Arthritis suggestions?

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ZenaWP
Veteran Member


Date Joined Aug 2007
Total Posts : 884
   Posted 7/9/2009 9:46 AM (GMT -7)   
I'm on here enough that I think I have a fairly good idea of the drugs that are out there, but I need some suggestions.  My Crohn's is in remission but the arthritis has been kicking my butt since January.  We've tried all of the normal arthritis drugs in the past - Celebrex, salsalate, pain meds, etc. and very few work and don't kill my stomach.  I've also tried Remicade, Cimzia and am now on Humira, which doesn't help the arthritis enough.  Also on Tramadol daily and Voltaren gel for certain joints. 
 
When the flare up started in January, the rheumy put me on prednisone (only 10 mg, I think) and then started Sulfasalzine.  4 months in, it was doing nothing and my liver enzymes became elevated, so I had to stop it.  We started methotrexate, first the pills, and then switched to injections 3 weeks ago because the pills were killing my stomach.  That is the best 3 weeks I've had in about a year.  I felt great (for me)!  I just got the call yesterday that my liver enzymes were elevated in my labs on Tuesday and I have to stop the methotrexate.  NO!!!!!!!!  I'm not ready to go back to a huge flare!
 
I was told before all of this that my options were Sulfasalazine, methotrexate or Tsyabri, which I am not ready to try at this point.  Now we've exhausted two of those options.  Does anyone else know of something my docs are forgetting about?  I'm still on the prednisone (at 5 mg now, but we'll see if I can get by with 5 once the methotrexate is out of my system), but I know you're not supposed to be on it for long.  Thanks so much for any suggestions! 
Crohn's Disease, Acid Reflux/Gastritis, Hashimoto's Thyroiditis, Endometriosis, Arthritis, Depression/Anxiety.  Too many meds to list them all.  =) 


Sunaddict
Regular Member


Date Joined Jun 2009
Total Posts : 354
   Posted 7/9/2009 2:22 PM (GMT -7)   
Hi!
I wish I could help you, but i can't.. I'm going through the exact same thing. The arthritis started kicking in, in Nov and since then it's gotten allot worse. I've been on remicade which they just stop, and switching me to humira, the doc said this would work especially with the arthritis. But it's not helping you, makes me worry. As I am still young and about to get married and want a  a family, the doc wont put me on MTX so she put me back on Imuran and going to start Humira sometime next week. I feel like there is no hope right now. I want my life back. Most important I want to walk down the aisle.. as it stand right now I can't =(
I hope you find something that works for you.Try to keep this tread going.. I would like to know if there is a light somewhere down here.
 
 
24 year old woman. Crohn's all my life but diagnosed at age 18.Been on prednisone 8 times. which they will not give me anymore(doesn't work for me)I am on Prevacide for the ulcers I get in the stomach,pantesa. I've been on and off imuran,entocort,number of others I can think of. I have cronh's in the small bowel,colon,stomach. Since Nov 08 I've been suffering from RA which is just as bad as CD. haven't been able to work for the last 2 years. Awaiting to start Humira since being on Remicade for 1 year 4 months that no longer works.Hoping to get my life back with Humira.thinking of taking MTX


lenagirl
Regular Member


Date Joined Aug 2007
Total Posts : 44
   Posted 7/9/2009 4:47 PM (GMT -7)   
Have you tried Imuran/azathioprine? It is sometimes used for RA.
21 years old, diagnosed with CD at age 18,
First major flare since diagnosis started in Nov. 08. Still recovering and mostly stable, but having trouble tapering Pred.

Current Meds:
Prednisone 12.5 mg, Azathioprine 75 mg (just started 5/03, but think it may be starting to kick in), Asacol, and Rowasa
Plus Vancomycin and Florastor for a recurring case of c diff.


Sunaddict
Regular Member


Date Joined Jun 2009
Total Posts : 354
   Posted 7/9/2009 6:43 PM (GMT -7)   

Hi lenagirl.

yes I was Imuran before remicade, they took me off of it while on remicade (now I got the RA from the antibodies from remicade) Now back on Imuran but only for the last 5 days. Not sure when I should see a difference.


24 year old woman. Crohn's all my life but diagnosed at age 18.Been on prednisone 8 times. which they will not give me anymore(doesn't work for me)I am on Prevacide for the ulcers I get in the stomach,pantesa. I've been on and off imuran,entocort,number of others I can think of. I have cronh's in the small bowel,colon,stomach. Since Nov 08 I've been suffering from RA which is just as bad as CD. haven't been able to work for the last 2 years. Awaiting to start Humira since being on Remicade for 1 year 4 months that no longer works.Hoping to get my life back with Humira.thinking of taking MTX


dinkydee
Regular Member


Date Joined May 2009
Total Posts : 201
   Posted 7/9/2009 7:35 PM (GMT -7)   
Years ago I was diagnosed with Rheumatoid Type Arthritis. At first they thought Lupus. I had terrible joint pain, esp. in the knees and alot of fatigue. My Rheumatologist put me on Plaquenil. I was on it for 3 years, it literally gave me my life back at the time. I went into remission and have been off of it for years. Maybe check into that one. It worked for me.
Diagnosed with CD 3 years ago.  Refused to take meds until recently started Colazal. 
 Currently on Prednisone 40mg.
 
