Update…Happy One!

[Kats]

Hi RB Gang,

You met me briefly over the summer as I was starting AP, which I am doing pretty much on my own with a willing family doctor.  I thought it was time to share how things are going because I know how good it is to read encouraging posts when you aren?t feeling so good.  Well, in short, I FEEL AWESOME!!!

Here?s my story in a nutshell:  I have had palindromic rheumatism since January 2007.  I still managed to keep up my active lifestyle (although it was not easy) and hid my symptoms and compensated in any way I could think of.  In fall 2008, I had signed up for a job at the mountain I live on as an outdoor worker in charge of trail maintenance.  I knew I would have trouble when things flared up, but I think I was in a state of denial, and believed that whatever I had would clear up.  About a month before I was set to begin the job, I got worse.  I went on Methotrexate and had an amazing 4 months on it.  Then as winter was ending the symptoms began returning with a vengeance.  I went off methotrexate because it was causing breathing problems, and by July I was a mess.  The arthritis was totally set into my hands, wrists and feet, and yet continued to be palindromic in other parts of my body.  I was useless and very depressed. 

Then I discovered rheumatic.org which lead me to this site, and I knew AP was my only real hope.  I saw two different rheumatologists who refused, and made me feel like a fool for even talking about it.  But, like so many of you, I knew in my heart that the route of immunosuppressives and inevitable decline was not for me.  I did tons of research and went to my family doctor and he agreed to help me out.  I did a ten day course of oral Clindy (1200mg) and then began 100mg Minocin MWF.   I continued to take 1200mg Clindy one day a week.  After two weeks I moved up to 200mg Minocin MWF, and I am now on 200mg Minocin every other day, and the Clindy one day a week.  I herxed, and yes it was depressing and scary, but my body told me each time I was ready to increase the dosage.  Now after AP for 3.5 months I feel better than I have in ages!  My wrists and fingers are almost totally better, still weak, but I feel the strength coming back every day.  I exercise every day and I am doing an intensive first-aid course right now to be a ski patroller (well snowboard patroller) this winter!  When I applied for this job mid-summer, I thought I had about a one in a million chance of being better in time for winter and that I would most likely have to back down and get a job taking phone reservations.  Well…it?s pushing it because I?m not a 100% better, but I really think I can do it;  If I keep improving at this rate I will be tearing up the slopes this December and happy beyond belief!!!

Ok so that was a long winded update, but thanks for listening.  I think that I am very fortunate to be feeling this well so quickly, but I believe there is hope for all of us at whatever rate improvement happens.  My thoughts are with everyone on this board, and I pray we can all post happy updates one day!

Katie

xxx

[APbeliever]

Great news. But you are also taking Plaquenil and thats also a dmard. Many rheumys start off with Plaquenil or Sulfazaline. They are both DMARDS and they work for a lot of patients. If the patient is still not feeling better then they move on to MTX and so on and so forth. 
 

[Kats]

Interesting thought…but I have been on the Plaquenil for over 2 years and I've never been sure if it actually did anything for me.  I think in the beginning it lifted some fatigue and made me feel slightly less “sickly” but I certainly did still decline while on it.  Also I've never heard of Plaquenil being a truly successful DMARD for anyone.  Everyone seems to be like me in that they may feel slightly better on it, but do not experience a significant improvement.  Please speak up, everyone, if my impression of Plaquenil is wrong, and you aware of any significant successes with it. 

In my layman's mind I look at it like this:  whatever minor effect the Plaquenil had on me is because it was developed to target an intracellular parasite (malaria) and perhaps it was affecting whatever intracellular parasite/bacteria I have (mycoplasms, c. pneumoniae…).  I stay on it now, because it is used in many combined antibiotic protocols, and perhaps it's effectiveness against the bacteria can be improved by introducing the other antibiotics.  Basically, it can't hurt! 

I'd love to hear other's thoughts on this Plaquenil issue too…I might be way off!

[lynnie_sydney]

Katie – that is such great news! Thank you so much for coming back to give us such an uplifting update. You might want to use the search function above for plaquenil. One interesting thread that mentions plaquenil was in a recent discussion on Lyme. I am wondering whether Lyme is a possibility in your case, as palindromic arthritis can be one of its manifestations. Here is the link and an excerpt from Maz's post towards the bottom of the page. Lynnie 

http://www.rbfbb.org/view_topic.php?id=3100&forum_id=1&highlight=plaquenil

Maz wrote:

Common cystbusting medications for Lyme include [highlight= #ffff88]plaquenil, Flagyl or Tinidazole and others. Essentially, where there are spirochete, there will be the microscopic cystic forms, too. This is thought to be how Lyme disease persists in the body. It is also thought to be the reason why some people are seronegative for Lyme, because the cystic forms present with diminished outer surface proteins. It is the “dormant” form of Lyme, so to speak, but it is also the form that causes the waxing and waning nature of Lyme, which is why short course of antibiotics do not work. It just drives spirochetes into cysts, then when the antibiotic is withdrawn and the threat is gone, they re-emerge into their spiral forms yet again. It's also one of the reasons Lyme Literate MDs use combination therapy – not just to hit coinfections of Lyme, but also to hit the cystic forms that cause persistence. 
 

