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Help! #280482
05/30/18 12:36 AM
05/30/18 12:36 AM
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DadCue Offline OP
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Hello ... I am new to this and somewhat private so will not go into too many details. I was diagnosed with reactive arthritis 25 years ago and was HLA-B27 positive. I presented with severe back pain (only at night) which was torture and severe uveitis with various other GI symptoms which probably occurred because of too much ibuprofen. While being treated for the uveitis I was given 4-5 little white pills (probably prednisone) and was told it would help with the inflammation in my eye. The back pain miraculously stopped that same night ... uveitis resolved a week or two later with steroid drops. For the next 15 years I only went to opthalmology once or twice per year for recurrent uveitis. The first few were said to be very aggressive such they would skip the steroid drops and immediately start oral prednisone which was once increased to 100mg and then tapered. Instead of always having steroid drops for uveitis I would have oral prednisone available. That also worked well for lots of random, frequently severe pain which I called "pain for no reason". The pain was isolated to almost any joint but usually lower back and usually at night. with lots of morning stiffness. I was guilty of self medicating and avoided problems with doctors until I once ran out of prednisone and wasn't "lucky" enough to have uveitis. The pain got bad enough that I had to find a primary care MD to write a prescription for prednisone. That was 10 years ago.

I was informed that I could not take prednisone and had to see rheumatology. During the first year under the care of rheumatolgy, I was tried on the usual medications for reactive arthritis which didn't work well and they decided I also had polymyalgia rheumatica (PMR) and prescribed prednisone long term. By this time the pain had spread everywhere and seemed chronic but not that severe. The good part about taking prednisone everyday was I stopped getting uveitis. I did manage to taper off prednisone occasionally but would eventually have a flair which I called a "pain crisis" and went back on prednisone.

I used to manage reasonably well on NSAIDS whenever I was able to taper off prednisone except 5 years ago I had an extensive bilateral pulmonary embolism after getting norovirus and now take coumadin for life. The pulmonary embolism didn't involve any pain which was strange. Anyway, no more NSAIDS because of coumadin.

The prednisone controled things reasonably well until 2 years ago when I tapered off and I developed hip pain that radiated down to my ankle and caused some foot drop. An MRI revealed severe lumbar stenosis and surgery was recommended but prednisone once again rescued me and I haven't had the surgery.

I am a retired RN and have a reasonable understanding of ankylosing spondylitis. I think my symptoms suggest AS instead of reactive arthritis/PMR for many reasons but I guess with all the variability from person to person who knows. My inflammation markers are almost always somewhat elevated even on prednisone.
which suggests active disease. I have never tried any biologics. I currently want to convince my doctors that it would be worth a try. I would like to know if a biologic is indicated for reactive arthritis and would they be any better than prednisone. Thanks.

Re: Help! [Re: DadCue] #280500
06/01/18 12:57 PM
06/01/18 12:57 PM
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Whidbey Island WA
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WhiteCell Offline
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The Dx are biosimilar though the genesis differ. Treatment for chronic RA includes biologics. If your Rheum needs "convincing' a literature search of efficacy should not be to hard. In addition inflammation in both Dx is the hallmark of the disease. Your history of Uveitis suggests that Remicade would be a modality which is shown more effective when eyes are involved.

Many times in medicine as you know, you can present evidence of efficacy but the doctor will pick up the phone and call his colleague. As you are not that far from Rochester MN I would think perhaps a 2nd opinion might be useful. They may be more helpful that one might think.

It sounds as if treatment modalities for your history are "encouraging" another option. Biologics are well suited for Reactive A and successful treatment I think would be a good chance as Prednisone worked well. The key point to advance is not a label of a disease but the inflammation and it's effects. Biologics are simply superior and are designed to forestall it.

Good luck.

Last edited by WhiteCell; 06/01/18 12:58 PM.

Starting at 18 yrs old > Reiter's Syndrome. Diagnosed 2001 Ank Spon.
Started Remicade 2002 - 5mg/kg every 7 weeks.

