Running out of medication options

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Ides
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Date Joined Nov 2003
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   Posted 1/7/2008 5:39 PM (GMT -7)   
I have spondyloarthropathy with extensive entheopathy [tendon inflammation]. Besides the arthritis type symptoms of that disease, I have extensive osteoarthritis. The OA has most effected my hands, shoulders, hips and back. My back has extensive degenerative disc disease.
 
So I did very well on Remicade for 2.5 years. Then I reacted and had to stop it. Then I tried Humira. I never felt the same relief I did with Remicade and then had the mother of all serum sickness reactions to it. Because of that, the doctors say even Enbrel is out.
 
My rheumatologist is adament that I be on something to treat the inflammation and prevent further calcification of my tendons. To that end, even though I have Crohn's disease, I tried Celebrex. That lasted 8 days. I gained 4 pounds and all of that weight was fluid in my legs. The edema caused my neuropathy symptoms to escalate and I felt the urge to saw my legs off. So then they had me try an OTC NSAID. I tried Aleve. Two days and the edema is back in the legs along with the intractable neuropathy pain.
 
The GI's office suggested that the rheumy find me a clinical trial I might qualify for because the options are gone....
 
Guess this is more of a vent than a question. The only thing left is MTX and I am not going there. Perhaps if I think about my predicament, I might be able to change my own mind.... sad

Ducky
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Date Joined Mar 2005
Total Posts : 3199
   Posted 1/7/2008 6:09 PM (GMT -7)   
Hey Ides.. why are you reluctant to try MTX? And this may be a stupid question, but can you take plaquenil? Not sure if that would help at all though.. Hhmm.. ok.. off to see what other meds you might be able to take.. hang in there..
Moderator of Arthritis Forum
Confirmed Diagnosis of - Psoriatic Arthritis/Spondylitis/Graves Disease/GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes/Chronic UTIs/Migraines/Hypertension
Current Meds -  Enbrel/Prilosec/Synthroid/Nitrofurantoin/Midrin/HYZAAR
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots


Ides
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Date Joined Nov 2003
Total Posts : 7077
   Posted 1/7/2008 6:28 PM (GMT -7)   
Hi Ducky - I'm up there in years, set in my life style, and am not too thrilled about having to change at this point. I feel it is very foolish to take MTX and drink alcohol. I am of the era where I enjoy a cocktail before dinner and a glass of wine with dinner when dining out. Many of social circle events involve getting together for shared meals and a glass of wine. While it would seem to make sense to most to chose a medication that might stop the destruction over having a drink...I'm not there yet. Perhaps if I have to write my SHALLOW reasoning down enough, I'll realize just how shallow they are....LOL

The other is the periodic liver biopsy testing that goes with the taking of MTX....I am the picture postcard gal of "if something can go wrong, it'll happen to her."
Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, small fiber peripheral neuropathy, avascular necrosis, diffuse connective tissue disease, Sjogren's Syndrome ?
 


Ducky
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Date Joined Mar 2005
Total Posts : 3199
   Posted 1/7/2008 7:01 PM (GMT -7)   
Hey Ides.. so you ARE Murphy's Law? And here I thought I was the only one! :) No, it's not shallow, it's your way of life.. and choosing these meds can be like changing your lifestyle, and like you said, you're just not there yet.. no one can fault you for that.. I am of the same era.. I don't drink often, but I feel, I'm an adult and if I want to have a glass of wine, by golly I'm going to have one! :) So I understand where you are coming from.. There just has to be something else out there.. hhmm..

Oh, the plaquenil, you never said, can you take that? Or is that along the same lines as the MTX? I'm not familiar with either as I've never been on them (is why I ask)..
Moderator of Arthritis Forum
Confirmed Diagnosis of - Psoriatic Arthritis/Spondylitis/Graves Disease/GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes/Chronic UTIs/Migraines/Hypertension
Current Meds -  Enbrel/Prilosec/Synthroid/Nitrofurantoin/Midrin/HYZAAR
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots


sjkly
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Date Joined Dec 2007
Total Posts : 2113
   Posted 1/7/2008 8:12 PM (GMT -7)   
I thought about plaquenil as soon as I read your original post as well. I am on it and the side effects for me are minimal and the relief is tremendous.

elcamino
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Date Joined Sep 2005
Total Posts : 1744
   Posted 1/8/2008 6:32 AM (GMT -7)   
Dearest Ides,
 
I'm sorry to hear that you're just about out of options.  I was also reluctant to go on methotrexate, but for different reasons than you.  I was worried about future children, although I've since decided that my family is complete, and I was also worried about interstitial lung disease, which mtx can contribute to.  Once I made the decision, however, and went on mtx, I realized that it was a good decision.  I will probably remain on mtx for a number of years (my mother took it for over 10 years and my father was on it for 15 years).  It's a pretty safe drug.  I'm not a drinker, but I would think that it is still ok to have a drink while on mtx once in a while.  I probably wouldn't drink everyday on it, but I would think a few drinks per week would be acceptable.  I guess this would still entail a major life changing decision for you, though.
 
