Enbrel and AP

[APbeliever]

Hi, I was wondering how many people here are on both Enbrel and AP? I know there was this one guy here that was on Enbrel and Mino but I cannot seem to get any responses from him regarding his experience. Anyone care to share their experiences using both drugs at the same time? Please share as I am thinking of trying them together to stop joint erosions.

[Maz]

APB, Susan with RA/Lyme has just returned from a vacation and has posted today. She's been on Enbrel for a year or so and am sure she'd kindly share her experience of it with you.

Peace, Maz

[Tiff]

I am on mino and Orencia, and some other stuff too, for that matter. I have been planning on posting an update, but haven't gotten around to it as I have been so busy, but I will do so soon. PM me if you would like information.

[lynnie_sydney]

Hey Tiff, I was just thinking about you yesterday and wondering hopw you were doing. Great to “see” you, looking forward to your update. Take care, 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)

[APbeliever]

Hi Tiff, I see that you are from Texas too. I am from Dallas area. I would like to know your feedback regarding Orencia and Enbrel. I was told to take Enbrel recently by Rheumy due to joint erosion. I have been on Mino for more than a year (without any success) and Low Dose Naltroxone for five months now. I cannot seem to get away from the flares and pains and now desperately need some relief. I am also interested in Orencia since my insurance will give me Orencia fairly quickly. How is your overall experience with Orencia so far?

[APbeliever]

Reading the patient's stories on this link made me realize that I need to stop joint erosions asap since xrays did show some damages recently. :crying:

 

http://www.revolutionhealth.com/drugs-treatments/rating/enbrel?page=2&view=treatment

[Tiff]

I always want to wait until I can be really definite about the results, but reality is that things are never that clear! This time last year I was really getting worse. I had been on AP and/or MP for about 3 years and although I had a 4 month remission on daily mino, it had long ended and I was clearly moving from Palindromic RA to classic RA. The only blood tests that were ever off were my CCP, RF, and I was anemic. All that was getting steadily worse. I felt horrible and was mostly housebound if not bed ridden.

The first two months on Orencia were awful. It was so bad that I finally broke down and took prednisone so I could even travel the 150 miles to see the rheumy that prescribed the Orencia (I was getting the IVs locally with my very sweet oncologist who had been helping me with AP and MP). I popped right up on the prednisone (I was on 10mg/day).

Within a couple more months I was fully functional. We moved, in fact, during that time.

Since then I have lowered the prednisone to 4mg/day and am working on lower even more now. I never did get rid of every bit of flare. I have some very tiny ones and an occasional worse one each month, but they have decreased in general to hardly noticeable (except they make me worry). The anemia is gone (was gone nearly immediately, even improving while I felt awful). My RF has dropped by about 20 pts from 74 to 54. Haven't taken the CCP again, so not sure about that and don't expect much change as it was over 250 before. I had a brief flare in my white count, but that has since corrected. All other blood work is normal.

I feel so much better. It is more than just the joint pain. I had no idea how lousy I felt even before the joint pain started 5 years ago. I could NOT get up in the morning, now I can and I am working 2 part time jobs, plus volunteer work. We went to Italy in May and I walked MILES every day and horseback rode in the mountains. I exercise regularly again, including weights, which is really good because I lost bone density on MP (grrr). My hair and skin have improved and I look a lot better (from the pictures).

And yet “remission” in the total sense is not what this is (yet?). I do not know what to expect, so it is always scary. I am all too aware the focused, migratory pains are still with me, albeit so faint that they are laughable compared to the Palindromic appearance of this monster (Lynnie, you know just what I mean, don't you?).

I can't say that I am having any side effects from all these meds, and it includes 20mg of MTX per week. The Orencia/MTX combo has shown to be hugely more effective than either alone. I also take 100mg/Mino per day for my skin *wink wink*. My skin is so bizarre. Like the other symptoms, it is nearly perfectly clear, but I have a few stubborn areas on my chin that REFUSE to clear up and remind me I am never going to be normal. They also keep my doctor willing to give me Mino though, so….

So it is possible to combine all this stuff. I had an eye exam recently and all was well there. My hair may be thinning, but it is really hard to tell since I have fine hair that thins easily and it runs in my family, so who knows. Right now it looks better, much better, than it did when my vitamin D was really low. Oh, I also take 3800mg D per day, fish oil, glucosamin/chondroitin, turmeric, milk thistle, folic acid, calcium/magnesium. Now that my weight is stable (I gained about 10 much needed lbs), I may be able to try some dietary things again, but I am not sure where to start. I mostly just try to avoid too much sugar and eat “whole” foods generally.

There it is, make of it what you will. It is good to be back and see everyone again. I have to catch up though! I'll post a few pictures when I get more time, too.

PS
A hand MRI before treatment showed no permanent erosions, but LOTS of inflammation which I knew very well because of all the pain. I attribute the 4 years of no joint erosion to the Mino, but it was still not enough for me, and I was getting worse over all.

[lynnie_sydney]

[user=45]Tiff[/user] wrote:

I am all too aware the focused, migratory pains are still with me, albeit so faint that they are laughable compared to the Palindromic appearance of this monster (Lynnie, you know just what I mean, don't you?).

My word I do Tiff…..so very glad that they are gone and that you have so much of a  life back. I know just how difficult a place you've been in. May things keep getting better for you, Tiff. 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)

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