I was diagnosed one year ago, and the doctor has put me on lots of meds. Each med was tried for three or four months, like plaquinel, methotrexate, and of course, lots of prednisone. nothing worked. I started Minocin, which I know is controversial. It helped, until I had knee replacement surgery 6 weeks ago, and it set off a severe reaction in my body.
There is nothing left to try except Enbrel. I have tried putting it off, but I know it's coming to that. I'm just so frightened of this drug. I read all the stuff on it, and I guess it comes down to this decision: Do I live a few years felling well, and maybe come down with cancer, or live 20 years in a miserable state just taking the prednisone.
My decision is towards a good life. I just wish they had some data as to the long term effects of this med.
How many here are on Enbrel? Does it really bring you back to life? Do you feel it is worth the risk? Thanks, Deb
I think the majority of us here are on one biological or another. Enbrel didn't work for me but has done wonders for others. I am currently on Humira. I agree, its a quality of life choice. I would rather do what I can NOW to feel better and worry about what MIGHT happen from side effects later.I am on Humira and I also agree it is a quality of life choice. from what I can understand about long term side effects like lymphoma or skin cancer, is that the meds do make us more susceptible to these illnesses, but it is like 20-30 years down the road. Not just a few years. There are a couple of people here that have been on mtx for 10 or more years that have had no problems with anything like cancer and live a good quality of life.
I made the choice to feel as good as I can feel now because I have a family. My girls are 22 (grown and gone), 15, and 12 years old and by the time I would have to face any type of cancer they will be grown and gone and I will hopefully be enjoying more grandchildren by then and not raising a family anymore. I also look forward to the time I will have with my husband and we have no more kids left at home. I want to be the best I can be for that too.
Going on these biologics is scary at first and what you are feeling and thinking is perfectly normal. Maybe keep in mind that these meds help stop the damage done to our joints by the RA and that is so important. You do have the other options of the infusion meds like remicade, rituxin, or orencia if enbrel or humira do not work for you. I'm sorry that the AP therapy stopped working for you after your knee replacement. It sounded like you were doing very well on it. But, there are those other options out there.
I don't remember welcoming you to the board!!! So, welcome to the board!!! Keep us updated on your decision!! There are many wonderful, supportive, and caring people here to help you out!!
Hi Deb,
I wish I could help with your question but I've never been on any of the biologics. I'm on Minocin and would like to know more about what you said, please.
I started Minocin, which I know is controversial. It helped, until I had knee replacement surgery 6 weeks ago, and it set off a severe reaction in my body.
My mom just had knee replacement surgery and they had her on all kinds of super antibiotics. Keflax and such. What happened if I may ask? ALso, how long were you on AP and what was your dose? Were you on probiotics too?
Pip
Good afternoon and welcome. I understand completely your reluctance to start biologics. Do you know the problems and long term effects of using Prednisone? Not much better than using biologics, just a different set of diseases. All of it's ugly, but for me it came down to quality of life issues. I was on Enbrel and it worked moderately well but I couldn't taper Pred. Finally was put on MXT and Remicade and it's working. I've tapered from 30 mg. Pred. to 7.5 mg. Big difference in my life. I'm facing a knee replacement next month and have it scheduled between infusions but I will miss about a month of MXT. Hopefully, I'll be ok.
What are your chances of acquiring cancer without the biologics and what are your chances with biologics? If I remember correctly it's a very small difference. Your chance of acquiring diabetes, brittle bone disease, kidney failure, and gastric ulcers are very high with long term Prednisone use. Also, Prednisone only masks the RA. It only helps the symptoms and doesn't put you in remission. The biologics can put you in remission. Prednisone can't, that's not it's purpose. I want remission if possible, or as close as I can get, so I chose biologics and dmards. Good luck with your choice and keep posting so we can follow your progress. Lindy
Pip,
If you can, purchase the book "the arthritis breakthrough", by a doctor brown, sorry don't know his first name. Also, go to rheumaticsupport.net, and the roadback.org. Lots of information about Minocin.
I started Minocin in January of this year, and noticed a difference in three weeks. by two months, I was no longer needing the prednisone, and was on no other meds for RA.
I purchase my Mincoin from a canadian pharmacy. The doctor who wrote the book suggestes not taking a generic minocycline, but the standard pelletized version. In the U.S., the cost is ridiculous, if you can even find it.
Supposedly, Dr. Brown hypothesizes that RA is caused by a mycoplasma that hides in the joints, which is why your immune system goes haywire, attacking your joints.
There are lots of success stories on line, and in the book.
I hope I answered the question. When I re-read my post, it seems I may have worded it wrong, as if the Minocin caused the flare up. The surgery caused a horrific flare up, my sed rate is now at 100, and it was coming down beautifully with the Minocin. I was beginning to feel like a human being again.
My rheumy is suggesting Enbrel, along with the Minocin. There are many doctors who even use antibiotic IV therapy in their office. I wish my doctor was one of them.
