What Do I DO While I Am Waiting For A Cure? Or For New Medications To Be Approved?

I have been getting these questions a lot this year. Let me answer them both together because they kind of have the same answer but I will preface it with a brief answer to the first question.

CURE FOR CRPS COMING?

The short answer is no.  There might be a cure somewhere down the road but currently there is not a cure and there isn’t likely to be a cure anytime soon. This is an extremely complicated disease and Doctors are just now beginning to get a handle on the things that might cause CRPS. Discovering ways to treat it are the primary focus right now. Eliminating it, curing it, will come eventually. 

BUT I WAS TOLD THAT THERE ARE TREATMENTS THAT ARE CURES FOR CRPS?

I hear this a lot too and it is unfortunate that some people, Doctors, media, even other patients toss that word around so cavalierly. A cure means that not only is the disease gone and it’s not coming back but no ongoing treatment is needed; such as medications for some of the irritating and pesky symptoms this disease seems to be so fond of. 

Patients do go into REMISSION but that is an entirely different animal from CURE. Remission simply means that for now, the disease and its symptoms have gone away. They could come back. With our disease people can go into remission spontaneously, from ketamine treatments, nerve blocks, and a few other things but the reality is that anything from a new injury, serious illness/disease, extreme stress, or even simply stubbing your toe could cause a return of the CRPS either in the same place or possibly in a new area. You might have remission for a few weeks or even a few years. 

WILL NERIDRONATE OR AXS-02 CURE MY CRPS? 

These new medications are not a cure, they are a treatment for CRPS. In Europe for example, Neridronate was a very, very successful treatment for CRPS Type One, the most common version of CRPS. The FDA required more testing before they allowed it to be sold in the United States. That study is going on right now, it began earlier in 2015 and should take about one year. We hope that we have the same success here in the States that they had in Europe. 

WHAT DO I DO FOR TREATMENT FOR MY CRPS WHILE I WAIT FOR THESE NEW MEDICATIONS TO BE APPROVED? 

As I mentioned, we get asked this question a lot.

Patients know that there is an excellent possibility, based on the research done overseas, that once the results of the these studies are submitted to the FDA that they will approve the drug for general use quickly and then it will be available to the public.

While they wait, patients want to know:

“So what exactly is “quickly”?”, “When can we expect the drug to be made available to us, the patients not involved in the study?”, “How is the study going so far?” And perhaps most important, “What Do I Do in the meantime?”, “Do I start a different type of pain treatment, such as ketamine, HBOT, LDN, surgery, nerve blocks, Calmare therapy, etc.?”

These are all excellent questions. My answers to all of them have been pretty much the same and because we have gotten so many of them I will share it with you. BUT please understand, I am writing this not as director of American RSDHope, not as a medical professional, or anything like that, I am writing this as a CRPS patient (41 years this year) to his fellow CRPS patients.

What I say is simply my suggestion it is not to be construed as medical advice nor am I telling or advising you to go against anything your own Doctors might be advising. Consider it more as “food for thought”, just another piece of information to help you in your decision-making process as you deal with this chronic illness.

1) When will the FDA grant approval of them?
Let me start off by saying there is no way of knowing exactly how long it will be before the FDA grants approval of them, or even if they will, that decision is based on the results of the current studies.  They are under fast-track approval which simply means they are more likely to get a faster review and approval than if they were on the FDA’s normal approval track.

2) How long will the studies take?
The studies are designed for one year, they follow the participants for one year from the start of the first treatment. Some patients started early this year and the majority seemed to have started in April/May/June for Neridronate and AXS-02 study started in July of 2015. It may take more than a year to simply put together all of the people for the study though, that is the difficult part.

3) When will they be ready for all patients?
An educated guess makes it, at the earliest, the end of next year 2017, before they are ready for us. We just don’t know yet. They have to fill their quotas of study participants, ensure that those in the study abide by the rules of a double blind study (not sharing how they are doing on either the medication or the placebo for instance with others outside the study, say on the internet for example), and a few other factors.

4) How is the study going so far? Are the early results good?
It is a blind study so the people participating in it are not supposed to reveal to anyone how it is going. If they do and the Doctors involved learn of it they may choose to pull them out of the study because their data may be compromised or the FDA may feel that their data is compromised and it may jeopardize the study itself.

So please, if you know anyone IN the study, do not ask them how it’s going. If they slip up and share with you how it’s going, don’t tell anyone else and remind them it is a blind study. If you see anything about the study reported on Facebook or twitter, remind them it is not supposed to be posted and ask that it be removed. The more the information is tainted or compromised, the longer the study will take to be approved by the FDA.

5) What am I supposed to do in the meantime?
This is one of the toughest questions I get every day and it is obviously because what each person does to treat this horrific disease is based on so many different factors that even very well-qualified Doctors who have worked with hundreds of CRPS patients over fifteen or twenty years still struggle with the perfect answer.

