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#277449 - 03/06/17 06:36 AM How do I get MTX? Doc wants me to take TNF blocker
worldofme Offline
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Registered: 08/12/15
Posts: 377
I can't seem to get my doc to understand that I DON"T want TNF blocker yet and would like to save this for last resort. I asked for MTX and he simply refuse to give it to me saying it won't work for spine pain. Why not try it I ask?

Should I get a new doc?

He also don't prescribe pain killer / NSAID other than Duexis / Vimo.

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#277450 - 03/06/17 09:48 AM Re: How do I get MTX? Doc wants me to take TNF blocker [Re: worldofme]
Sheep1 Offline
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Registered: 08/12/15
Posts: 204
Your doctor is right- MTX doesn't do much for spine inflammation of AS. I don't understand the mechanism, but MTX seems to only work on peripheral joints- fingers, toes, knees, elbows mainly.

TNF blockers, in my opinion, are safer than NSAID's. Taking NSAID's daily at high doses has a risk of cardiac event (heart attack, stroke) or gastrointestinal bleeding.

The main risk of TNF blockers is infection, the most serious is tuberculosis, but to be honest, the risk is quite low. I had my husband look at the data (he is an epidemiologist at a drug company) and the people who tend to get infections are elderly. If I lived around people that had tuberculosis, I would hesitate to take a TNF blocker, but most of us in the US are not at that great of risk. There is some risk of lymphoma, but it is very, very rare, there is a greater risk of having a heart attack from chronic NSAID use.

And taking TNF blocker early is the only treatment that has been shown to prevent damage to the spine over long term. NSAIDS help with pain and inflammation, but they don't prevent long term damage.
_________________________
48 yo female, history of back pain since 1985, fatigue since 2009
-USpA diagnosis in August, 2015. Changed to PsA in 2016
-Erosions in finger joints
-HLA-B27 +
-Other: fibromyalgia dx in 2011 (wrong dx), endometriosis, severe pollen allergies
-Medications: Humira (since Oct, 2015). Weekly Humira start in Sept., 2016. Methotrexate (Dec. 2016). Aleve (as needed only), Lyrica, Tramadol, Baclofen, Vicoden, Tylenol, Xanax. Vitamin D, Vitamin B12, Folic Acid. Allergy Immunotherapy shots since 2009

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#277452 - 03/06/17 01:15 PM Re: How do I get MTX? Doc wants me to take TNF blocker [Re: worldofme]
worldofme Offline
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Registered: 08/12/15
Posts: 377
What is your take on Cimzia?

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#277495 - 03/10/17 04:30 AM Re: How do I get MTX? Doc wants me to take TNF blocker [Re: worldofme]
mpc2012 Offline
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Registered: 03/15/09
Posts: 316
Why not take a TNF? I have been on them for over 15 years now and no problems. TNFs are much safer than the other options. And TNFs stop the progression of the disease.

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#277514 - 03/11/17 11:53 AM Re: How do I get MTX? Doc wants me to take TNF blocker [Re: worldofme]
GardenGnome Offline
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Registered: 08/28/16
Posts: 72
First of all you said your doctor will not prescribe NSAIDS. Duexis is a NSAID mixed wit hanother drug to prevent/slow down ulcers. Secondly, he shoudl be able to prescribe MTX but MTX alone isnt shown to work well on spinal inflammation. You ARE on your last resort. Biologics are wonder drugs for this disease. They all seem to work well. Remicade, Simponi, Humira, Cimzia, Enbrel. Remicade seems to have the most sideffects out of those but only by a little. Humira is the most used and the #1 or #2 most profitable drug in the world. Simponi seems to have less antibody formation that the others which is good. Listen to your doctor and take your biologic drug. Why wait? You'll jsut damage yourself by waiting and then eventually taking it.

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#277516 - 03/11/17 08:35 PM Re: How do I get MTX? Doc wants me to take TNF blocker [Re: worldofme]
worldofme Offline
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Registered: 08/12/15
Posts: 377
Just afraid of the side effects from all this.

