaquenil which has few side effects; much safer & has been used for at least twenty years or more whereas Sulfasalazine is more recent.

I  also have seronegative arthritis, got off sulfasalazine after discovering a violent allergy to it. I asked my Rhematologist for Plaquenil, which I take along with Minocin and within 6-8 months remission was evident. After 1 1/2 years on Plaquenil, am now gradually reducing dosage to stop it.  Check out Plaquenil…..it is the mildest to treat this condition.

This is coming to you so late because I just saw your post after returning after a long absence from this bulletin board.  Connecting with these wonderful people saved me!

Caroline

 

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