P.S.A ?

[Cherie]

Hi Everyone,

Just wanted to find out if anybody got the arthritis first and then the psoriasis second like me. When you went into remission and your arthritis was gone did the psoriasis stay? I only have on it my scalp and elbows, but even that I can't stand.

My doctor told me it was hereitary but the only person that I know for sure had psoriasis was my uncle, and he had it all over his body, but he never got arthritis.

Thanks! for any information

Heather

 

[vinny]

I had no skin psoriasis before my arthritis attack in dec 2007. The prednisone I used until july 2008 may have been the cause of the skin involvement. I had psoriasis on scalp, around ears, eyelids, nails and acne develop on my back. None of the skin issues are problematic at the moment, but don't totally clear up either. In June 2008 I started on 100mg twice daily Minocycline and 50mg Diclofenac. I stopped the Methotrexate the week I started Mino and weaned off Prednisone in 30 days and have not had to use Prednisone again. My arthritis sysmtoms are under control, but I am not in remission or cured. I have pain and inflammation build into my spinal column if I decrease the the Minocyline to less then 100mg M,W,F, which I am currently doing and using 50mg Diclofenac on the alternate days. I have no known genetic link to have psoriasis, so beleive it comes from an infectious cause in my case, probably a hospital acquired staph infection.

vinnylid

Psoriatic Arthritis: 100mg Minoz Minocycline TABLET daily; twice daily 400mg Pentoxifylline;125mcg Levotyroxine: Have been using some level of Minocycline since 2008

[jims]

I didn't have psoriasis until I was on Remicade for several months. I have no genetic markers that have been found and have no known family members with Psa. My psoriasis has about gone away now, but I still have swelling in joints. I am much better now than when I started Mino. I also think the LDN is helping my mood and sleep. I dropped my pred down to 7.5 about two weeks ago and that seems to be holding!! I have seen on another post that you support LDN, are you on LDN? As you probably know only a small percentage of folks with psoriasis develop Psa. And you can have the arthritis first then the skin involvement. Do you have nail pitting? All the best, jims:)

[vinny]

I used LDN for 11 months and consider it to be very helpful to reduce nsaid and minocycline use. I have been off LDN a month now for blood pressure concerns. There is a concern that long term LDN use can increase cortisol levels. My blood pressure has come down some, but still is not acceptable. The Norvasc is not as effective as it once was. Not sure what to try next.

vinnylid

Psoriatic Arthritis: 100mg Minoz Minocycline TABLET daily; twice daily 400mg Pentoxifylline;125mcg Levotyroxine: Have been using some level of Minocycline since 2008

[Cherie]

Thank-you so much for your reply, it was very helpful. I too have a lot of inflammation, if I go above 100mg of minocin m.w.f I go into a terrible flair. I've never used prednisone, I was only on sulfasalazine which I had a terrible allergic reaction too, and methotrexate for almost a year before I went on minocin. My year will be coming up in March so I'm hoping good news when I see my rheumatologis in April.

 Thanks, Heather

 

 

 

 

 

[Cherie]

Thanks for the reply, I didn't  know that Remicade could trigger psoriasis glad I never went on it. I too am better since being on minocin. Yes I'm very interested in L.D.N as a possible pain medication so I can quit the advil, motrin stuff before there's damage to my joints. I've read other posts here where people stopped all pain medication and are only on ap, and l/d/n. I'll ask my rheumy in April when I see him to let me try L.D.N, I hope he knows about it. In the beginning I had nail pitting but now it's gone since I've been on the minocin.

Thanks, Heather

 

 

[Cherie]

Hi,

Sorry that you had to stop taking the L.D.N, since it was working for you. I read another post somewhere that you should start out taking the minocin first for about a year and then start l.d.n, maybe it is suppose to be short term, but I'm thinking if it works for me maybe by that time, I'll be in remission and can stop it. I'll keep my fingers crossed. I was thinking I would start a low dose, in stead of taking 4.5mg, I'd take 3.5mg, do you think this would be better? I hope you get your blood pressure normalized. Exercise is suppose to be very good to normalize blood pressure a little is better than nothing. I do the walk at home video, I try to get my 3 to 4 miles a day with Leslie, at first it hurts like mad, but after I feel better and am more flexible can even do stretching exercises with Callan. I don't know what too tell you about trying next, if doesn't work for me, I don't know what to try next.