Right Eye Glaucoma- Trabeculectomy/lens replacement 2006.
Right eye DSEK Cornea Transplant 2009.
Right eye Ahmed Shunt 2016.
Right eye DSEK Cornea Transplant 2016.
Supra Ventricular Tachycardia. 2004. Cured by RF ablation 2008.

ICU RN - Seattle, WA

~Grasp The Challenge and Succeed~
Re: Help! [Re: DadCue] #280504
06/01/18 05:14 PM
06/01/18 05:14 PM
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Iowa City, IA USA
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Rochester MN would be a competitor to the place where I worked my entire life and where I have a high degree of loyalty.

I absolutely agree that "it isn't about the label of the disease but the inflammation and it's effects".

Are biologics superior to prednisone for systemic inflammation? I am under the impression that prednisone is a very potent anti-inflammatory. I know about the side effects of prednisone. For me, cataracts maybe, but thought to be caused by recurrent uveitis, high BP probably, significant belly fat but I'm not alone there. I have tried a couple drugs in combination with prednisone but that seems to cause an infection but prednisone alone doesn't.

The effects of chronic systemic inflammation are taking a toll as evidenced by bilateral knee replacements, ruptured tendon repair, lumbar stenosis due to arthritis of some kind, peripheral neuropathy, and arguably trigeminal neuralgia which seemed to be exacerbated by inflammation.

The MD that gave the seminar in Denver recently intrigued me about AS. I watched it online. He was linked to the Denver VA which may be the system I turn to soon and I am eligible for. I don't know how Medicare will be in the not too distant future but for now, I have great insurance.

I would rather not see any more doctors but I respect them all and with few exceptions, I have liked most all.

How many doctors do referrals electronically? My medical records are all in EPIC.

Re: Help! [Re: DadCue] #280506
06/01/18 06:26 PM
06/01/18 06:26 PM
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Biologics have been shown to help prevent progression of the disease. Prednisone does not.


Ginny - 57 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 Celebrex as needed
Supplements: Folic Acid, Vitamin A, Vitamin D, Calcium, Fish Oil, Melatonin, Culturelle probiotic
Re: Help! [Re: DadCue] #280507
06/01/18 06:42 PM
06/01/18 06:42 PM
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WhiteCell Offline
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Yes biologics are designed specifically to interrupt the cycle of inflammation. That is how they work so well. They are fundamentally different than prednisone which dampens inflammation. TNF blockers bind to the TNF cytokine and don't allow it to engage it's receptor site. Have you approached your Rheumatologist about the biologics thus far?


Starting at 18 yrs old > Reiter's Syndrome. Diagnosed 2001 Ank Spon.
Started Remicade 2002 - 5mg/kg every 7 weeks.

Right Eye Glaucoma- Trabeculectomy/lens replacement 2006.
Right eye DSEK Cornea Transplant 2009.
Right eye Ahmed Shunt 2016.
Right eye DSEK Cornea Transplant 2016.
Supra Ventricular Tachycardia. 2004. Cured by RF ablation 2008.

ICU RN - Seattle, WA

~Grasp The Challenge and Succeed~
Re: Help! [Re: DadCue] #280508
06/01/18 07:24 PM
06/01/18 07:24 PM
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Iowa City, IA USA
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This was the reply when I suggested my symptoms were "AS-like" as compared to "RA-like" and suggested a biologic.

"Prednisone is notoriously NOT effective for AS spinal symptoms, so that also argues against this being "AS-like". [But did make it much more PMR-like]. TNF-inhibitors don't work for everything (eg, don't help PMR or mechanical back pain). Likely have some benefit for "reactive arthritis", and we do try them for recurrent uveitis if the pill-meds you have already tried have failed (I think you have tried most). So important question: have you had any flare of uveitis in the last year? --- My answer was no, not while on continuous prednisone."

