ANTIBIOTIC PROTOCOL!!!!!

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3kidsmom
Regular Member


Date Joined Feb 2006
Total Posts : 50
   Posted 7/16/2006 5:42 PM (GMT -7)   
I think there's hope.  It's antibiotic therapy.  Anyone read, "the new arthritis breakthrough" by Henry Sammell?  My head is spinning.  I have been seen by a dr. franco in Riverside california.  I got the recommendation from the roadback foundation.  they have a website and an active chat room on the subject of AP.  I can't believe it... wait, yes I can!  It's not making a pharmeceutical company rich!  I'm so mad ad on the one hand and s :-) hankful on the other.

Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 7/16/2006 5:57 PM (GMT -7)   
Hey 3kidsmom... there are a lot of people here that have had or are comtemplating antibiotic therapy.. Erin has been on antibiotic therapy before... As a matter of fact, there are a couple other members here that have seen Dr. Franco too... good luck to you, I hope it works.
Confirmed Diagnosis of - Psoriatic Arthritis/Spondylitis/Graves Disease/GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes/Chronic UTIs
Current Meds -  Enbrel/Prevacid/Synthroid/Nitrofurantoin
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots
Additional Supplements - Multi-Vitamin/Bromelian/Acidophilus/Green Tea

3kidsmom
Regular Member


Date Joined Feb 2006
Total Posts : 50
   Posted 7/16/2006 10:36 PM (GMT -7)   
Thanks! I found the support over at the roadback site very useful in deciding to go for AP. They are all so happy with the results. If you are not near Ca where dr Franco is, the AP folks over at roadback know all the docs around the country using the therapy. They're so helpful and know what it's like to face off with skeptical regular rheumys.

hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 7/17/2006 4:44 PM (GMT -7)   
My 8 yr old son was recently diagnosed with JRA and I have been reading a lot of info. I have seen some stuff out there about antibiotic therapy and would like to know more about it. I'd love to hear from people who have tried it or are currently using it.
Diagnosis:  Suspected Lupus 2004; Raynauds 2006; Sjogren's 2006; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Tramadol 100mg 3-4x daily; Amitriptyline 10mg; Neurontin 300mg; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

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elcamino
Veteran Member


Date Joined Sep 2005
Total Posts : 1744
   Posted 7/18/2006 6:56 AM (GMT -7)   

I asked my rheumy about AP.  This is what he told me, not my opinion--AP has been around for a very very long time (decades), and research has attempted to prove its efficacy since its inception.  For the people who respond to AP, it is usually because they have latent Lyme's disease or something in that class of diseases--in other words, something that would readily respond to antibiotics.  The research that has been done has been majorly flawed and never corroborated.  Evidently, there is a doctor in the DC area (where I reside) who "specializes" in AP.  It is my rheumy's opinion that this guy is not just a quack, but a swindler.  He tells everyone that comes to see him that they have RA (in fact, many do not). He prescribes them antiobiotics and follows them for a year.  If they get better, he proclaims them cured.  If they don't, he simply refers them on to someone else.  My rheumy got a referral from him, a young lady who had tendonitis in one wrist.  This AP guy told her she had RA and put her on AP for a year.  She got better after a year, but what he didn't tell her is that tendonitis resolves itself in one year, with no tx. 

That being said, my rheumy told me that he likes to keep an open mind and if I wanted to try AP, he would prescribe them.  I chose not to.  I'm not trying to be "down" on AP, but I'm a researcher and a firm believer in numbers to support these claims that AP is the cure.  I'm very distrustful of anything that claims to be a cure for diseases that are not even truly understood to begin with.  On the other hand, AP is probably less toxic to the body than many of the DMARDs we take.  If you can find a doctor to prescribe them, perhaps it can't hurt to try.