On the roadback.org, you can post and ask for a doctor in your area that uses AB therapy, and Ritchie will be glad to help you. Deb
Hi Deb and welcome to AI
I understand you being scared...we all are. However, don't let that fear stop you from the chance of getting your life back. There's a recent post here you might like to read titled New Enbrel Research Findings. Enbrel has side effects just like any other drug out there including those we buy over the counter and don't think twice about. If you read the fine print on any drug, prescription or not...it will likely scare the pants off of you. Although I do believe it's smart to be aware of what could happen I wouldn't consume myself with worry that it will. I say that because I've been there and had to change my way of thinking or it would of drove me crazy. I was on Enbrel injections for 2-years during a reseach study with no problems. I never thought it did much while I was on the study but once the study ended I started having flares out of this world...so obviously it did something. My RD gave me a script to start Enbrel again and I gave myself my first injection this week. As with any of these drugs, some people do really well, some are middle of the road, some not well and some no effect at all. You have to do something that will help you and hopefully Enbrel will do just that. In my opinion, it's a very good drug. There are a lot of people here on Enbrel and I haven't heard anything horrendous. Take care & good luck to you...I think you've made the right choice for you. Keep us posted on how your doing.
Peace & Love...Neasy
Hey, exactly150, welcome to the board! I think you will find Pip! VERYHi there and welcome,
I've had RA for 3 years and have been on many meds including prednisone, plaquanil, methetrexate, and enbrel. After about 2 years on enbrel, the inflamation has gone down. I've been off MTX for the better part of a year and am now able to reduce my prednisone to 3 mg a day. I think it is primariy the enbrel. If I have an infection and have to go off, I feel a lot worse. At first, I got huge site reactions to the enbrel. Now, hardly any at all.
We have to make hard decisions with this disease. I went through a very rough 3 years fully expecting to get progressively worse. I had to go from full time work to half time. I think with the right mixture of drugs and exercise programs to keep the joints mobile and life style changes, it's possible to maybe not completely recover, but to improve and lead a good life. I'm doing a lot better now than I was when I first got diagnosed. Good luck.
Hi and welcome!
I am on humira but I have a lady that goes to my church that has been on it for a few years and it gave her life back to her. She looks great and feels great. I decided on humira because I was able to get financial help with it (for 6 months) after that I don't know how I can afford my 20% co pay.
When I was given the option of enbrel or humira from my doc I asked the pharmacist who is a brother of my friend, and he said take the drug! That is has worked miracles on lots of people. I was scared too but it's not as bad as you think. I have kids and I want to enjoy life and do things like I used to do like paint. There is risks with anything, but the benefits far out weigh the risks.
Good luck on your ra journey. Let us know what you decide.
Hey Deb -
I'm on AP and I think it saved my life. I was "early onset severe" PRA which I think is doctor-speak for 'why is that woman screaming and crying on the floor in my office. :-)
I used to post on the RB all the time but recently moved across the country and was without connectivity for months. I just started posting again.
And you're right, I did interpret the post to mean I thought you said the Mino caused the flare. Whenever I hear of Mino stopping working I try to figure out why and what would I do in that situation. So...what do you think happened? That's why I asked about the probiotics - usually super ABX tend to kill off all the good flora so maybe your gut started leaking? Just a thought? Have you looked at the page on the RB homepage - "what to do if Mino stops working?" They have a lot of suggestions to pull you out of a flare.
Yeah, I agree about the IV's. My AP doc doesn't appear to be into it but I really think it could help me heal. Have you thought about going to another doc? A GP? Another AP doc? I'm even thinking of MP'ing! What do you think of that? LOL Talk about controversial!
Yep - a lot of docs/patients do the enbrel with Mino and wean. Just if you think you can last...Do you pulse or Harvard?
Wow - what a SED rate. I thought mine was high. What were you when you started AP? Jeez, I should look mine up. My RF was sky high and another one but I don't remember my SED.
Am I being too nosy? Just trying to throw my cents in.
Pip
Dear Deb:
Here are some thoughts: The surgery itself might have stirred up the immune system. Also, more bacteria/mycobacteria might have been introduced during the surgery. Or, were you on anitbiotics during the knee surgery? If so, were they bacteriocide antibiotics like penicillin (which work by killing the cell wall)? If so, this might have caused a huge release of more L-form or cell-wall deficient bacteria, thus causing a big flare (think about it, if you kill the cell wall, what's left but the inside of the cell, or the L-form). Meaning you need bacteriostatic antibiotics, like the tetracyclines, more than ever now. They are the only ones that work from the inside out, so to speak. They work by stopping the reproduction of the protein on the inside of the cell. You might consider IV antibiotics (bacteriostatic, like clindamycin) in addition to the Minocin.
Take care, Karin
Pip: Dr.F does use IV AB. All I had to do was ask! Give it a try. :)
I see Dr. L sometime next week - where is my darn dayplanner! LOL. I intend to ask.
Pip
Hi, Welcome, and please know if we had a choice we wouldn't be taking all of these meds either. They are all VERY SCARY, so ....we make the best choices that work for us. MTX alone worked well for me for years. Now, the Remicade (I take 900 once a month! I guess that is a lot?) 20 mgs of MTX & now I'm able to get of the prednisone , down to 2mgs (HURRRAH!), so there are others, as other people have said, "HUmira, and Enbrel....you will find the right combination , I"m certain. Take care, meEnbrel first biologic with up to 9 years rheumatoid arthritis safety, sustained efficacy data