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#277557 - 03/17/17 06:07 PM Re: How do I get MTX? Doc wants me to take TNF blocker [Re: worldofme]
Ucla08 Online
Registered Visitor

Registered: 03/13/17
Posts: 10
I'm new here, and new to arthritis/AS so I don't have much to contribute other than, "Me too!" I just started seeing a rheumatologist and they said it was probably AS but doesn't look too severe. After a recent flare, they said it was more aggressive than they thought and that I should start a biologic.

I was pretty against it at first since I'm still trying to talk myself into thinking that things are not that bad. Sure I have back pain and stiffness that wakes me up at 3am, but it gets better when I move around so it really can't be that bad, right? And sure the enthesitis is pretty darn uncomfortable and I really haven't been able to run in a year, despite doing PT and every kind of non-medication approach possible but, this has always gone away in the past and it should go away eventually, right? I mean biologics are for people with real issues, right? Not me...

But, this current flare has really made me rethink things. I'm realizing that I've been letting a lot slide since it's kind snuck up on me so gradually. You kind of look up one day and think, "Wow, when did all this happen?" It's got me feeling way more open to trying different medication options (especially since what they did have me start has been soooo helpful and I'm feeling better than I've felt in maybe 10 years!).

I have a research background so I did a pretty deep drive on the research regarding treatment for SpA's. At my next visit, I still want to ask whether it might not be bad to first try MTX or SSZ for some of the peripheral issues (especially since the back and neck issues are way better after a single dose of Kenalog and starting meloxicam). But, if they say no and still want to do a biologic, then I'll seriously consider trying a biologic. My hope is still to be able to take nothing eventually but I've decided that I'm not going to hold my breath for that : )

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#277559 - 03/17/17 08:11 PM Re: How do I get MTX? Doc wants me to take TNF blocker [Re: worldofme]
SouthernMoss Online
Registered Visitor

Registered: 03/12/13
Posts: 1706
Loc: MS
Welcome, Ucla08. Sorry you had reason to join us. I'm glad you have found some relief from your pain.

It's easy to stay in denial and hope things will get better on their own. The danger in that thinking is that the longer you wait, the more chance you have of developing damage that can't be reversed. I'm not trying to scare you, just want you to see things from a little different perspective.

My personal philosophy is to take the aggressive approach. Biologics can help prevent damage. I prefer the very small risk of bad side effects from biologics over the much more likely possibility of permanent damage without them.

You also have to look at the risks from your current treatment when making a decision about biologics. NSAIDs increase the chance of heart attack and stroke, and the risks increase the longer you take them. Last year the FDA strengthened the warning labels for NSAIDs based on new studies and clinical trials. My rheumy warns me about the NSAID risks at just about every visit.

And steroids are nasty little buggers that have a whole host of side effects themselves.

Sorry, didn't mean to get on my soapbox. wink ... gotta run home now and take my Humira shot. laugh
_________________________
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 D, Calcium, Fish Oil, Melatonin, Culturelle probiotic

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#277563 - 03/18/17 08:43 PM Re: How do I get MTX? Doc wants me to take TNF blocker [Re: worldofme]
Ucla08 Online
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Registered: 03/13/17
Posts: 10
I'm totally there with you, SouthernMoss. If the doc recommends moving forward with a biologic next time, then that's what I assume I'll do. I don't tend to be very DIY when it comes to my medical treatment : )

I guess I also understand the desire to exhaust all other possibilities too. At first I thought that my doc must be either way overzealous with the treatment recommendations or on the take from big pharma. But, after reading about this online, the facts are pretty clear. In my case, I more than meet the criteria for non-radiographic axial SpA and there are some pretty clearly supported, consensus recommendations (American College of Rheumatology/Spondyl...ondyloarthritis). It's just a lot to wrap your head around so I understand the hesitation.

As a side note, do you know if people typically don't take NSAIDS if they are doing biologics? Taking NSAIDS was one of the recommendations but there is some family history of cardiovascular and GI issues and I do tend to have a sensitive stomach so knowing the risks, I wasn't exactly enthusiastic about that. I recently started meloixcam but was thinking about asking to switch to Celebrex since the recent research seems to show slightly less risk with that one. Not sure if doing a biologic might mean not having to take continuous NSAID? Things to ask in the next visit!

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#277569 - 03/19/17 09:06 AM Re: How do I get MTX? Doc wants me to take TNF blocker [Re: worldofme]
Winston Online
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Registered: 06/30/16
Posts: 188
Yes, the biologic may/should eliminate the need to take NSAIDs continuously. I only take NSAIDs occasionally during flares or after I've overdone it, e.g., too much exercise, too much yardwork, too much sitting in one place, etc.

