The Nsaids finally got the best of me.

I have been on  ever increasing doses for over 15 yrs and have topped off with Double doses of Naproxene 400mg 2/day...2 nights ago I woke up with horrible stomach pain, nausea etc...thought that it was a blockage but it was too high up.

I have cut out the nsaids ever since...it still hurts/burns a bit but am taking the omaprazole to help (was supposed to take it before the nsaids but never did).

Now the problem is what do I use for pain (other than a block of wood between my teeth)...tried the tramadol with tylenol.

Not sure how that is going to effect my blockages...this is becoming a maze of problems...one fix is another complication.

I'm seeing my ethiopath today so maybe if he can help with the pain I will try to stay off of the pain meds too for a few days.

Sharon

 

Original Post

i've been off of nsaids for decades due to them causing upper gi ulcers.  have you tried celebrex, which is a cox-2 inhibitor that is suppose to eliminate the ulcers and stomach pains. 

that said, my experience wasn't so good.  this last summer i thought i'd again try.   within five days i had terrible stomach pains and my then J pouch started bleeding.  later on i realized celebrex is a sulfa based drug, which is another reason not to be on them as sulfa based triggers pancreatitis for me.  

i take 3 g. tylenol daily and although i have pain, i find that both exercising at least an hour a day and meditation helps me to ignore it better than when i skip those two events.  

good luck, janet

Thanks Janet, 

I am allergic to sulfa and anything containing sulfa...not a good idea for me.

I am taking the tramado with tyelnol for now. Saw my ethiopath who managed to get the right side partially back in (1st rib by neck still out and very painful).

He is getting to know my body well enough to become more and more effective but my body doesn't hold the adjustments and goes out rather quickly.

He did some organ & deep tissue massage. Worked for 1/2hr on me and said that the duodenum was tight and it was very painful...the hot spots that he worked on feel so much better today...it is amazing! (that could be the tramado too)...I slept through the night for the first time in weeks so that is a plus.

I think that you are right...Back to tylenol (isn't it bad for the liver?).

More yoga too...because I still cannot walk.

Onward and upward...

Sharon

The maximum daily dose is 3000mg (used to be 4000mg). So, you need to take a lot for it to be damaging. The main danger is when you take multiple products that contain it and OD unwittingly. 

I have been doing well with tramadol and acetominophen. Getting hydrocodone in the US as a routine medication was just getting too much of a hassle. My rheumatologist suspects that tramadol will eventually be under the same restrictions.

Jan

Thanks Jan,

I have been on the tramadol for 2 days now and that  + the Ethiopath are helping + heating pads and hot baths.

Will the achilles tendon etc react adversly to my stopping NSAIDs?

Is there any side effect to going cold turkey?

Sharon

Possibly your Achilles tendonitis will act up, but you've burned that bridge (NSAIDs). Years of NSAIDs and resulting intolerance led me to the option of biologics. That was 10 years ago. 

As far as cold turkey side effects, no. All I noticed was loss of water retention and normal blood pressure.

Jan

Jan,

This is stupid question time for me since biologics scare the ...off out me..

I take public transportation daily. We have a huge immigrant/refugee population at the moment that has brought back tuberculosis and many other contagous diseases that were thought to be irradicated from French soil...How at risk will I be?

One of hubby's friends contracted tuberculosis 2yrs ago from taking public transport and it took him months to fight it off...and he was not immuno-compromised.

Will I be able to travel to certain countries? (not that I can travel anywhere at the moment!)

Thanks

Sharon

I travel, but not to third world countries. There is a big world of travel out there where you don't have to put yourself at risk. I can tell you that I would not be traveling if I could not walk.

I wash my hands a lot. Carry hand sanitizer when I am in a big city or abroad. They test you for TB before starting biologics (so you don't reactivate any latent disease that you did not know you had), and they restest every few years. I have monitoring blood tests every 3 months. I have had one scary systemic infection in 10 years, and the cause was never found. I get a flu shot annually, have had the latest pneumonia and hepatitis B vaccines. So far, communicable diseases is the least of my worries.

My GI is considering Entyvio or Remicade infusions at this point.

Jan

Thanks for the heads up...I have no choice of where I work or travel...kind of goes with the job and I am lucky to still have one. 

I usually do the flu shots and can always get the Hep B vaccine...Any others that would be reccomended before heading towards biologics?

Honestly it is the subways that scare me the most at rush hour...tight, up close and personal contact, breathing face to face and holding onto slimy rails and bars that were touched by 5000 people before you got there (I try to hold using my sleeves).

I am coming down with the flu as we speak so I know that I am vulnerable (and forgot to take my shot) I just don't want to jump from the frypan into the fire.

But this pain is mind-blowing without the anti-inflamatories I am barely able to walk any more.

Appt with my Rhumy next month...I guess we know where this is headed.