Humira scared me


I'm still in denial thinking my arthritis will go away once I take the right abx. This seems to be far from truth.


How to tell damage without mri? I'm going for one in few weeks.

It's just most doctors non rehumi, think tnf are so bad for you.

How about ldn?

My spine cracks, make popping noise and fatigue.

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#277517 - 03/11/17 10:48 PM Re: How do I get MTX? Doc wants me to take TNF blocker [Re: worldofme]
GardenGnome Offline
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Registered: 08/28/16
Posts: 72
What side effects are you specifically scared of?

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#277526 - 03/13/17 02:57 PM Re: How do I get MTX? Doc wants me to take TNF blocker [Re: worldofme]
worldofme Offline
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Registered: 08/12/15
Posts: 377
Reactivation of post ebv, cmv , cancer, and breathing issue, and heart pounding.

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#277529 - 03/13/17 07:16 PM Re: How do I get MTX? Doc wants me to take TNF blocker [Re: worldofme]
GardenGnome Offline
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Registered: 08/28/16
Posts: 72
Breathing issues and heart pounding and throat swelling would be an allergic reaction to the injection that is why a nurse help you inject the first time so they can give you meds to stop that if it happened(benedryl and prednisone). Once meds are given that goes away within minutes. The chance of that happening are higher with remicade since its a chimeric drug and IV. Humira, simponi, cimzia are fully human and the risk is drastically reduced to lower than 0.1% of injections. That means it doesnt happen 99.9% of the time. Ive spoken with numerous nurses and doctors that have 100's of patients who use these drugs and ALL of them have said that they have never had a patient have an anaphylactic reaction to those. Think about that. Lymphoma caused by TNF inhibitors seem to be non existent in AS patients but existent in RA and Crohn's patients. However, very rare. You have a better chance of dying while traveling in a car than getting these side effects. Stop worrying so much. You have a chance to die from everything you do everyday. But you arent worried about that. The most common side effects are upper respiratory infections like pnuemonia and bronchitis etc. That is wh you get a pnuemonia vaccine before hand. And if you did get that you jsut take antibiotics for it. Those things are more of a problem for the elderly. Remember those side effects you hear of also include elderly people who have a hard time when something goes wrong. I was scared of taking Humira and gave myself panic attacks everytime i took an injection. Nothign ever happened but i woudl wait for it to happen. I didnt even get local swelling or pain where the injection was put. Nothing at all.


Edited by GardenGnome (03/13/17 07:21 PM)

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#277542 - 03/14/17 04:09 PM Re: How do I get MTX? Doc wants me to take TNF blocker [Re: worldofme]
worldofme Offline
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Registered: 08/12/15
Posts: 377
I don't have specific AS diagnosis but " Seronegative Spondy" doc says same thing treatment is the same biologics.

Would this work for Chronic Reactive Arthritis?

I am HLAB27 Negative.

INsurance won't approve enbrel until I take Cimzia.

Do you skip your shots?

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#277557 - 03/17/17 03:07 PM Re: How do I get MTX? Doc wants me to take TNF blocker [Re: worldofme]
Ucla08 Offline
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Registered: 03/13/17
Posts: 3
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 05:11 PM Re: How do I get MTX? Doc wants me to take TNF blocker [Re: worldofme]
SouthernMoss Online
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Registered: 03/12/13
Posts: 1604
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 05:43 PM Re: How do I get MTX? Doc wants me to take TNF blocker [Re: worldofme]
Ucla08 Offline
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Registered: 03/13/17
Posts: 3
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 06:06 AM Re: How do I get MTX? Doc wants me to take TNF blocker [Re: worldofme]
Winston Offline
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Registered: 06/30/16
Posts: 104
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 12:18 PM Re: How do I get MTX? Doc wants me to take TNF blocker [Re: worldofme]
Spring_hill Offline
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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 01:34 PM Re: How do I get MTX? Doc wants me to take TNF blocker [Re: worldofme]
SouthernMoss Online
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Registered: 03/12/13
Posts: 1604
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 01:39 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: 1604
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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