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please help.. im hopeless
#240886 09/22/12 03:10 PM
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Hey all, its been a few weeks since I have posted. Mainly due to the fact that I have been in a flare for 6 weeks now. My inflammation it not being controlled at all. I have been on enbrel for 7 weeks now, sulfasalazine for 12. I have non stop swelling in my entire body. Hands, legs, knees especially, face... u get the picture. I see my rhumey on Wednesday, is there anything else left for me to try? I just finished 4 week predinsone taper, even that didn't help the inflammation. My knees get so bad that I cant straighten my legs. I'm so frustrated, depressed, ready to be done with this. Any suggestions are welcome and needed. Thanks so much!


Jamie, 29, mother of a wild 3 year old, wife of super supportive college student husband, dx with fibro, IA, spondoloarthropalthy, depression, anxiety. HLA-B27 positive. First sign of IA spondo in 1999, first fibro attack/flare up in 2010. taking sulfasalzine, enbrel, neurontin, hydrocodone, buspirone, celexa, zanaflex, xanax. Wanting my body back!
Re: please help.. im hopeless
sharpthings #240887 09/22/12 03:29 PM
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I am so sorry to hear that! I know it's not much help, but people who have failed on one biologic do sometimes have success with another. And there are other medications in testing, so even if what's out there now does not help, please NEVER give up hope! It can be a matter of trial and error, and sometimes flares resolve on their own.

Have you tried injections into your knees?


46, diagnosed with AS in early 2005 and on TNF-blockers since then: They have been miracle drugs for me. On Enbrel from spring 2005 to Nov 2008. On Humira from Nov 2008 to present. Baclofen and OTC anti-inflammatories as needed.

"You must be the change you wish to see in the world." --Gandhi
Re: please help.. im hopeless
sharpthings #240888 09/22/12 03:40 PM
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No, haven't tried any injections other than the sterile shots in my hip that my GP used to give me. Not IN the hip I guess, they were just a regular injection for general relief. Do you know about how long my rhumey will keep me on enbrel before trying a different biologic? I am so mew to all this and very scared. I just need some relief, in fact I have decided that the pain I have was easier to deal with than the swelling. Just last summer I was running 3 miles a day 4 days a week! I am appalled at how quickly this disease has taken over my life. I feel like I am greiving the death of my previous life. Is this normal? Thanks so much for the reply!!


Jamie, 29, mother of a wild 3 year old, wife of super supportive college student husband, dx with fibro, IA, spondoloarthropalthy, depression, anxiety. HLA-B27 positive. First sign of IA spondo in 1999, first fibro attack/flare up in 2010. taking sulfasalzine, enbrel, neurontin, hydrocodone, buspirone, celexa, zanaflex, xanax. Wanting my body back!
Re: please help.. im hopeless
sharpthings #240889 09/22/12 03:49 PM
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YES, it is normal and healthy to grieve the loss of your previous life, or the life you thought you would have. You need to give yourself time to do this to move towards acceptance of your NEW life, which can be just as wonderful, but different. A few weeks or even months of feeling sad, frustrated, etc is normal, but if you start having drastic thoughts, can't enjoy the small things, or start to "check out" completely, do discuss it with your doctor. Depression is a normal response to chronic illness and is nothing to be ashamed of, any more than the disease itself is anything to be ashamed of. When I was in my grieving process, I had a session with a work-place psychologist I had at the time. She felt my response was appropriate and that I did not need outside help, but gave me some things to watch for that would signal it was time for a little assistance in getting over the hump.

I think 3 months on one biologic is pretty routine before trying another one.

I have a relative who had cortisone injections (or whatever it is) in his knees and they did help a fair amount. It's certainly worth discussing with your doctor.

Good luck!


46, diagnosed with AS in early 2005 and on TNF-blockers since then: They have been miracle drugs for me. On Enbrel from spring 2005 to Nov 2008. On Humira from Nov 2008 to present. Baclofen and OTC anti-inflammatories as needed.

"You must be the change you wish to see in the world." --Gandhi
Re: please help.. im hopeless
sharpthings #240891 09/22/12 04:28 PM
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I'm so sorry you are in such a bad flare! I remember when I was on Humira it did not work well for me, and that happened to me too. When I was switched to Remicade I did notice a difference and I have been on it 7 years. I also take methtrexate, low prednisone, voltaren, tramadol. The remicade does not take away all my pain, but with these other meds I can function pretty well. I think it is getting a handful of treatments, when combined, work for you. It can take a while for you and rheumy to figure it out....it is very trial and error, seeing what works. Hoping the Enbrel shows some results soon, but don't hesitate to ask rheumy what other meds might work while you are waiting. Good luck! Kera4

Re: please help.. im hopeless
sharpthings #240892 09/22/12 04:38 PM
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Hi, Jamie:

Before I learned about diet and antibiotics, I used to fast to take down flares. Six weeks is WAY too long to be involved with a flare!

The maximum I fasted was 20 days, after which I was able to take up running in earnest and also became a real racquetball star.

But if keeping to a proper diet, fasting is not necessary. In fact the Cayce apples for 3 days is pretty good at taking down flares.

If enteric-coated, the sulfasalazine (Azulfidine-EN or Salazopyrin-EC) is pretty safe if tolerated, but other non-selective NSAIDs did more damage than good.

This is a difficult disease that can cause permanent damage; it is very important to get it under control early enough--You have better things to do with Your life.