Sharon

 

I never forget my flu shot now. It os on the calendar as soon as it is a ailable. Plus, everyone in the household gets one too (it is not 100% effective, so you should encourage anyone you spend time with to get one). If you have not done so yet, get the shingles vaccines. Once you are on biologics you cannot have live vaccines.

Jan

sharon

perhaps you have mentioned a problem with this or you have previously tried it, but might you get a cortisone shot for the tendonitis? 

google the side effects of tylenol for info on the kidney and/or liver problem.  given you don't drink alcohol you should have a higher tolerance.  industry standard used to be 4 g/day; not sure when they came down to 3g.  

food can also make a difference.  i don't eat refined sugar, so long as i can help it.    eating out can be a problem and i'll feel it if they use sugar.  i think the initiation sugars also increase inflammation.   

we need a new pain reliever!!!  sign me up  janet

I'm with you Janet...someone out there...please invent a new pain reliever that is not addictive nor has any nasty side effects (I have learned to be precise with my wishes or my fairy God-mother grants them to me 'funky'...I suspect that she drinks! )

I never thought about shingles...wonder if it is availible here...will find out...(any side effects from that one?)

The flu vaccine is sitting in my fridge...so is hubby's...we were lazy and forgot to do it a X-mas...too late?

Sharon

No, not too late for a flu vaccine, but you say you are coming down with the flu now. It won't help you if you already contracted the virus. Are you saying you have flu vaccine in your own fridge? In the US, they don't send home vaccines for self administration, so I am confused. If this is the FluMist (nasal mist), you definitely can't take it once you are a biologic. FluMist is a live vaccine. 

I would imagine that the shingles vaccine is available in Europe.

Jan

for specific pain areas, such as a shoulder or lumbar, you can try lidocaine patches or gel.  also nsaids come in similar topical applications, although there is some systemic absorption that you might wish to avoid.  neither seems to cut the pain enough for me to bother with the $$ or time.  

get the shingles vac.  it's a one time event.

No, Jan,

I have the vaccine shot at home in my fridge. The French system is way different than the U.S system...those who qualify get a letter from the social security system (our health care system) with a 'cupon' for the vaccine. You go to your generalist to sign the cupon, take the signed cupon to your pharmacist and he gives you the vaccine. You then take the vaccine back to your generalist for him to administer it to you. A lot of travel for very little result because you must pay your G.P. 2 visits to get 1 vaccine. The pharmacists are fighting for the right to administer them themselves. It is an expensive and wasteful system...The vaccine on its own costs under 6€...The doctor visit 28€

So every year I just buy mine and hubby's and give us the shots...except that I forgot to this year. You have to take them out 1/2hr beforehand and I just don't remember.

I have another blockage or the nsaids have killed my guts too...Feels like the flu, I ache all over and am running like water but no throwing up just gut upset...no fever...if it doesn't get worse then I will take the vaccine.

JLH,

I use the anti-inflamatory cream morning and night on the ankel and have the lombard patches. 

The Rhumy refuses to give me the cortison shots because he says that they destroy the joints and cartilage...he is right so I suffer in silence!

Sharon

The cortisone shots are fine for most large joints, but not good for the Achilles tendon (blood supply nearly absent, so it is dangerous). I've had them in my wrists, elbows, and knees with fair results. No damage. You just cannot repeat them often, so you need maintenance care. 

What a silly system for vaccines! We either line up in the hospital lobby during "flu clinic" time at my provider, or go to the "drive through" clinic in the parking lot. They must not really want people vaccinated in France, or it would be more streamlined. There's no way you need a doctor to administer it.

Just take them out of the fridge, have dinner, then inject. It does not have to be exactly 1/2 hour. The same is true for biologics. Sometimes I let it sit for hours before injecting. Unless your house is super hot, it is fine.

Jan

The French system is rather corrupt...you get all of your meds in boxes...the boxes can be for 12 or 13 or 36  pills...there is no logic to the quantity...when the script calls for 2xs/day for 7 days...that means you either get 2 boxes of 12 or 1 of 36 but you can never get exactly 14...so every one has these boxes of 3 pills of 42 or some absurd number that is way too much or not enough etc...the prices are somewhat subsidised so they are really cheap for somethings and very expensive for others and now that some that are no longer reimbursed by the health care system are just plain taken off of the market like the historically used Diantalvic for pain or Myolastaine which was the go-to muscle relaxant for things like sciatica...now you either get over the top narcotics or tylenol...

