Well I saw my Rheumy for the first time yesterday.. She seemed pleased that i took some personal intrest in this and had done some research before the Apt. She confirmed what I already knew and wants to start me with a prednisone burst to get the pain at ease then start on humira as soon as all my blood work comes back... I brought up the NSD and she didnt think too much of it.. Blew it off and said there isnt nearly enough reserch to back it up. She did welcome me to try it.. Ive gotten alot of mixed reviews from these treatments. Should I be getting second opinions or does this seem pretty standard?

Sounds like she is taking you very seriously in regard to pain and needed medication, considering Humira that fast is frankly very good!

She also sounds like your typical doctor; sceptical of anything slightly "alternative", but to be honest, I think you could do a lot worse!

Love
gilth

Sounds like your doc is a keeper. She is being proactive to get the inflammation under control.

I have never had a Rheumatologist recommend anything alternative. I see an Immunologist who has a wholistic approach, which helps too.

Shari

The only alternative my rheumy suggested was to take fish oil....lol
I asked her too about the NSD, and she also said the same as your doctor.I am on the TNF Simponi and i am having good results with it.Hope you do too.Expect to put some weight on while using prednisone.

Good Luck

Glad your doctor is getting straight onto treating things.

She was actually right that there isn't enough research for medical doctors to back up the benefits of an NSD, or for doctors to feel confident about recommending it - doesn't mean it isn't worth a try, and doesn't mean it doesn't work for a lot of people. Its just that they have to have hard evidence to take it on board. If you want to give it a go, check out the diet forums. For me, low starch is a bit of help, but NSD doesn't give enough additional benefit to make it worth while. Others swear by a strict NSD, and still others don't notice any difference.

sounds like a keeper!

pred, then biologic, that sounds like she's really trying to help you!

i also personally like when my doctors are happy with my proactive approach to my health so she sounds excellent in that regard as well.

WOW - A rheumy who is listening to you! Agree with other comments, you have got a keeper - and yes, treating by way of diet will not find many takers in the doc squad... Great though that she told you to give it a try. Can't get better than that. Stay with her. She really does sound like she is, well, sound. 'Smile'.

Go well -

Hi there BodSquad!
Congrats on seeing your Rheumy for the first time.
For what it is worth, if you are interested, here is an article from Dr Gensler who is an AS expert, and what she writes about prednisone may interest you and others here. Just sharing, I just want health and happiness for you all... And no worries about MDs not knowing about NSD (yet!) because it just isn't in their area of study, so just do what makes you feel well and healthy and better!
******************


All About Medications: Questions & Answers
With Lianne S. Gensler, MD

Spring 2012 Issue of Spondylitis Plus
Editor's Note: The following is a collection of questions about medications answered by SAA Medical Board Member Dr. Lianne Gensler. Dr. Gensler is the Director of the Ankylosing Spondylitis Clinic at UCSF in San Francisco, CA. She is an Assistant Professor of Medicine in the division of Rheumatology and sees patients in addition to teaching and performing research in Spondyloarthritis. We'd like to thank Dr. Gensler for her time in assisting with this article. Many of the following questions were asked by SAA Members.

Q: What are the primary categories of drugs prescribed for AS and related diseases?
There are three primary categories (and note the examples are not a comprehensive list):

Non-Steroidal Anti-Inflammatory Drugs (NSAIDs) i.e. Motrin, Naprosyn
Traditional oral Disease Modifying Anti-Rheumatic Drugs (DMARDS) i.e. Sulfasalazine
Biologic agents: Tumor Necrosis Factor (TNF)-a inhibitors (i.e. Etanercept)
Q: After a diagnosis of spondylitis is made, what thought process goes into prescribing a medication? What type of medication is prescribed first and why (e.g. allergies, disease severity)?
There are a number of key factors that go into matching certain medications to a patient's needs. These include:
What are the predominant symptoms?
Which joints are affected?
Are there other symptoms? i.e. IBD or uveitis
What drugs has the patient already tried and how have they reacted to each?
First line drugs are NSAIDs unless there are contraindications. Contraindications might include kidney disease, Peptic Ulcer Disease and sometimes Inflammatory Bowel Disease (IBD) (Crohn's or Ulcerative Colitis). If the most affected joints are the spine, hips and sacroiliac joints, and NSAIDs are not effective (after trying 2 different types), biologics (specifically TNF-a inhibitors) are the next step. All of these are equally effective for the joints, but certain types (monoclonal antibodies) are better for manifestations including IBD and uveitis.

Q: Is there any reason to skip right to a TNF-a inhibitor?
If there are contraindications to NSAIDs like those mentioned above, or if the patient has had an adequate trial of 2 different NSAIDs at a full strength dose, then it is reasonable to go straight to a TNF-a inhibitor.

Q: What are the differences between the TNF-a inhibitors?
The best way to describe the differences is with a table.