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


3kidsmom
Regular Member


Date Joined Feb 2006
Total Posts : 50
   Posted 7/22/2006 2:22 PM (GMT -7)   
I am so sorry to hear you were turned off of ap with the help of your doctor. Please, read the book, The New Arthritis Breakthrough available at amazon.com. Also, before you take only ONE doctor's opinion on AP, visit the Road back website and ask about AP on their chat room. You really should not take the opinion of one doctor who claims not to want to turn you off of AP, but then piles every ounce of doubt he can muster onto the therapy. It's not some voodoo medicine. If you really are a researcher, you know that you cannot make an informed decision with ONE resource. Get that book, or check it out at a library. AND go to the roadback website. The mayo clinic is now recognizing AP as a legitimate therapy. There is no money to be made by prescribing minocycline. Think about it.

erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 7/22/2006 4:20 PM (GMT -7)   

Sure it is indeed a legitimate treatment and sure it does work in many MANY scenarios.

But here's another thing, long term antibiotic chemotherapy can cause severe arthritis in varying areas of the body; tearing of ligaments; potentially lethal super infection; and inflammatory bowel disease as colitis, ulcers and ulcerative colitis.

What are we really looking at?  Several treatments that "can" cause a "possible" remission of RA and MCTD's.  DMARDs, TNFs and biologics do not even promise this nor does any medication in that matter.

I believe it's just another step in the latter that is a very crucial step indeed!  It is there just as any other, and it is there as another option.

**this is by the way...a very good conversation/debate** :-)

the best to you both! rock on!

 


Active, Severe Rheumatory Arthritis. Crohns. AS. Chiari Malformation & Right Brain venous anomoly. Partial complex seizures. Emphysema. Rheumatic Lung & Heart. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg Q 4 days; Pred 20mg prn; Pentasa 4G daily; Imuran 50mg; Dilaudid 4mg; Diazepam 5mg; Avinza 60mg; Reglan; Meclizine; LidoDerm; MiraLax & too many others.


CaMama
Veteran Member


Date Joined Mar 2005
Total Posts : 1884
   Posted 8/3/2006 10:04 PM (GMT -7)   
I spoke to my rhuemy about antiobiotic therapy yesterday. I've only seen him twice, but I like him so far. He is young, but informative and likes to explain things to me from his perspective. Very nice. He said in his expereince (again, he's young) he hasn't had patients who got much luck with it - but, that doesn't mean it doesn't work. He is more than willing to try it with me should I choose to give it a shot. (no pun intentended in reference to that Enbrel that's been sitting in my fridge for 6 months.... tongue  )
 
So, I will continue researching it and will decide if I should try it. thanks so much for brining this up as an option. How are you doing so far? Have you started treatment?
***
 


elcamino
Veteran Member


Date Joined Sep 2005
Total Posts : 1744
   Posted 8/4/2006 4:07 AM (GMT -7)   

I have not based my conclusions regarding AP on one doctor's opinion.  I have thoroughly researched it myself; I have read some primary sources (professional journal articles).  There are very few studies that support the claims of AP and RA.  I have encountered numerous claims regarding AP on the internet (the roadback stuff), but those are simply testimonials.  There is very little based on real numbers from clinical trials.  Until that's available, I'm not willing to be the guinea pig. 

CaMama, my rheumy basically said the same thing your's did--he has prescribed AP for patients in the past who really wanted to try it.  It hasn't worked for any of them.   He wasn't completely down on AP--he specifically said that he was certainly open to the idea.  It has just been his experience that it doesn't work for most people.

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


CaMama
Veteran Member


Date Joined Mar 2005
Total Posts : 1884
   Posted 8/4/2006 12:32 PM (GMT -7)   

Yeah, I saw that your doc had a similar response as mine.  I did read on one site that it seemed antibiotic therapy worked best for 'mild' arthritis and they categorized it with Plaquenil (which I'm on and am getting good results with.)  I figure - do the research, if I feel ready to try something in addition to Plaquenil, I think I (based on how my research goes) would like to try that before goign on another TNF inhibitor......we'll see.....

