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#278243 - 06/16/17 02:03 AM UC and AS  
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Seasons Offline
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Hello! I am a 32 year old woman, who was diagnosed 2 years ago with both UC,AS and...., but have been symptomatic for 15 years. I am a nurse and it has been difficult to become the patient. I was very hesitant to try a medication for my AS, because I figured I would rather deal with pain, rather than potential side effects. I think I am so used to feeling this way, it has become my norm. I finally convinced myself to try a biologic and started with Humira and did not do well. Tried Cimzia next and it almost killed me due to an allergic reaction. Now I am afraid to try Remicade. I eat really clean and pretty much neo-paleo. Any suggestions/encouragement would be greatly appreciated!Thank you!

#278245 - 06/16/17 03:14 AM Re: UC and AS [Re: Seasons]  
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HI, I am a 23 year old male who does heavy physical work in a lot of heat, I was given 6 weeks off after my diagnostics to get a treatment plan in order. if possible you should try to get flma and short term disability to get your treatment figured out, I have been given orders by my doctor to research Disease modifying drugs, I have also been prescribed Celebrex, Prednisone, zanaflex, and finally was given a Tramadol prescription to deal with pain, as all the other medication was not working but will reduce inflammation. My Rem wants me started on Methotrexate, even though it will highly unlikely will work I have to try it to get the next on the list because no insurance covers it unless you try methotrexate first, I been hearing good things about methotrexate,it does not relieve a lot of pain but will slow the progression of the disease down, ask your doctor about taking muscle relaxers, and some good pain killers if standard nsaids don't work, I am happy with tramadol even though it does not relieve all my pain I am still greatful for It , as without it It feels like someone is ripping out my spine I have tried multiple NSAIDS to complete failure and those are worse then any biologic or Disease modifying drug side effect will be. Hang in their, I am new to this disease I must of had it for years of symptoms but just diagnosed last month. Just to ask how did you manage your pain so far? I am also in need of some better pain management, the non drug way as well as taking drugs


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
#278251 - 06/16/17 01:55 PM Re: UC and AS [Re: Thesnakejakw]  
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Hi, Thesnakejakw. Thanks for taking the time to respond. I can't imagine doing the job you do and dealing with this. My pain is up and down. I can go months feeling pretty good, and then months feeling terrible. It helps me to know that I will eventually feel better. I am unable to take NSAIDS due to my ulcerative colitis. For my pain relief I occasionally take a muscle relaxant or Tylenol#3, but for the most part I don't take anything. It is very frustrating, I even changed the type of nursing I was doing in the last year because I couldn't tolerate the twisting, turning and pulling I was doing. Now I sit more for work which is not good either. I am interested in Celebrex, as it is a type 2 NSAID so it won't be as bad for my colitis. I see my rheum again next week, finally after 6 months! Hopefully the methotrexate will work for you, but I have heard so many people that do great with Humira. Maybe it will work for you?

#278253 - 06/16/17 05:05 PM Re: UC and AS [Re: Seasons]  
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As a patient I was diagnosed with 3 auto immune diseases diabetes type one, celiacs disease, and now as I also have osteoporosis. I understand what you nurses have to go through I was in ICU for weeks at different hospitals and your profession is hard with all you have to go through it could almost be as physical as my job and as stressful, the plan for my medicine is methotrexate knowing it might not work I have to try it before trying leflunomide which I heard works wonders. The celeBREX don't help much a pain reliever is much needed with it for my case they gave me a 200mg dose and it would not ease my night spasms even with taking 28mg of Zanaflex a day I requested some pain medicine and they gave me tramadol to take which helps when combined with everything else, wish I could get something stronger but doctors in my state are pill nazis lol, what muscle relaxer works for you ?


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
#278256 - 06/16/17 07:11 PM Re: UC and AS [Re: Seasons]  
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Welcome, Seasons. I'm sorry you've had such a hard time with medications.

I would encourage you to give Remicade a try. Since it is an infusion, you will have fellow nurses at hand to watch you and be available if you have a bad reaction.

