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!



mary said...

Funny, I just sent an email to someone about an hour ago ranting about how I hate the meds because they make me sick but I know without the meds the RA will run rampant. Who the heck knows what to do.

Cathy said...

Yikes. So sorry that life has been a challenge lately. Hang in there, it has to get better, right?

love2bcreative78 said...

I am so glad I found your page. I too have a love hate relationship with Enbrel. Since starting back on Enbrel a few months ago I have been fighting off fungal infections. I got very sick for a month straight and had to go completely off Enbrel and let me tell ya my pain sky rocketed it was horrible But the yeast infections cleared up all on there on. I have never in my life had an issues with yeast infections till Enbrel. I can't function without Enbrel as my pain is out of control without regular Enbrel injections but the chronic infections suck too so what is a girl to do??

Katelyn Cameron said...

Rants are always good! Especially about the type of medicines we are required to take. I was diagnosed with JRA when I was 12 and they put me on Enbrel and worked as far as my arthritis but I was always getting sick and along with the Methotrexate I constantly was a this kid who was getting sick and feeling ill from the medicines. I always would rant to my mother about how much I hated taking these medicines and that no one understood that I was trading in my pain and swelling for a daily sick feeling. Enbrel stopped working completely when I turned 18 and I swtiched to Humira which did nothing but make me hate shots even more than I did before. So I am now on Orencia and I go in for an infusion once a month and it has actually done wonders for me. I now am off methotrexate and I am not as sick as I used to be. Dealing with these serious medicines can suck and only other RA patients know that. We are constantly in a love hate relationship with all of our medicines because as much as we hate taking them, they do help us get through our day to day pain and will help prevent deformities in our future. It definitely good to get it our and rant about the frustration with all the medicines we are required to take. I'm glad to know I'm not the only one who feels that way.

Michael Garrett said...

how are you? I was once a Methotrexate dependent as well. Honestly, I've tried non-prescribed pain relievers as well coz I wasn't really satisfied with prescribed medicines that I got from my 3 doctors. I got tired of seeing them actually. I wanted to end my relationship with pain relievers so I decided to go for biotech and have a stem cell treatment. I consulted Dr Purita regarding the process and I was "slightly" convinced... I mean, if you are in a situation where you feel pain most of the time, you will try every possible ways to get out of it, right? so, I had a therapy with him, and really, I'm grateful that it went well and now, my joints are back to normal, I can play tennis again. I hope you will find the best solution to your condition as well. Wishing you luck!

Ashleigh said...

Hi. Thank you for sharing your story. I've never posted on here... I came across this page randomly through a Google search. I've struggled with RA and AS since I was 21. I've gone through numerous medicines along with a ridiculous amount of side effects and several hospital stays. I've been on Enbrel since 2005 with a great increase in my quality of life. However, I'm having issues with infections recently and it's becoming too much to deal with. I just want to feel normal! Did you ever solve your issue? How are you doing now? What,is your current cocktail? Id love to find some sort of support group or someone to talk about health issues with.


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