**


 


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 8/5/2006 7:42 AM (GMT -7)   
hey mama,
whatcha' going to do with all the Enbrel? if you decide not to go on it....will they take it back?

you really like this Plaquenil eh? it's made improvements in your pain/joints etc...? yeah, i'm fishing for input!
i believe antibiotics work the best on RA and related arthritis' that were triggered by bacterial infections. that's my theory. for example: the Lymes bacteria triggered the AI disease....so when i was treated w/ antibiotics for RA after the Lymes was gone, i did well on them. big difference in pain levels. the only thing i wish antibiotics did was help slow down the progression of the disease like the TNFs.
but i feel AP really helps with arthritis symptoms. (so perhaps that's why some fail with AP...if the arthritis wasn't bacterial sequala, the probability of antibiotics working would be small to none). it's really all a fascinating theory.
best wishes Camama!
Active/Severe Rheumatory Arthritis. Crohns. AS. Chiari Malformation & Right Brain venous anomoly. Partial complex seizures. Emphysema. Rheumatic Lung & Heart. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg Q 4 days; Prednisone 20mg; Pentasa 4G daily; Imuran 50mg; Dilaudid 4mg; Diazepam 5mg; Avinza 60mg; Reglan; Antivert 25mg tid; LidoDerm; MiraLax & too many others.


mikey20
New Member


Date Joined Aug 2006
Total Posts : 5
   Posted 8/5/2006 6:45 PM (GMT -7)   
Wow! this site is very interesting . I just found it today . It took me 15 years to find out that I have AS . There has been many days that I would wonder if anyone else is suffering like I am, and was. Its funny in a way ,but it sure helps me to know that there are other out there with similar problems and many of you have so many good suggestions. After about 4 hours of reading on this site today , I can really feel for many of you, and I can see that I might not have it so bad after all .

Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 8/6/2006 8:05 AM (GMT -7)   
Hey Mikey... welcome to the site, I'm glad you found us.... We have quite the diverse group here, I'm sure you'll find a little bit of everything...if you have any questions, or just need to vent, please feel free! Duck
Confirmed Diagnosis of - Psoriatic Arthritis/Spondylitis/Graves Disease/GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes/Chronic UTIs
Current Meds -  Enbrel/Prevacid/Synthroid/Nitrofurantoin
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots
Additional Supplements - Multi-Vitamin/Bromelian/Acidophilus/Green Tea

CaMama
Veteran Member


Date Joined Mar 2005
Total Posts : 1884
   Posted 8/6/2006 8:33 AM (GMT -7)   

Welcome Mikey! Yes, this site is great and can really be a lifesaver when it comes to peace of mind, not feeling so alone, a place to ask questions, and a place to just vent with a lot of understanding ears!

Erin, yes, I'm having good results from Plaquenil. I wish they gave it to me years ago. None of the NSAiD's ever did a thing for me. Methotrexate made me feel so rotten, I honestly don't know if it did - plus, I took it with azulphidine, which was great for my colitis so who knows what did what......SO, other than Remicade, Plaquenil is the only other med I can actuall FEEL a major difference. Is it as awesome as Remicade? No, I do still have some issues. But, on the plus, my tiny little veins don't have to be tortured every 7 weeks, and considering I finally started having allergic reactions with severe flares, constant infections, low WBC, toxic liver, swollen eyes, an so on.....

I will warn you (as I did before) it irritates your bowels in the beginning for a week or two. With your Chron's, I don't know what that might mean.

I wonder if my rubella theory is true and if that means AP therapy would work for me.

****


 


elcamino
Veteran Member


Date Joined Sep 2005
Total Posts : 1744
   Posted 8/6/2006 10:44 AM (GMT -7)   
Erin, are you planning on starting plaquenil? I must have missed that post. CaMama is right--plaquenil can really irritate your lower GI system. It caused some very wicked cramping when I first started taking it. I learned to take it later in the day after a full meal. And by now (4 months), my body is probably used to it. In the beginning, though, I almost stopped taking it due to the cramping and D.