As far as a liver biopsy is concerned, I was not aware that this is a standard requirement for mtx users.  My mother never had one; my father never had one; and my rheumy has not even mentioned it.  I thought you only had to have one if you start showing symptoms of liver problems?
 
Of course your concerns are valid.  I'm sure that you will come to the right decision for you.  I don't think it could hurt to check out the clinical trials in your area.  What about some of the other biologics, like orencia, and something else that came out around the same time?
 
Best regards,
Elcamino
Current dx: Rheumatoid Arthritis
Suspected dx: UCTD/Early Lupus
Current Meds: Enbrel, Plaquenil, Aciphex, Ultracet, Zyrtec, Allavert-D, Zantac, Tylenol PM
Past Meds: Relafen, Vioxx, Mobic, Voltaren, Sulfasalazine, Entocort, Prednisone, Humira, Reglan


erin.K
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Date Joined Mar 2005
Total Posts : 3148
   Posted 1/8/2008 1:20 PM (GMT -7)   
oh Ides...
you've been such a blessing to me over the years w/ help & pain med info & everything...i wish i had more to add!
can they do a spinal on you? like a nerve block?
i am in your boat! every nsaid whether RX or OTC causes massive peripheral edema for me especially in the lower legs.
steroids are the only anti inflammatory i can tolerate (if ya can call it tolerable).
are you taking any narcotics to control the pain?
(((((((((hugs)))))))))))
erin
Arthritis Forum Moderator & Co-Pilot
Active Severe Rheumatory Arthritis. AS. Crohns Disease. A.Chiari Malformation. MVP & Tricuspid Valve Prolapse. Kidney Stones (oh joy). 
Meds: Remicade 600mg Q3weeks; Intra-articular knee injections; 6MP; Mesalamine; Prednisone; Entocort; Meclizine; Azithromycin; Tigan; Reglan; LidoDerm; Diazepam; Diclofenac; Dilaudid; OxyContin. 


starrnr
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Date Joined Dec 2005
Total Posts : 1782
   Posted 1/8/2008 10:03 PM (GMT -7)   
Ides, I can only imagine how frustrated you must feel.

Now, as far as MTX is concerned, this is what my rheumy tells me (and I trust this man implicitly). A couple of drinks during the week is fine. You take your MTX and folic acid like normal, no big deal. If you're planning on whooping it up (say during the holidays as an example), then you don't take the MTX that week. Plain and simple really - my common sense guides me and I'm guessing your common sense is better than mine! Of course, if it's normal for you to indulge more frequently that a few drinks during the week, well, then I would guess that would place a bigger burden on your liver.

As for the biopsy, I've been on it almost 3 years now and no biopsy here. Generally, those are done when your liver enzymes skyrocket and don't come back down after you stop the MTX. You get monthly blood tests to check your enzymes and your rheumy will monitor them.

Keep in mind, it took me 6 months to get up the nerve to do the MTX. We added it when the Enbrel lost some of its effectiveness after I had a dental infection. I continue to take it even though I'm off the Remicade now (my miracle drug) and I'll continue it once I finally get started on the Humira. It has made a world of difference in my RA, and has helped my AS.

Should you decide to do the MTX, I suggest with your CD, you do the injections. The pills really jacked my stomach up -- I can only imagine what it may do to yours.

As a final thought - there is a "last ditch" (as my rheumy calls it) med available, but if the MTX "curls your eyelashes" then this one will "curl your toes."

I wish there was a easier answer - it's hard being guinea pigs. I hope you feel better soon - no matter what road you end up on.

~S.
Some days you're the bug, some days you're the windshield

RA, AS, intolerance/sensitivity to gluten, wheat and dairy.

Starting Humira 12/07, currently .7ml (17.5 mgs) injectible Methotrexate weekly, 2 mgs Folic Acid daily


lavendar
Regular Member


Date Joined Nov 2007
Total Posts : 450
   Posted 1/12/2008 2:04 AM (GMT -7)   
Only a liver biopsy will tell for sure if your liver is in danger. Liver Functions Test may show normal resuls but are not really normal, believe me I know. As far as symptoms , some people never have any symptoms till it's to late. june

babybloo
Regular Member


Date Joined Aug 2005
Total Posts : 289
   Posted 1/12/2008 6:41 PM (GMT -7)   
Does it mean anything to have swelling in your hands and legs while on NSAIDS?  I have had this issue with everyone I have tried and no one seemed to care too much about it.  Do they give you something for this?  I am already on diuretics for blood pressure?

dx: Rheumatoid Arthritis.  Duration: 10yrs. Dx'ed 2006.  Asthma, hypertension, hypothyroid
 
Meds: Methotrexate 25mg wkly, Arava 20mg, Rituxan infusion, Folic Acid, Fish Oils, Advil, Advair 250/50, Diovan HCT 160mg/25mg QD, Women's One a Day, tylenol PRN.
 
