I have been on enbrel sureclick for about three months..maybe four... I am having this awful closing of the throat feeling lasting for two weeks(if I stop the shot)... I am scared to take it again. I took benedryl before the shot but I also had this weird numbness in my lips, nose and face after the shot. It helps the RA, but I am super afraid to take this now. I am now on nothing.. The Methotrevate was terrible and Avara made my hair fall out miserably but worked.. I hate to take them again. What else is out there?? I am only 38 years old .. I have three kids.. youngest is two and oldest 18 graduating from high school next month. I do not want to let this RA control my life again when I am feeling pretty good. I also went gluten free and feel much better with my RA because of this. Help... I want to have a fun summer.. not a terrible one because of the RA and meds.. Anybody have any suggestions fo me. I cannot get a hold of my RA DR.. Left messages for them... I am soon going to be looking for a new dr. I think. Any body had this happen to them like this.
Thanks.
Donna
Sorry you are having a reaction like that to the Enbrel. I do not have any experience with Enbrel, but another choice for a biologic could be Humira. Did your doc give you folic acid along with the mtx or arava? You can always inject mtx if your stomach can not handle it. But you must take folic acid with it. You could try antibiotic protocol therapy, but it sometimes takes a
long time to kick in. A good book to read is The New Arthritis
Breakthrough by Henry Scammell (you can probably borrow it from your
local library), and an online resource is www.roadback.org.
I've been doing it for about 11 weeks now and I think it's really
helping, but I can't say for sure because I'm still on mtx and
plaquenil as well. However, my fatigue and brain fog are WAY improved
since beginning the AP. Soon I will phase out mtx and then I will know
if it's working as well as I think. Regardless of wether it's working
for me, it works for a lot of people. Good luck with whatever you try!
Call your doctor. Mtx made me feel 100x worse too. Dr. took me off after two weeks. I'm on Enbrel and have no adverse reaction. I am also on Arava. I had hair thinining that was starting to really upset me but I've been taking Folic acid for about three/four weeks now and I noticed my hair isn't shedding anymore. How long were you on the Arava?dear donna, Oh dear, what a terrible reaction to enbril, I do want to hear how you are doing without it. I'm on remicade and didn't have any bad reactions, but I'm not sure it is working for me. Maybe it would be good fo ryou? I'd be sitting on my doctor's door step everyday if my throat was 'closing up'.....good luck, love sarah
Please don't take enbrel again. Do camp on your dr doorstep, you need his attention now. You could try humira, remicade, kinerat, orencia. There are still more than that to try.
You could also go back on the arava but with folic acid this time. I shed a lot of hair at first but then the shedding slowed down and then stopped. I think my hair is quite full again. I've been on it 4 years - 6 months ago we doubled the dose to 20mg from 10mg, but the shedding didn't start up again.Beccy, I would not take this drug. This is the sign of an anaphylactic
reaction. I have had this same thing happen to patients while getting
Remicaide. Call your doctor and tell him. Your body is sending you a clear
message here. What is the antibioptic therapy? I haven't heard of this. I think my throat is feeling a little bit better.. last day I took shot was April 30th.. I can still feel it though in my throat. I am so depressed.. feeling suicidal about this and my whole life. I was doing so good.. I have my hair back it is the best it has looked.. I don't want to go on the avara.. It worked great for me but I lost my hair:( I will become way too depressed.. even worse than I am now. I am doing the gluten free.. My dr. .. I couldn't believe just never calls me back. I called my primary and asked for antidepressant.. not that I want to be on that crap either. i called and told them I have had suicidal thoughts and I have seem a counselor. My luck though, she wanted to tell me that she disclaims all religion and that she wanted to take me back into my past lives?? I have thought about how I might figure that out... The only reason I exist is for my children. I know they have a great father so sure that I don't even really matter. I am continuing with the gluten free diet which helps alot.. I eat Pumpkin seeds and wild salmon many times each week.. This helps a ton and It is naturally helping. I could take advil if it gets bad.. I feel myself stiffing up a little more today but weather changed and we have rain.. that always makes it worse. I am only 5 ft. 3 inches and I weigh about 110. I try to write poetry and continue with my tango dancing which seems to help alot. I just need to be happy now.. my son is graduating from high school next month and I have alot to do. I do not have a relationship with my family. It is just me, the kids and my husband who is helpless to help me. We have been having problems for past years though and no matter what I have done to try to get him to go to counseling, he won't go...everyone things I am losing it.. i am really sad. I appreciate all your comments. I hope I feel better soon.
God bless you Beccy,you sound soooo depressed maybe even bi-polar. You really need to find another Dr. who will listen to you. I became severely depressed after heart surgery but thankfully had good Drs. and a lot of family and friends support and most important to me, God. Beccy please remember suicide is never an option, think what that would do to your children. They will always need you. Is there a local support group or can you go to counciling? A pastor or anyone you can trust? Even this site will be so helpful to you. A lot of people go through the same things here and will tell you what got them through a tough time.As for the medicine, Lorster is right, you have symtoms of anaphalaxis and it can be fatal! My father died with it and it was heartbreaking. I hope you find what you need....GenWow, that's heavy. I get where you are feeling all suicidal, because I was
like that for a while after I was diagnosed. I get treated at a research
centre and I took part in a study about the emotional experience of your
first year with RA. They were trying to figure out how to help people with
RA bettter and they asked what I thought would have been helpful for my
care that I didn't get. I said they should offer counselling immediatly on
diagnosis and perhaps prescribe some short term sleeping pills or
traquilizers. They do have free counselling on request but I didn't find out
about that until 6 months later when I was in the Arthritis Self
Management Program. By then I didn't really need the counselling
anymore. But that first while was hard. You might need a counsellor you
can relate to better (and a doctor that will listen to you). Please don't give
up. It will probably never get harder than this.
I also believe that depression is an actual symptom of RA, so as you get
that under control the depression may lift.
Antibiotic Protocol Therapy is based on the theory that RA is caused by an
infection of microscopic cell wall deficient organisms that are sort of in
between a virus and bacteria. The arthritis is treated with low doses of
tetracycline antibiotics. It's been around since the '40's, and it works for
quite a lot of people. There are people on this board who have
successfully used it. There are also people it didn't work for. I'm trying it
right now, but I haven't been on it long enough to say if it works for me
or not. There's a lot of politics, economics, and medical controversy
around it, so many doctors shun it (and some doctors devote themselves
to it). The New Arthritis Breakthough is a must read (and quite an easy
read) for anyone interested in learning abiout AP, and the Roadback
Foundation is a large informal network of unpaid volunteers who promote
the therapy. They have a website
www.roadback.org that has a lot of information, resources, and a
very helpful message board.
Good luck and Keep on Truckin'
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