Please vent with me! | Arthritis Information

 

I have been wanting to write for a week.  But, I find it so hard to complain.  I am such a positive thinker and I know this too shall pass but, I need to talk to someone who has gone through this too.  So here goes...I am on Enbrel.  It doesn't work alone as my disease is still active.   So the doctor added MTX at only a half dose because I have had trouble with it in the past.  Well, my enzymes flew up after just 2 weeks and he had to take me off.   Now I am waiting to go back on MTX with only Enbrel + Prednisone as my option.  I have continued to take Enbrel but I decided not to go back Prednisone. I have lost 19 lbs after I went off about a month ago and have had a reprieve on my side effects.  So I am in pain waiting for my liver enzymes to get back to normal.  Lots of pain.   I keep sitting down all the time just for relief from the pain and stiffness and it is frustrating.  Please write me your vent or an answer to mine! Susan LeeI'm sorry to hear of the complications you are having. That is really tough to have to contend with. I fortunatly only have to take prednisone and plaquenil so far, may need more after next DR appt. Sorry not much of a vent as consoling for you. Hope it helps I'm sure some of the other members have had some of the same problems your having and they may be able to vent more than I. Good luck and keep us posted as to how you are doing.I don't blame you for not wanting to go back on Prednisone. I'm back on
it until I get my first Humira injection. It'll be 6 months from the time I
first went to the doctor until I start getting any real treatment. I think the
truth is, this is one frustrating disease. I just came off a nearly three month flare and got my first treatment this week.  I am so sorry that we all have to hurt.  It is such a horrible thing to go through.

I have no medication advice as I am all new to this myself, but I hope you find a balance that works for you soon.  It is no fun to live this way.  You will feel good again. 
arizonara38798.7917476852Susan Lee,  I am only on Enbrel as of today and pain meds.  I cannot tolerate mtx and I am so happy to be off pred.  I have only been off one day but it will take a whole lot of convincing and pain to get back on.  I have been on pred. a year and a half.  I hope the mtx works for you.  I would rather mtx than pred.  Are you being careful with other meds and not drinking alcohol?  So many things effect your liver enzymes.  My heart goes out to you.  It feels soooooo good to be off pred.  I hope your pain subsides with time or you can find another med that will help.  I am with ya.  RoxI hope you get the meds straightened out. It's so complicated.I started on prednisone about a year and a half ago and am still on it although the doctor is trying to get me off. I am down to 4 mg a day. I've added plaquanil,methrexate with folic acid and enbrel and I still have inflamation although not as much as before. Sometimes I feel like quitting the whole medicine ball game because I feel so terrible from them. But before I got diagnosed I was so stiff I could hardly move. I wasn't comfortable in any position, even lying in bed. I would like to hear from someone with RA who has gotten off meds and lived to tell about it.Rox...Alcohol has never been part of my life.  So that is not the problem.  Actually, the same thing happened when I took MTX the last time.  But that time I went maybe 4 months before it showed up in my blood work.  This time it was a mere 2 weeks after I started the MTX again.  Hope you can stay off the Prednisone too.  I have been off and on it for 30 years!  But this time, even though I have the pain and stiffness, I will hang in there without it as long as I can. Thanks for caring!  Susan Lee

Sorry you are feeling so bad Susie

From all I've heard though some just can't take it. I'm not sure a break from it will make a difference. I don't really understand why doctors insist on trying to get people to take the stuff when they have seen first hand their bodies reject it. I guess it's just proven to be such a good medication for so many they try, try, try and try again to get people to accept it.

I wish you the best of luck...which ever way it turns out for you.

Lovie..in my doctors defense there are no other drugs he can add to the Enbrel.  We went through the whole list and because of other health issues I cannot take them.  The only other one is Prednisone but after being off and on it for so long, I get many of the side effects.  So we are at an impasse.  And MTX does work for me that is why he tried me on a half dose this time.  Hoping it would work.  If my liver enzymes come down I guess it is either try it again or stick to pain meds when I need them.   I am off them now too because they too can effect your liver.  I rarely take them anyway so I am making it through with difficulty but I am doing it!  Thanks for caring!  Susan Lee

Hope everything works out for you.

I really wish you well.  It sounds like this has been such a long journey for you.  Your posts also urge me to lower my pred as soon as I can.  I am newly on it, and I know that it is something I don't want to have a longterm relationship with.  Thanks for sharing your wisdom.  Seems my body will take some meds for a short time and then it starts to reject them.  They keep trying thing but nothing seems to work very well.  I now try to keep active and take as little medication as I can.  It's not always possible due to the extreme painful flares.  I am now taking Methotrexate 1 cc given once a week.  I don't use the prednisone unless I really need too.  Recently I was off all my meds due to the loss of insurance and boy what a real problem.  My hands got so crippled up I couldn't hold on to things.  My knees are really bad and my right should freezes up.  The Cellcept I was on did so well for me but I just can't afford 0.00 for 80 pills and I need to be on 3 pills per day.  This disease keeps trying to beat me but I am not going to give in to it.  I have learned to accept the things I can and can't do.  Guess that is all we can do.I hate to hear of all the problems yall have on these meds. I have only been on MTX for 4 weeks so I dont know yet what my future will hold. So far so good though.  And yes, dreamspirit,  sometime acceptance is the best thing that can be done.Crunchy, mom mom has been on MTX for years and has little to no side effects.  She also takes milk thistle for liver function.  I don't know if that helps, but her doc approves of it.  I plan to take it when I start MTX next week.

It is such a shame that it can't be more simple.  I am so sorry you are suffering because of financial reasons dreamspirit.  Have you looked into any of the prescription help programs? 

Thanks so much Arizonara for your information about milk thistle.  I will definately ask the RA doctor when I see him next week.  I will be seeing my Internist tomorrow for my liver test too.  I so hope that it will be back in the normal range.  And if milk thistle could help keep it there I would be so greatful!  Hope you are all having a decent weekend!  Susan Lee

Thanks for the info on Milk Thistle. I am going to find out more about it too.  I am interested to find out how it works!You are right, and I always forget to give that disclaimer when I mention natural herbs or treatments.  I got approval for all the things I take from my doctor, and it is obviously very important.  My mom cleared it with her doctor as well for the meds she takes.

Just to let you know that I was planning on talking to my doctor.  I never take anything unless I talk to him first.  And, get his approval.  I surely hope that others do the same!  Thanks though to arizonara for sharing her information!  Susan Lee

http://www.rxlist.com/cgi/alt/milkthistle_faq.htm

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