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#279136 - 09/30/17 07:46 PM Scared to Take Biologics  
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gil Offline
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I am 66 year old and have lived with an AS diagnosis for 34 years. Except for the 3+ years that Vioxx was on the market, Indocin 75SR was an almost perfect medication for me until, after 32 years, my kidney numbers started dropping. So I have cut my Indocin usage to one 25mg of Indocin at night and now have better kidney function but constant pain. All in all, I have been able to handle my AS fairly well. No major lifestyle intrusions and I can still ski (a sport well designed for a fused spine). But now there is hip pain at low dose meds and constant stiff neck.

That is my lead up to the question. I have been encouraged by my docs for years to go on Biologics but the warnings and side effects scare me more than the my Kidney issues. I have been in the "devil you know" vs. "the devil you don't" world. There is so much to fear in the biologics if you believe 1/10 of the warnings.

So I would be interested in hearing what you all have been taking in biologics, what it has been like, side effects you have suffered, etc. I need to get over the fear.

Thanks

#279137 - 10/01/17 02:00 AM Re: Scared to Take Biologics [Re: gil]  
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Thesnakejakw Offline
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Originally Posted By: gil
I am 66 year old and have lived with an AS diagnosis for 34 years. Except for the 3+ years that Vioxx was on the market, Indocin 75SR was an almost perfect medication for me until, after 32 years, my kidney numbers started dropping. So I have cut my Indocin usage to one 25mg of Indocin at night and now have better kidney function but constant pain. All in all, I have been able to handle my AS fairly well. No major lifestyle intrusions and I can still ski (a sport well designed for a fused spine). But now there is hip pain at low dose meds and constant stiff neck.

That is my lead up to the question. I have been encouraged by my docs for years to go on Biologics but the warnings and side effects scare me more than the my Kidney issues. I have been in the "devil you know" vs. "the devil you don't" world. There is so much to fear in the biologics if you believe 1/10 of the warnings.

So I would be interested in hearing what you all have been taking in biologics, what it has been like, side effects you have suffered, etc. I need to get over the fear.

Thanks




First of all, I do hope you feel better soon! I do not take a biologic , I take methotrexate, which had scary warning labels on it I was told by my doctor that these warning labels are just possible side effects and low chance, unsure if the same is for biologics but to your older age, you have every right to question these side effects, especially if it weakens your immune system, It is totally up to you, Are you taking any muscle relaxers or pain medication for your pain? If you do not want to try a biologic I recommend asking your doctor for zanaflex, robox, Or carispodol, I don't know your stance on muscle relaxers and opioids , but like you in kind of a way I have severe health issues, Ankylosing spondylitis, Diabetes type one, and celiacs disease with complications with low bone mass, They put me on heavy steroids that made me sick, Methotrexate makes me sick every time I take it, its a little better with injections. But My best treatment so far for pain has been Soma 5 times a day and oxycodone 10mg every 4 hours. I rather take these meds then another medicine that will compromise my immune system or worse, At your age I am guessing your spine has already fused, and they are drugs that say they are miracle drugs but I have talked to many people waiting for the same doctor I have been waiting for in the waiting room and they tell me the biologics have not slowed there disease down or helped there pain for 20 years and they only take the medication to get the other pain meds and muscle relaxers or steroids easier. Due to your kidney problems as well, You really don't have to take my advice though as it really is not advice and just my opinion. Don't consider not taking a biologic because what I said, but just think what is best for your self.


Diagnosed 4+ months ago with as causes chest pain and severe back pain . Medications : methotrexate .6 per week in divided doses, Prednisone tapering off 2 5mg daily, folic acid mg daily, dicloymine for stomach pain and cramping , ranitidine 150mg twice daily and Prilosec 20mg extended release once daily , Carispodol (Soma) 350mg 5 times daily , oxycodone 10mg every 4 hours as needed
#279139 - 10/01/17 12:46 PM Re: Scared to Take Biologics [Re: gil]  
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WhiteCell Offline
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It would appear of the face of the question that a biologic might work as Indocin does inhibit inflammatory prostaglandins. Biologics are known for their benefit of doing the same thing but do it a little differently but they both work well.

I also validate your attitude as ALL mediations have potential side effects and problems. I encourage you to trust your "gut" feel. That said as a patient I have had 17 years of excellent results with Remicade and (fingers crossed) not had any problems. It works and it works well.

Originally there was a clear fear that Remicade would cause a large increase in cancers as it binds to tumor necrosis factor which inhibits tumor growth. While it can and occasionally does do this, the numbers of cases are very low. Additionally, it was feared that suppressing the bodies immune function would case large and very dangerous infections. This has not been the case in large studies worldwide. Having followed TNF blockers from inception in the trials in Europe Remicade (and now Enbrel Humira etc) have been shown to be safe, however trusting your own intuition is crucial in making your decision and as a nurse I always encourage people to go slowly until they are comfortable.

