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#278143 - 06/08/17 08:41 PM Re: Hello, everyone. New here. [Re: Lewis23]
ahulett Offline
Registered Visitor

Registered: 07/23/15
Posts: 26
Loc: Washington
Hello David,

Glad it worked smile And I can understand how it can be scary to post details like this. Good news is folks here are very welcoming and friendly.

I'm not a doctor, but I'd say, without rehashing your post, you're on the right track with making an appointment with a rheumatologist. I'd personally recommend a few different things you can do between now and then.

First, start keeping a log/journal of your symptoms. At a minimum, write down where you feel the pain, what type of pain it is (sharp, burning, constant, comes and goes...), and the intensity. For this last one, I've found the Mankowski chart helpful, and you can read about it here: http://forums.spondylitis.org/ubbthreads.php?ubb=showflat&Number=254152

How you keep the log is up to you. Some folks use written logs. I use an app for iOS called My Pain Diary. At the end of the day, what's important is you can take paper copies to your rheumatologist so you can review together, and they can either keep a copy or scan them into your file. Over time, your notes can help show if medications and such are helping, or if you need to try other approaches.

It'd also be good to prepare before your first appointment. Make a list of what you want to mention (a quick overview of your history above is good, and also be ready to show the pain log). Prepare questions ahead of time as well. You're going to want more time with your rheumatologist than you're going to get, so being prepared ahead of time will help things go more efficiently so you can get the most out of your limited time with him/her as you can.

As far as medications you should be taking, assuming it is something rheumatic, that's definitely a question for your rheumatologist. The good news I suppose is regardless of it being AS or psoriatic arthritis, the medication approach is generally the same. You're going to have to balance between what you're willing to try, what your rheumatologist wants you to try, and what your insurance is willing to cover. For my insurance, for example, it's try the cheap options before they'll approve the expensive biologic approach. If you're finding Aleve helps, I'd personally say use what works, but that's your call (a.k.a. I'm not a doctor).

Humira does have a list of scary side effects. I take Enbrel which has a similar set. But what you hear on TV is what they have to tell you in order to run the ad on TV. If you dig into the documentation, you'll see the actual rate of these side effects is, from my perspective, very small, and worth the risk to try and address things. Will it work for you? You won't know unless you try it, which is true for any medication you'd try for this, assuming it's AS/PsA/something in the family.

And on diet. It may be helpful to avoid inflammatory foods. When I started down my "diagnosis journey" I worked with a nutritionist and we first cut gluten, and then dairy (which lead to a side discovery that I'm lactose intolerant), but I didn't find changing my diet helped that much. Your mileage may vary, so it's worth a shot. If you do, take notes on things so you can potentially associate with foods -- "When I eat grain, I have more pain" can be good to pull out of the data.

Other folks here have recommendations, so definitely read what others have to say. I am by no means an expert. But by reading everyone's thoughts and suggestions, hopefully you can start putting together how you'll approach things and get on a good path to feeling better.

36 yo male - USpA July 2015; cleared by Mayo Clinic June 2017
Medications: meloxicam (7.5mg daily) and cyclobenzaprine (as needed) in mid-2015; hydroxycholoroquine early 2016; methotrexate 0.6cc Jan 2017 w/1mg folic acid daily; Enbrel Apr 2017; stop hydroxycholorquine, MTX, and Enbrel June 2017
Supplements: multivitamin and fish oil
Other: allergy shots for 10 years as a kid, and again since about 2009 along with zyrtec, flonase, and montelukast

#278144 - 06/08/17 08:49 PM Re: Hello, everyone. New here. [Re: ahulett]
Lewis23 Offline
Registered Visitor

Registered: 06/05/17
Posts: 44

Than you so much for taking the time to respond to my message. It gave me some hope, and I will definitely log my journey prior to my appointment...something I haven't done before. After almost 20 years of pain...which almost seems normal to me now... I am hoping to rise above this.