 


Ducky
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Date Joined Mar 2005
Total Posts : 3199
   Posted 1/20/2008 7:20 PM (GMT -7)   
Hey Ides.. just checking in with you seeing how you are doing..
Moderator of Arthritis Forum
Confirmed Diagnosis of - Psoriatic Arthritis/Spondylitis/Graves Disease/GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes/Chronic UTIs/Migraines/Hypertension
Current Meds -  Enbrel/Prilosec/Synthroid/Nitrofurantoin/Midrin/HYZAAR
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots


Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7077
   Posted 1/21/2008 10:55 PM (GMT -7)   
I see the rheumy next week. I am sure he is going to throw his hands up in disgust and worry over what to give me. Meanwhile, I see the the ankle guy Thursday...so hoping to be told I can "86" the boot cast. It is really starting to get on my nerves. Then I will have to start PT to rehab the broken ankle...frankly sick of going to medical type appts.

Thanks for asking...
Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, small fiber peripheral neuropathy, avascular necrosis, diffuse connective tissue disease, Sjogren's Syndrome ?
 


sjkly
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Date Joined Dec 2007
Total Posts : 2113
   Posted 1/22/2008 2:22 PM (GMT -7)   
babybloo,
I had the same thing happen when on celebrex-best med I ever took for my knees but after two weeks I had so much adema in my hands I couldn't hold a pen or pump my own gas. My Rhuemy didn't seem to think it was a big deal but took me off of it when I insisted that I could do my job in a wheel chair if I had to but I needed my hands.

Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 1/22/2008 5:04 PM (GMT -7)   
How long are you going to have to do PT Ides? Have they said yet? Guess you'll probably find out on Thursday, huh? :) I hear ya about the medical appts.. is neverending.. let us know what they say.. good luck to you!
Moderator of Arthritis Forum
Confirmed Diagnosis of - Psoriatic Arthritis/Spondylitis/Graves Disease/GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes/Chronic UTIs/Migraines/Hypertension
Current Meds -  Enbrel/Prilosec/Synthroid/Nitrofurantoin/Midrin/HYZAAR
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots


Frayda
Regular Member


Date Joined Aug 2003
Total Posts : 248
   Posted 1/24/2008 6:33 AM (GMT -7)   
Starrnr, what is the"last ditch" med you referred to? I had to stop mtx two years ago due to lung complications and I've been off nsaids because of vascular problems. I am also running out of options for my RA. I've been on plaquenil for over 20 years. (it is important to get regular eye exams because plaquenil can cause retina damage).
Embrel and the like are out of the question because of the lung issues. I am now on choline magnesium trisalate which is not supposed to interfere with platelets like other nsaids, but it is not as effective either. FK

Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7077
   Posted 1/24/2008 5:51 PM (GMT -7)   
Two more weeks in the dang boot!!!! Urgh!!!!!! The part of the fibula that broke off is not reattaching. The doc could easily push it around. Had more xrays. PT on hold for at least another 2 weeks. He started talking CT of ankle and surgery to remove the piece of bone. At that point I went deaf.....LOL
Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, small fiber peripheral neuropathy, avascular necrosis, diffuse connective tissue disease, Sjogren's Syndrome ?
 


Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 1/24/2008 8:22 PM (GMT -7)   
Oh geez Ides! :( yeah.. when docs start talking and it's seems as though it's just more doom and gloom, my ears slam shut too.. poo.. sorry about the boot.. But hey, the bright side, is no PT (yet).. :)
Moderator of Arthritis Forum
Confirmed Diagnosis of - Psoriatic Arthritis/Spondylitis/Graves Disease/GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes/Chronic UTIs/Migraines/Hypertension
Current Meds -  Enbrel/Prilosec/Synthroid/Nitrofurantoin/Midrin/HYZAAR
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots


starrnr
Veteran Member


Date Joined Dec 2005
Total Posts : 1782
   Posted 1/24/2008 9:55 PM (GMT -7)   
LoL Ides, yep, going deaf at that point is something I'd do as well. Dang, you can't catch a break, can you?

Frayda, Rituxan is what my rheumy (and I) consider absolutely last ditch. It's not an easy treatment, the side effects just curled my toes and the extensive pre-meds are just not worth it, for me.

It's just too much of a risk (and it scares the bejeesus out of me), IMHO. Here's the website (sorry I can't make a workable link):

http://www.rituxan.com/

I have to say though, there are people here on HW that are on it and doing well. You might want to solicit information from them.

Hope this helps some - good luck, you'd think with all the med's available out there now, we wouldn't run out of options.

~S.
Some days you're the bug, some days you're the windshield

RA, AS, intolerance/sensitivity to gluten, wheat and dairy.

Started Humira 1/17/08, also currently taking .7ml (17.5 mgs) injectible Methotrexate weekly, 2 mgs Folic Acid daily

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