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Hi Everyone,
I just met a 35 yr old fellow named David who has Psoriatic Arthritis and has had it for about 9 yrs. He is an athlete and former collegic pitcher. He is now on Embrel and appears to be doing very well, though he said he is afraid of getting cancer from Embrel. I mentioned AP to him and said it was safe and is essentially like the treatment of minocycline used for decades for teenagers with acne. He then interjected that he was one of those teenagers and was on minocycline for years. Then, interestingly, he mentioned that his doctor said that is why he got Psoriatic Arthritis!
I strongly recommended David to check out the RBF site and search, post, etc.
Does anyone have any positive experience with AP for Psoriatic Arthritis?
Diffuse SD since Apr '07
AP since Feb '08
100mg Mino twice daily
Stopped Clindamycin IVs Aug 2019
"No one should profit over someone else's illness"Hey Randy
My brother has Psoriatic ARthritis and I put him onto AP. He is now off all meds and just mino. I don't know if it was severe or not and its like pulling teeth to get any info from him. But I will make him eternally gratfull to all at the RBF site in due course because he never new about it!!!
Annie
[user=223]Randy[/user] wrote:
Does anyone have any positive experience with AP for Psoriatic Arthritis?
Randy, you might want to connect with “Todd WI,” who has psoriatic arthritis and, if memory serves, he's doing pretty well on doxy.
Glad to hear your chest rug continues to thicken! :roll-laugh:
Peace, Maz
I've been treating my Psoriatic Arthritis with Minocycline since June of last year. I started at the 100mg twice daily dose and responded very quickly. I stopped MTX the week I started Mino and weaned off Prednisone in 30 days. I also use Diclofenac on an irregular basis. In recent weeks I have tried pulse dosing, but get back into pain. Psa tends to move around a lot and new area of tendon inlfammation arise with pulse Mino. My current treatment level is 100mg Minocycline and 50 mg Diclofenac daily. I am pretty much symtom free on this treatment schedule. I am 65 with the attack starting in Dec of 2007.
vinny
Psoriatic Arthritis: 100mg Minoz Minocycline TABLET daily; twice daily 400mg Pentoxifylline;125mcg Levotyroxine: Have been using some level of Minocycline since 2008
Randy – Craig Cobb (from Australia) was one of the the AP network contacts for Road Back when I first came to the Forum in 2003. He had Psoriatic Arthritis and I had quite a correspondence with him. He'd had great success (was in remission) with 100mg Minomycin (Aussie brand of mino but not pelleted) taken MWF. I think he may have also undergone changes to diet. Lynnie
P.S. How on earth could his doctor have made such a statement?????????? I would have asked for some information on this.
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)Hi Randy,
I appoligize for not responding sooner. I saw your thread last week, but didn't respond as I was trying to sort some things out for myself.
If you had asked me a few weeks ago I would have told you I was on my way to becoming a poster child for AP. I started 14 months ago and within just a few weeks of starting I started having “mini-remissions” where things were greatly improved. Over the 14 months, the mini-remissions came more often and stayed longer. I was definitely beating this thing. And I often forgot I had the stupid disease.
But the last few weeks have been tough. Instead of taking the proverbial “one step back” I took them all back. For the first time since starting AP I was forced to break out the crutches because of a swollen ankle. This is without a doubt the worst condition I've been in since starting AP. So is it disease progression or some form of herx? Is it the vitamin D? Is it my diet? Will I come out the other side with new and better improvements? I wish knew.
There is definitely something to AP when it comes to my disease (i.e. PsA), but I'm not yet a poster child.
Todd
Todd
As you can see from my post, I have tried various schemes on AP and find it most effective when I also use the prescription nsaid Diclofenac. The Diclofenac seems to be the most effective and I have tried all of the otc kind. Do you use any nsaid's? For the month of May I plan to keep a constant treatment plan of 100mg Minocycline in the am on an empty stomach and 50mg Diclofenac with supper. At the moment that treatmant plan is keeping me pain free. I also do a bunch of dietary stuff, but don't have an opinion if it helps, other then it makes good sense. I also supplement some vitamin D on days that I don't get any sun.
vinny
Psoriatic Arthritis: 100mg Minoz Minocycline TABLET daily; twice daily 400mg Pentoxifylline;125mcg Levotyroxine: Have been using some level of Minocycline since 2008
Hi Vinny,
I take Aleve when I have inflammation in large joints like knees and ankles. It seems to help a bit, but it never did anything for me for inflammation in small joints like fingers or toes. I've never taken Diclofenac.
Aleve is hard on the stomach. One of the best things about AP was that my knees and ankles had improved enough that I didn't need the Aleve anymore. So much for that.
Its interesting that you found the daily dosing worked better for you than pulsed dosing. I started on daily dosing and eventually switched to pulsed, I think I did better on the daily dosing as well.
