Rheumatoid Arthritis Support Group
Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...
ashleymariecushman
Hey I have recently been diagnosed with RA. A synovial biopsy was conducted to confirm since all my blood work, RA factor, CRP and others were normal results but pain, joint erosion and swelling of a single joint persisted.
So far I have been on hydroxicloroquin for 3 months and humira for 2 months. No long term results have been evident, except immediately after humira injections. Reumy has suggested I increase my injects one per week, as compared to twice per month.
Prednisone and cortisone has showed no results either.
Does anyone else have this experience?
To top it off I am in the process of starting a family..
So far I have been on hydroxicloroquin for 3 months and humira for 2 months. No long term results have been evident, except immediately after humira injections. Reumy has suggested I increase my injects one per week, as compared to twice per month.
Prednisone and cortisone has showed no results either.
Does anyone else have this experience?
To top it off I am in the process of starting a family..
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In the years that I've been involved with RA forums I've read many posts by women who had a "honeymoon" period with their RA during pregnancy, then had the RA return with a vengeance after delivery.
Worth considering: RA is an inherited disease. Are you willing to take the gamble of having a child with RA?
If you are thinking of starting a family, stay away from Arava. I have been on it for 8 months, and the side effects said you have to off of it for at leaset 2 years, plus do some kind of cleansing thing for the blood.
As far as sero-negative, I am too. I was quite severe in the beginning with 0 everything. I was told I would be mild, so not treated properly. Now I have the most severe RA my rheumatologist has ever seen. So, make sure the docs take you seriously. And my disease is very hard to treat, because my anti-bodies destroy the drugs long before they are supposed to expire. If you hit it hard sooner, they say you will be less severe. Of course, I wouldn't know about that.
I do wonder at the prednisone not working. I thought it worked for everyone. It has tided me through many a drug failure.
Well, good luck with the family, and you might want to see an MFM doc to follow your pregnancy, with the drug issues. Let us know how you are doing, and when baby is on the way.
Some people are really resistant to meds with Ra. Means you "MAY" need a higher dose, usually to overcome the inflammation. It can also take time...many months if you are on the correct drugs. I'll give you a shortened version of why Humira might not work at all for you.
The reason we take biologic drugs is that the current theory of what causes Ra blames an immune system cytokine that gets turned on and then doesn't shut down after fixing what was wrong. Many cases of Ra are blamed on the factor called Tumor Necrosis Factor, an immune system factor that actually attacks tiny, tiny tumors that crop up in the body but once destroyed, the factor doesn't shut down. So they developed biologic drugs designed to inhibit the immune system from making more Tumor Necrosis Factor(known as TNF). Humira, Enbrel, Remicade, Simponi and Cimzia are all biologics for Ra that go after TNF.
But when I went on Enbrel, I grew benign tumors....I did not have excessive amounts of TNF!
I found relief on Orencia and that goes after T-cells. Other biologics go after other immune factors. So if Humira doesn't work(give it 3-6 months) you may not have TNF caused RA either and may need to try biologics that go after other factors. So it may not be that the drugs are working because you are taking the wrong drugs. But there is no way of testing for the excess factors in the blood other than giving you the drugs and seeing if they work.
As for prednisone....it's a type of cortisone in pill form. That really is a dosage problem. Pills don't help me much but I do get good relief from a steroid in shot form right into the bad joint.
Oddly enough, pregnancy used to the temporary "cure " for Ra as it seems to stop or greatly slow down all symptoms. I've never heard a good explanation as to why.
Make sure your OB knows what drugs you are on and you might want your OB to okay you getting pregnant on those drugs. You CANNOT take methotrexate(MTX) as it used to used as an abortion drug. Rheumies usually know what is safe and what isn't but I always cross checked with my OB. I got Ra between my 2 babies.
I would never not have kids due to RA. Yes, my kids are prone to auto-immune disorders and my son has had 1 finger joint go red and hot and my daughter has ulcerative colitis but who's to say they wouldn't have gotten those problems anyway? The only case of Ra anywhere in my family is not a blood relative...she married my cousin. I am case #! for both sides of my family. Besides, researchers are getting closer and closer to an actual cure for RA.
You are just going through the same thing most of us have had to endure.....figuring out what helps. I've been at it for 39 years and I'm still searching for "my" silver bullet.
Someday in the future, when someone gets symptoms of RA, a simple blood test will tell them if it's TNF initiated Ra or maybe B-cell initiated RA, etc.,and the correct biologic will be started and RA will be shut down immediately...maybe to never come back? That is the goal! But we aren't there yet. But I can tell you, it's a hell of a lot better than what was available 39 years ago when I got RA.
hugs.........Jen