I saw my new Rheumy today and I loved him. Very sharp. However, he told me a couple of things that some of you might want to ask your doctor's about.
My previous Rheumy took me off Enbrel and didn't replace it with another biologic because it just didn't seem to be doing anything for me. This new doctor explained why. He said the biologics are killing people, as in dead. This is because they are destroying their immune systems.
The prednisone, he said, is like pure poison and that will kill you faster than anything else especially your bones. I have to taper down.
He also said that my FM is not under control, while my RA may be. He won't know until he does the blood work. So, my RA is under the best control it's going to get. The FM has to be treated by the Pain Manangement Specialist.
So basically, I get to just live with all this.
I was so bummed. But tonight, I had to take my daughter to the ER (not serious, but necessary). The nurse that was taking care of her was so nice. She also works for a Pain Management Center. She said there are a lot of alternatives besides just pain medications. I hope so because I don't want to just keep upping the pain meds.
Interesting to see what your responses are. I would be really interested in what your Rheumys have to say about the dangers of the biologics. This is the first Rheumy that I've heard say so clearly that they could kill you because they totally destroy your immune systems. That means an infection can easily kill you. Not quite what those fancy commercials say.
Feedback on this is highly encouraged.
well, without biologicals & pred to keep RA in check and provide us some comfort from the pain & damage, we will still likely die from uncontrolled RA attacking our heart, lungs, even our brain.
Sooo... I see it as a 50/50 chance but one has better possibilities for a "normal" life, especially for people like me JRA'er who was doomed from birth of not having a normal life.
oh and just think you take a chance of dying when you get in a car.
that is what my take is on it all.
I knew what your rheumy said about the biologics were a factor in all of this when I started the Humira. My rhuemy monitors me closely. As far as the pred goes....I agree...pure poison. When my girls were young they both got the chicken pox. Which is a no no for anyone to be around when they are on pred. I was so sick I almost died. I didn't take pred after that for years. Then I got pneumonia. I had to take it to clear up my lungs to breathe. I got even more sick. Now I'm in an UberFlare. Back on the pred and praying I don't get sick. I had to think long and hard about the pred but I can't stand the pain and swelling any longer.
They very sad thing I see in all of this is that no matter what we do and what we try it is going to have some other effect on our bodies and it is a lose-lose situation. I feel that it is going to be a personal decision on what meds to take. Do the benefits outweigh the risks? Is there some personal responsibility on the patients part to monitor how they feel on their own and call the doc when something isn't right and personal repsonsibility to prevent infections? So many times I feel that the docs bully us into taking this or that without giving us a chance to think about it and do some research.
I haven't seen any data to support what your doctor said. The only data I've seen says that the incidence of serious infections is very low. The newer studies show lower rates than the initial trials. So, why is he so convinced that the risk is high? The only sign I've seen of immune system damage in myself is from taking MTX. After 2.5 years I started getting a recurring thrush infection that wouldn't go away. Thrush is common in AIDS patients and is a sign of a weakened immune system. Since I changed to Humira and stopped MTX the thrush has disappeared. For now, I'll stick with Humira. I am concerned about long term risks, but I'm also concerned about the long term risks of untreated RA.
Alan
I also dont necessarily agree with your doctor...because if that was true why would any doctor give those mediciations....dont be afraid to get a second opinion.....especially if you think the medication works.
Do some of your own research.....there are articles all over.....make your own decision and dont let the doctor rule your life...