It depends on sooooo many different things:

How the disease started (etiology), how long ago it started, how long between the time it started and right now? What has been done in that interim? If “something”, what worked? If nothing, is it because you were not diagnosed, refused treatment, couldn’t find a Doctor, insurance/lawsuit issues, or ???? Have you tried nerve blocks? If so, what were the results? What medications have been tried? (I know the answer in 94 out of 100 times will at least be neurontin/gabpentin even though that tends to be a drug that most patients quit using later). And many other questions.

By the way, when it comes to medications, ALWAYS look up your medications on RxList.com and learn what the drug does, is supposed to do, maximum effective dose, side effects, etc. ASK your Doctor, “why am I going to take this?”,  “What are the best results?”, “How will I know if it is working?” “What should I look for as far as a side effect that tells me I shouldn’t take it?”, “What are my other options?”,  “How many of your patients do you put on this?”, “How many stay on it?”, “Are there any studies I can read about it that show this is a great drug for CRPS? Not other diseases but for mine?” Read about your drugs online.

Ask these same questions BEFORE any recommended procedure. Also ask to speak to patients who have had the procedure in the past, such as 1, 2, 4 years ago. Educate yourself my friends because you are the CEO of your body and it is now under attack and you are in charge of defending it. Most Doctors will agree to this. So that no privacy laws are violated, have the doctor share your information with their past patients so they can contact you. Again, read about your procedures online like you would with medications.

Having said that, now you want to know what you should do today since these medications aren’t available yet:

Here is what I am doing. Certainly, as soon as it is available I am going to be in line for it. Absolutely.

I am going to prepare my mind and body. Getting a treatment with a powerful medication like Neridronate will impact your body, it has to, look what we are asking it to do. We are asking this new medication to body slam this nasty disease that has taken over our sympathetic nervous system, hijacked our normal pain response cycle, taken over part of our brain and re-boot it.

So I am going to do everything I can to get my body in shape. Obviously I cannot do zoomba, or ALL the stuff people do to prepare for an Ironman or to be in the American Ninja Warrior competition; but I can do some things, especially the mental preparation. They discuss how important it is to meditate and many of them also use yoga. Both of these things relax the mind and body. There are many forms of yoga including a version that is specifically designed for people living with chronic pain. You can visit “The Yoga Journal” for instance, http://www.yogajournal.com/article/teach/yoga-for-chronic-pain-part-i/  , where they have a multi- part article that discusses this specifically (even available in an IPad app), or simply Google “yoga for people in chronic pain ” and many, many choices appear.

You can also try learning biofeedback. Sometimes your insurance will pay for these types of things. The yoga and the meditation will help both your mind and body. You can do much of this whatever your physical limitations. I learned biofeedback and meditation when I was confined to bed for a couple of years which enabled me to take “vacations” from pain, and the bed.

If you can walk, it is a wonderful exercise for the heart and body. If not, try Aqua therapy. Our website has a bunch of videos that can instruct you in this;
http://www.rsdhope.org/aqua-therapy.html

Another important preparation tool is diet. Check one version out here;
http://www.rsdhope.org/chronic-pain-diet.html
This is Dr. Hooshang Hooshmand’s Four F’s Chronic Pain Diet.

Did you notice I am not doing any treatments? No surgeries (argggggh), and barring any unforeseen falls, spills, or bizarre accidents I won’t have any blocks. I do sometimes need a lumbar block if my back acts up since I have failed back syndrome and degenerative disc disease, but unless I hurt myself somehow I won’t get a block for my CRPS. I’m not saying they are bad, I still use them to calm my CRPS back down after an injury.

Yes, you heard correctly. Even after 41 years lumbar nerve blocks still provide me with some relief. Amazing huh? We hear from patients whose Doctors have told them that “after 6-12 months nerve blocks won’t help you anymore”.  It’s true that nerve blocks have a greater likelihood of reversing the disease if used within the first six months or so but they can still be an effective treatment for patients in the hands of skilled pain management physicians.

Basically, it is about getting my mind and body as healthy as I possibly can, not only for the procedure itself (the Neridronate infusions) but also because we have to recover from every procedure and the healthier our bodies are going into the procedure, the better they will work and the faster recovery will be. It takes work being a chronic pain patient. People don’t understand that but we work hard every day, mentally and physically, so that we can be as healthy as we possibly can. I know that sounds weird but most of you understand my point.

I know this was long, longer than I had intended but I hope that it has helped some of you feel better about what is happening out there and that everyone will be soooooo ready for these new medications when they are finally approved that the success rate will be phenomenal!

Peace, Keith Orsini
American RSDHope
July 2015

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