She continued

"On the PMR front, we will soon (but not quite yet) be enrolling patients in a trial of an IL-6 receptor blocker for PMR. I can't tell you now if you would meet criteria for the study, but you might. I can keep you posted. "

Re: Help! [Re: DadCue] #280509
06/01/18 09:23 PM
06/01/18 09:23 PM
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WhiteCell Offline
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I was diagnosed with reactive arthritis 25 years ago and was HLA-B27 positive. I presented with severe back pain (only at night) which was torture and severe uveitis with various other GI symptoms That also worked well for lots of random, frequently severe pain which I called "pain for no reason". The pain was isolated to almost any joint but usually lower back and usually at night. with lots of morning stiffness.

This is a textbook presentation of AS.

I used to manage reasonably well on NSAIDS whenever I was able to taper off prednisone except 5 years ago I had an extensive bilateral pulmonary embolism after getting norovirus and now take coumadin for life.

There are now newer blood thinners which may be more effective to prevent PE and which don't require monitoring.

The prednisone controled things reasonably well until 2 years ago when I tapered off and I developed hip pain that radiated down to my ankle and caused some foot drop.

I would argue that this is not related to the tapering of prednisone but a flair of AS.

An MRI revealed severe lumbar stenosis and surgery was recommended but prednisone once again rescued me and I haven't had the surgery.

You don't state the date, but I would recommend this be repeated.

Your story is why a 2nd opinion with new eyes would be, imho, an advantage to you. Even though you believe that prednisone has been the effective treatment, your flares could be come and go independent of the medication. Understanding your desire for privacy and sensitivity to new doctors and despite your loyalty, there comes a time when an expert value can serve a very real asset and spark a review with you doctors.


[/quote]

Last edited by WhiteCell; 06/01/18 09:26 PM.

Starting at 18 yrs old > Reiter's Syndrome. Diagnosed 2001 Ank Spon.
Started Remicade 2002 - 5mg/kg every 7 weeks.

Right Eye Glaucoma- Trabeculectomy/lens replacement 2006.
Right eye DSEK Cornea Transplant 2009.
Right eye Ahmed Shunt 2016.
Right eye DSEK Cornea Transplant 2016.
Supra Ventricular Tachycardia. 2004. Cured by RF ablation 2008.

ICU RN - Seattle, WA

~Grasp The Challenge and Succeed~
Re: Help! [Re: DadCue] #280511
06/02/18 03:46 PM
06/02/18 03:46 PM
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Iowa City, IA USA
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I will work on getting the second opinion ... In the past, I have been "handed off" to a different doctor. I didn't know why sometimes and just thought the first one didn't know or didn't believe me when they didn't "see" anything wrong. The evidence of chronic systemic inflammation is now apparent but the question of WHY hasn't been fully explained.

The MRI of my lumbar spine was in Oct 2016. The surgery that was proposed sounded major and involved fusion of L3 to L5 and didn't promise significant benefit. According to the spine surgeon "the nerves were being crushed but pain would be the criteria for proceeding with surgery." The pain that prompted the MRI hasn't returned, was relieved with prednisone and hasn't been a huge problem since. I am sure they will repeat the MRI when the time comes.

WhiteCell, I truly appreciate the input. How did your diagnosis of ReA get switched to AS? I have noticed reading other comments the one diagnosis frequently gets switched to another. I was once told that I was unlucky to have BOTH ReA and PMR. Now I read recurrent uveitis may be a "stand alone" condition and therefore maybe have all three.

It seems to me, genetics play a huge role. HLA-B27 was the only gene implicated 25 years ago but now many many more. I seems that symptoms are based on which combination of genes that are inherited. More or less, "the luck of the draw".

Re: Help! [Re: DadCue] #280515
06/03/18 11:55 AM
06/03/18 11:55 AM
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WhiteCell Offline
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I did not have ReA mine started with Reiters Syndrome. Either case the suspiciousness of your symptoms and the inflammatory process is the "marker" not necessarily a Dx. The 2nd opinion outside of your milieu is key, at least in my opinion. Yes Uveitis can be a inflammatory process on it's own but in the presence of signs like yours it would be prudent to thoroughly investigate the AS. In the meantime, is your Rheum compatible with the idea of moving to a biologic and tapering the prednisone after say 3 months into treatment? Just an idea.