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


CaMama
Veteran Member


Date Joined Mar 2005
Total Posts : 1884
   Posted 8/6/2006 12:27 PM (GMT -7)   
Wow, it bothered you for that long El? I had horrible cramping and D for about 2 weeks.  THough, lately I've been having some trouble again - either possibly due to not taking it regularly the last month (cramping starts up again when I don't take it) or (G-d forbid) the colitis is slowly coming back.... let's hope not!!!!
**
 


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 8/6/2006 1:37 PM (GMT -7)   

hey El, hey camama:

well, i don't know what's going to happen.  i see the GI doc on wednesday.  getting the promtheus test...and i guess discuss what's next or what to add in conjunction to everything.

i won't start anything until the test comes back, that i know.

so hopefully i'm just not @ a therapeutic level of Imuran & it'll be as simple as putting me up to 100mg Imuran/day.  i'de hate to start on something new all over again.  but i do need an antiinflammatory of some sort...anything. i need something beside prednisone, i mean how much of it can i possibly take?!!??!!

i know the Crohns will be an issue, and the bleeding will be an issue (happened on the cox2s and most nsaids)

well, we shall see!

he's a smart guy...i'm not worried.


Active/Severe Rheumatory Arthritis. Crohns. AS. Chiari Malformation & Right Brain venous anomoly. Partial complex seizures. Emphysema. Rheumatic Lung & Heart. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg Q 4 days; Prednisone 20mg; Pentasa 4G daily; Imuran 50mg; Dilaudid 4mg; Diazepam 5mg; Avinza 60mg; Reglan; Antivert 25mg tid; LidoDerm; MiraLax & too many others.


mikey20
New Member


Date Joined Aug 2006
Total Posts : 5
   Posted 8/6/2006 2:23 PM (GMT -7)   
G'day to you , Duck and Ca Mama. I have been cautious as far and the meds I take and have taken . I take naproxen maybe 1 every 10days . I have been doing that for over 15 years and so far the tummy is still good . Only in the past 6 months have I been broken down enough to use vicodin. I did try metheltrexate for 2 weeks and I through it in the garbage,lol.... I was so tired I was sleeping 7 hours a day and 10 hours at nite ....... whats the sence of living if you are going to be sleeping all the time . I am wondering about trying emberal , does any one have any thoughts on that . I think before I try that I wouldn't mind taking antibiotics to see if that may help . I have been tested many time s for HLA B27 and am negative which was the main reason it took 15 years to find out what was wrong . I have 5 out of 6 docters that are sure its AS . I guess in many ways it really doesn't matter what you call it as long as you can find something that can help you have a somewhat normal life .

cheers , Mike

Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 8/6/2006 4:34 PM (GMT -7)   
Hey Mike...

I was very apprehensive when my rheumy suggested I start Enbrel. I was of course leery of all the side effects and with biologics still being relatively new, I was worried of the long term effects... However, I knew I wasn't getting any better being on all the meds that I was on at the time to try and help with the pain. My rheumy never suggested for me to start on Antibiotic Therapy... I didn't find out about that til I read it on this site...

From my personal experience, Enbrel has been a godsend to me. Within a short period of time, I noticed remarkable improvements in my mobility and stamina. Things that I always took for granted before, I could do again. I don't walk without a limp anymore... I go mountain biking with my husband now... I swim with my kids now.. and before I couldn't do any of that 'cause of my arthritis... And not to mention my psoriasis plaques have all but disappeared... I still get a stray plaque every now and then, but for the most part, they are gone. I don't have them on my back or torso like I used, I just have a couple around my hairline, and I think that is from stress more than anything.

Everyone is different. I know some people that the Enbrel didn't really work well for them... or it does for a short period of time...