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)

[NFASHIONISTA]

RB Gang,

Thank you. I needed to hear that kind of news today. I just wrote in asking how long will it take for all this to kick in and then went in and found your update.

I am getting scared and feeling some aniexty over all this b/c  I feel worst. I noticed you still took the clindy with the mino. My dr. did say something about me going back on that orally. I will have to inquire more this week on this. I am trying to hold on to the hope of all this since I am still in the early stages. You said yours took 3.5 months which is pretty good response. I hope mine goes as well.

God Bless and stay well.

 

nfashionista

 

[APbeliever]

I cant list the link for the website here for obvious reasons but you can search for askapatient.com and look for plaquenil or just about any other drug. It is a known DMARD and it helps a lot of people. Its benign as compared to some other drugs out there. The one thing I find repulsive about this drug is irreversible eye damage which is also discussed in Henry Scammel's book.

[Maz]

[user=1446]Kats[/user] wrote:

In my layman's mind I look at it like this:  whatever minor effect the Plaquenil had on me is because it was developed to target an intracellular parasite (malaria) and perhaps it was affecting whatever intracellular parasite/bacteria I have (mycoplasms, c. pneumoniae…).  I stay on it now, because it is used in many combined antibiotic protocols, and perhaps it's effectiveness against the bacteria can be improved by introducing the other antibiotics.  Basically, it can't hurt! 

Hi Kat,

Way to go!!! Was so happy to hear your great update and to know you're well on your road back. Thanks so much for sharing and do hope you'll remember to send us your testimonial when you feel ready so we can add it to the site. It's one of the best ways to pay it forward to others who are starting out and in a lot of pain and doubt. 😀

Michelle is right – plaquenil is classed as a DMARD, but as far as DMARDs go, it's probably one of the least troublesome in terms of side-effects. I took it for about 5 months (by which time it should have kicked in) and I'd have to agree that it really didn't do a lot of disease-modifying in terms of inflam or swelling in my case, but I was very severe. I stopped it cold turkey as I was getting some visual disturbances (aura migraines), but had no rebound whatsoever when I came off it – ** this may not be the case for everyone, so I wouldn't recommend the cold turkey route. In any case, I kind of wonder whether it was very effective in my case, at all, DMARD-wise. That said, however, Lynnie is right…plaquenil has got both Lyme cyst-busting (those pesky L-forms) and anti-babesial (a protozoan coinfection of Lyme that is malaria-like) properties. So, it is used quite commonly by Lyme docs as an “antibiotic.” Lyme docs, in general, won't use anything immune-suppressive, so I think that LLMDs probably believe that plaquenil has more disease-modifying props in terms of pathogen killing.

Kats, if it's working for you and you're happy with your protocol, then why not just stick with the plaquenil until you feel like you're in complete remission, physically and lab-work-wise, as you still need to work? With your doc's permission, you could then begin a slow wean and see how you go.

Thanks again, Kats! Great news and you rock! :dude:

Peace, Maz

[Kats]

Nfashionista,

I feel your fear and anxiety and I hope your therapy goes as well too.  3.5 is unbelievably quick to respond, and I hope it's not just a fluke. 

Re. the Clindy…I don't take it on days when I take Mino.  The dose I take is 1200mg split up into 4 doses taken throughout the day.  My protocol is entirely improvised so what seems to be working for me, might not be the best way to do it. 

You're in my thoughts!  XXX

APbeliever,

The New Arthritis Breakthrough is most certainly my go-to reference for AP, and I am fully aware of the risk of eye damage on Plaquenil but as with everything, I assess the risks and make informed descisions to the best of my ability.  The doses of Plaquenil perscribed today are significantly lower than in the days when eye damage was prevalant, and the risk of damage before 5 years on the drug is low.  I see an eye specalist twice a year, who has never seen Plaquenil eye damage, and I do at-home peripheral vision tests every month or so.  I feel fairy safe on this drug for the time being. 

As for Plaquenil being the reason for my recent dramatic improvements…I just don't think this is possible due to the length of time I've been on it (2 years), the only minor improvements I felt in the first few months, and the fact that this spring I began to rapidly decline into a typical RA pattern while still on the drug. 

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