This is harder than it looks!

Hi there,

Thanks so much for sharing your experiences with me. It's always reassuring to know that you're not alone and not losing it on top of it all.

Take a look at the other two responses here because they both have had some good experiences on other meds. I'm bringing these meds up to my rheumatologist when I see him on Wednesday because, like you, the plaquenil is just not working for me with the fatigue. If I do start on something else, I will certainly let you know. Anything to help each other through this physical bummer. Take good care...

Hi Amy,

I have been on Enbrel for almost 4 years.  I had high liver enzymes, so methotrexate and all the nasty liver-affecting drugs were out (I was actually relieved).  I had some emotional ups and down at first - but when I thought about it they seemed almost to be replays of earlier times in my life.   I had a couple of attacks of anxiety, but they were understandable under the circumstances - I was nervous the first time giving myself a shot, trying to make sure I did it all OK>  It's not really difficult.  Some women have their husbands do it, if they are too needle-shy.  I like the Enbrel because I can set the schedule myself, I can hold off if I think I"m coming down with something, and I don't have to travel to the rheumatologist's office (70 miles away) and miss a day of work, as I would if I were on Remicade (did 2 infusions, didn't like it, had a lot of itching).  I do get a little bit of 'injection site reaction' - a little redness and itching, but Benadryl cream pretty much takes care of it - it's minor.  I have had a slight rash on one leg, not sure whether it was related. (I thought yes, my dr. thought no.)  I put antibiotic cream on it, scrubbed it - off and on, finally pretty much gone.  Didn't spread or anything.  Some folks have more of that.  I starting feeling better within a week.  If you can, try it  Best of luck -

Ellen

Many thanks for your suggestions and comments - I made an appointment straight away with my rheumatologist for Wednesday. I'll tell him about the fatigue and joint swelling (the plaquenil isn't doing it for me). If he doesn't let me try another med, I'll be shopping for another rheumatologist. You've help give me hope that there is a way of life above and beyond being wiped out and full of pain. Thanks and good wishes your way.

Thanks for speaking of your experiences, especially since you've been through this struggle for so many years. The Enbrel has me intrigued because I know so little about it. What have been your main side effects from it? Please do share, if you don't mind.

Also, what are some red flags I should be aware of in regards to a rheumatologist? Just thought I'd throw that your way, especially since I will be seeing him on Wednesday.

Thanks so very much again, for your help. Best to you, my friend.

I would find some one that is going to first treat you with respect. I work in the medical field and believe me, some doctors do not know the meaning of the word. Remember you are paying them! Doctors are not God but you Are a person and need to be treated like one. How aggestive do you want to get? Find a doctor that you and he/she have a plan on how aggestive you want to be. Pain Management and how to treat that is a issue that you MUST  talk about. Be open and let them know if you have pain.Let them know when you hurt, how much you hurt on the pain scale 1 thru 10 10 being the worst.  I did go to a doc when my insurance changed and she would not address my pain. That was a issue for me and my husband. I made a payment plan for my old doctor. This is my 3rd time on Enbrel, I have been on everything. There is nothing that has come out for me to try. I always go back to Enbrel. the first time within a month I was feeling great! The best I felt in years!  This time it is keeping the swelling down. Enbrel had only been out a short time the 1st time I started it, It gave

me more get up and go! Of course there is the lymphoma issue, but that is very rare. my first time around  my shot site caused a lot of itching. Now they tell you after you get it out of the fridge to get it room temp then inject. I always before just took it out of the fridge and injected. Headaches can occur after injection but go away pretty quick. Other than that I have not had too many side effects. Remember You DO NOT have to do anything that you do not want to do.  I work 3rd shift in a Emergency Dept and on the move. I do have alot of pain issues and after 21 years finally gave in to going to see a pain mangement doctor. Not that I really wanted to,  I have a wonderful, caring arthritis doc and always trust her. we discuss everything to pain, stress, marriage , jobs and how this always fits in to RA patients. I will be a battle some days, I have them alot, but hang in there, EXERCISE SWIM AS MUCH AS YOU CAN AND PRAY, PRAY PRAY. LET ME KNOW HOW YOUR APPT GOES. MUCH LOVE

Hi Lisa, your situation is tough because you have the fibro situation to deal with as well. I appreciate the info about all the meds you've tried - knowledge is power, as you say. I especially like your response to those who don't understand ("do it yourself then")! Finding others like you on this board helps us all realize these illnesses are the pits and they are not simply "in our heads."