What they have found is that certain infections and pre existing problems with the pulmonary system (TB, CHF) can weigh against starting a biologic. Sounds like those are not your issues.

I took Voltaren for many years and it worked well for me. Quite potent it was found to have cardiac effects so I was taken off it. Soon after I started Remicade.

It can be hard to balance pain and activities vs. risk of medication. If you can perform your daily activities and enjoy your sports mitigating pain and stiffness with heat, hot packs massage or any number or self care and be satisfied then I would. If however, your mobility are restricted due to pain stiffness or fatigue especially I would encourage you to talk with your doctor about improvident to your quality of life. Pre existing conditions should be forefront in your mind especially any family history or cardiac or pulmonary issues. Finally, if you take safely take another oral medication (as posted by the above poster) I would ask your doctor about it to see if it's a candidate.

Finally, the biologics are not bullet proof and many times don't work for people so choosing the best one for you is important. Your symptoms should tell your doctor which one might work best. If you have eye involvement Remicade is typically prescribed 1st. My point is to analyze with your MD the "why" would one biologic over another be better. This first medication is crucial so have your doc justify why they would recommend one biologic over the other. There is no substitute for patient's intuition. and I always recommend going slowly until you are satisfied that your doctor knows what he/she is talking about and YOU trust it. Getting a 2nd opinion on a medication choice can be very helpful as well.

I got lucky. I had a great doctor, who saw me for over a year and thought about my case carefully before starting me on Remicade. In my case it was absolutely helpful.

You sound active. I don't ski but I imagine you have to make lots of good decisions and quickly when youre sliding downhill.

Best of luck in your choices.


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.
DSEK Cornea Transplant 2009.
Ahmed Shunt 2016.
DSEK Cornea Transplant 2016.
Supra Ventricular Tachycardia. 2004. Cured by RF ablation 2008.

ICU RN - Seattle, WA

~Grasp The Challenge and Succeed~
#279140 - 10/01/17 04:09 PM Re: Scared to Take Biologics [Re: gil]  
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Winston Online
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I have been on Enbrel for about two years and have (knock wood) experienced no serious side effects. Initially, I experienced some moderately severe injection site reactions (a softball-sized hive at the injection site each week plus lots of itching), but that stopped after a couple of months. I have not gotten sick more often on the drug, but when I do get sick (catch a cold, etc.) it takes me a little longer to recover than other members of my family. My rheumy does blood work at least every 6 months to monitor my blood count and liver/kidney function. No liver or kidney problems at all so far, and my previously-elevated white count has come down to normal range. I no longer have to take NSAIDs daily. I supplement with over-the-counter Aleve as needed, which is usually just during flares. Flares do occasionally still happen when you're on biologics, but I find that they're not as severe and don't last as long.

Like WhiteCell's doctor, my rheumy went back and forth on the biologic question for about a year before I started Enbrel. I was doing okay on Aleve and with exercise. But then we discovered that I suffer from a rare complication/manifestation of AS, a dilated ascending aorta. When that was discovered, my rheumy emphasized that starting a biologic was imperative and that not doing so would be against medical advice/standard of care.

I echo WhiteCell's advice that you and your doctor carefully choose your first biologic to address your specific symptoms. Many rheumies prefer to start with Enbrel because it often causes fewer side effects than the other drugs and because you're less likely to develop antibodies to Enbrel that make it stop working. But, as WhiteCell notes, there may be particular reasons why a different drug would be best to treat your symptoms. I didn't know that about Remicade and eye issues. I did know that Humira is often preferred in people who also suffer from irritable bowel disease. Enbrel isn't even approved to treat IBD. My rheumy chose Enbrel for me because Enbrel has been used to successfully treat other types of vasculitis, particularly Takayasu's arteritis which also causes dilation of the ascending aorta.

Good luck to you. Starting a biologic is scary, but I think most people find, after they start one, that it is no big deal and they wonder why they waited so long. I hope that is the case for you.

#279141 - 10/02/17 03:07 AM Re: Scared to Take Biologics [Re: gil]  
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Flowers Offline
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Hi - I understand it is a hard decision to make. I have been unlucky with biologics due to side effects. My last biologic I was on, Simponi, may have caused nerve damage all over my body. I now have a lot of pain from neuropathy and I have tachycardia and my bladder is damaged. I almost died from Remicade due to severe allergic reaction. Enbrel caused me all over hives that lasted years. My doctor is telling me I cannot take another biologic right now but I would chance it again for the pain relief. Now I take leflunomide, steroids and sulfasalazine. However, my older sister has been taking Remicade for many years and has been in remission ever since and is still living a very good life, working full time.

