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Posted 2/6/2014 8:11 PM (GMT 0)
I am new to this website and am grateful I found it. I was diagnosed in August 2013 after starting a new hormone(Minivelle) for hot flashes, four days later my knees swelled and my Rheumatoid Arthritis began!
My RA doctor started me on Celebrex-no change, then Prednisone-no change. She wanted me to start Plaquenil-I was afraid of side effects, same for Ariva (I may be spelling incorrectly). We discussed Humira, I am very frightened of the side effects, have done a lot of reading and there are good things about it too. We decided upon 21 day course of doxycycline 100 milligram 2x a day. I lost 10 pounds of swelling, my knees felt 75 percent better! I still needed my cane but it was a dramatic difference. within a week of my prescription ending, the swelling is back- my knees are so swelled I'm having difficulty walking, upon rising my fingers are swollen. In addition, I take many supplements-Life Extension Cytokine Suppress with EGCG, BIO Curcumun with Ginger & Turmerones and products for my immune system.

I really feel that the antibiotic regimen is best for me and I'm hoping my RA will agree-- I don't want to take the Humira, I'm afraid -- but, I would appreciate feedback and opinions from all of you on this website-- your opinion matters! Please tell me what you all think. THANK YOU

Post Edited (PinkCleome) : 2/6/2014 5:50:10 PM (GMT-7)

Posted 2/6/2014 9:33 PM (GMT 0)
There can be side effects with the biologics, but there are also a lot of people who don't have any side effects. In my opinion if nothing else has helped, it's worth a try. (Speaking from experience here.)

I was diagnosed in May 2013 and took methotrexate only with partial success. I had a flare in August and my rheumy put me on sulfasalazine (an antibiotic) along with the mtx with no success. After four months, she declared it a failure.

I started Enbrel (a biologic) at the beginning of January. I was reluctant; I even set out the Enbrel brochure the first time so my husband could tell 911 what I had taken if he needed to call. Now I sort of look forward to my "shot day" since I know it's helping. The improvement has been amazing.

By the way, welcome. I'm sorry you need us, but glad you found us. I hope you feel better soon.

Post Edited (Carole_D) : 2/6/2014 2:36:33 PM (GMT-7)

Posted 2/6/2014 11:45 PM (GMT 0)
Are you still taking the Minivelle? One of the side effects of Minivelle is extreme swelling. It seems odd to me that prednisone did nothing for the swelling caused by RA. What was your original RA Fsctor? Not saying you don't have it but this is an odd set of circumstances.

I have been on one biologic or another since 2004. They got me out of a wheelchair, I put the walker in the closet, and only occasionally need my cane!
Posted 2/7/2014 12:46 AM (GMT 0)
Thanks so much for the replies. No, as soon as I realized the Minivelle was causing it I removed the patch, I only had it on 5 days. Twenty three years ago I had fifth disease which gave me arthritis and swelling in my knees, I expressed to my Primary Care that I felt like I was infected again. So many blood tests were taken: for heavy metals, for lupus, even chlymadia! I was tested for the parvo B virus(5th disease) but it only showed that I had it in the past-it was not active in my body. My Rhumy suspected Lupus, Psariatic Arthritis, or RA. Every blood test came back negative. My first Sed rate was 8 on 8/31/13. My Sed rate was 30 11/20/13. The 10 mg prednisone unfortunately did not reduce my knee swelling.

Post Edited (PinkCleome) : 2/6/2014 11:13:45 PM (GMT-7)

Posted 2/7/2014 6:12 AM (GMT 0)
I firmly believe the fifths disease (parvo b virus) was triggered by the hormone and brought on the RA. I also have severe back arthritis, ankylosing spondylitis, ddd, djd, spinal stenosis.

This disease is awful. So many questions and not enough answers.
I do believe that hormones play a role too, RA affects so many women post menopause-are these women on hormones like I was?

Post Edited (PinkCleome) : 2/6/2014 11:19:16 PM (GMT-7)

Posted 2/7/2014 3:46 PM (GMT 0)
Antibotics are an older treatment that doctor's are using again, hope they help you. I cannot take this antibotic as I'm allergic to it, but I wish you success on it. However, please keep open to other medications should you need them, like the other poster said side effects do not happen to everyone and these medications have helped and changed peoples lives. Yes they are scary meds, but to not give them a try is also kind of giving in to the RA...Hopefully other medications will be coming out with fewer side effects...keep hope...
Posted 2/10/2014 4:37 PM (GMT 0)

PinkCleome said...
This disease is awful. So many questions and not enough answers.
I do believe that hormones play a role too, RA affects so many women post menopause-are these women on hormones like I was?