I live by faith and not by sight....


ZenaWP
Veteran Member


Date Joined Aug 2007
Total Posts : 884
   Posted 7/10/2009 9:11 AM (GMT -7)   
Thanks.  I will look into/ask about the Plaquenil.  lenagirl, I was on 6mp for about a year, but it didn't help.  Haven't tried azathioprine, though. 

Crohn's Disease, Acid Reflux/Gastritis, Hashimoto's Thyroiditis, Endometriosis, Arthritis, Depression/Anxiety.  Too many meds to list them all.  =) 


Sunaddict
Regular Member


Date Joined Jun 2009
Total Posts : 354
   Posted 7/10/2009 10:27 AM (GMT -7)   
Thanks I'm and def going to look into  Plaquenil and ask my doc.
 
Imuran still isn't helping but it's only been 6 days. I will wait and see.
24 year old woman. Crohn's all my life but diagnosed at age 18.Been on prednisone 8 times. which they will not give me anymore(doesn't work for me)I am on Prevacide for the ulcers I get in the stomach,pantesa. I've been on and off imuran,entocort,number of others I can think of. I have cronh's in the small bowel,colon,stomach. Since Nov 08 I've been suffering from RA which is just as bad as CD. haven't been able to work for the last 2 years. Awaiting to start Humira since being on Remicade for 1 year 4 months that no longer works.Hoping to get my life back with Humira.thinking of taking MTX


jhicks
Regular Member


Date Joined May 2009
Total Posts : 177
   Posted 7/10/2009 8:18 PM (GMT -7)   
I have been dealing with arthritis pains in my ankles, left jaw, left knee and right pinky for more than 4 mos now. It is so frustrating. A colonoscopy in May showed two spots where Crohn's has become active again, though I have not had problems with my gut. At one point, I was on crutches for almost two weeks and was using a soft cast on my right ankle for nearly 2 months. I could not wear closed shoes! My GI wanted to put me on Remicade or Imuran. I was scared to death, but grateful the options existed. I wanted to find a way around the drugs though.

about two months ago, I started seeing an acupuncturist. I was very skeptical, and after three weeks was thinking I was just wasting my time. Still, I stuck it out. My acu slowly started suggesting various herbs to offer to my supplement regimen. She put me on the Chinese herb Isatis Cooling to calm the inflammation in my gut. Next, she had me switch from Osteo-Biflex (Glucosamine/chondroitin) to a vegetarian glucosamine (within 2 days of this switch, the pain in my knee was gone!!) and most recently added Thyroid support. I also take resveratrol, Align probiotic, vitamin E, fish oil with borage and primrose oil, vitamin D and Pentasa. Just this week, I started feeling PHENOMENAL. My ankles still swell marginally each day, but the pain is all but gone! I have stopped taking the prescription Mobic (NSAID) that I counted on to numb the pain each day. I am continuing with acupuncture weekly for a few more weeks. My acu also ordered a gut analysis for me. Those results should show contents of my intestinal flora/bacteria and parasitology from which the acu can more specifically target my needs. I am very quickly becoming a VERY STRONG believer in complementary/natural medicine.

I cannot tell you how well I've felt. It has been fantastic! I am walking with pep in my step again. My feet can still get fatigued at the end of a day if I'm on them a lot. But not like I did. I am not horrifically stiff when I get up in the morning or off the couch in the middle of the day. I can wear normal shoes. I can walk around the neighborhood. I am not able to run or walk rapidly on my treadmill - YET! But I see both normal-looking ankles and a treadmill jog in my future. I could not have said that three months ago. And, so far, I do not see Remicade or Imuran on the horizon (I am still glad they exist if I need them, though).

Best of luck!

jhicks
Regular Member


Date Joined May 2009
Total Posts : 177
   Posted 7/10/2009 8:19 PM (GMT -7)   
The mouth sores I had also have disappeared!

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 7/11/2009 7:26 AM (GMT -7)   
JHicks do you know the name of the vegetarian glucousamine you are taking. My Crohns is in remission, but my joints are really bad, and I am also trying to put off a possible Total Knee replacement and would be willing to try something to help there.

Hugs
Gail*Nanners*
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed for my anxiety.  Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Sunaddict
Regular Member


Date Joined Jun 2009
Total Posts : 354
   Posted 7/11/2009 10:17 AM (GMT -7)   

Hi!