What has your doc said? Did he/she recommend anything other than the Enbrel.? Does Antibiotic Protocol work for AS?

Hang in there, and let us know how you are doing... best wishes to you... Duck
Confirmed Diagnosis of - Psoriatic Arthritis/Spondylitis/Graves Disease/GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes/Chronic UTIs
Current Meds -  Enbrel/Prevacid/Synthroid/Nitrofurantoin
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots
Additional Supplements - Multi-Vitamin/Bromelian/Acidophilus/Green Tea

mikey20
New Member


Date Joined Aug 2006
Total Posts : 5
   Posted 8/6/2006 5:05 PM (GMT -7)   
Hey Duck . I am glad to hear that you have found some relief from enbrel. My rhumy wanted me to start with metheltrexate first because of insurance reasons and it killed me , so I have not tryed it yet . Its been about a month since the last injuection of meth. and I am still majorly fatiqued. I have not been back to see her again . I was just looking to see what eles is out there . I am currently doing accupuncture and that has been working really welll for me . The only thing is the fatique that is driving me up the wall . From what I have read , there has been a better respone with embrel with AS patients then even RA. , so that is a positive thing for sure . I am not sure if antibiotics would help me . I have only been sick once in 15 years and it was about 2 years ago and I now remember back to that and I was visiting a good friend in vegas when I took the antibiotics . I was there 3 weeks and I was pain free for the whole time . Thinking back to that , I have been wondering if I could benifit from a treatment like that .

thanks alot for your input,
Mike

elcamino
Veteran Member


Date Joined Sep 2005
Total Posts : 1744
   Posted 8/7/2006 4:26 AM (GMT -7)   

Hi Mike, you mention that you have more problems with fatigue than anything else right now?  I can tell you that once I started Enbrel (5 months ago), the fatigue almost completely disappeared.  The effects were quite noticeable after about the 3rd weekly injection.  I didn't even realize how fatigued I was until the Enbrel kicked in.  Prior to that, all I wanted to do on my time off was sleep! 

Although enbrel has done great for the fatigue it has not taken care of my joints yet, but combining it with mtx may do the trick. 

Best of luck to you, and welcome to healingwell.
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
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 8/7/2006 6:01 AM (GMT -7)   
Mikey!  WELCOME to HEALINGWELL.  Very glad to have you & happy you found us!
I won't be redundant because everyone has given you superb guidance already.  And no...we are NOT all women here...we've got our guys.  Aldo, Craig and HeyHubby and a few stragglers. tongue lol.
 
OK.  I was taking Enbrel 50mg per week for 1.5 years and the 2 things it ACTUALLY helped with was:
the AS!  drastic improvement in the amount of time I could stand, sit....less back spasms and less back pain.
and FATIGUE!  the fatigue related to the RA improved 3 fold. I agree, the Enbrel helped more with the AS than it did with the RA.
 
I had to eventually go off of the Enbrel. But I will leave this post with all POSITIVE experiences being left behind.
No problems related to the injections.  The 25mg syringes sting less than the 50mg single doses.  You might be able to pick & choose which you want.  The 25mg though you need 2 shots, but it's a picnic.
Never got sick or caught anything (and I sick patients in the hospital I was tending to at the time as well, TB...pneumonia, all the good stuff, LOL...but with real good handwashing I never caught anything).
 
So goof luck with your endeavors!  I really would give Enbrel a "shot".
Take care Mikey.
Sincerely,
erin  


Active/Severe Rheumatory Arthritis. Crohns. AS. Chiari Malformation & Right Brain venous anomoly. Partial complex seizures. Emphysema. Rheumatic Lung & Heart. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg Q 4 days; Prednisone 20mg; Pentasa 4G daily; Imuran 50mg; Dilaudid 4mg; Diazepam 5mg; Avinza 60mg; Reglan; Antivert 25mg tid; LidoDerm; MiraLax & too many others.