Sharon

fascinating about the flu vac and little pills in little boxes.  american drug system is so driven by the big pharma that if one hasn't invested in it then they can't afford the meds.  that topic gets me ranting and raving.....

hadn't thought about the achilles tendon being a smaller area, and yes i can understand that a cortisone shot isn't appropriate.  pity as they can break the cycle of pain and often get one over the worst of it.  i'm at my wits end for suggestions, other than meditation and perhaps acupuncture.  both are very effective for me, but need to be done on a regular basis or the effect drops off.  staying active--be it yoga or exercise or biking--makes a big difference for me.  peace, janet

When things are very bad I go on a fast prednisone taper, lasting about two weeks total. Saved my bacon a number of times. I also still have my CAM walker (boot) for very bad Achilles tendon flares. My son calls me Frankenstein when I have to wear it. For lesser flares I use those elastic ankle supports. Anyway, whatever it takes to keep moving, as resting too much makes it worse.

Jan

I keep moving whether I like it or not...gave in and used the cane yesterday. It helped on flat ground but there are so many stairs in the subway + bags etc and I was moving like an arthritic turtle at rush hour.

It had the advantage of getting me a seat every time.

I am using the flexible strap with velcro with Nsaid cream underneath. Icing like crazy. 

Yes our health care system is expensive and broken and wasteful but it is better than none at all and it has saved me a fortune over the years. I also have 2 supplementary health plans.

When hubby came home from the hospital last year I went to fill his scripts. I came home with nearly 35 boxes of 2 kinds pain meds each. The table was piled high. (I asked him to fill 1/2 the script!)

He didn't take any in the end.

 

My last chance is that they pay for 'cures'...sort of like a spa (just not necessarily pretty or fancy) where you have 21 days of intensive treatments...Water therapy, heat, massage, physio etc...it is covered by our plan and most people come back 50-80% better for a while...They specialize from site to site on asthma, muscle, diseases, cancer recovery...this one does Ehler's Danlos and ligaments/breaks/accidents. But you need to stay for 21 days or it is not covered. Will have to see about June.

Sharon

 

Sharon, going to a health spa sounds like a great idea and it’s nice to know your health insurance will cover it. In 2009, my late wife’s brother who is a bass player in Poland’s national opera invited me to visit for an extended vacation. While there, we went to a health spa in eastern Poland (which was formerly a mansion converted by the communists to a health spa for mine workers) where they gave me a variety of treatments for my back condition. I was self-pay, but my brother-in-law had insurance coverage for a shoulder injury. We were there for only two weeks since he wanted to show me other parts of Poland before I returned home. The treatments were very helpful and the entire one month vacation restored my outlook on life after experiencing the worst four years of my life.

With all that you have been through, I wish you the best with your visit to the spa. Enjoy every minute of it!

Bill

Thanks  Bill, 

I have an appointment with one of the top specialists in Ehler's-Danlos syndrom who is going to take my life, medical file and conditions apart and try to make some sort of sense out of everything...I finally gave in, did a few hours worth of research and found him.

They were very kind...so 1 month to go and I might get some anwers.

I do not expect big things but maybe some sort of direction that I can go that will not drive me strait to hell...which is were I am now. I started using a cane this week. Even with it I walk like a 90yr old.

Less than a yr ago I was climbing dozens of stairs now I can barely make it up 10.

This is not fun. Hubby says that I should go asap but I have contracts that I cannot break...will have to wait until June.

Not sure if the blockages are part of it or a seperated issue but they are exhausting me..that too needs addressing.

Sharon

Saw my GP today who took a look at my bloodwork...I didn't ask too many questions but he said that my bloodmarkers for inflamation are very high, Spoke about AS and said that he believed that my rhumy should be putting me on Biologics.

I have to do an abdominal scanner for the blockages.

Transaminases ASAT (SGOT): 36

Transaminases Alat (SGPT): 47

Gamma-glytamyl Transferase: 75

CH50 (liposomie Immunoassay:  Reactif: Autokit Ch50: 55.8 (the reference was minimum 80)

EliA CCP: <5

Not sure what it all means but he wants me to see the Rhumy by next week.

Sharon

It looks like it is mostly the GGT that is elevated (hard to tell without the references), and that is modestly elevated. The SGOT/SGPT are mildly elevated, if at all. These all reference liver inflammation. Could be from your past use of NSAIDs.

The low CH50 refers to a presence of an acute inflammatory condition. But, it is non-specific. http://www.questdiagnostics.co...=618&labCode=SJC

The negative CCP rules out rheumatoid arthritis.

Good luck with the rheumy!

Jan

 

So I had the CT this morning...the radiologist called me in...she seemed a bit perplexed...not about the pouch but the rest of the congenital deformities...after she detailed all of them (kidneys, various other organs etc, bones and vascular) she informed me that I should sue someone for giving me this body!

I couldn't help but laugh...she said that she would happily testify!

Someone, please tell me...Who can I sue? 

I can't think of anyone.