Take care, Heather

[Cherie]

Hi,

I was wondering is Lyme disease only contracted by people with r/a, or can anybody with an arthritis type contract it?

Thanks!

[jims]

That is a different way to look at lyme; that a rheumatic disease is a trigger for lyme. I think if you read most of the posts here they support the idea that lyme( called the great imposter) is an underlying factor for RA. I have read over and over that if lyme or coinfections are present and dealt with that the arthritis will subside. I hope very soon to be tested for lyme at Igenex. Thanks Vinny for the blood pressure caution on LDN. I will check that out. jim 🙂 P.S. This board has some folks who know allot more than me about lyme, maybe one of them will chime in. If you are curious about it, in the meantime type in lyme on the search bar at the top of the page and you will find a wealth of information. (It is one of those topics that you can read on and on and on about,kinda of like my post!!!)

[Trudi]

[user=2022]Cherie[/user] wrote:

I was wondering is Lyme disease only contracted by people with r/a, or can anybody with an arthritis type contract it?

Lyme triggered my RA.  Being put on the AP protocol brought my Lyme to the surface by way of the bulls-eye rash.

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?

[jims]

Hi Trudi, so you are saying that the Lyme was already there and after you started AP you showed a bulls-eye rash? That would indicate the possibility of a long period of time going by after the initial infection and when the rash appears then the lyme becomes active? The introduction of the AP started a process that allowed the rash to manifest? I have read theories that there are many ways to contract lyme other than just ticks. Makes me wonder what the real number of infections are. jim:)

[Maz]

[user=2022]Cherie[/user] wrote:

I was wondering is Lyme disease only contracted by people with r/a, or can anybody with an arthritis type contract it?

Hi Cherie,

Lyme disease (correct name: borreliosis) and other associated tickborne infections are passed by the bite of a tick. Some physicians also believe this serious set of infections can be passed by other insect vectors, like mosquitos, biting flies, mites, fleas, etc, as well as from mother infected by Lyme to her baby, cross-placentally, or sexually between partners.

Ticks feed on all kinds of animals in their 2 year life span and they will pick up any infection that wild and even domesticated animals may be carrying. Then, when they finally attach to a human, these infections get passed to us.

Whoever gets bitten by a tick that is infected with Lyme or other tickborne infections (like babesia, bartonella, erhlichioisis, anaplasmosis, etc, etc) can be passed these infections.

Not everyone who is bitten by a tick will become ill with a rheumatic disease and most people, if they are lucky enough to see the bulls-eye rash and have a quick doc who picks up on their flu-like symptoms, recognizing the possibility of Lyme, or testing positive on standard tests, usually receive treatment early and get well again. Lyme, however, can also remain latent (dormant) for many years or even decades, people never see a tick or a bulls-eye rash and it can be very difficult to make the connection to Lyme. Chronic Lyme can remain quiet in the body until something sets if off, like a surgery, a shock, an accident, prolonged stress, etc, and then it erupts and manifests as a rheumatological, neurological and/or cardiac problem. There are people here with RA, palindromic RA, scleroderma, dermatomyositis, polymyositis, psoriatic arthritis, mixed connective tissue disease, undifferentiated connective disease, spondyarthritides, reactive arthritis, chronic fatigue, fibromyalgia, raynauds, etc., who have Lyme disease and believe it was the primary trigger for their rheumatic disease. In my case, I got Lyme, had two bulls-eye rashes, tested negative on standard tests, and within 2 months I had very severe RA. Not everyone is this “fortunate” to make the connection, because not everyone sees a tick and only 50% of those bitten by an infected tick will get a rash.

No one really knows why a small percentage of people will develop “autoimmunity” as a result of Lyme, but there are various theories that include genetic make-up, pre-existing pathogen load combined with Lyme, the coinfection bacterial load passed by a tick, more virulent strains of borreliosis than others, pre-existing environmental toxic load…the list is pretty endless.