I am blessed - I worked per diem so I have schedule flexibility. I do have to start by 6:00 a.m., so that's sometimes very tough. The weather is bitterly cold here and that makes joints feel even worse.

I think it's really good to have a psychiatrist in the background, especially to answer some of these chemical questions and, if anything, to have someone to bounce frustrations off of that can offer constructive suggestions. We are the only ones that know what it feels like to make it through a flare or tough day/week. But at least we can share on here.

Best to you and, like you said, we won't give up or give in.

I too have RA , and fibromyalgia. My test results are always inconclusive except my c-reactive protein and my sed rate are always elevated. I have been on every drug out there with little success. I tried Remicade for a year, Enbrel for a year, Orencia, Humira and any others on the market. I am now on Rituxan- I have had  two rounds of infusions and am due for my third next week. I take 20 mgs of methotrexate and 3 mgs of folic acid.

Exercise is an important part of my life but am unable to do too much  because of overdoing it will put me into some kind of flare. so I have gained over 50 lbs since being diagnosed 4 years ago.

I eat extremely healthy foods- no junk foods, lots of fruits and vegetables and only organic meats and dairy.

If anyone has any bright ideas I would appreciate them.   I try to keep busy as I am a seamstress with my own business. But  it is hard to get up in the morning! but when the fatigue gets me I can take a break where most people can't.

Good luck to all!

You have really been through a lot since your diagnosis. How do you keep going?

Sometimes I don't want to keep going but with the support of my family and friends and a really good doctor, I just pick myself up and try again.

My weight loss is the biggest issue for me right now. I know that if I can lose the weight then I will feel better and my RA will be less intrusive. But because of my RA I can't seem to get moving..... so it is an ongoing battle that I try to conquer everday!

If you are not already you should be on at least one medicine that is proven to slow down joint destruction. You should talk to your Dr and if he's not willing to listen then find a new one.

Good luck.

I think the weight gain has been the worst part of it. I am just so tired all the time and I did go to a gym for 6 months ( with a trainer)and at the end of 6 months I had more problems than ever, especiallly with my back.Which caused me to go back on prednisone and I absolutely hate swimmming . I am scared of water.

I did not have a weight problem until I took so many different med's & so much prednisone. I was on it for close to 2 years because of some type of lung problem ( which they could not figure out what it was)in which I coughed 24/7 for 6 months and the only thing that stopped it and cleared my lungs was the prednisone & other steriods. It was a nightmare. Now, I know that as soon as I cough more than 3 times I am in the Dr office & they start treatments. This year has been alot better no coughing. But I just got off preidsone for my hearing loss. Of course my joints are great now, but my stomach hurts, so we all take the good with the bad.

I think of my good days as something to be thankful for.

I research the med's now before I take them. I have found that I am the type of person who has the strangest reactions to drugs. My regular RA is great and we just laugh & try something new.  

Laugher  helps and believe it or not babysitting my nephew helps. It makes me feel renewed in spirit to see his eager eyes when we play with real tools and hammer nails in boards. I get down in the floor with him and play( His mother has really bad RA)Take care & laugh at something today.

Laughter is the best medicine! My husband actually put on my screen saver "Smile and remember to take care of yourself" what a great message that we all sometimes forget!

Have you ever been tested for Lupus? I know lung issues can be a symptom of lupus as can joint pain.

Also, I was on Cymbalta for several years andthat really helped my fibro. You might try that..

Good luck.

My RA & Lupus test are always inconclusive and have been for years.  I can't live with out my cymbalta and I take a really low dose.

Hi Lisa, can you tell me about the Cymbalta? How does it help you and how do you take it (pill, injection)? Thanks and blessings.

Hi Amy- I'm not Lisa but I thought I would tell you about my experience with Cymbalta!