Diet and exercise/movement are important components of a treatment plan, but biologic meds are really the only treatment that will help slow the progression of the disease.

I do a lot of sitting at my job too, and it's important to do some periodic movement and stretching when that is the case. I get up and walk around the office at least once an hour, and I do stretches at my desk.

I also do water aerobics 3 times a week in a heated pool. It really helps keep my joints moving.

Keep us posted on what you decide to do.


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
#278263 - 06/17/17 03:06 AM Re: UC and AS [Re: Seasons]  
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Thanks Ginny,

I keep reminding myself that a biologic will help slow the progression, but when I have good days I am in denial that I have anything more than normal aches and pains. My husband tries to remind me that normal 32 year olds "shouldn't have aches and pains on good days."

I just started swim lessons, so I can get more comfortable in the water. So far, when I get out of the pool I feel really good. I am hoping to become a better swimmer, so I can actually swim for exercise. That is great that you do the water aerobics!

I am hopeful that I will do better with Remicade and that I can pre-treat with Benadryl. When I did Cimzia I had to go to the ER and have Epi along with many other drugs. My reaction occurred almost 12 hours after my injection. I really thought I was going to die the day before Christmas Eve.

Thanks for your support! I am happy that I reached out to this group.

#278264 - 06/17/17 03:11 AM Re: UC and AS [Re: Thesnakejakw]  
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I think I took cyclobenzaprine, but can't remember for sure. I used it about three years ago when I had one of my big flares. At that time I didn't have a proper diagnosis and was seeing a chiropractor for a herniated disc and "SI instability." If only I had known at that time that they were mistreating me.

I had a co-worker suggest Nucynta. I am not familiar with this drug, in-fact have never even had a patient on it. My co-worker swears by it for her back problems. Maybe it is something you could look into?

#278266 - 06/17/17 05:42 AM Re: UC and AS [Re: Thesnakejakw]  
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Originally Posted By: Thesnakejakw
HI, I am a 23 year old male who does heavy physical work in a lot of heat, I was given 6 weeks off after my diagnostics to get a treatment plan in order. if possible you should try to get flma and short term disability to get your treatment figured out, I have been given orders by my doctor to research Disease modifying drugs, I have also been prescribed Celebrex, Prednisone, zanaflex, and finally was given a Tramadol prescription to deal with pain, as all the other medication was not working but will reduce inflammation. My Rem wants me started on Methotrexate, even though it will highly unlikely will work I have to try it to get the next on the list because no insurance covers it unless you try methotrexate first, I been hearing good things about methotrexate,it does not relieve a lot of pain but will slow the progression of the disease down, ask your doctor about taking muscle relaxers, and some good pain killers if standard nsaids don't work, I am happy with tramadol even though it does not relieve all my pain I am still greatful for It , as without it It feels like someone is ripping out my spine I have tried multiple NSAIDS to complete failure and those are worse then any biologic or Disease modifying drug side effect will be. Hang in their, I am new to this disease I must of had it for years of symptoms but just diagnosed last month. Just to ask how did you manage your pain so far? I am also in need of some better pain management, the non drug way as well as taking drugs

Your insurance may have a policy requiring a methotrexate trial, but it is not accurate to say that "no insurance" will cover the next line medications. My daughter has been on anti-TNF therapy for a decade and has never been prescribed MTX. I did not take MTX until severa years into anti-TNF treatment. There are many posters here with similar experience.

I don't believe that there are any studies that show that MTX slows progression of AS. If there were, it would be more widely prescribed. To date there have been few studies of MTX use in AS because the preliminary studies have not shown particularly positive results.


Not Me Too!
#278267 - 06/17/17 06:45 AM Re: UC and AS [Re: NotMeToo]  
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Thesnakejakw Offline
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It's another disease modifying drug that's new I was told it's called leflunomide and mostly every insurance don't cover the drug until you try one of the dmards I ain't a canadate for hydroxyclo or sulfasalazine aparentally leflunomide is fda approved and will probably work the best for me


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

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