Starting at 18 yrs old > Reiter's Syndrome. Diagnosed 2001 Ank Spon.
Started Remicade 2002 - 5mg/kg every 7 weeks.

Right Eye Glaucoma- Trabeculectomy/lens replacement 2006.
Right eye DSEK Cornea Transplant 2009.
Right eye Ahmed Shunt 2016.
Right eye DSEK Cornea Transplant 2016.
Supra Ventricular Tachycardia. 2004. Cured by RF ablation 2008.

ICU RN - Seattle, WA

~Grasp The Challenge and Succeed~
Re: Help! [Re: DadCue] #280517
06/03/18 03:31 PM
06/03/18 03:31 PM
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Iowa City, IA USA
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I believe Reiter's Syndrome and ReA (reactive arthritis) are the same. I was originally told that I had Reiter's syndrome. My diagnosis then gradually changed to inflammatory arthritis and THEN reactive arthritis and THEN both reactive arthritis and PMR (polymyalgia rheumatica). Prednisone is the ONLY treatment for PMR that I am aware of but biologics are being tried. I'm not sure if any are approved.

I am very interested in AS ... there was even a "non-specific" SI erosion on an x-ray long ago. I don't think AS got much attention back then. I don't think I have any "fusion". except maybe surgical fusion in the future.

I like your idea. I am willing to try something else. I don't actually see my rheumatologist that often but I know her well. I report symptoms to my primary care MD and he confers with whatever specialist. I know people in almost every department in the hospital either personally or professionally. Iowa City is a small town with a huge hospital. I try not to get caught up in diagnostic and treatment part and just report the symptoms.

Yes, I think that I could "convince" my rheumatologist to moving to a biologic and tapering prednisone after 3 months as you suggest.

I need to learn more about Remicade.

Re: Help! [Re: DadCue] #280520
06/04/18 01:03 PM
06/04/18 01:03 PM
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WhiteCell Offline
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Yes, underlying all these manifestations is inflammation. Tumor Necrosis Factor is a cytokine which when it binds to tissues creates inflammation. The benefit as the name suggests is to prevent the migration of tumor cells into tissues, however, after years of autopsies which revealed that TNF was present at very high levels in people with arthritis, the search was on for a solution.

Concomitant to these studies was the United States sponsorship of "orphan drugs", ones which attempted to respond to suffering of it's citizens. I'm sure the business relationships are complicated however Johnson and Johnson created a new division Centocor https://www.pharmaceutical-technology.com/projects/centocor/ which over many years developed a medication designed to respond to Crohn's Disease and the suffering it caused. Centocor conducted trials of Infliximab (Remicade) in Europe over ten years.with startling success. The FDA approved it for treatment of Crohn's and it did not take long for it to be tested for Rheumatoid then AS and onward.

The story is legendary in the creation of a gazillion $ blockbuster drug and a medication which alleviates the suffering of millions world wide.

I am really pleased to hear how intimately connected you are in your hospital, there is a certain trust which develops and can be a real benefit for you as you seek answers. Safety, efficacy and results are the hallmark of starting a new medication. Best of luck to you.

Cell

Last edited by WhiteCell; 06/04/18 01:08 PM.

Starting at 18 yrs old > Reiter's Syndrome. Diagnosed 2001 Ank Spon.
Started Remicade 2002 - 5mg/kg every 7 weeks.

Right Eye Glaucoma- Trabeculectomy/lens replacement 2006.
Right eye DSEK Cornea Transplant 2009.
Right eye Ahmed Shunt 2016.
Right eye DSEK Cornea Transplant 2016.
Supra Ventricular Tachycardia. 2004. Cured by RF ablation 2008.

ICU RN - Seattle, WA

~Grasp The Challenge and Succeed~
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