I'm definitely ready for something that is going to relieve my symptoms and get me back to a "normal" life. (Even possibly the magical world of remission!
I'm quite sensitive to medications in general and don't tolerate them well. Or, if I tolerate them at the beginning later on down the road I develop intolerable side effects. Based on previous reactions, I can definitely no longer take A) TNF blockers and B) NSAIDs. (I tend to include steroids as well due to intense mood/behavioural(sp) changes.)
I was watching an RA video I had not seen before and noticed an ad for a "new RA medication" called Cimzia. I got all giddy because it was one I hadn't heard before and immediately popped it into google. Turns out it's another TNF blocker. This med is not an option for me. Still, I thought I could bring in to the group's attention in case TNFs work for some folks and they were looking for a new one.
Anywho.... I looked up TNF blockers and came up with this list:
Has anyone had experience with this medication? From what I read, a lot of the members in the drug trial dropped out due to injection site reactions. The drug is administered daily (every 24hrs) and the ISRs last 2-4 weeks. Could you imagine what your thighs, stomach or arms would look like after a week or two? Geez!! Anyhow, I'd still like to know if any of our AI family has taken this med and how it treated them. It seems to be a faily new drug??
This is as far as I've gotten. I've done quite a bit of reading this morning (which is difficult when you're medicated as you know! haha) but it still doesn't seem like much, does it? It's definitely slow-going. I'm leaving research for the infusion-type drugs at the end of my list due to the high cost. Even with insurance and the assistance program, our out of pocket costs would be unaffordable.
And sorry if I'm all over the place today with my thoughts. (I blame the meds!
Oh, and I've already tried methotrexate, plaquenil and most recently arava. I'm currently on the lowest dose of imuran (which I should be restarting tomorrow, fingers crossed.)Mel, I am sure you have seen this, but I will offer it just in case...
http://www.arthritistoday.org/treatments/drug-guide/index.phThere are soooo many drug options that it can be nothing
but confusing!
Even though I was getting relief with this combination, I had to give
up the antibiotics after going back on post surgery, because of continued yeast infections despite the
amount of good yoghert I ate (and still enjoy
think Carl Segan here) of good stuff at 50$ a bottle. I believe some
of us are just more sensitive to this pitfall than others! I think if
my RD had been more versed in this protocol, I may have been able to
continue with a few adjustments, and I still think it is an effective
treatment for some, especially in combination.
I am currently on high Omega 3's, Humira, (which is driving my sinuses
Peace, girlie girl! Don't strain your eyes and I wish you luck in your search! Let me know if I can help. I am glad you are on the mend!
This is a topic of interest to me because I cannot take the biologics. Every two years my MTX dose goes up as I build tolerance towards it. So far the liver function tests are normal. [Whew!]
What works for me is to get a Kenalog injection in the joint very soon after a joint begins to flare. This seems to keep everything else at a status quo.
However, even if this method continues to work, there's going to come a time when my liver won't be able to handle the MTX. I'm hoping there will be something else on the horizon then.
Hi Mel.
For over two years now I have been on a combination of plaquenil and antibiotics (AP, antibiotic protocol - minocycline). I saw my rheumatologist this morning. Two years ago it was hard to roll over in bed. Now, it would be hard to guess there is anything wrong with me.
I am also a strong believer in the combination therapy. When I started the plaquenil I was on 400 mg/day. My doctor cut me back over time, as the inflammation diminished, and this summer she cut me back to just one 200mg pill on Saturdays and Sundays. I take the antibiotics on M,W,F -- just once/day. It's working. My Rh factor is down by 50%, and my other high marker (SSA-B), while still very high, is down hundreds of points. And most importantly -- no visible signs of inflammation, and I feel pretty good. It's not perfect -- I still need more rest, and I still have some issues with my right hand and left foot -- but I have my life back. I haven't used any NSAIDS (used to take celebrex daily) in a long, long time.
I also take lots of supplements (fish oil, probiotics, vitamin C, DHEA, bioidentical hormones, resveratrol, MSM, multivitamin, calcium) for their anti-inflammatory properties and general health. I eat a very healthy diet -- (breakfast was oatmeal, raisins, walnuts, flax seed and soymilk -- lunch was chicken, whole wheat bread, broccolini, yellow peppers & grapes -- you get the idea -- No Junk!) That's hard, I know -- but you either feed the disease, or you arm your body with the tools it needs to heal.
I hope the new medication works well for you. I would really ask your doctor about adding the minocycline if you haven't tried that yet. It's very affordable - you don't have much to lose.
Bonnie Lou
Bonnie Lou,
Great post!
Interesting that most of the people I know who eat healthy (no junk) & watch their dairy intake are the ones who appear to have the least amount of inflammation.
I agree that if you have tried most & now, for whatever reason, you have a problem with those types of meds you have to look at an alternative that won't spark a reaction; if then you are loioking at combinations I agree that mino may be the best alternative to try because people rarely have a problem with it, but if you have any doubts at all about mino you could take doxy instead.
Thank you, all, for responding! I have made a list of all the supplements and vitamins to take with me to my RD visit in Dec. I kinda had to take a break from google earlier because I felt drained, but I think I'm on the upswing again so I'm gonna get back to researching.
I'm going to ask about adding the sups/vits and also about low-dose mino. My main concern with adding an antibiotic is that I am allergic to penicillin and use the other antibiotics for "normal" illnesses. I know in the past I have been prescribed mino, doxy, z-packs, etc., for infections. In helping with RA symptoms, I don't want to sabatoge myself if any infections occur in the future.
I guess no one has had any good experiences with Kineret?
Trying to recover from the drama and confusion in other threads,
Mel
If you are taking abx MWF & not daily there shouldn't be a build up in your system ... plus remember, there are other things you can take other than penicillins & tetracyclines !
I'm currently on Orencia which is a B cell inhibitor, not a TNF inhibitor. I am doing very well so far, about 3 months, with no noticeable side effects. I also had some trouble with TNF inhibitors including a rather dramatic allergic reaction to Enbrel.
Alan
The reason I cannot take the biologics is because I have latent TB. So Orencia and the more commonly known TNF inhibitors are not a good choice for me.
I understand for people who are LTBI [Latent TB Infection], the general protocol is to get them started on the TB drugs BEFORE starting the biologics. Problem is that unless you have active TB, which I do not, it's not recommended that people over the age of [50?] get the TB treatment because of how hard the TB drugs are on your liver. By that time your liver has already seem some wear and tear.
But I feel confident that in the next ten years the pharmaceutical companies are going to come up with a whole new arsenal of treatments.
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