Post Edited (erin kachmar) : 8/7/2006 7:05:19 AM (GMT-6)


karasmommy
Veteran Member


Date Joined Mar 2005
Total Posts : 589
   Posted 8/7/2006 8:33 AM (GMT -7)   
Erin,
 
Hi, You said you have Crohn's along with RA, I have Crohn's and Lupus.  I take Immuran and Plaquenil, my GI is fine with that combo.  The first couple of weeks with the Plaq. was rough on the gut (was also on Pred so it helped to keep it calm somewhat)  I have learned to take it with a full meal and break it into 2 doses - 1 pill after breakfast and 1 after dinner - it is the only way I can take it and not upset my gut.
 
I usually post at the Crohn's or Lupus but was checking out the arthritus site for some older posts.  Found it interesting that you have Crohn's and RA, I don't find many people that have both!
 
 
Ellen
Diagnosed with Lupus - April 2002
Diagnosed with Crohn's Disease - January 2003
Diagnosed with Reynauds - March 2005
Fibromyalgia 2005 
Meds:  Plaquenil, Colazal, Flexeril, Immuran, Cal/Mag and Vitamin D Supplement, Probiotics and Multi Vitamin


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 8/7/2006 9:00 AM (GMT -7)   
Ellen thank you so much! See, I'm kinda freaked out because they gave me the choice of starting MTX...but said I'de have to go off of the Imuran. And for a while I really thought Imuran was helping a lot. Not doing very well now, so I see my docs this week. I really need to add or increase something. That's why I was inquiring about Plaquenil along w/ Imuran. I really do not want to stop the Imuran. Having the Promethius Test for Imuran this week. But I wanted to have at least some ideas to discus w/ my GI & rheummy such as Plaquenil.
Thanks again Ellen.
Sincerely,
erin
Active/Severe Rheumatory Arthritis. Crohns. AS. Chiari Malformation & Right Brain venous anomoly. Partial complex seizures. Emphysema. Rheumatic Lung & Heart. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg Q 4 days; Prednisone 20mg; Pentasa 4G daily; Imuran 50mg; Dilaudid 4mg; Diazepam 5mg; Avinza 60mg; Reglan; Antivert 25mg tid; LidoDerm; MiraLax & too many others.


karasmommy
Veteran Member


Date Joined Mar 2005
Total Posts : 589
   Posted 8/7/2006 5:18 PM (GMT -7)   

Yep, I did the Promethius test, it took me almost 3 months of the Immuran to feel like it kicked in.  It also took a bit of "finessing" to figure out the dosage that worked for me, I started at 150 mg of Immuran, it was too much, went down to 100 mg and got off Pred and was taking 400mg of Plaquenil, seemed to keep both diseases under control until I started feeling crappy with the Crohn's, flared and ended up in the hospital for a week, pumped with steroids and Entocort - LOVED that med, it worked along with finally figuring out the correct dosage of Immuran - 125 mg.

What dosage are you at with Immuran?  How long have you been on it? I know for some people it takes up to 6 months to feel better - that is what my GI told me.

With having Lupus and Crohns, I also don't have that many options of what I can take - Immuran, Entocort, and MTX are my options.  Have not done the MTX yet, since Immuran seems to be working well at this point - knock on wood, having a bit of a Lupus flare but coming out of that with an increased dose of Plaqunil.

I am also lucky that both my GI and Rheumy are very willing to work with each other and actually talk about what they each feel works for me with each other.  It is rare I am sure.

Good luck with your GI appt, keep me posted, I hope that they are willing to try some more options.


Ellen
Diagnosed with Lupus - April 2002
Diagnosed with Crohn's Disease - January 2003
Diagnosed with Reynauds - March 2005
Fibromyalgia 2005 
Meds:  Plaquenil, Colazal, Flexeril, Immuran, Cal/Mag and Vitamin D Supplement, Probiotics and Multi Vitamin

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