I'M ALMOST AT THE END OF MY ROPE

I'VE POSTED PREVIOUSLY ABOUT MY LIVERS SENSITIVITY TO ALL THE MEDICATIONS I'VE TRIED FOR MY PsA. MY LATEST MEDS ARE CIMZIA WHICH I'VE BEEN ON SINCE 10/2012, I STARTED ARAVA IN 03/2013. SINCE TAKING THE TWO MEDS TOGETHER I WAS FEELING BETTER THEN I'VE FELT IN A VERY LONG TIME. OF COURSE MY LIVER ENZYMES ARE ELEVATED AND MY RHEUMY HAS TAKEN MY OFF THE ARAVA COMPLETELY, I'VE BEEN OFF IT FOR ABOUT 3 WEEKS NOW AND I HAVE HAD ALMOST DAILY JOINT SWELLING, PSORIASIS ON MY FEET, INCREASED JOINT PAIN AND JOINT PAIN IN NEW LOCATIONS, STABBING PAIN IN MY LOWER BACK JUST FROM STANDING FOR LESS THEN ONE MINUTE (LITERALLY) AND OF COURSE THE EXTREME FATIGUE IS BACK. I DON'T SEE MY RHEUMY AGAIN UNTIL 07/11 TO DISCUSS MY OPTIONS. WHAT OPTIONS? EVERYTHING I TAKE CAUSES MY LIVER TO HAVE TROUBLE, I CAN'T TAKE PREDNISONE BECAUSE OF THE SIDE EFFECTS, I'VE TRIED I BELIEVE ALMOST EVERY ANTI-INFLAMMATORY THERE IS, I'M ON MY FOURTH BIOLOGIC MEDICATION, I TAKE TWO NARCOTIC PAIN KILLES MULTIPLE TIMES A DAY, I'M TAKING MILK THISTLE FOR MY LIVER (JUST STARTED THAT IN THE LAST WEEK). I WAS JUST STARTING TO HAVE HOPE, JUST STARTING TO ENJOY MY LIFE AGAIN. I WAS STARTING TO DO THINGS AGAIN I COULDN'T DO FOR A LONG TIME, I WAS STARTING TO BELIEVE I HAD A CHANCE TO DO SOME OF THE THINGS I'VE BEEN WANTING TO DO WITH MY FAMILY THAT I NEVER THOUGHT I WOULD EVER BE ABLE TO DO. IT'S LIKE THE RUG HAS BEEN PULLED OUT FROM UNDER ME, THIS IS A CRUEL JOKE. I WASN'T GIVEN ENOUGH TIME FOR ANYTHING AND NOW THE PAIN AND FATIGUE IS BACK IN FULL SWING, I'M STRUGGLING TO STAY AWAKE JUST TYPING THIS. I AM AT THE POINT NOW WHERE I NEED HELP IN THE KITCHEN STIRRING INGREDIENTS IN A BOWL BECAUSE OF THE PAIN IN MY HANDS. I DON'T KNOW ABOUT OTHER WOMEN BUT I EVEN SUFFER FROM PAIN IMMEDIATELY AFTER SEX WITH MY HUSBAND. I'M LOOSING THE ABILITY TO DO ALL THE THINGS I LOVE A LITTLE MORE EVERYDAY. I JUST DON'T KNOW WHAT TO DO NOW.

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Sometimes all you can do is get through the day as best you can, and hope that tomorrow will be better. You were feeling better for a little while -- there's no reason not to believe that you can get back to that place again. Keep on fighting, living each day to its fullest, and take pleasure in the small things that please you along the way. Fix on the things that go right, and breathe through the stuff that goes wrong. Living with a chronic illness isn't easy for anyone, so be patient with yourself.
Love and Light, Candace

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It would seem something worth talking to your doctor about. Specifically whether there's something wrong with your liver or whether this is just the normal course of the drugs. With many you have to come off of them for a period so the liver can eliminate the drug or by products before resuming. He may be rotating you through drugs so you're continuously on a drug though you can't stay on a specific drug forever. If what he's doing is routine then knowing might reduce the stress a bit. He may have a plan for the next 10-20 years and you're just finding out about one step at a time as it occurs.

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One thing you might try is an anti-inflammatory diet such as the paleo-diet. Supplements such as turmeric help and MSM. Turmeric has to have black pepper for it work well. Foods such as potatoes, and egg plant are bad for people with arthritis. Lots of info on the internet about diets of this kind. My regiment when I was first diagnosed was methotrexate and diclofanac, then Enbrel, which helped a lot. Sometimes I took oxycodone. Now I'm off all these drugs but still take the supplements. I almost was totally crippled from PsA when I was first dx. I take aspirin for pain, which works great and because I knit, I stretch my hands, splaying out my fingers, which helps, too. Hang in there! Quite often a flare will pass. Best of luck to you!

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Have a look at arthritistrust.org the Wyburn mason flagyl treatment. Read the protocols carefully and talk to your dr about it if it appeals. It helps me. i have had psa 30 years and take no drugs for the last 20 and thus am of the roller coaster of flare ups as your body deals with the toxins.and it feels at least curative rather than palliative. Good luck

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After I got to the same place last December (with my hands) I found many husband wasn't d dealing with my illness well, my mother and sisters s showed up and didn't leave until I was ok. I have to ask for help now and always except it. Sex, what is that? Lucky Girl! Sounds like you knob just need a little sex talk with hubby don't give up your intimacy being shy isn't worth it "talk" it should help trust me that is not something given up on easily. Here to listen if you need, Ramona

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Thank you all for your advice and your well wishes. I have been on the FODMAP/PALEO DIET for a while because I have acid & bile reflux due to the auto-immune disease, they are telling me its all connected. I am definitely checking out the website you mentioned chessmaster1, thank you I'm always online looking for answers. Ramona I'm sorry your husband isn't dealing with your illness well, my husband has his moments as well. Unfortunately I'm basically alone here, I don't have much family here, my children live more than an hour away and have their own lives which consist of college and jobs. The very few "friends" I have don't even try to understand what I'm going through. I do find sex takes all my pain away for a short time, I wish the pain would be gone longer but I'll take what I can get (I don't have a choice). OutOfMyMind, I also knit. I don't knit as much as I should, I've been working on a blanket for my daughter and between my fatigue and depression I have just lost interest. CandacePoet I do try to take one day at a time, some days with all my health issues just getting through one day is a struggle. I also suffer from PTSD, Depression and Anxiety along with the PsA. I have a lot on my plate, I can't drive anymore so I sit home alone most days. I know there are people out there who are in worse shape then I am and I try everyday to remember that and I try to be thankful that I am not in worse shape. Some days its just hard to remember that.

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i am sorry for your pain. my story is similar except i could not take Arava. it almost killed me due to its cardiac side effects. i still have high blood pressure from being on it.

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I am so sorry for your pain and all you are dealing with, I will be praying for discernment for you and your doctors to find the right combination of meds to help you through each day... I pray you will be feeling better soon....

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Icecreamman I am so sorry that happened to you. That is so scary for you and your family. We all have to be so careful about what we are taking, we have to do our own research before we take any type of medication. Of course, sometimes like in your case you don't know you will have a reaction until you take the med. A warning for everyone on this site, I am on another site and one of the people on the Psoriatic Arthritis site just died as a result of drug interaction, I'm not sure if it was an herbal drug mixed with a prescription or more than one prescription taken together. The doctors and the pharmacist missed the warning. It is soooo important for all of us to take charge of our health and be aware of everything that is going on. Research all meds before you put them in your mouth and hope and pray that nothing like what you went through Icecreamman ever happens again.

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