Flare up lows!

Posted , 7 users are following.

Had Ankylosing Spondylitis since 1996 and spondylethesis my whole life. I'm on Enbrel injections once a week 50mgs Celebrex 400mgs and cymbalta 60mgs.

The weather is raining and I'm having a flare up of both. My pain is so tiring and I'm so frustrated. I feel like everyone especially my family is tired of hearing about my AS and pain. Just feel very lonely with this disease process.

Does anyone feel the same out there?

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  • Posted

    Been on remecade for 12 years, switrched over "temporarly" to humera and was much worse off.

    Remecade seems to do the trick for me, I am getting infusions 1x 6 weeks.

    If I were U I would switch over to something else, your body has built an immunity tothe drug and it is not effective anymore. I did not think much of humera 1x2 weeks. The only thing likable was the self infusions verses going to an infusion center. I weighed it out and my health is more important, I can give up 3 hours every 6 weeks for a good quality of lifeeek


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  • Posted

    I think we all have times when we fall apart and feel like no one understands

    but try find a happy place or forums just to have a gripe we need that to.keep your çhin up

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  • Posted

    Hi Courtney..so sad to hear that you have struggled with AS for 20 yrs and your treating reumatoligist has not suggested a more aggressive treatment such as Remicade infusions. Both Embrel and Humara peak for alot of people...I was reluctant at first but decided to give acupuncture a go and after 4 months I am amazed at the decrease in pain and much milder flares...I have also been receiving Remicade infusions every 4 weeks for 19 months. I still experience flares but milder and for a shorter duration of time. I can relate feeling that loved ones are tired of your pain...trust me actually they feel helpless in being able to help you. I found that when I say this is kind of a rough day or thanks for understanding I have health challenges Ithe reactions compassion and support started flowing...best wishes to you Maybe it is time to consider transfering your medical care for a second opinion You deserve to feel better...
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  • Posted

    Hi courtney: 

    I hope you are feeling better.  I also have AS which was detected by my neurologists.  The problem is a long time ago, I was being treated by a rheumetologist back when I lived in CA,  At that time my sed rate was very high like 104 and she wanted to put me on biologics.  Insurance  was a pain in the ass and would only pay a certain amount which to me I had to pay $1000 a month.  I couldn't afford it.  Then she puts an order in for remicade and at the start I would have to have 1 each day for 3 days.  When I found out the price of that, I nearly flipped out.  So I didn't  go for it.  Over a period of time living in Vegas, I saw 2 neurologist and one said I had CIPD and wanted to put me on IV gamma gobulin.  Due to extream cost, I couldn't do it and the doctor just gave up on me.  Now living in Seattle, I have continual chronic pain, tired all the time and depressed with no ambition to do the things I want.  The last doctor I saw said that I need to be referred to a rhemetologist and thinks that Methotextrate inj. would be a good start as it is lower cost than the others.  He said that I might go embrel or some of the others instead.  Why did I have to wait this long as my nerves are being further damaged which is causing these problems?  Why can't the insurance companies think about the patient instead of their own pockets?  Yes, I feel depressed such as you are experiencing and yes it is hard to complain even to my wife who has her own medical problems.  But when I have very bad cramping which is extreme, how can you not yell out, moan and groan and even curse?  Yes, it upsets my wife and certainly don't do this among family and friends.  I just say, I have cramps in my legs and thats it.  So, you are not among the few that have this.  Many people here share the same problems.  We talk about, conjole one another and try to keep a positive outlook which is hard.  It's very hard forme as well.  That is why we are here, to help one another.  We can joke around sometimes and maybe have a laugh of 2.  You should evaluate what is going on with you and check it out with other doctors.  So, meanwhile,  please take care of yourself and feel better and less depressed.  You mention all the medications you are on but are you taking anti-depressants as well as Cymbalta?  Take care and wish you well


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  • Edited

    Hi! Brand new to this group! I just started having the most HORRENDOUS flares...7 to 8 days of THE WORST pain...Id rather be induced again and have a BAD reaction to the Pitocin then go through another flare anytime soon! My situation is different than most of you cuz I cant take/get ANY biologic, which includes basically every drug yall have mentioned, mostly in shot form, as I have Gorlins Syndrome as well. A main component of Gorlins is basal cell carcinomas, as well as other tumors...any biologic would RAMP up my tumor building cells, which obviously isnt good...I WISH I could!!! Cuz I want to DIE during the flares, the pain is so bad...I just cry for a week from the pain and fatigue...ANY help would be SOOOOO appreciated!!! And YAY! Vaccines push me into a flare faster than you can say "DAMNIT". So 2 flares coming right up! If I dont get a flu shot lol

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