Drug How the drug works to block TNF-a Route of administration Dose & frequency Disease specific comments
Etanercept (Enbrel) Acts as a mop on soluble TNF-a Injection in the skin (SC) 50mg weekly or 25mg 2x weekly Works well in all arthritis forms
Infliximab (Remicade) Acts on both soluble and cell bound TNF-a injection into the vein (IV) 3-10mg/kg every 6-8 weeks Works well in all arthritis forms & IBD
Adalimumab (Humira) Acts on both soluble and cell bound TNF-a Injection in the skin (SC) 40mg every other week Works well in all arthritis forms & IBD
Golimumab (Simponi) Acts on both soluble and cell bound TNF-a Injection in the skin (SC) 50mg every month Works well in all arthritis forms (hasn't been tested in IBD, but should work)
Q: What do you tell patients concerning side effects - specifically severe ones like the black box warning regarding risks of lymphoma with the biologic medications?
The major risks are infection and cancer. The infection risk is because of the suppressed immune system as a result of the biologic. For the most part, they are common infections that anyone could get. It's more likely in an immunosuppressed patient. Other infections we worry about that are less common include tuberculosis, certain fungi (coccidyomycoses [valley fever], histoplasmosis). The cancer risk has been better studied in Rheumatoid Arthritis than AS and the typical cancers are skin cancers and less commonly lymphoma (a type of blood cell cancer). The black box warning was a type of lymphoma described in children.

Q: What do you tell a patient who doesn't want to run the risk of the side effects of a TNF-a inhibitor (or for that matter, another medication) and has made a decision not to take them?
They are the patient - they get to decide. As long as I can educate them about the choices, risks and benefits, they are ultimately responsible for choosing because it's their body and they live with the results. It's my role do the best job possible taking care of them independent of their treatment choices.

Q: What is a DMARD in regards to spondylitis treatment (meaning, are there actually Disease Modifying Anti-Rheumatic Drugs in the spondyloarthropathies ) and in your experience, where do "DMARDs" (methotrexate / sulfasalazine) fit into treatment?
If you are referring to the spine, the traditional DMARDs are likely not disease-modifying. They do play a role in those with smaller joint involvement like the knee, ankle, hands and feet. Even then, however, they may not be truly disease modifying, rather disease-controlling.

Q: What about steroid use such as prednisone? The amount of steroids needed to have a response in the back is high and therefore the risk often far outweighs the benefit. In addition, if a patient has psoriasis (as many of these patients do), when the prednisone is tapered, the psoriasis gets worse.

Q: What NSAIDs are most commonly used now?
Each rheumatologist tends to have his/her own preference based on anecdotal experience. I don't think it's fair to state the most commonly prescribed as this varies from provider to provider.

Q: When would you prescribe a narcotic / pain killer?
If the patient has pain that is not managed by usual means (NSAIDs, biologics, etc), it is appropriate to prescribe these agents. They may be prescribed by the rheumatologist, primary care doctor, pain specialist or orthopedic surgeon.

Q: During a flare, have you prescribed an additional medication to help with the inflammation / pain?
Before prescribing additional medications for a patient in a flare, I like to first assess what may have caused the flare – i.e. a reduction in exercise, increased stress or travel, discontinuation of medications etc. I try to use non-pharmacologic measures like heat/ice, stretching and physical therapy. I will add or increase NSAIDs in a patient on a biologic agent. If the patient still is having significant symptoms, I may add pain medications as needed.

Q: What differences are there between medications for the different forms of spondyloarthritis (e.g. ankylosing spondylitis vs. psoriatic arthritis or enteropathic arthritis)?
Of the TNF-a inhibitors, all the monoclonal antibodies should work on the arthritis in addition to the uveitis and IBD. Etanercept is the only one that doesn't have efficacy for treating manifestations outside of joints. However, etanercept still tends to reduce the number of uveitis flares that occur. Other drugs that work in Spondyloarthritis, especially the smaller joints, include sulfasalazine and methotrexate which are oral medicines.

Q: Although there is no cure for ankylosing spondylitis and related diseases, are there any drugs that have been shown to slow or halt the progression of the diseases?
It depends on which specific disease you are asking about and which manifestation of the disease. There is not good evidence that any drugs prevent bone formation (i.e. fusing of the spine). There is a possibility that NSAIDs may prevent fusion, but the evidence is not strong enough to make a formal statement. In psoriatic arthritis, TNF inhibitors have been shown to prevent radiographic damage.

Q: What progress has been made in the last few years regarding treatments?
TNF inhibitors have changed the face of this disease. Patients have gone from disability to fully functional. Other biologic agents are now being developed and studied. As we study the diseases and how patients respond (or don't respond) to therapy, we learn more about the disease and figure out novel agents that might help to treat and hopefully cure the disease.

Q: Given all the genetic discoveries as of late, what new medicinal treatments will we be seeing in the future?
This is definitely a very exciting area that may allow us to target therapies to a patient's particular genetic make-up. This would include the ability to predict response to different therapies in addition to potential complications based on a patient's genes.

SAA Members can click here to download this issue of
Spondylitis Plus in our Member Area.