I'm so happy you found relief, without having to take hard core meds with god knows what side effects. I've heard these can also help but you CD in remission. I'm at a point, I'll try anything. I'll for sure look into this, see if my health insurance covers this.

Thanks again. and I'm so happy for you. Right now my goal is to be able to walk down the aisl for my wedding in April .

hope everyone is having a pain free day!


24 year old woman. Crohn's all my life but diagnosed at age 18.Been on prednisone 8 times. which they will not give me anymore(doesn't work for me)I am on Prevacide for the ulcers I get in the stomach,pantesa. I've been on and off imuran,entocort,number of others I can think of. I have cronh's in the small bowel,colon,stomach. Since Nov 08 I've been suffering from RA which is just as bad as CD. haven't been able to work for the last 2 years. Awaiting to start Humira since being on Remicade for 1 year 4 months that no longer works.Hoping to get my life back with Humira.thinking of taking MTX


jhicks
Regular Member


Date Joined May 2009
Total Posts : 177
   Posted 7/11/2009 1:16 PM (GMT -7)   
Hi Nanners,

I take a product called VegeGlucosamine Plus Comprehensive Joint Formula with Vegetarian Glucosamine. Looks like it is by Karuna Responsible Nutrition. I got it from my acupuncturist. I had been taking a nonveg Glucosamine/Chondroitin product before, but was still experiencing pain. It's hard to pinpoint which product is responsible for what (is it the cumulative affects of acupuncture with all the other supplements or the addition of the vegetarian one), but I did notice the pain in my knee go completely away w/in 2 days of adding this product. I've been on it almost a month now, and my arthritic pain/stiffness in my ankles is just about gone all around. They do still swell marginally by evening. I also added resveratrol to my regimen about a week and a half ago and my energy has increased markedly as well (though I'm still no good after 9 p.m.). I went bowling yesterday, and the pain in my pinky did return. I think the weight of the ball on that finger was just too much. It's not bothering me today. My ankle pain is almost completely gone, but this has only been for a few days, so I am reluctant to declare victory over it yet. My jaw still hurts when I yawn, but it's not as bad as it was months ago.

Best of luck to everyone. If I could bottle how well I've felt this week and give it to all of you, I would, free of charge! I just hope it continues!!

heatmiser
Veteran Member


Date Joined May 2003
Total Posts : 1671
   Posted 7/12/2009 9:57 AM (GMT -7)   
I was put on darvocet for my arthritis pain. Usually I just take a maintenance med, with occasional pred for flare ups. Never have been to a rheumy. My new doc isn't too happy about the risks with darvocet but my old doc didn't seem too concerned. For now, we are sticking with it. When I asked what my options were she said morphine or methotrexate. This was just my IM doc, not GI.

flowery
Regular Member


Date Joined Jul 2008
Total Posts : 440
   Posted 7/12/2009 9:31 PM (GMT -7)   
Has anyone tried Bee-stings? I have CD and for the most part ...gone the conventional Dr. route...however, my Brother has MS and swears by the more natural route... Bee's, accupuncture, vitamin supplements.... I'm starting to really re-think over the counter drugs. So, many side effects. So many options that eventually are ruined. I guess looking back ...your in a life threatening flare and you go through the ropes of drugs your Dr. prescribes without even thinking....what are these doing? It's all very scary what drugs you trust your doctor to prescribe and then down the road... find it may have damaged you more. Worrying about....food, allergies, preservatives, bacteria, colds, flu's, rashes, liver enzymes, c-diff, yada yada..soooo overhelming.
My joint pain really bothers me most days. I haven't gotten diagnosed with a title of arthritus yet because...once I'm diagnosed..I'll have to take another drug. The pain is so bad somedays I just whine and cry. Kinda wasted days. I ended up taking a leave of absence from my job because of all together feeling swelled and yucky every day! Just trying to weigh out my choices.
GI doctor says to take Glucosamine. I remember reading somewhere one time that Glucosamine is (Glucose).. total sugar. What oil's are joints ...adrenalin...what makes adrenalin.....SUGAR!!!! taking Glucosamine is like putting sugar in your body that "oil"!! your joints ....well it will work!.. but your chances of getting diabetes down the road rises significantly
Anybody ever hear of this happening?
Flowery
 41 yr old woman with 12 surgerys under my belt. Diagnosed in 2005 CD. PTSD 1999. Gullbladder taken 2000, Hysterectomy 2005, Back surgery 1998 with herniation L-4, L-5, S-1. Two-Re-sections on small intestine, total of 18 inches taken out 2006. Stomach Herniation from re-section 2007, Been getting kidney stones too! The good news...finding this website.
                Meds: Imuran 200mg daily, asacol, Bentyl, Coelestid, occasional flagyl and cipro, high blood pressure meds, paxil 25 mg, 4/20meq's potassium, synthroid...& try to get alot of laughter in.
                         

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