HEALTH,
John



Nota Bene: I am not a medical doctor, and my views do not represent the opinions of the SAA
AS Resources
My Long, Boring AS Story
Professor Alan Ebringer Diet and AS

Re: please help.. im hopeless
sharpthings #240899 09/22/12 07:17 PM
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So when u say fasting, do u mes. Liquids only? I do still work but I am willing to try anything. Do u know why fasting worked for you?


Jamie, 29, mother of a wild 3 year old, wife of super supportive college student husband, dx with fibro, IA, spondoloarthropalthy, depression, anxiety. HLA-B27 positive. First sign of IA spondo in 1999, first fibro attack/flare up in 2010. taking sulfasalzine, enbrel, neurontin, hydrocodone, buspirone, celexa, zanaflex, xanax. Wanting my body back!
Re: please help.. im hopeless
sharpthings #240916 09/23/12 06:45 AM
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Did you have swelling in your face before you were put on the prednisone? I ask because prednisone can cause what's nicknamed "moonface", aka swelling of the cheeks and neck. Essentially, it causes a redistribution of fat deposits, with fat winding up in the face, abdomen, and the back of the neck.

Your doctor will likely want you to stay on Enbrel for at least 12 weeks to see if it works at all. It can take 6 months to see its full effectiveness, but usually begins working within 3 months. Humira started working for me at 8 weeks, but it mostly worked on my fatigue and morning stiffness at first. Eventually, Humira made a profound improvement in my symptoms. I actually had no back or SIJ pain for the majority of the time I was on Humira. It can be difficult to pinpoint exactly when a medication begins working. I've been on Simponi for 8 weeks now (Humira sadly stopped working for me in December), and I feel better than I did when I started it, but I'm really not sure if it's due to the med or a coincidence. Whatever causes it for either of us, I hope you get to feeling better too!

I very well know the frustration of waiting to find the right mix of medication, exercise, sleep, and every other little thing that comes together to make this disease livable. But know and believe that you will find that mix. It takes time, and I know it's painful in more ways than one in the meantime, but have hope. It gets better.


Mary, 25, happily married pro photographer, momma to 2 great danes.
Dx: Psoriatic Arthritis, Fibromyalgia, Psoriasis, Sjogren's, IBS, Hiatal Hernia, & possible Endometriosis.
Meds: Stelara, Methotrexate, Relafen, Omeprazole, Lyrica, Tizanidine, Voltaren Gel, Tramadol
Re: please help.. im hopeless
sharpthings #240924 09/23/12 01:16 PM
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I've been dealing with active disease for nearly 5 years now & I'm still mourning my old life & the loss of what was supposed to be. I don't think it ever truly goes away, just like the longing & mourning for a loved one who has passed. I'm sorry you're going through such a bad flare. I've been flaring since June or Remicade is failing me. I've only been on it since August of last year & it really kicked in about mid November. 7 months of relief may be all I got out of it. I got nearly 18 months total relief with Humira, but it was over 3 years, with a break in between to rule out medication induced MS symptoms. Everyone responds differently to meds. Every body is different. I hope you get relief soon. My little sister was put on Enbrel nearly a year ago & it really has only helped with fatigue & stiffness. Her dr is being stubborn about switching her, but then he only sees her about every 4 months. My dr sees me every 6 weeks at least.

The swelling in your face certainly could be from the steroids. 4 weeks is a long time to be on them. I just started my 1st time on Pred & it's just for 1 week, with no taper. Day 2 & I'm feeling a tad less pain. My family dr actually Rxed it for my herniated thoracic disc that's acting up & to help this flare, because I'm having mega nerve pain in my butt, groin, & down my legs, & my rt leg is very weak(rt SI joint is the culprit of the nerve pain). I'm waiting for SI joint steroid injections & an epidural steroid injection in my thoracic disc too.

Injections really offer me a lot of relief. I get them in my knees, elbows, shoulders, & when I get trigger finger. Hip injections into the actual joint via an orthopedic dr may be next. Lucky me. ;-) Be sure to ask your rheumy about steroid injections in your knees. Mine were nearly pain-free for almost a year after my last injection. I need them done again. Good luck.


-Jenn. SAHM with 4 kids. Diagnosed with AS('08) Psoriasis, probable Sjogrens(won't do lip biopsy), Fibromyalgia, Chiari Malformation, PCOS, endometriosis, diabetes(type 1), metabolic syndrome, mild hypothyroidism...
Remicade & MTX.

*I am in no way associated with the medical profession other than doing my best to keep them in business. Any advice I give is purely my own opinion and should not be substituted for qualified professional care.
Re: please help.. im hopeless
sharpthings #240929 09/23/12 02:42 PM
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I'm not sure what you mean by "swelling", but if its something significant that has changed recently, then you really do need to talk to your doctor about what is happening. Have you been having regular kidney and liver function tests while on sulfasalazine and are they normal? Could it be the prednisone? Is there something else going on?

That kind of widespread "swelling" (including your face) isn't what I would expect from an AS flare.



Cauda equina type neurogenic bladder problems. Coeliac disease. Sicca syndrome. Ataxic gait and use crutches. Non-specific gut problems. Current treatment: Low dose naltrexone, low starch diet (Guts shredded by NSAIDs. Previously diclofenac worked well, not eligible for anti-tnfs, hypersensitivity to SSZ). Also short bursts of pred for bad flares

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