Todd
Todd
I've given up on the idea of remission on this disease and focus on daily treatment. In my case the Diclofenac certainly makes the Minocycline more effective, especially in my big joints such as hips, shoulders and knees. Can you get a prescription for Diclofenac? I think it will be well worth trying for you. Here is a link on Diclofenac:
http://en.wikipedia.org/wiki/diclofenac
Also you may want to return to daily dosing on the Minocyline along with the Diclofenac to get your ankle inflammation under control to get functional again.
vinny
Psoriatic Arthritis: 100mg Minoz Minocycline TABLET daily; twice daily 400mg Pentoxifylline;125mcg Levotyroxine: Have been using some level of Minocycline since 2008
[user=223]Randy[/user] wrote:
Hi Everyone,
I just met a 35 yr old fellow named David who has Psoriatic Arthritis and has had it for about 9 yrs. He is an athlete and former collegic pitcher. He is now on Embrel and appears to be doing very well, though he said he is afraid of getting cancer from Embrel. I mentioned AP to him and said it was safe and is essentially like the treatment of minocycline used for decades for teenagers with acne. He then interjected that he was one of those teenagers and was on minocycline for years. Then, interestingly, he mentioned that his doctor said that is why he got Psoriatic Arthritis!
I strongly recommended David to check out the RBF site and search, post, etc.
Does anyone have any positive experience with AP for Psoriatic Arthritis?
I do not have psoriatic arthritis, but I do have a skin condition I highly associate with my arthritis. I also was on ABX for years due to it. While I do not believe the ABX causes the arthritis, I do think there is some kind of correlation to skin issues and arthritis because I have read many comments from people who have had “bad” experiences with Accutane who later have arthritis. I don't think it is the Accutane, but again the underlying link in skin issues and arthritis. I get very annoyed when doctors “make claims” as if they are fact when they are mere speculation. Why do they do that?
Whatever the case, this thread makes me wonder if these forms of arthritis are not a bit more difficult to get to respond to ABX. I certainly am not getting the results I had hoped and have become very discouraged in the last 4-5 months.
I had my best results on daily dosing, but I have lost ground ever since. Lately I have been thinking of trying that again (among other ideas). Does anyone daily dose and also take another ABX like Zith or Clindy?
Todd and Vinny, thanks for posting your experiences. I am right there with you. Lately I have been taking ibuprofen every day, and I worry about it. It helps some, but does not always get me back in the swing, and I feel a slippery slope of needing more and more that I am extremely concerned about. I see my doc tomorrow, and she is going to pressure me for another plan. Wish I had one!
Tiff, I have regular RA but changed my protocol to mino 100mg, M,W,F and zith 250mg Tues and Saturday. It's only been month like this, so we'll see how it goes and I'll let you know. I know what you mean about the dread of backsliding and feeling bad all the time, but hopefully, this will pass. I've been taking motrin 2xday but am not that worried about it yet. I know if I don't keep the inflammation down the AP is not going to work. I get really tempted to up the pred but so far have kept it low. So consider a change up if you need it. Hopefully, your Dr will help. Take care!
Lizz,
Thanks for the feedback. Please keep me posted as to how you respond to the doses you are taking. The only positive thing I can think is that my pain is still highly migratory and volatile which tells me it is being influenced by the ABX and not completely settling in. However, the frequency and joints involved have increased (meaning the joints affected at one time), and it is so unpredictable that it is pretty much impossible to live life around it. For example, the other day my jaw became completely unusable right smack dab in the middle of making a very nice dinner I was really looking forward to eating. Crazy.
Hello, i'm a new member. I have psoriatic arthritis, and am trying to find someone to treat me with the AP. One rheumatologist wanted me on mtx, another on a biologic.
I have declined both. The last dr. indicated he may be willing to try minocycline, but not the clindomycin.
Has anyone had results from the mino. alone?
[user=1345]rcp[/user] wrote:
I have psoriatic arthritis, and am trying to find someone to treat me with the AP.
Hi rcp,
If you'd like an AP doc listing for your state, just let me know where you're located and I'll send you a private message (PM) with this information.
Search tip: if you type in “psoriatic arthritis” or “PsA” in the search box above, all the discussion threads relating to these search words will come up for you to browse. 😉
Welcome to the RBF support forum!
Peace, Maz
Also, please dont forget the old board – there are lots of archived posts there going back to 2005, before we changed to this new board format. You get to the old board by following this link: https://www.roadback.org/cgi-bin/eboard30/index.cgi?board=Main
Once there, click on search, then type in 'psoriatic arthritis' and, after a couple of minutes, loads of posts on this topic will come up. I have copied and pasted below one from Craig PA from 2005. He used to be an Australian network contact for Road Back when I first came to the Board in 2003. He had great success with AP and diet. Lynnie
In Reply to: Psoriatic Arthritis posted by Phillip on Sat – Oct 1 – 04:02am:
Hi Phillip
I also suffer from Psoriatic Arthritis and Psoriasis. I believe a lot of my Psoriasis problems arise from a ?Leaky gut syndrome? (my opinion only) and I have proved this in relation to consuming certain foods and the immediate reaction they cause to my lesions.
Also going off methotrexate will cause this disease to flare as this drug is very good at suppressing Psoriasis. If I can make a couple of suggestions?
Purchase the following book and visit the following site which has a wealth of information in regards to Psoriasis.
Book: Healing Psoriasis ISBN 0962884707
Web Site: http://www.psoriasis.org/home/
Regards,
Craig PA
AP Feb 01Be 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)
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