Good luck and keep us posted.

Shari


Arava, low dose daily Prednisone, sulfasalazine
#279151 - 10/02/17 09:40 PM Re: Scared to Take Biologics [Re: gil]  
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SouthernMoss Online
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In all honesty, the NSAIDs scare me more than the biologics. The bad side effects of biologics are much more rare than the bad side effects of NSAIDs. The biologic warnings are just more "in your face" because of the TV and magazine ads. But NSAIDs cause an increased risk of heart attack and other cardiovascular events, stroke, ulcers, perforations of the GI tract, kidney problems (as you have noted), and other serious side effects.

I've been taking Humira for a little over 3 years now. I have no side effects. Occasionally I hit a vessel when I inject and that causes a big bruise. Otherwise, nothing. My rheumy chose Humira because it is also effective for the eye issues I was having (iritis and scleritis).

I rarely get sick, but when I do get a cold or upper respiratory infection it will take a little longer for me to recover. The main thing to remember is to start treatment of an infection immediately and to follow your rheumy's instructions as to when or whether you should stop your biologic and for how long. I follow basic hygiene measures (hand washing, etc) but I don't go to extraordinary lengths (masks, gloves, etc).

Obviously I'm not qualified to tell you what to do. But since your doctors have been encouraging you to try biologics, I would suggest you discuss your fears with them. Ask them about the blood work and other tests they will do to keep a watchful eye for any side effects. (My rheumy does blood work every 3 months.) Ask them at what test values they would begin to consider pulling you off the biologic. Becoming more educated about the process can help you make a more educated decision.


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 Indomethacin ER as needed
Supplements: Folic Acid, Vitamin A, Vitamin D, Calcium, Fish Oil, Melatonin, Culturelle probiotic
#279157 - 10/03/17 11:32 AM Re: Scared to Take Biologics [Re: gil]  
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Ken Delano Offline
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I started on Enbrel back in 2004. It has given me a new lease on life. I've said this many times. I'd rather live a shorter life with quality than a longer one that is miserable.


AS/PsA DX in 1988

Retired on disability
in 2005 at age 44
#279162 - 10/03/17 01:52 PM Re: Scared to Take Biologics [Re: gil]  
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I was in the same boat. These meds scared the crap out of me. Even though we are still figuring out what works best for me. I was on humira for about 4 months with no major side effects. Believe it or not I didnt even get a cold while on the humira. I was constantly sick before, Im sure my body was just exhausted from dealing with all the pain. The humira did help at first but quickly wore off, which is why Im changing and trying cosentyx. But even though I dont have it figured out, my life is much better on these meds than before. I still take my tramadol and celebrex, but Im a lot more comfortable than before. While I still feel like Im managing this disease, Im not miserable every second of every day like before. Best of luck


diagnosed at 32.
HLA B27 Positive
Currently on Humira, Tramadol, and celebrex
#279266 - 10/12/17 05:55 PM Re: Scared to Take Biologics [Re: gil]  
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I have been on several different Anti TNFs since 2004 and I wish I had been on them sooner because the damage that could have been prevented. I have never caught anything. I had no idea bad the fatigue was until I started Humira (my first) and wow, so much more energy in just a few weeks.

What side effects are you afraid of? Some of the cancers are not longer side effects but because people had suffered so many years with inflammation that THAT caused the cancer. Now that people are getting on the meds earlier in the disease, they know it is not the meds but the darn disease.

I am 61 years old and so very happy to be on these meds.

Anna


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.
#279374 - 10/27/17 07:55 PM Re: Scared to Take Biologics [Re: gil]  
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gil Offline
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Thanks all for the timely comments. My MD (a personal friend of 40 years) likes to tell me he has wanted me to switch to Biologics for years. My brother, also an MD, says that he has had 30 patients on Biologics and none mention side effects. My Kidney doc is a "quality of life guy so he has no opinion. My Rheumy has been pushing me hard. Bottom line as that I have tolerated the NSAID Indocin for over 30 years and it has worked great except now the Kidneys do not like it. As I have reduced the dosage, I find myself in constant pain in hips and neck so to save my Kidneys it just seems time to try something else. Wish Vioxx was still around. YOur comments above had made me feel a little better about taking the plunge so that has been really helpful.

Tramadol and Celebrex provided me no relief,

My family has no history of heart problems. I have been pretty healthy but for AS but have been luck enough to have full mobility. I just do not want to spend my final 20 years in pain.

I am glad to see that I am not the only one who has been reticent to dip the toe into the biologic waters.
Thanks again. Seeing the Rheumy on Monday to start the process. Will let you know what happens

By the way, what is it costing you all?

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