Help please! This is all new and very scary!

[SallyS]

Hello everyone!
I was diagnosed almost a year ago with RA but did not begin any treatments until a just over a week ago because of the extreme flare up I started going through a couple of months ago where I could barely move my arms and hands. My rheum. insisted I try Plaquenil but since I refused agreed to give me minocycline and sulfasalazine. I’m wondering if the dosage he started me on is too high since my wrist is even more swollen now that it was prior to me taking the meds. (He wasn’t sure what dosage of mino to give me and so he looked it up on his Iphone). Please help me with any suggestions! I’m reading about all sorts of different dosages for meds and it’s confusing and my app with an AP is not until a year from now!! Thank you all so much. (This is so overwhelming as everything is happening at once and I’m feeling like I can hardly function. )

[Maz]

Hi Sally,

A warm welcome to you 🙂 – just very sorry you had to seek us out 🙁 .

I see in your sig line that you also started LDN recently, so there could also possibly be herxing from this. I experienced herxing around the 4 to 6 week mark when I started this drug (had to stop it at 10 months due to night tremors).

Sulphasalazine is also believed to have some anti-microbial props, but Lynnie may be able to share more about this with you, as she has used this drug in the past, if I’m recalling correctly.

If you check out the info on the following links, this should help to explain why APers just beginning will often begin on minocycline in a “low and slow” manner. Dr. Brown believed there was a microbial cause to RA and that rheumatic tissues became “allergic” to the toxins released by these bugs as they died. So, it’s not the bugs so much as the antigen (toxins) they release at intervals in their life cycle and as they die that causes the reactive inflammation. As some of the offending bugs are slow-growers and slow-replicators, Brown felt it wasn’t necessary to do daily dosing and that it was a gentler process to use a low, pulsed regimen. E.g. 100mg on a Mon, Wed, Fri (abbreviated here to MWF) or even lower (50mg MWF) when just beginning the therapy. Patients could then increase their doses to tolerance over time without too much reactivity.

See Historical and Current Protocols here:

https://www.roadback.org/index.cfm/fuseaction/education.sub/subgroup_id/30.html

Info on herxing here:

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

There is also a documentary at the top of this forum you can watch with details on the abx protocols Brown usually began his RA patients on…the movie is dated now, but the info is still relevant:

viewtopic.php?f=1&t=2069

The best resource, however, is the Henry Scammell book, The New Arthritis Breakthrough, which you can download to Kindle or buy in hard copy from Amazon.com. Interspersed with personal stories, it also includes some history of AP and also Dr. Browns’ original book, The Road Back. It will explain all you need to know to get started and to understand the rationale for the therapy, which is a slow therapy with no overnight miracles. In fact, you may need to get further help with anti-inflammatories during these early days, as too much inflam can create a blockade that impedes tissue penetration of the abx.

I hope the above helps to get you researching, Sally, and am sure others will chime in with any questions you may have.

Hope to chat more as time goes on and you begin to see results fairly swiftly. As you’re recently diagnosed and haven’t suffered too much damage from long-term use of other drugs, it bodes well for a good response. Brown often reiterated, it could take 2 to 5 years to reach sustained remission and flares will often continue to occur during this time…these should, however, with time and some tweaking of the therapy and supportive adjuncts, begin to diminish in intensity, frequency and duration. 🙂

[lynnie_sydney]

Hi Sally and welcome. Maz has given you a very good overview and I also suggest that you take the opportunity to read the book and educate yourself as much as possible about this approach to therapy. Not only will you need to guide your rheumie in all this, it will really empower you to start to become CEO of your own health care.

Sulfasalazine is a sulfa drug so you will need to be careful that you are okay with sulfa drugs – many people cant take them. My AP doc believes that its antibiotic properties are what tends to work with it (I took it for 5 years with good results after about the 3 month mark). However, it also has suppressant properties and can be hard on the liver and the gut. This site has excellent information on this drug:
http://www.uptodate.com/contents/sulfasalazine-and-the-5-aminosalicylates-beyond-the-basics

You’ll note that it states that there are other 5-SA drugs that have fewer side effects, so you may want to ask your rheumie about those should you decide to stay on it.

