Hi Bluegal62 - I'm new to the RA world too and just starting out myself. I'm going to be starting Plaquenil this weekend and I'm really nervous. I hate taking medications and rather not start P but I've been assured that it is the right thing to do to preserve my joints and health. If one doesn't work, there is always another medication out there. I think for me, it will be a trial and error kind of relationship for a while. Good luck to you and stay in touch on here.
Beth

Thanks @bannc2000, I will stay in touch here and let you all know of my progress as I hope you do yours. I haven't started out on anything yet, my next appointment my Rheumy and I will discuss my options. I was taking some herbal remedies like Chang Shan, Astaxanthin and D3 and it minimized swelling and pain some but not completely. Will keep you guys up to date, as I'm still researching my holistic options as well

Welcome!

READ. Knowledge is the best way to combat for fear!

I personally am in LOVE with biologics! They gave me my life back! My RA is either in remission on biologics or in EXCRUCIATING head-to-toe flare when not on a biologic that is working. I would not want to go on without my biologic!

I have been on Enbrel, Humira and now Orencia. Orencia has worked the longest - 8 years for me, but if course everyone is different.

If I were newly diagnosed today, I would be discussing Xeljanz because it's oral - no injections or infusions.

Hi WarriorGal, thanks for your response. My biggest issue with biologics are the side effects. I'm also on another group for people with Alopecia and there have been many clinical trials using Xeljanz to treat Alopecia, and with great success. But a person mentioned some draw backs are the monthly blood test for liver issues and potentially having to come off the drug, hence risking losing hair or staying on and risking liver failure. The problem with lots of drugs is that they are great fixing one problem but then create another within the body. I'm also concerned about of the amount of trial and error I might have to go through to find one that works for me. Going back and forth on different meds can create havoc on your system, liver like a yo-yo.

Abatacept is another one I've considered, as I've researched most of them and it seems now at this stage of my research all of the DMARDS and Biologics come with risk. No way out of it

The blood tests for liver function are precautionary. I am alive because one of those tests revealed that I had HCV which I had no idea!

Yes, you may have to try more than one med until you find one that works the best for you, after all, everyone reacts differently so there is no way for any Dr. to know for sure the best med(s) for you. But, back and forth: NO.

Yes! The bottom line is that EVERYTHING has side effects. Drinking water. Breathing air. Crossing the streets or taking an aspirin. You need to decide the quality of life you want, weighed against POSSIBLE side effects. For me, as I said, there is not a question. I'd be in a wheelchair and in such pain I'm suicidal without my RA meds!

My intent is not to scare you additionally, but you also need to consider the permanent damage -- crippling and deformities -- untreated RA can cause. I urge you to look at this video of me and see my permanently deformed hands that make many simple tasks - like drinking from a glass, opening a water bottle, et.c, etc. - difficult, besides being grotesquely UGLY!!

http://tinyurl.com/MirahRA-video

Each of us have to make our own decisions. And I do understand that reading all the various *possible* side effects is very scary. But so too are the effects of NOT taking the meds. These are not easy choices. We all wish we weren't faced with these options. But as I am fond of saying: It is what it is.

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I understand what you're saying, and to each his own. Some meds work great for some and not so great for others as I mentioned that guy in the other forum I'm on. Precautionary test are needed to see if there is already an existing infection because the meds lower immunity response therefore making fighting infection that much more difficult or worse. I'm sorry you've suffered so much with your RA the way you have. Mine is considered mild, as I mentioned I've been diagnosed seronegative RA, all blood test returned negative for RA markers, no prior or current infections of any kind just the Alopecia Universalis which is an immunity disorder. I've got more research and discussion with my Rheumy to figure out the best course for me. So far the holistic stuff is working ok as it subsided the worst symptoms for now. For me, I need further discussion and further research to do. I appreciate your POV, I really do. This disease gives us so much to think about

Hi Bluegal62. I had seronegative RA for many years. During that time doctors didn't treat me aggressively because it looked 'mild'. My joints weren't red or swollen much. I didn't look like I had RA. Now my lungs are full of rheumatoids and I have trouble converting O2 into my blood. Seronegative doesn't mean 'a touch of RA'.

I respect your choices. I just want to make sure you understand what seronegative RA is and what it isn't. Maybe your's really is mild and can be managed with less stringent meds. I hope that is the case.

Good luck.

Kim

Yes, I agree and said we each must do what we feel is best. Hopefully, your RA will stay mild and you will never have any joint damage. I too respect your choices. It's your body and your life.

Right now for me, I just find it so confusing. Yes, I do get stiffness, and sometimes sharp pains mainly in the joints of my fingers, my knee just gets really tight, and I dont have the redness at all. It will swell up some, but since doing the holistic stuff and since not being on meds it went down. Its just so much to think about, but yeah, I have to have a very lengthy convo with my rheumy and hopefully get it figured out for the best all around. I appreciate you guys and your insight and believe me, I'm listening to all of you

I was diagnosed seroneg RA in the early 90's. I'm still seronegative. That said, my pain and inflammation aren't mild at all, though have been under control with Humira for the last 10 years.

I had not one side effect from Humira. I'd probably jump off a bridge if it wasn't for biologics.

And no, it's not true that one autoimmune disease leads to another. It's just that while you're under the doctor's care for RA, other symptoms may present that require investigation. It doesn't mean that RA caused it.

Hi californialynn, my doctor is the one who said if you have one autoimmune disorder that you'll likely develop another, and I'm proof that that is true because I have more than one autoimmune disorder, Alopecia just being the more obvious one besides the RA. My pain for me is painful but I have a high tolerance for pain except in my hands. The swelling part id what gets me most because it creates stiffness making it difficult to walk. The symptoms one gets while taking biologics may be caused by the biologics, which is why constant testing while using them are required so they can be addressed. No one said RA caused them

Just to be clear: because you have one autoimmune disease does not mean you will have another. There are many people with RA and no other disease [and have had RA for a long time].

I have multiple autoimmune disorders and none of them are biochemically connected [referring to the interleukins and the Th types]. Coincidental.

Think of your family. How many have AU? How many have RA? How many have both?

On my mom's side there were 13 kids and each had between 1-5 kids. I have a lot of cousins. We see strong resemblances in various traits such as eye color [very specific shade of blue/gray], hair texture and color, etc. And yet going up my family tree a few family members had RA and no other autoimmune diseases. Other family members had other [singular] autoimmune diseases...but not RA....and never more than one autoimmune disease. I'm the only one with multiple diseases.

There will come a time when we will know more how diseases are interrelated [if they truly are].

californialynn, I think I'm not being clear enough for you to understand what I'm saying. I said my doctor said "likely" not definitely. If you have one or more autoimmune disorders, then that's the proof right there. One autoimmune disorder does not cause the other, the point being is that they are somehow linked and doctors do not know what triggers them. And not all people have the same autoimmune disorders while having RA. I also have other autoimmune disorders not linked to RA, but that doesn't mean they are associated with RA, it just is what it is