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#277570 - 03/19/17 03:18 PM Re: How do I get MTX? Doc wants me to take TNF blocker [Re: worldofme]
Spring_hill Offline
Registered Visitor

Registered: 10/28/16
Posts: 7
I'm new to this whole thing also, so my knowledge is limited. In my efforts to decode my symptoms, though, I have found that info. educating the professional to be the most helpful and found this sight to be particularly helpful. This links to an article and info. resource, regarding biologics.

http://rheumnow.com/blog/biologic-prescribing-and-patient-education .

One last thought, as I'm also weighing what to do regarding meds. There does seem to be something to this whole wheatfree diet thing, as quite a few doctors, researchers and patients seem to support it...or at least don't throw it aside. Anyway, If you're like me and don't love putting unknowns into your system, who does, to give it a shot may be a valid first step, but early and aggressive is the constant drum beat so you need to keep that in mind also.

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#277572 - 03/19/17 04:34 PM Re: How do I get MTX? Doc wants me to take TNF blocker [Re: worldofme]
SouthernMoss Online
Registered Visitor

Registered: 03/12/13
Posts: 1706
Loc: MS
Spring_hill, the article you linked has some good information in it. However, it is geared to RA, so some of the points in the article would not be applicable to us. For example, if you only have axial symptoms (only your spine is affected), MTX is not going to be helpful for you in most cases. Also, I'm not sure the comment "There is very little data showing the superiority or inferiority of a biologic compared to methotrexate, combination DMARD or small-molecule DMARD choices" would apply to us, because there are studies that indicate that biologics do help prevent SpA damage if started early, whereas MTX and other DMARDs do not.

Many people do find improvement from following a specific diet, such as gluten-free, low starch, no starch, etc. Others see no improvement. It certainly doesn't hurt to try a diet to see if your symptoms improve. Just make sure it is nutritionally complete.
_________________________
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 D, Calcium, Fish Oil, Melatonin, Culturelle probiotic

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#277573 - 03/19/17 04:39 PM Re: How do I get MTX? Doc wants me to take TNF blocker [Re: Ucla08]
SouthernMoss Online
Registered Visitor

Registered: 03/12/13
Posts: 1706
Loc: MS
Originally Posted By: Ucla08

As a side note, do you know if people typically don't take NSAIDS if they are doing biologics? Taking NSAIDS was one of the recommendations but there is some family history of cardiovascular and GI issues and I do tend to have a sensitive stomach so knowing the risks, I wasn't exactly enthusiastic about that. I recently started meloixcam but was thinking about asking to switch to Celebrex since the recent research seems to show slightly less risk with that one. Not sure if doing a biologic might mean not having to take continuous NSAID? Things to ask in the next visit!


Whether you take NSAIDs along with biologics depends on your individual circumstances, but in many cases you can drop the NSAIDs, or only use them as needed as Winston describes.

My rheum had hoped to get me off of my NSAID when I started Humira. That's why she keeps reminding me of the dangers. But I have a knee eaten up with secondary osteoarthritis (OA that is brought on by the damage from the SpA), and I need the NSAID for that knee until I finally give in and have surgery on it. (I've already had surgery on the other knee for the same problem.)
_________________________
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 D, Calcium, Fish Oil, Melatonin, Culturelle probiotic

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#277617 - 03/25/17 06:16 PM Re: How do I get MTX? Doc wants me to take TNF blocker [Re: worldofme]
Ucla08 Online
Registered Visitor

Registered: 03/13/17
Posts: 10
I've definitely been trying to educate myself about all of the options. It's a balance of course between educating yourself vs scaring yourself vs just over whelming yourself with information : )

I was hoping that I could just figure this all out real quick, start doing whatever the "right" regimen is and then that would take care of everything. I'm realizing there is going to be a bit more trial and error. Just to add another wrinkle to it all, it looks like I will likely be moving out of state in the next few months so it should be interesting to see what the next rheumatologist recommends and how similar or different it is.

Spring Hill, I don't know what the research says about diet but for me, it's become pretty clear after my last flare that wheat is a definite trigger for me. I also have food allergies (the serious, anaphylactic, carry an epipen type but not to wheat) so clearly have a sensitive immune system. I have also had flares when not eating wheat at all but at this point, Iím trying my hardest to avoid any kind of trigger that I can!

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