I'm pretty sure that my RA was triggered by stress. My husband and both of my parents had major illnesses in the year before I was diagnosed. I'm an only child so when each parent was sick, I was the support for the other parent. My dad contracted a staph infection in the hospital after surgery and almost died. He was released from the hospital in January and I started having problems in April last year. I'm still pre-menopausal, so no idea about hormones being a culprit.

I've been thinking about your original post a lot and I wanted to address the biologic question again. When my rheumy mentioned trying Enbrel, my first reaction was no way. But when I started looking at the effects of RA I changed my mind. The statistic that finally swayed me was that within 5 years of diagnosis, 30% of people with RA can't work. At 10 years, that number goes up to 50%. I decided to fight this disease with everything I can.
Posted 2/10/2014 6:16 PM (GMT 0)
I agree with Carol_D, we have to fight this disease with everything and anything that can work, the damage that RA can cause is worth this fight...RA is scary, the medications for it are Scary... taking mtx has me nervous, but, I'm on it and doing better on it, my swelling has stopped.
Maybe seek out further help with counseling and a internist type doctor...Internist's focus on the whole body and medications as a whole might be worth a talk.
Posted 2/11/2014 9:26 AM (GMT 0)
Hello, have you been tested for lyme disease ? I ask because you say you responded so well to Doxycline so quickly, and its this antibiotic that is used to treat Lyme. I was diagnosed with RA last year and I too chose the antibiotic protocol. The preferred antibiotic and the one I have been taking for 5 months now is Minocin. I am now almost pain free and swelling has nearly gone.
Posted 2/11/2014 1:43 PM (GMT 0)
I have taken both and had great success. Antibiotics I actually reached remission for 2 years.

Biologics are a bit frightening at first glance but I took enbrel for 12 years and it worked amazingly well. I was unable to walk when I started it and within 2 weeks it was like I had never had RA.

Whatever you choose there are possible side effects with both. Taking antibiotics can cause serious damage to the gut and exacerbate your health problems. Same for any of the NSAIDs like Ibuprofen. If you decide to use anti biotics I would really look into taking additional things like probiotics to try and keep the gut healthy along with modifying your diet Using something like gerson or fat sick and nearly dead.

Enbrel and other biological bring the C word to the table with things like lymphoma etc. if you do some research you will find that RA people are at an elevated risk of these already with no medications whatsoever. If there were an increased instance of these things we would hear about it because enbrel has been on the market so long. Also of the biological family it leaves the system faster than most others so if you do have an infection it is safer than others that take longer to get out of your system.

Whatever you choose I hope that it works well for you and that you have many many years of relief.
Posted 2/18/2014 5:48 PM (GMT 0)
PinkCleome, how are you doing? I hope things are ok (or, preferably, great!)
Posted 8/27/2014 3:05 AM (GMT 0)
Hello,
I have not been back on here for quite a while. My daughter got married, was busy preparing, etc.
My family talked me into Humira, I started in May. My course was due four days ago. I have had a few side effects, one being a cancer scare which was false, thank God.

I am battling a yeast rash since June. It is in three places on my body. Some are itchy, some not. Rhem doesn't think it's a big deal. Derm misdiagnosed it, gave me incorrect meds. GYNE said it is yeast. Last week I saw her and the script she wrote seems to be working, thank goodness.

In addition to rash I have no appetite and food is not desirable. When I eat, my stomach always becomes upset early on. I am very flat-depressed. I already take an antidepressant. I have unrelated back issues which keep me from being active and the knee swelling added to my inactivity. Walking my dog is impossible.

Humira is a catch 22. It has reduced my swelling, not entirely but a big difference. I don't always have to use cane, so people do not stare as much! I am still stiff when I getup after resting. I am always afraid of what may happen and the rash is ridiculous.

So, I don't know what to do.......Do I continue or not.
Posted 8/27/2014 3:17 AM (GMT 0)
I forgot to mention in January I became ill with flu, could not eat at all! That is why my swelling went away, not because of antibiotic! It is gut related, I believe that 100%…

Gut, hormones, sugar, stress-they all all contributors.....
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