If it were me I would be seriously thinking about determining to taper off the sulfasalazine at about the 6 month mark and I would also dial the dose of mino back to a low and slow starting dose for the reasons that Maz has indicated above. I would also consider having a week’s washout before re-starting at a lower dose on one or two days a week. It WILL most likely be the mino tht has caused the “apparent worsening” herx response due to cell die off – you should not be getting that response from the sulfasalazine.
Do read up Sally. It will serve you well on this journey.

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)

[gratefulgirl]

Hi Sally, I, too, wish you well on your road back journey. Welcome to this forum. Maz & Lynnie have given you a great start on resources that will help you to manage your own care & make suggestions to your rheumy. It’s terrific that he is open to listening & prescribing the Mino & LDN. I’m still a newbie but have already learned so much from the members here.

Something I’ve just realized makes a huge diference is our diet 😀 It’s been difficult for me to come around, since my hubby is always encouraging me to eat everything & anything to gain weight. Well, I’m finally taking control there, too, and already feeling more limber & strong.

Like many here, I had to make adjustments to my Minocycline dose until I found a comfortable schedule.

So don’t feel scared or alone, since you will find a great support group here!

Wishing you hugs & health! GG

[SallyS]

Maz/Lynnie/GG
Thank you all for your replies and input. I will read up on everything. It does seem like I will have to become my own doctor now too….
As I said this is all very confusing. My rheumie prescribed the mino just for a month and sulfa for 4 months. He’s already said that if the bloodwork doesn’t come back with improvement in a month he will want me to use something else.
I am not willing to take anything else at this point so I know it will be a struggle to make him understand this and agree.
Right now I am having a lot of pain in my left wrist and he has suggested another corticorstoid injection (this time in my wrist) (I got one last month in one of my fingers). I am unable to use my left hand due to the pain but I read these injections are not good. Anti-inflamatories have not worked to bring down the swelling and pain so I’m wondering if there’s anything else any of you can suggest for the time being until any of my meds start kicking in? I have to have my sister dress me and can’t even brush my teeth. Driving is becoming extemely hard as well. Did any of you go through a depression due to the fact you’re unable to do the “basic” thing you once used to do?
It’s a slow process I know, it will take time…..

Thank you all again and hope you’re all having a wonderful day.
Sally

[Anonymous]

Hi Sally,

This is my first post and so I am a newbie also. I cant stress enough how much information you can get by reading posts and the books. I wanted to address you question on depression. I am a very happy go lucky person but this RA stuff can really bring you down. It can squash your hopes and plans for the future but you cant let it (easier said then done). The simple things that you used to take for granted may now be out of reach (for now). Picking up you children or even having a catch with them may not be possible. The depression is a very real thing- in Doctor Browns book “The Road Back”, he points this out specifically. A lot is going to depend on your surrounding support but most importantly you can not give up- know there is a light at the end of the tunnel and you can get your life back. Find someone to talk with, use this forum and lean on friends. I should take my own advice more!! As your AP starts to work you WILL come out of the cloud and you will be able to do the things you wanted to do, the depression will slip away. Dont give up believing.
I am just starting my journey also- at times I am in that same cloud- I see people around me doing the same things I used to do and I say to myself I want to be that way again- I believe I will!!
Prayers,
Keith

[SallyS]

Thank you Keith. It is very frustrating being unable to make people understand what r.a. is all about. All everyone ever says is that it’s something their “grand-parents” had and their knee hurts when it’s raining or that a little vacation in the sun will sort it all out….it’s amazing to see how many people don’t know that r.a. is not the same as arthiritis and just how serious it is. I have to ask co-workers to open my water bottles or pick up stuff for me. I can tell they feel I’m just acting like a princess while in reality I am genarally unable to do all the things that used to be so simple not too long ago. Some days I’m fine, some days I feel so old and useless. I started taking medications not too long ago and nothing is working…so far. It’s comforting to read everyone’s posts. I am hoping I will feel better soon. Even a little better would make me happy.

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