Take care
[QUOTE=Deanna]He said the biologics are killing people, as in dead. This is because they are destroying their immune systems. [/QUOTE]
Bizarre. Did you hear him correctly? He actually said biologics destroy people's immune systems and ultimately kill them? They are serious drugs that need to be monitored closely and the choice to take a chance on them, or not, is up to the individual but, com'on
[QUOTE=Deanna] The FM has to be treated by the Pain Manangement Specialist. [/QUOTE] Now, that I agree with! You really need a good team to work with FM/CFS. (or any chronic disease for that matter)
http://www.mayoclinic.com/health/chronic-pain/PN00048
My rheumy told me she participated in some of the clinic trial studies for the biologics. And yes, some people do get serious infections and some people do die. However, she felt they were still a good choice. For me, it comes down to quality of life. I would rather be in less pain and be able to function and MAYBE die from a side effect than to live a longer, miserable, painful life. I wish there was an option C but I sure haven't found it yet.Unprofessional. I researched and talked with specialist both in the alopathic and alternative medicine arenas and found nothing that implicates certain death if you take biologics.
I read the research papers and reviewed the graphs from the research and made my decision to take biologics based on what I found in my search. I also do ongoing research and haven't found an increase in deaths among people who are taking biologics, but then I guess it could be the biggest medical coverup in modern medicine, as your new RD alludes to.
Did you ask why, how, and where he got his information?
Each person who starts biologics, starts them knowing that there is a higher risk of infection, and yes, it could possibly kill us. We choose to take this risk. Deanna, this is the important part, we have a choice. If it were up to your new RD we wouldn't have that choice because it sounds like he doesn't prescribe biologics. This means he's withholding medication from patients based on his personal opinion, not the research that's available.
I did my research and I'm comfortable with my decision to start Remicade. It was a decision that I made with my RD and internist and after careful research. I hope that everyone that reads this forum will do their own research and work with their doctors and do what is best for you. Take into consideration all of the FACTS and make a decsion based on the facts and quality of life issues.
[QUOTE=Deanna]My previous Rheumy took me off Enbrel and didn't replace it with another biologic because it just didn't seem to be doing anything for me. This new doctor explained why. He said the biologics are killing people, as in dead. This is because they are destroying their immune systems.
The prednisone, he said, is like pure poison and that will kill you faster than anything else especially your bones. I have to taper down.
[/QUOTE]
There is no point in taking a big expensive dangerous gun type drug if it does not yeild big results. Serious complication rate on Enbrel, Humeria, and Remicade is lower than the complication rate of nsaids. There are more hospital admissions from nsaid use than any other medication (due to uncontrolled GI bleeds).
If a drug (or herb) is strong enough to help you, it is also strong enough to hurt you. Sometimes they hurt and heal at the same time! (Oh such fun).
Pred is a magic bullet for any kind of inflammation. Nothing works better or quicker, or is as cheap, and plus it is highly available. Wonderful stuff for short term use. But you really are playing with the grim reaper when you do pred long term, especially higher doses. Even 5 mg daily can be horrendous in the long run. Just like smoking some people get away with it pretty well, but most do not.
The only 'treatment' I had for the 1st 10 years was nsaids. I am crippled. I wonder how things would have turned out if the biologics had been available in the early years?
Yes RA and FM are 'incurable' diseases. We do have to live with that fact. I feel better fighting back. Life is a risky business.
I am glad you like your new rhuemy. It is about time a doc cared for you. If your RA is quiet now, I think it is ok to just let a sleeping dog lie. You can always start up treatment if your RA becomes active again.
I think working with a pain specialist will help you a lot. I don't know where you are at on the orthopaedic front, but find a good surgeon and get the big stuff repaired. Would you be a happy camper if your pain and mobility issues improved 50 to 75 percent in the next year?
It isn't over yet, you can be helped! Peace.
I can appreciate all of your concerns, it is all a bit overwhelming, especially at first. There are so many decisions to be made and so many reports that seem to contradict each other. I have never heard anyone else say what your Dr. said nor I haven read that anywhere but that doesn't mean that he is not right. As I was reading over this post for the 2nd time it came to me that we are all going to die sooner or later, one way or another. So what about our quality of life between now and them? My aunt has taken Embrel since it first came on the market and she credits it for her being able to walk now. She was diagnosed 25 years ago before all the new meds. and has terrible joint damage. She says that EMbrel gave her her life back. Hope this helps you make the decision that is best for you, just wanted to give you another view point. Remember, no matter what you decide, the people on this message board are great and will support you through it all.
have a pain free day,
jamie
I think that I would ask the RD to show you the research to support his claims. Scarey thing to say to a patient! If it wasn't for Enbrel, I am sure that I would be in a wheelchair. I'm not pain-free, but I am certainly in better shape than I was before being put on it.
