A big scare for my family ... Meloxicam ... Long story

[paw]

My Niece is 17 years old and she is suspected EDS and is extremely hypermobile like many in my family. She has fibromyalgia and has a history of almost constant migraines. Her Neurologist put her on medicine that is working very well for the migraines (sorry I can't remember what it is) and he put her on Meloxicam for her joint pain. She was supposed to take it daily as needed for her Fibro and assorted pains.

She has been on this for about 6 months now and she has been doing well. She only takes the Meloxicam when she has a flare. She had several doses within a few days and she tells my sister she is not feeling well, she wants to skip dinner and go lie down. Okay, they think she is getting the flu because my sister and her husband had just gotten over the flu.

She takes a shower before going to lie down for the evening. While she is in the bathroom she passes out on the toilet. This is not normal for her. She goes to lie down, but keeps passing out. My sister comes to check on her and gets alarmed. She decides they need to go to hospital, that this is not the flu.

My sister tries to get her to walk to the car, but she keeps blacking out. My sister calls her husband to carry her to the car. He gets very worried and he decides they will all go to hospital. So they take her to Emergency. She is given IV fluids and they see she is anemic. The doctor is not sure what has caused it, they decide to keep her for observation. This is where things go really wrong.

Niece starts to vomit blood. Lots of blood. They do an NG tube, but the blood clots are too large for the tube. She vomits large clots for several hours. They do tests and see that she has a huge ulcer and she needs to have it repaired. They had to do a surgery to clamp the ulcer closed. Niece gets 2 units of blood and they keep her in the Intensive Care Unit for another day till she has become stable. Tests revealed that she had blood in her stool as well. My Niece was very close to dying from blood loss. They think she had been bleeding internally for at least a week.

Now my Niece has to take medication for her stomach, and she is not ever allowed to take NSAIDs again. This group of medicines can be very harmful to some people. If you take them, be aware of stomach pain, bleeding and becoming faint or dizzy. My Niece put the stomach pains she had for the past week down to her period, and she had no obvious bleeding till they were at the hospital. Niece never took more than the prescribed amount of the Meloxicam, she actually used much less than she could have.

Be careful everyone. I don't use NSAIDs because 4 people in my family have had strokes while taking them. I was surprised my sister allowed her daughter to take them at all. Talk to your doctor if you are worried about the risks of these medicines.

[Chloe♥]

Wow, Paw, that must be awful for your family - the only blessing I can think of is that she will be free of NSAIDs from now on.

I took Meloxicam for about two weeks, and I found it much less side-effecty than Naproxen, but yeah, NSAIDs can be really nasty and I try to steer clear of them.
This is why I seriously oppose the recent change to allow Naproxen available OTC...

[Eloise]

Hi Paw - I really feel for you and your neice - it must have been really scary, and it is good that you are warning others.

However, I just want to provide some balance so that others don't get too scared to take NSAIDs - please ask your GP or Pharmacist if you are ever worried about symptoms - or go straight to A&E if you ever have any loss of blood from a non-normal place.

All NSAIDs have the potential for this, although meloxicam is one of the safer ones in this regard, so paws neice is unlucky (1 in more than 2000 unlucky). Unfortunately, no medicine is without risks and so it will always be a balancing act of the potential benefit against the potential risk, and NSAIDs are of massive benefit for those that can tolerate them. For those that get indigestion with NSAIDs - there is no link to this and actually developing a GI ulcer or bleed - in fact some data suggests that most GI bleeds occur in those that didn't have indigestion.

Below is the chance of GI bleed due to taking any NSAID at full dose for a whole year (in different age bands).
16-45y rs - 1 in 2100
45-64 yrs - 1 in 646
65-74 yrs - 1 in 570
over 75 yrs - 1 in 110

Also, if there is potential for GI problems (i.e. past history, age, other medicines) then a GI bleed can be prevented for alot of people by the use of a PPI (i.e. lansoprazole/pantoprazole). Trial data shows that PPIs reduce the risk of endoscopic gastric ulcers by 63% and the risk of duodenal ulcers by 81% (these are changes that happen before any symptoms or bleeds - and so the reduction in bleeds is greater as not many ulcers actual develop to the point of bleeds anyway).

Reference for GI bleed data - BMJ 1997; 315 1333-1337, MacDonald T et al.
Reference for PPI protection - Cochrane Library, 2002, Rostom et al
(mods - do I need to reference on here for data?)

[Finarda]

Wow - how scary! Glad she's recovered. I couldn't even take a baby dose of aspirin without having stomach pain, and when I took a regular dose of aspirin for a month before getting pregnant for the first time I ended up with a stomach bleed too. Now I take Losec (omeprazole) and can take NSAIDS OK now, although I limit them.

Fiona

[Sue New]

Hi Paw,

So sorry to hear about your Niece. I hope she recovers soon - this must have been so scary for you all.

Best wishes

Sue.

[barkingmad]

Gosh Paw, your poor niece, I hope she recovers quickly, how terribly scary for you and her parents of course.

i cant take NSAIDS either, they give me tummy ache, and I cant see the point in taking another pill just so I can take them. They never worked for me, I was on them from 16 to 21, and then started gradually getting more stomach problems.

Also I dont understand why they would want us to take them, unless you have injured yourself, because ours day in day out pain is due to chronic pain so there is no inflammation, where if you strain, sprain, sublux, dislocate then ok there might be some use then for inflammation. Perhaps Eloise can make me understand why they seem to put so many folk on these?

[nonyanomemory]

Oh paw, thank you for taking the time to write in detail this distressing story. Your poor niece, I hope she recovers fully from all of this.

