http://www.sciencedaily.com/releases/2012/05/120502143846.htm

NSAIDs and Cardiovascular Risk Explained (May 2, 2012) -- After nearly 13 years of study and intense debate, a pair of new articles have confirmed exactly how a once-popular class of anti-inflammatory drugs leads to cardiovascular risk for people taking it. ... > full story



Joining the dots - should have occuredd to me years ago, or at least to my doctors *various!!

Going back to 1991 and the 'real' start of this flaming AS monster: my first flare. Unable to get out of bed, Huge difficulty in dressing. Desperate pain. NSAIDs. OTC Paracetamol - knew what I could tolerate and what worked for *me. Then the achilles tendon problem (R.ankle) with the heel bone spur - could hardly walk. Then the right knee - blew up. Collapsing on me (breaking forward) especially dangerous whilst crossing the road! All the time on Paracetamol (must have been eating them!) and don't remember taking other pain killers.

No. Did not see a specialist excepting for one utterly crappy rheumy who wanted to inject cortisone into my heel...

For years had had low blood pressure. Would feel dizzy on getting up from a chair or from bed in the morning. Years of low B.P. (And when I had operations, they *always had to tip me up from the feet due to low BP - alarmingly low they told me).

OK. Now move forward. Year 2002. Second flare. Neck. Completely spasmed. Could not left head - had to use hand to 'lift' and could not turn neck. Was in agony. Lasted six months with residual pain for over a year - walking or any jerking was intolerable. More NSAIDs - this time prescription NSAIDs. Ibuprofen. Meloxicam - Oh, and a whole range of em (and still have - as kept - the packets, with still some tablets left over, and of course all date marked!)

Then, second flare. Neck, again. Then R.knee, again. Then R.elbow. Then L.shoulder. On yet more NSAIDs. Followed by surgery on shoulder X2, and elbow. More NSAIDs...

Then gut shredded to pieces. Plus, NSAIDs just not hacking it.

THEN - Hypertension. Massive spikes of hypertension. Crazy.

Then. Change to COX-2 inhibitors. (Celebrex, then Vioxx, then back to Celebrex). Phew. Worked like a dream for me. Bliss.

Then...more gut probs. Finally discovered all the polyps - Ha. Familial Adenomatous Polyps, FAP. Thanks. (Nice googly - curve ball in Americanese <VBG>)

More hypertension. Then a minor heart attack Dec 2007 - showed up on pre-op assessment.

Then found out about LDN here on KA. Started the LDN - with pain meds for any breakthrough pain.

Roll forward to 2011. Rheumy consultation and diagnostics discovered a CVA - think I can relate this to spring 2011 (horrible feeling - right weird).

Now. Interesting twist to all this. Go back and read that paper. See the note on NOs? OK. Vascular dysregulation, retina. NTG - no tension - glaucoma. Bingo. NTG is now considered a vascular dysregulation. A 'different' condition to POAG Glaucoma - that is, POAG = raised intraoptic pressures, over 20 IOP. (Mine are 8 - 12mmHg and 12 - 14mmHg - NO tension).

NSAIDs. Flaming NSAIDs directly leading to Gut problems.
NSAIDs - directly leading to Hypertension & (mild) heart attack
NSAIDs - directly leading to that CVA
NSAIDs - due to causing vascular dysregulation, directly leading to NTG

Then the doctors here labeling me as 'Non-compliant' - with erstwhile GP insisting I go on Arcoxia - for a flare: ribs, costo, knee - (this in spite of side effects warnings? Sheesh). Including a 'top' rheumatologist here in France who blatantly snarled at me that I was 'Non-compliant and should take the advice of my doctors, take the NSAIDs, that they would control my pain'! He outright *refused to acknowledge that I had a problem with NSAIDs...and this in spite of his OWN authored papers!! (Can't invent them over here - and certainly can't invent 'him' - not in a month, nor yet a year, of Sundays!)

OK guys. Back to that paper again. I have NOs that I can take, AAKG: Alpha Arginine KetoGlutarate. Got to get back on it. Can't do owt about the vision I 'have' lost (R.eye is pretty bad now) but will try and save what is left of the sight in the R.eye and pray the L.eye continues to hold out for me. Also, to get this flaming hypertension under better control (too reactive to the anti-hypertensive drugs): yes, we're still working on it - now on drug #10!

Will be copying this through to my cardiologist - think he will be most interested. Meantime, will try and get back to England to see my decent rheumatologist. (Find out what the hell IS going on with neck, rib cage, SIs, feet - and this vascular neuropathy - or whatever the devil it IS!)

But you can see what these NSAIDs can do to a person over a time period. That is 22 years slowly developing after some 15 years of NSAIDs plus latter years with COX2 inhibitor use. WARNING.

Hope this new line in drug can be developed soon.