Sharon

you might want to check the warrantee that came with birth?  mine expired long time ago.  

when do you get ct results?  sb immediate, yes?  janet

I think you have to go back to your maker (God, or whatever diety you believe in). Can't be parents because they are stuck with what they were given by ancestors, or perhaps your maladies are random mutations.

You have a manufacturer or construction defect claim. Of course, where would you serve the papers, and under which jurisdiction? So, I guess you are screwed and stuck with the hand (body) you were dealt. Better than the alternative (never been born).   

Lucky for you, you were given the gifts of resilience and humor! 

Jan

Last edited by Jan Dollar

Yes, laughter helps...I checked the little label that they sewed to my butt at birth...seems that I blew the warentee years ago!

Will get the results by mail...then off to the 'rare diseases' clinic to see what they have to say...(probably give me the name of a good lawyer!)

By the way, I tried to yell at God...he just laughed!

Sharon

So I recieved the CT results in the mail...do not understand half of it...I will translate them (please do not laugh!)

Malformation and mispossitionning(?) of the right kidney (stuck to the liver) and the common abdominal and mesentary vessels...

Scarring (adhesions? ) from ileostomie in the right ileac fossa, partially calcified pouch (? What does that mean?)

Dialted (swollen/enlarged?) of the small bowel loops in the left iliac fossa touching the pouch and a flat joint (anastamosis site)...very dialted bowel ,no occlusion.

Varicos veins of the ovaries, highly enlarged, particularly on the left. (???)

Multi-level degeneration of the thorasic-lombard spine predominant in the thorasic-lombard joint

Degeneration of the sacro-iliac joint

Bilateral Coxarthrose predominantly posteriorly and interiorly

That's it folk...time to send me to the junk yard...and get a newer model

Sharon

ps...green burning output since the i.v. injection of the contrast liquid...normal?

Last edited by skn69

Yep, you are officially a mess! You'll need that interpreted by a doctor who is familiar with your altered anatomy, as "landmarks" may have changed (not the bony ones of course).

Long term inflammation causes calcification. I have calcified ligaments and tendons from my inflammatory arthritis. This can also occur in the soft tissues.

I never had any altered output after CT with contrast exams, and I have had many, many.

Jan

 

Anything that anyone can do with/about the calcified bits?

I am still fighting the achilles tendonitis (they spoke about calcification then) and massage the heck out of it and ice (good news is that the flare is calming down...using heels now to relieve some of the tension)

What are varicose veins from the ovaries? Does one have to do something about them? Or does one buy support hose for them? Maybe with a tinnie-tiny built in panty?

Sharon

 Sorry Sharon but I have no clues to what is going on in your precious body. I applaud your fortitude and as always your humor.    Thanks for keeping us informed. Wish I had some magic formula to resolve at least one problem.  Good luck shopping for your ovaries pantyhose. Janet

 Don't recall if you have already explained this, but have you had special orthotics made for your shoes?  Some people swear that they can resolve many problems. I can't yet speak from experience, because in the midst of having them made another doctor decided I had a significant difference in the length of my legs. The other doctor examined me and thought the other leg was longer, so now I need to have a machine measure me. This hasn't happened yet.   Rather in recovery from the shoulder surgery,  which is going well and I'm managing the K pouch on my own. 

Sorry, but once tissue has calcified, it is permanent. I can no longer wear flat shoes due to Achilles calcification. So definitely NO Birkenstocks or similar. Can't wear high heels either, just an inch or two. With all my casual shoes, I have to put heel lifts and use firm arch supports. And yet, I still get some heel pain.

Don't worry about the ovaries at this point. You aren't using them anyway. The distended veins are probably from your ovaries being wrapped in scar tissue decades ago, probably even before your ovaries matured.

Jan

Thank, the less I have to worry about the better

Yes, the achilles tendon thing is a real pain...since bunion surgery I was told to wear flats, for the heel I need heels...I am alternating icepacks, tylenol, massaging with an anti-inflamatory pomade and now wear 2.5inch heels...they have allowed me to stop using the cane (funny isn't it!)...still painful but far from what it was a month ago.

The yoga/pilates seem to be helping too.

Sharon

a little update on another subject...

Went to see the cousin who had the mesentary infarction...he explained that it started with what felt like alergies (rashes or placques of red, rough skin) all over his abdomen, then started feeling weak and sweating, taccicardia and finally a near collapse (he was standing next to 2 doctors who sent him directly to ER)...all of this over a period of weeks.

He was 60% blocage when he got in (blood clot) and they tried anticoagulants for a few weeks. (nasty NG tube for the duration and NPO!)When he hit 80% they operated and did a bypasss...took a vein from somewhere else, made a secondary route around the clot (they could neither break it nor remove it) and done...long open surgery but he is fine now...spent 6 weeks in hospital with the associated complications...I had never heard of it before and thrilled that he is home and well now.

Sheesh...life can be scary

Last edited by skn69

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