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Has Anyone Els Had This Experience I Mentioned Below?
A MySpondylitisTeam Member asked a question 💭

I have taken prednisone now for about 5 to 6 months. I feel almost normal on it with no major flares. My Dr. has tried me on Humira to replace the prednisone. I took one dose and got Covid, then had a HSV breakout, then a urinary track infection, then viral again. I couldn’t get over being sick for months. Needless to say I stopped taking Humira. Still on prednisone with no problems what so ever. Then he tried cosentyx on me. My first dose I got this migraine headache with pressure on my head… read more

posted March 9
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A MySpondylitisTeam Member

Yes prednisone is definitely detrimental in the long term. Prednisone was never meant to be long term. It is used for acute only. And yes it is natural to feel so much better while taking prednisone. That is what it was designed to do. But it is a false improvement so to speak, as it does not cure or treat diseases efficiently. It only masks the symptoms for a time. Which is why Most doctors will start prednisone to get you some relief short term while starting you on a maintenance medication of some kind, then weaning the prednisone. But hopefully you will be able to find something that works for you. It is not unusual to have to try multiple medications before you find the right concoction for you. May need to start out at a low dosage and then increase later as your body adjusts. Or you may just decide to stay at a low dose. However, if it is an immunosuppressant, you will continue to be susceptible to illness to some degree. That seems to be the trade off with those kind of medications.

posted April 4
A MySpondylitisTeam Member

Hi Andy, I would love to just stay on the prednisone, but Dr.s do not want you on it long term. They say it will cause problems for me in the future. I have absolutely no problem on prednisone it is a God send to me. Without it I can’t even get out of bed. My Dr. Wants to replace it with a biologic. It’s awful finding something that works just to have Dr.s wanting to take it away. Thank you for your response.

posted March 9
A MySpondylitisTeam Member

@A MySpondylitisTeam Member.
1. Biologics target specific protein molecules that are inflammatory cytokines. The human body produces many different types of cytokines, some inflammatory, some anti-inflammatory. Each biologic targets just one inflammatory type. If your body is not producing the type targeted by a biologic, the biologic will not only be ineffective, it can, and often does, make you sick because if a cascade of molecular responses in your immune system to the introduction of a new type of DNA.

2. Biologics are recombinant DNA engineered in a lab. Recombinant means two types, or possibly more, of DNA are recombinec to make a new one. Here's your daily shocker, most biologics used Chinese Hamster ovaries in the development of the drug. Why any human ever thought that was a good idea is anyone's guess. Personally, I speculate an enormous class action suit on the horizon.

3. A test for cytokines in the blood does exist that can determine which one(s) are causing your inflammation. However, that test is not readily available. Another subject of speculation. I, personally, tried 5 different biologics before I got through all my research on them and decided I absolutely will never use another one without having a cytokine panel first to show which one is best suited for me. At this time I will likely have to drive 4.5 hours to a Mayo hospital to get this test.

4. I LOVE prednisone too. It makes me feel almost normal again. However, steroids lead to diabetes, heart disease, liver and kidney failure, and also weaken your immune system by turning down your body's immune response to all pathogens and injury reactions. They cause bone loss (osteoporosis) and psychosis. Thats why drs don't like us on them long term. That you have been taking them for half a year is pretty astounding. I know of others who have taken them that long and longer, but not many because its very dangerous to health. That's the reason why you have been sick so frequently and reacting badly to the biologics. It's time to go med free for a few months. Hard, but doable. You need to get back to your body's baseline before throwing more mecs at it. Good luck.😌😔🙏

posted March 12
A MySpondylitisTeam Member

@A MySpondylitisTeam Member
I know all too well about this. I went 9 years undiagnosed with endometriosis until I had to research and diagnose myself. The Dr.s told me that it was all in my head and to see a psychiatrist! Which I did but knew there was something really wrong with me. I was never and still not taken seriously. I went 10 years undiagnosed with AS even though my brother had it since he was 17 now 52. I have no trust or faith in the medical establishment. If it wasn’t for my trust and faith in God I would be a basket case. Thank you for sharing. I understand unfortunately.

posted March 9
A MySpondylitisTeam Member

@A MySpondylitisTeam Member. Yes, it is overwhelming. I found it helpful for a couple of years to keep a detailed log of what I ate, took, did. "Painscale" is an app that I used and it has several features that are very helpful for figuring out what triggers your pain and methods you use to manage it. It even can connect to your doctor's office if you want that level of assistance. There are many helpful articles in the app as well.

I love prrednisone too, but not enough to get joint necrosis, or on an organ transplant list. There is no magic bullet. I find eating a high nutrition, no garbage diet and taking strong anti inflammatory oriented antioxidant supplements very helpful. My favorites that come closest to resembling what prednisone does for me are Andrographolide and Fucoxanthin. Read about their uses and benefits at National Institute of Health.gov. I'm on a tapering dose of prednisone currently and I introduced half the recommended daily dose of my supplements back into my regimen so that they are in my system by the time the prednisone wears off completely. It's a balancing act for sure. Drink lots of water to keep your kidneys cleared out. Avoid alcohol and sugar like the plague, very high inflammatory.

Stress is the toughest one. Remove as much of that from your life as possible. Where you can't, get help managing it. That may be hiring help around home or getting into professional stress counseling and management, changing jobs, whatever it takes. Easier said than done to be sure, but worth it in the long run. Life is too short to risk severe even more debilitating health than that involved with pain alone. Think how it can be with all that pain and some awful total organ failure and no more prednisone. Look into Cognitive Behavior Therapy and also Acceptance Commitment Therapy. Multi modal methods is most affective.😌🙏 Reach out anytime.

posted March 19
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