Eloise, I know that the statistics do make sense but I wonder if they have ever been done on purely HMS/EDS patients where I think potential problems would be much higher. My father had a very similar experience as described above and all our bendy family members have had varying degrees of difficulty with them. Funnily enough, they will no longer prescribe NSAID's in A and E locally due to problems with them, varying reasons but one of them raising blood pressure apparently, along with stomach bleeds in patients whose problems are not yet identified due to the nature of A and E presentations. There is a long thread somewhere on the site with people's experiences of them and some with EDS are really anti them. My local pharmacist feels that they don't suit me for varying reasons, most of which far to boring to go into here but also because he feels that they don't help the hypermobile patient who isn't suffering with inflammation as they may make the hypermobile joint more vulnerable to injury (something to do with synovial fluid?) although his input is helpful most of it goes above my head. My father though has had a very similar experience to that described above and he is the one from whom I inherited my EDS. With emergency presentation and operations as a result. I can't take them in the first instance because I just itch and itch and itch, then I throw up then I pass out. I think my EDS stomach lining is stretchy and thin just like the insides of my vein walls, my goodness a salutory tale. I know they are good for the general population but I have always always erred on the side of caution with them. Only had this conversation funnily enough with a new doctor at my practice this week, and despite his good intentions further to speaking to my actual gp he rang and said that he had withdrawn the comment on my file that he thought I should try them again!

Paw I know I have said it already but I think it is important that these type of stories are put here as EDS problems present on the inside as well as on the out. Thank goodness she had family around her when this happened.

Take care nonya

[paw]

Thank you for the good wishes everyone. My Niece missed several days of school (this happened a week ago) and she has to have medicine till her stomach heals. I don't know how long that will take, they are monitoring her.

It seems that people with EDS and HMS are more likely to bleed. It might be caused by several things, but we have more cases of bleeding than people who don't have EDS or HMS. That is why I posted this. I just want people to really take any warning signs seriously such as the dizziness, passing out, stomach pain, extreme paleness, and the upset stomach. My Niece thought she was just having a fibro flare and a bad period.

If you get some of those symptoms and you are taking NSAIDs, please see your doctor right away as it could be serious. If my sister had just let her go to bed and she had still been at home when the bleeding started she could have died. They live way out in the country and they are 25 minutes from the hospital.

Eloise I did not know how uncommon this was. Leave it to my family to be the 1 in 2000! We seem to be good at that. Another of my bendy sisters has had bleeding ulcers before, but she did not need hospital care.

[parent]

Sorry to hear about your niece she was very lucky.

My daughter aged 15 was put on them at the lowest dose along with omeprazole to protect her stomach, initally they helped the pain in her small joints, However, they caused multiple ulcers in her mouth she could hardly eat or talk. The benefit was soon outweighed by the side effect and she had to stop taking them even though our GP gave her a mouthwash to help all it done was numb her tongue.

Best regards
Teresa

[Hayley]

hi Paw

So sorry to hear about your niece, what an awful thing to happen to someone so young, your family must have been so worried! I hope she has a speedy recovery Thanks for posting the warning. I take Voltarol/Diclofenac but also take Lanzoprazole to help prevent this kind of thing as I also have a Hiatus Hernia.

Hayley

[Eloise]

Donna - it is my mission in life as a Pharmacist to try and reduce the overuse of NSAIDs in inappropriate indications. (See my PM).

Unfortunately, unless you resort to steriods then NSAIDs are the only way to attack and solve inflammation that causes damage from injuries and around joints. However, this is mainly for acute injuries and so only short courses of NSAIDs should be needed, but there are long-term conditions such as RA that need them.

Most "pain" especially chronic pain has little inflammation that needs dealing with and so other pain killers maybe safer, and also non-drug related options could be more effective and less damaging in the long term. Unfortunately, ALL painkillers come with side-effects and depending on other conditions and the type of persons these may be worse for a person than having NSAIDs.

Personally, I only take my ibuprofen for short periods of time following dislocations to reduce actual inflammation, and I also take lansoprazole to protect my stomach. For the rest of the time I use other non-NSAID pain killers and therapies.

Nonya - I have no idea what the statistics would be for EDS/HMS people - unfortunately we are never represented in any trials. We would probably be excluded from any drug trials as being too complicated as we might skew the drug companies data as we are prone to problems!

[nonyanomemory]

I agree Eloise, to include us lot in a drug trial would definately skew the statistics, praps thats why its important for peeps to put their antectodes (sp) here! I am one of the ones unfortunately who can;t take the lanazaprole (sp rubbish today sorry) for I get the whole list ofmost common side effects diarrhea, nausea, vomiting, constipation, rash and headaches! They never worked out if the irregular heart beat was me or the med!

nonya

[paw]

I am bumping this thread up with a little update. My niece is doing really well. She is no longer taking the stomach medicines and they say she has completely healed. Of course she is not allowed NSAIDs at all. She is studying to be a nurse.

I know that family experiences have made me unreasonably worried about the NSAID class of drugs. I hope that other people can use them safely, but also they should know about the risks and when to seek help.

[Finarda]

Glad to hear that your neice is doing better. I know that before I started taking Omeprazole, I couldn't even take one ibuprofen without being doubled over with pain in my stomach. NSAIDs can be harsh and dangerous as you say.

Fiona

[taddygirl]

For some reason, my GP won't prescribe PPIs unless you already have gastric symtpoms - very short sighted in my opinion and it makes me reluctant to take meds. I was told by Prof B to take ibruprofen for a few days during flare up. Have had a really bad flare up recently so have had to take quite a bit - the new doctor at Chapel Allerton nearly fainted when I told him I took ibruprofen and put me on Meloxicam for 3 weeks instead. Seems to be doing the trick so far (have had the best pain free nights' sleep for ages) but still no PPI. I wish there was some consistency between doctors - especially when I know something about it through my clinical practice and my opinion is ignored. What happened to patient centred care?