#278146 - 06/09/17 07:33 AM Re: Hello, everyone. New here. [Re: Lewis23]
Winston Offline
Registered Visitor

Registered: 06/30/16
Posts: 229
I second what Aaron says about the biologics. Don't make a decision based on the television commercials. Many of us here are on them and find that the side effects are minimal to none. They are the gold standard treatment and the only treatment at present known to prevent further damage to the spine. So try to go into your rheumatologist appointment with an open mind about them. In the meantime, if Aleve is helping you, keep taking it. But watch out for gastrointestinal side effects. If you experience stomach pain, get it checked out immediately. A prescription NSAID, Celebrex, causes fewer gastrointestinal problems and is also believed to do less damage to the heart when taken long term.

#278152 - 06/09/17 01:52 PM Re: Hello, everyone. New here. [Re: Lewis23]
ThreeG Offline
Registered Visitor

Registered: 11/10/16
Posts: 22

I'm pretty new here myself. I'm a 42 year old woman with a tentative diagnosis. I was a pretty devoted distance runner before this, and it has been really hard to deal with the physical limitations. That said, for a long time I was told by my GP that I had just spontaneously developed osteoarthritis in all of my joints (while still in my 30s). She blamed running, and even though that made no sense to me, since I had a lot of hand and finger pain, her recommendation and my general pain level caused me to stop running (and gain weight).

By the time I made it to a rheumatologist, I expected to be sent away with no answer. Instead, she listened, looked at my back, and connected dots I had never considered. She tested me for HLA-B27, and started planning treatment.

Like you, I was scared about the biologics, but I ultimately moved forward with Remicade (and Methotrexate). For me, it has been amazing. It is also liberating to have permission to exercise as much as possible. I'm taking the weight off, walking a ton, and planning to get back to running one of these days. Of course biologics are a choice, but I have been very reassured by the monitoring I get. I truly believe I am more likely to catch ANY major health problem early because of the regular blood work.

I've read a lot of anti-inflammatory diet stuff, but most seems to advise against the staples of my diet (I'm a vegetarian and eggs, soy, and many of my favorite vegetables are no-no's). I'm just trying to eat as well as I can and get the extra pounds off.

Good luck, and keep us posted. This board moves a bit slower than many others, but there is always someone here who knows the answer. I have found it very comforting.

#278153 - 06/09/17 02:21 PM Re: Hello, everyone. New here. [Re: Lewis23]
Banana Offline
Registered Visitor

Registered: 07/23/06
Posts: 6500
Loc: New York
The diets don't work, I tried them all way before I was finally diagnosed. Treatment, medication will help. Read up on them, because early and aggressive of treatment to prevent permanent damage.

Good luck, welcome.

Actema IV once a month (with pre loading for allergic reaction), Cymbalta x1 daily, Arava 20mg daily. Diagnosed with AS in 2004, suffered undiagnosed since 1982.

#278168 - 06/10/17 01:55 AM Re: Hello, everyone. New here. [Re: Lewis23]
SouthernMoss Offline
Registered Visitor

Registered: 03/12/13
Posts: 1756
Loc: MS
+1 for biologic meds.

You asked about low dose prednisone. Most of us find that we have to take the higher doses of prednisone to get any benefit. And prednisone is a nasty med that has its own hefty list of side effects. But it might be worth trying a short course to help get you through the flare.

Keep us posted.
Ginny - 56 year old female
Dx with USpA in March 2013; changed to AS in July 2015
Iritis and Scleritis
unicompartmental knee replacement June 2014
MTX, Humira, Cyclobenzaprine, plus Indomethacin ER as needed
Supplements: Folic Acid, Vitamin A, Vitamin D, Calcium, Fish Oil, Melatonin, Culturelle probiotic

#278181 - 06/12/17 01:12 PM Re: Hello, everyone. New here. [Re: ThreeG]
Lewis23 Offline
Registered Visitor

Registered: 06/05/17
Posts: 44
Thanks so much for all the wonderful advice, guys.

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