It comes in capsule form and it is given in doses of 20,30, 60 mg(I think)

I started on 30mg then went up to 60mg. I took it once a day with very little side effects. (Except for the sexual side effects rather the lack thereof)

It is my understanding that Cymbalta was developed originally for diabetic neuropathy, which as you probably know is burning pain in the extremities due to nerve misfiring in diabetics. They figured it also worked on Fibromyalgia patients as well as for depression.

In my opinion it is a miracle drug- I wish there were more out there like this one!

Amy,

I take only 40 mg capsule of Cymbalta a day. I have not had any bad side effects and the pain I had in my neck & left arm stopped. But if you start taking this med, Don't miss a dose & do not stop it abruptly, it can have nasty withdrawal symptons.Take care

Lisa

re: re: re: re: fatigue
Amy
Friday, February 06, 2009 at 09:08 PM

I know what you mean about the weight issue. It's like some sort of vicious cycle: you need to move to help keep the weight down but it either makes you sick or it hurts to move. Prednisone is a godsend for swelling. But it does make you hold weight.

Keep it up, for you and those who value you. You are important.

I was on Cymbalta for some time and thought it was WONDERFUL! Then I realzed that along with everything else that my libido got up and left the bulding! I talked with my doctor and he said that was a common side effect and that sexual dysfunction was very normal when taking 60mgs or more of cymbalta.

So I decided to switch to Wellbutrin. I have been on that for just a few weeks and my fibro has been ok...We will see how this works. Tonight for the first time in awhile the bone tired feeling has come back. But I have been up and going since 5:30 this morning.That is unusual!

Hopefully we will all be better wih each coming day.....

Thanksk for the info on the Cymbalta. My libido is nonexistent anyway...probably because of my joint pain! Hope tomorrow is happy and pain-free for you.

I know what you mean.

Hope you have a good weekend too!

I know what you mean about the weight issue. It's like some sort of vicious cycle: you need to move to help keep the weight down but it either makes you sick or it hurts to move. Prednisone is a godsend for swelling. But it does make you hold weight.

Keep it up, for you and those who value you. You are important.

Hi - I have heard of people who did not respond to standard treatment, and who have done better on antibiotic theory.  There is some evidence that "cell-wall-deficient bacteria" get actually into our immune cells, where they can hide, and send the immune system off-track that way.  Certain antibiotics will work against them, low dose - so they don't become resistant - and over a long period of time.  Several people have told me that it's gradual but does work, slowly, against fatigue and pain.  I will consider it if the Enbrel stops working for me. (I can't take MTX or the other drugs that hurt your liver.)  Just a thought.  Read "The Road Back" about the original doctor who developed the therapy, or go to the website by that name 9www.theroadback.org - or www.cpnhelp.org - or the Marshall protocol.  Several different groups have found success with it.

Good luck!

Ellen

Your story is exactly how my treatment began except I'm still on the same regime with constant flares. I would be very willing to try the methotrexate. Maybe it's time to find a different rheumatologist. Thanks for sharing. I wish you the best in your management of this disorder.

If the plaqunil isn't working it is time for something new! Talk to your doctor and be an advocate for yourself!

Hi Brenda, your fatigue is incredibly difficult to deal with - I read your post after coming home from work and sleeping six hours. Your post hit a note of familiarity with me. I worked as a personal trainer for many years, didn't smoke/drink, ate well. And here we both are with this unfair disorder. Please take some comfort in knowing that you are not alone in your suffering, sadness and frustration. We all must be the "strong ones" because we're fighting a difficult battle that isn't for wimps.

Please feel free to correspond any time you feel down and bummed. And I in turn will do the same. Blessings your way.

AMEN Amy, this disease is definitely not for wimps!

Hi - I'd settle for the orthotic clunkers I've got, if I could just go for a long walk again! But - the nice shoe comment both resonates and reminds me - my daughter is supposed to be getting married this summer, and I have been steeling myself to wear a long skirt or dress, with my New Balance 926's - that only come in black & white !  Big leather clunkers that save my feet - I've been on orthotices for almost ten years, nary a loafer or heel in sight!  SIgh......I think I've had the RA for a long time too, though just diagnosed in 2004...

Ellen

Love it! Hope ya find the shoes for the wedding.