Changing RD is a bit scarey, too. I'm about to do it after the end of the year. Need someone who knows rheumatology, but also understands the individual side and has some compassion. Not good when your every RA complaint is met with, "well, that's just how the disease is, you know."
Good luck to you. Hope the pain management makes a big difference -- or at least some difference!
All your comments are most interesting. This doctor is not refusing me biologics. But I gave him a full background on my "afflictions." I have a propensity to getting infections and them being very hard to cure. I also have the vasculitis which means I constantly have skin lesions. As you know, this is not good if you are taking any of the biologics. For instance, a fungal infection took months of treatment to cure.
Also, the Enbrel is doing me no good whatsoever in controlling the RA. I agree that if it is making a huge difference in your function, that's definitely worth a lot.
He is going to review my bloodwork to see if the autoimmune stuff is under control. Then, we'll talk about other options. But he certainly does not want me on Enbrel and I don't want it either. It turned a bronchitis infection into a nightmare last year. It has done me absolutely no good.
In regards to patients dying, he said he had seen his own patients die from infections because of being on the biologics. My former Rheumy also suggested that as he didn't want to keep me on something as strong as Enbrel if it wasn't doing me much good. Maybe this is something that Rheumatologists in Phoenix are starting to see. That's why I brought it up so that any one of you can ask your own doctors. I know what the web sites say and the commercials, but doctors do live in the real world.
If biologics are not controlling my RA, then I am maxed out at what they can do for through medicines. That has been obvious for awhile. I mentioned Remicade. But Remicade definitely causing deaths in some patients.
It's a lot to think about. I'm certainly not suggesting anyone shouldn't take the biologics. From what I hear on this board, I can tell it is the difference between functioning and not functioning. Maybe the problem is my own individual case.
He's seeing me in a month. I see all the other doctors in between then. He is going to try and help me.
This doctor knows my former Rheumy quite well, saying he is one of the best in Phoenix. He was tagged as the best in Phoenix also by Phoenix Magazine. I thinking that they are coming to this conclusion from treating their own patients.
Oh, and being on the Prednisone is partly my fault. The doctor didn't explain all the complications up front. I got up to a high dosage and have had to a slow tapering. I think if they can get my other pain under better control, then I can taper easier.Deanna, it sounds like you found a doctor you respect. That's worth a whole, whole lot.
What you say about the doctors being the ones with the patient experience makes sense. If I was a doc and had seen my own patients die from a drug, I'd probably be a lot more cautious with it than I would be just from published statistics.
I agree that what you're reporting from your doc doesn't imply that no one should take these drugs. But with your history of infection it sure makes sense for the doc to lay it all out for you even in those rough terms.
Feeling like you're at the end of the line with meds at this point must be a little overwhelming. I hope new drugs or new treatment schemes (maybe trying previously used drugs again or in new combos?) will be there for you. It sounds like you may have a good shot at getting to try them with a good, new doctor on your side.
If he sat still for listening to a thorough history from you (from any patient), that says a lot itself.
Good luck with the pain management explorations.
RKGal
Yes, I think he read like all 8 pages of my history before I came in the room because I hardly needed to summarize. Plus, there's this shorthand conversation that develops with your Rheumy over time. My previous Rheumy would say something and I'd finish his sentence and vice versa.
We are already at this point. The difference for me is I think my former Rheumy got discouraged with my progress. I had some real good progress for about a year and now I seem to be in a decline. I am really hopeful with new eyes looking at the problem.
If I have to deal with the limitation and pain, ok, I'll deal. But first, let's try everything we can.