Thursday, October 13, 2011

I Hate Biologicals! ***rant***

Hi everyone, hope you are feeling better and your joints are happy. Oh wait, joints make you happy?!? Haha, well my joints are always mad at me. I wanted to chat a bit about the biological drugs out there and the side effects that I have been experiencing. Right, now I feel like I am in the twilight zone of medicine. My RA doc doesn't know about my current yeast infection dilemma and my GYN doc, does not know squat about the use of Enbrel for RA. So as usual, we become our own advocates. Well, I am going to have to make some tough decisions concerning my meds and maybe my history with RA meds might help some of you with decisions on what medicine might be right for you.

Now, I have been on most all RA meds since 1994. Plaquinil, Methotrexate (yuk), Gold Salts ( huge mouth sores), Arava (did nothing), Remicade (Only one infusion then had to fight insurance company), Enbrel (for like 9 years now!), SImponi (just like enbrel but a once a month shot, the effects did not last the month) – and of course the love/hate of my life prednisone.  Oh how I love to take thee, but how I loathe your side effects! Anyways,I want to chat about Enbrel and my current situation and maybe someday this might help someone.

I think I am at the end of my rope with taking Enbrel. My immune system has finally hit rock bottom. I have a rare Candida infection that will not go away, and it is a quite rare strain. I have been on multiple rounds of diflucan to no avail. But every time I take my damn Enbrel, I get worse. EVERYTIME. Of course my current RA doc (as of today my past RA doc) said he highly doubts that the Enbrel would be causing or making me worse?!! Really? A medicine that lowers my immune system would not make my current infection worse? That is the dumbest thing I have heard him say since I have been seeing him. My gyn is trying to pre-load me with yeast infection medicine on the day I take Enbrel, but I just get worse a few days later. Also, more evidence that I have a crappy immune system is that I did not even have allergies this year (I have had them for my entire life and bad ones). Oh you say that  is a good thing, right?! Well, according to my ENT Doc he said its because I have no immune system to even fight off allergies so I don't feel the effects. If he is right who knows, but I am the allergy queen and it was quite shocking to not have any this season. Something was just different this year. Low estrogen (almost none), no allergies, and now non-stop rare yeast issue.

The point of all my ramblings is this. Does Enbrel help my RA – Hell yes – My joint pain and stiffness are way better on Enbrel. But does Enbrel cause other issues that are just as debilitating? Hell yes – Living with a four month long horrible yeast infection and feeling like I have the flu all the time is intolerable too. Enbrel has warnings about fungal infections. Why would my damn Dr say Enbrel is not part of the issue!!!!  Grrrr!

I think I have to reach a happy compromise. Maybe take Enbrel once a month instead of twice a week. Boost my immune system with lots of healthy veggies and fruits, probiotics, and a few supplements. And see what happens.

The only way to ease RA pain, is to screw around with your immune system. What a conundrum. Have any of you on biologicals experienced horrid side effects with them?

Sorry for the rant, but, some days you just got to rant!

Hugs and prayers!


Wednesday, October 5, 2011

Hi Everyone! RA update and Hormones *yikes*

It has been a long time since my last post (hmm…a year or so?) Life has been crazy here! Had a son graduate high school, got him off to college and also I have been having major health issues with my RA going wild and crazy mad on me! Then in June of this year I guess my estrogen level went in the negative numbers – that has been causing the worst female issues eva! I have not been able to exercise for three months due to ridiculous female issues. It is always something isn't it?!

Anyways, I hope everyone's auto-immune stuff is under control and getting better each day! I thought I would post about some stuff I have been trying to get my RA under control. I guess my immune system is in the tank since I have been on Enbrel for like 9 years.So I have had to stop injecting the stuff for a month and man did I ever pay the price. Horrible RA flare – but I developed a  yeast infection the day after I took Enbrel – this happened two times, so I know it was not coincidence. I guess when your estrogen is low, infections are a little more common – but throw that in with an immune system that does not exist do to our wonderful meds that we take, and yikes! I have to tell ya I hate menopause! So, I am back on Enbrel as of last week and what a difference – but I am only going to inject once a week instead of twice so I can try to keep my immune system from tanking. Who knows about biologicals long term effects? I mean maybe I will drop dead after using this stuff for 20 years – just not enough long term studies as far as I am concerned. But, and this is a BIG BUT, I cannot function or move my hands and knees and elbows, etc without it. So it is quality of life verses quantity I guess. What a choice!

As you all know I tried the raw, vegan diet for 6 months but there was no change with my RA. I still eat lots of raw veggies, fruits, do alot of green juice and smoothies. But I do have limited dairy and grains now and then. And my Paleo diet friend swears I need meat in my system, so I have had some chicken here and there. Meat still kind of grosses me out and stops me up too. So the jury is out on this one. (On a side note that Paleo diet thing has sure taken off hasn't it?) Anyways, I decided to look into some other things for my joint pain and stumbled on to this stuff called Blue Emu. I don't want to offend any vegans as I know this stuff contains animal oil in it (this particular product comes from emu's that have already been used for their meat so they don't kill emus just for the oil) – but I was given a jar of it to try. I know their are ethical questions related to the use of emu oil. I have questions myself. Although, most vegetarians I know own leather couches, leather shoes and purses, etc. So this complex issue exists already. It is a conundrum and I will have to research this a little more before I would purchase this ointment myself. This Blue Emu also has aloe, MSM, glucosamine and other stuff in it as well. It does not smell and is not greasy.

Blue-Emu_4oz_sm_200px I have been rubbing it into my hands (swollen joints) 2-3x a day. I feel like it has helped a little as some of my fingers are not as excruciating as they used to be. I will keep you posted on my progress. Next post will talk about RA and menopause – yuk!

Have a great week!


Wednesday, January 19, 2011

Hummus Lettuce wraps!

Hey RA peeps! Yeah I am not totally raw anymore but trying to do that 80/20 thing – ya know – 80% whole food and 20% cooked (but not crappy food).  Today for lunch I had some lettuce wraps stuffed with hummus and lots of shredded veggies like cabbage, carrots, green onions, celery and bell pepper. Okay I admit a huge piece of sourdough toast sounds better, but actually these were very good and oh so healthy. When I eat like crap I just feel like crap. Especially my stomach, which is already feeling crappy and irritated from methotrexate. I definitely notice when I eat healthy and vegan my stomach issues subside. I also get hot flashes at night when I eat crappy – does this happen to anyone else? Anyways I am trying to lay off the bread for a week! Bread is my worst enemy – I wish I hated it like I hate bananas or mushrooms.  Okay off to swallow the mtx – I am so overdue cuz I was seek for over a week with a cold! For breakfast I had a green smoothie with kale, mangos, 1/2 banana and a couple of frozen strawberries. I really like getting my greens through juice and smoothies since eating large quantities of salad all the time can get so annoying!



Tuesday, January 18, 2011

Happy New Year!

I am back! I still have RA – lol Wow it has been crazy this last year. I should have kept up with my blog posting. And then to top it off I deleted my html and custom blogger template that I coded myself but I must have lost brain cells cuz I cannot remember what I did. So I adapt, and went for a clean, simple look.

Anyways, how is everyone? RA is still grinding away at me. I quit the Raw diet thing since May 2010 but have really stayed away from meat for the most part. But lately I have really strayed from veggies, so i am hopping back on that wagon.

Just wanted to say hi!



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