I’m not sure how many this would apply to, but it is an example of the importance of record keeping in one place, and not assume they continue to be correct.
To date, the patient prescription record held by my GP practice has included some that my consultant psychiatrist prescribes, and is dispensed from a hospital. Part of that medication can only be prescribed by a consultant. I have bipolar disorder, which has been well controlled by this medication concoction.
At my last Rheumy appointment it was suggested I try Fluoxetine for my Raynaud’s as other medication resulted in low blood pressure. I knew from here that, although it is generally used as an anti depressant, it is being prescribed for Raynaud’s.
I was “invited” to see the pharmacist attached to my GP practice last week for the “pain meds” talk ( I passed the test) and she noticed the Fluoxetine. She was not aware of its use for Raynaud’s and asked me not to take it until she had confirmed the consultant’s letter was correct. I had no problem with that ( not arguing after getting through the pain meds test) and hadn’t taken any at that point.
Later last week I saw my psychiatrist and mentioned Fluoxetine. He had the sense to do a quick google and spot that it is used for Raynaud’s. He was somewhat disturbed, as I was, because taking that, in conjunction with my fancy bipolar meds could trigger mania. He can see my medication on his portal and asked why his medication was no longer listed.
It seems some spring cleaning of records has been undertaken by the practice, I assume as a result of the recent NHS initiative to reduce strong pain killers and antidepressants from being routinely prescribed when it’s possibly not best. I can understand that the practice wants to pass it’s own records test, but not to my detriment, please!
Watch out chaps! You may not be in a similar position, but it’s disturbing. An icy but “you are dangerous rotters” letter is being drafted from me.
So glad I didn’t start the stuff or you would be getting rambling posts from me, possibly asking if anyone else is getting numb and chilblained from going out in the rain and cold winds. I might be convinced a t shirt should be enough 🤣
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Lupiknits
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And it isn't just that sort of thing. Check EVERYTHING and don't depend on your pharmacist or consultant to pick it up.
I have atrial fibrillation which means I need something to try and sort the rhythm out and an anticoagulant to reduce the risk of stroke. This is a REALLY common situation and cardiologists do it all the time, both my husband and I are in the same boat.
I happened to be looking up the new generation anticoagulant I use (the warfarin clone went all funny and I had to switch) and noted my two drugs should be taken with the antiarrythmic 1 to 2 hours after the anticoagulant. I spoke to the local lab head honcho whose "thing" is anticoagulants and we've been experimenting. It was immediately obvious I was on too high a dose, the blood level was far too high even taking the drugs at different times. If I take the lower dose a/c at the same time as the other drug the blood level of the a/c is about 50% higher than is sensible (increases the risk of bleeding). With them taken at different times it is now fine. I should add, my drug has an antidote if bleeding develops.
My husband was on 2 totally different drugs from me and about a year ago developed rectal bleeding after earlier radiotherapy for prostate ca. When he was hospitalised and they checked the a/c level it was TEN TIMES what it should have been. The surgeons told us they see it all the time when patients come in for surgery. There is no antidote for his new generation anticoagulant, you wait for the level to fall and, if necessary, pour blood in at the top end. And our local hospital here in Italy is one of very very few where the blood levels can be measured.
Despite repeated cauterisation sessions he still has problems nearly a year on. Would it have been as bad without the anticoagulant? We'll never know - but he was put in a life-threatening situation last xmas. You can't trust any system - except your own.
Scary! It’s very difficult for many to check this kind of thing, and we can only hope to catch it ourselves or get a medic in the know to catch it. I think both our experiences show how much we need to check.
It also shows, I think, how useful this forum can be.
I’ve just realised I tried amitriptyline for pain. That was the antidepressant available many decades ago. It’s fine for many, but could have been very wrong for me. I’m glad the nighttime super desert Sjögren’s mouth made me dump it quickly.
Many thanks for sharing that Lupiknits. One of the issues I have re meds is that many times I've read the 'sleeve' notes to find out that many of the side-effects that you have to report back to your medics are the same as the symptoms they were prescribed for. Another situation that concerned me was when I was prescribed migraine meds, the first ones I was given shouldn't be used if you have problems with your liver, which I have. The second prescription I reacted badly to, and the third I was told may well cause low blood pressure. Problem there was he'd prescribed meds a few months back to lower my blood pressure but made no mention that I should stop taking them while I was on the migraine meds although he did check my blood pressure at the consultation and it was perfect. It didn't occur to me when it was mentioned but it sounded a bit risky when I did think about it. As it happens, the migraine meds haven't resolved the problem they were prescribed for so have an appointment later this week to check out the next step. Just goes to show you can't always trust the 'experts'.
Very true! Sometimes the patient leaflet can make you think “why this”? I tend to weigh up the percentages of risk, but we all respond differently and someone has to be the rare case.
My liver has to be checked every 6 months for Aglomelatine (my consultant only med) or he can’t prescribe it.
For those with a strong stomach, the 2018 Never Event list can be found below. Methotrexate features due to inadvertent prescribing of the weekly dose daily EEK!
Make it a very fine letter LK, an icy blast, and copy in rheumy's medical director. It's frightening how things that should be easily caught - eg an IT system flagging up drug interactions?? - get through the net. XOX
Capture the emotions and send all the negative ones in the post. Living with lupus & co is a tightrope walk...we could do without clowns holding the ends! xxxxx
Wow found out in the nick of time! Thanks for your post and it is something we all need to be aware of.
It may be of interest to you and others, even though it could be seen as doubling up, I keep in my wallet a typed list of medications and the names of any doctors/specialists and phone numbers. It's a quick reference for me and for quick reference re potential problems with mixing of meds. Pleased it got sorted for you!
I always check WebMD interaction checker for any new drug/supplement. You can't count on doctors knowing everything. You got lucky that you ran into a good docs that bothered checking
This adds to my innate fear of medications. I’m so glad the problem was spotted and diverted.
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Capture the emotions and send all the negative ones in the post. Living with lupus & co is a tightrope walk...we could do without clowns holding the ends! xxxxx
Stopped taking all meds
Massive flares when on meds
Update from appointment 
How do you contact your Rheumatologist?