Hey Molly. Interesting stuff, though I've only read it briefly once.
If you're coming back this way to you "decent rheum" do give us a ring. Contact details are the same.
Btw - saw A. and his lovely wife in the LRI - nought serious, don't alarm (saw them walking down the corridor while I was having a cuppa. Thought you'd like to know they're both looking great.
Hugs to you. J xxx

Jeanna - how nice to hear from you. Hope that YOU are doing well. How is the Crohn's? And how is Loz? So good to see you posting, been a long while. 'Smile'. (No news, good news, I hope).

A. You saw him in the corridors of? Yea. Is. often asks after you. So you must still be on that H. assignment? Yes, A's wife is lovely - amazing person. We are so very lucky to have her as part of our family. Terrif they were looking great - A. gets to sit out in the sun - whenever the sun shines that is! And now has a super car to transport him mit chariot, so he can be driven around, get a change of scene. The two gals are keeping A. going. Thanks for update

Yes - Sooo long to see my 'whizzo' rheumy. Oh Sooooo miss her. (Must bring her upto speed.)

As and when over, will definitely give you a call - you bet gal.

Lovely to hear from you - take care - keep well -

Many (((HUGS))) xxx

P.S. It sure is a facinating paper - especially all the attendant stuff, like the NTG, that they (the researchers) won't even (probably) be aware of? Going to put it up on the glaucoma group.

Only 15 years of NSAIDs? I did 23, '74 'til '97, phenylbutazone and indomethacine. And survived them much better than you I guess. Not convinced they are to be avoided (the dragon) but the one who prescribed them did eventually persuade me to change my diet. My guess is they do more good than harm.

Quote Bilko : "My guess is they do more good than harm.2

Think depends on the person. Some take em like for years and years, no probs - like Mig can.

I can't take them...and many of the other meds, like Pred and Sulph drugs. Very sick.

Anyways, 12 yrs of research is linked to my post. Findings are side effects incl cardiovascular disease. Seems a reasonable paper.

You didn't mention the possibility of bowel strictures with them - thats something that is being more and more recognised I think - particularly I guess with the use of the slow release ones (protect the stomach but then destroy the colon). I've had a fairly definite increase in bowel transit problems in the last year, but will my GP even consider NSAID side effects? No. And I've only had about five years of constant use. No more though.

But, they are a good type of drug for a lot of folk, and they definitely got me back to work within six months of being immobile and housebound. Somehow I think folk on them just have to be monitored a whole lot more and anything at all sinister should trigger a review of whether they are actually the best drug to use.

Yes - bowel strictures.

But my own special interest was in the NTG aspect: the vascular/peripheral short nerve neuropathy - or what?

NSAIDs? I feel strongly, that they were the trigger to my NTG.

http://www.medicinenet.com/peripheral_neuropathy/article.htm

"Peripheral neuropathy is disorder of nerve(s) apart from the brain and spinal cord. Patients with peripheral neuropathy may have tingling, numbness, unusual sensations, weakness, or burning pain in the affected area. Oftentimes, the symptoms are symmetrical and involve both hands and feet. Because the symptoms are often present in the areas covered by gloves or stockings, peripheral neuropathy is often described as having a “glove and stocking” distribution of symptoms.
"Peripheral neuropathy can involve different nerve types, including motor, sensory, and autonomic nerves. Peripheral neuropathy can also be categorized by the size of the nerve fibers involved, large or small.
"Neuropathy can present with many differing symptoms, including numbness, pain of different types, weakness, or loss of balance, depending on the type of nerve involved. Because the autonomic nerves control bodily functions that we do not consciously think of, such as heart rate, digestion (...) Symptoms may include problems with blood pressure...
"Cranial neuropathy is similar to peripheral neuropathy, except that the cranial nerves are involved. Any of the cranial nerves can be involved. One of the more common causes of cranial neuropathy is loss of blood flow from the optic artery to the optic nerve, causing ischemic optic neuropathy."

You see, interesting. An aspect of NSAIDs that one never thought of.

That was very interesting Molly. You sure have been through the ringer.Would'nt it be grand to show the papers to the drs that told you that you were non compliant. Do you have an idea or a plan that you would like to take to your rheumy ? What do you want to take for your AS? Hope your appt with your rheumy goes well, take care.

30 + years cant live with out them.But every one is different and so the AS affects every one different.What every one describes as a flare i have never been not in one.
Bradford

Ahhh - ValsMum, thank you. But don't think 'my' wringer has been half as tough as some here...not by a long chalk. An I is 'tough' - don't 'submit' easily (as my chum blithley told me yesterday! <LOL>)

Not scheduled a rheumy visit yet. But am in contact with my rheumy (raised eyebrows and appalled). Need to dove-tail rheumy and ophthalmologist in the 'same' visit. Always diff to combine the two - especially when on a very tight budget...!!

As for 'taking'. Well, good ole LDN, my mainstay, but that does not help the vascular nor neck problems. Really do need to know 'what' is going on there. Also to address the skin condition - more actinic keratosis found and looks like another mole growing on my back (weird and horrible constant tingling) Not that that is rheumy dept, but would like to run past.

Have a referrel to Moorfields top guy for ophtho. So now just to merge the time element.

Thanks hon for your concern. Much appreciated.

Take care now and - go well -