The list is also endless as to how Lyme may manifest, because it is a spirochete, much like syphilis. It's corkscrew-shaped and can drill into any body tissue, quickly leaving the bloodstream and moving deep into joints, muscles, ligaments, tendons, nerves and all organs. This is one of the reasons it can be so hard to diagnose, because, as Jms said, it's called “the second great imitator” (the first imitator being syphilis), because it can look like so many different diseases.

The other difficulty with Lyme is that the testing is notoriously inaccurate and, because it can be so immune-suppressive, not everyone will produce enough antibody to test…so this complicates diagnosis further. This is why many folk will pay out of pocket for more sensitive testing to be run…even with more sensitive testing, however, there is no quarantee of a positive result, which is why Lyme must be a clinical diagnosis by a physician specializing in Lyme, called “Lyme Literate.”

So…yup…Lyme and coinfections can be the trigger for all kinds of arthritis, which can range from mild to very severe, seropositive or seronegative, highly inflammatory or non-inflammatory, non-destructive types of arthritis and very destructive forms.

Sorry to blab on…I get carried away sometimes. :blush: 

Peace, Maz

[Maz]

[user=1054]jims[/user] wrote:

Makes me wonder what the real number of infections are.

Hi Jim,

This is exactly what my LLMD thinks…that there are innumerable folk out there who are completely asymptomic and carrying Lyme for years (possibly a lifetime) who may never realize it, as well as countless folk who are seriously ill with rheumatic and neurologic diseases who have been misdiagnosed with “idiopathic” disease.

The kind of rash Trudi had happens sometimes in late, disseminated Lyme, occasionally after antibiotic therapy begins (as a herx manifestation) or sometimes in untreated chronic Lyme, too. I think I was infected about 12 years ago, after I found my first tick, embedded in my scalp. For years, I had strange, unconnected symptoms…migraines, muscle twitches, heart irregularities, chronic fatigue, greater susceptibility to passing viruses, and others, that would wax and wane and to which I never saw as being connected in any way, as they would rarely all come at once. It was when I was going through a period of great stress that my two rashes suddenly appeared along with a very stiff neck and swollen glands…felt like flu without the cold symptoms. Within days, the pain in the balls of my feet was hard to ignore when I got out of bed in the a.m. Then, a couple weeks later, the incredibly debilitating palindromic arthritis and myalgias started along with a severe chest infection….so PRA was so bad I could not lift an arm or put my weight on a foot. It would come and go within 24 hours and move to a new location. Two months after spotting my rashes (which took about a month to fade), the fixed pain of RA began in all my joints.

I've had discussions with my LLMD about the Jarisch-Herxheimer reaction, which was first described by two guys Jarisch and Herxheimer, in patients who were suffering from syphilis and had a worsening of symptoms when they first began antibiotic therapy. Strictly speaking, “herxing” only applies to spirochetal infections in terms of its original definition. However, the “herx” has been applied to other infections that may produce die-off and circulating antigen/antibody complexes that produce similar symptoms. It's arguable, however, whether someone who is suffering from die-off from Chlamydia pneumoniae is really suffering from a true herx or porphyria. This is also the case with mycoplasma infections…what Brown described actually described was an ongoing “bacterial allergy” that resembled herxing. Herxes, by definition, should only occur at the outset of treatment, but Brown noted that patients continued to have exacerbations and that it was more a question of rheumatics, in particular, being hypersensitive to intermittant releases of antigenic toxins…not a herx, per say, but that these patients were suffering from a kind of allergy to myco-toxins. This rings true to me, because over half the world's population harbor some type of mycoplasma and receive antibiotics at some point and don't herx or suffer from rheumatic exacerbations….this weird bacterial allergy only seems to happen in rheumatics who are particularly hypersensitive. This is akin to two people being exposed to pollen, but only one being allergic to the pollen.  

Really, whether herx, porphyria or bacterial allergy, it's probably a question of “a rose by any other name would smell as sweet!” Whatever the name that is put to it…herxing just plain sucks!

Peace, Maz

[jims]

Maz, soon it will be time for you to write a book! Thanks for all your knowledge, Jim:)

[Cherie]

Thanks for your replies everyone.

Thanks Maz,

Thanks to you I understand Lyme better now. Maybe I got bitten a long time ago and don't remember. I think I'll get tested to find out, then I'll know for sure what caused it to come out.

Your invaluable.

 

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