Long term ill hitchers and those in the know, can I have your thoughts please? Meds related

I can't comment on the drug doses or anything but you must rattle when you walk (or roll!) ?

Can you get an appointment to see the consultant rheumatologist again? Or the psychiatrist to discuss the depression meds?

They would presumably have the most expertise in balancing these combinations of pain medicines and antidepressants, respectively.

?

Hello my lovely ?

My experience of serious and long term illness is thankfully very limited, but I found that once specialists etc were involved, our GP had very limited knowledge of the drug regimes prescribed by the specialists.

If you have concerns, I'd be more inclined to talk them through with the specialists.

Thinking of you lovely lady, even if this response is no help whatsoever as my experience is so wildly different to yours, and all I've done is pissed off any GPs who are reading this.

KJB x

Thanks Zeb. I often wonder if my 1000+ pills every month is why I have no appetite. ?

I saw the Psychiatrist last week and it was then he added on the extra 25mg amitrypiline and zopiclone. It's since then I've felt absolutely dreadful. I went to the GP today because of this and he says he's not in the slightest bit surprised I constantly feel hit by a bus. I'm seeing the Prof in a couple of weeks.

Both consultants are absolutely fine with my medication and dosages, it's the GPs who always seem horrified or not at all happy with what I take. Whenever I have to see a different GP, I come home feeling like a drug addict and the only person in the world who takes so much. ☹️

Hello my lovely ?

My experience of serious and long term illness is thankfully very limited, but I found that once specialists etc were involved, our GP had very limited knowledge of the drug regimes prescribed by the specialists.

If you have concerns, I'd be more inclined to talk them through with the specialists.

Thinking of you lovely lady, even if this response is no help whatsoever as my experience is so wildly different to yours, and all I've done is pissed off any GPs who are reading this.

KJB x

I know some ADs can take a while for side affects to calm down and the benefits to kick in but I've no idea whether this would be the case for zopiclone or the extra amitryp - hopefully P&P or other pharmacists or docs know lots more.

I'm not surprised the GPs struggle with your meds though, if you don't prescribe them everyday it must look like a terrible nightmare to work out interactions and side affects and so on.

Sorry no use to you but didn't want to read and run!

I think KJB's right - your case is pretty specialist so it's probably outwith the bounds of the GPs usual remit. I've had similar issues with entirely trivial prescriptions suggested by ENT specialist but queried by GP. They're doing their job to query it since I guess it's them that's responsible for prescribing but it's not really fair if you end up with conflicting advice. Probably best to talk to specialists re those drugs - but appreciate it might be hard if you can't get appointments. Maybe they could write again to your GP outlining their suggestinos? (I'm sure they have already but maybe GP wants clarification?)

Bloody hell, I am not surprised you feel knackered and awful because that is a hell of a combination of drugs. I am obviously in no way whatsoever someone who knows anything at all, and I don't find the amount of pain killers that surprising (it;s quit e mix, but they all act in different ways, don't they?) however is there a chance that they are contributing to your knackeredness? I've taken lesser combos for shorter periods and the codeine in particular has wiped me out. Do you build up a resistance ot this effect if you are taking it long term?

On a lighter note, my dog takes more tramadol than you, which is possibly why he seems so spaced out now ?

L
xx

? Mrs M, sorry you havn't been too good lately ?

Has any of the GP's contacted the prof's at the hospital? My GP wasn't happy with the cocktails of dmards I was on and she phoned to speak to the rheumy specialist and went over it all before she would give me the prescription. Maybe thats an option for them to speak to each other?

It's crap having to take so many meds and sometimes you do feel like a junkie but if they arnt helping you at the mo definately push to see your specialist sooner or ask the GP to contact them.

{hug}

? KJB. Thank you. xx

I do feel sorry for the other GPs but I always find myself justifying things and it really does make me feel rotten. My very lovely young salaried GP is fab and is a "if that's what you take then it's what you take" kind of doctor. She's on holiday this week so couldn't discuss it with her as I normally would. She is very honest and I take what she says seriously as I have a lot of trust in her.

Zebra, thank you xx

It has to be the Zopiclone, I'm getting other minor side effects too so I'm sure it has to be. I've been on Amitrypiline for 12 years now ? so that doesn't really cause any negative side effects any more, even though it's a much higher dose these days. The GP has said it's up to me if I want to come off it as it's a sleeping tablet rather than an anti-depressant.

It's just so hard and would love a day where I didn't have to think of drugs. Even on a good day (for me), I'm reminded of being ill as I have to keep taking drugs. [sigh] I'm having a genral grrr phase at the moment, which I know doesn't help but I just want to be normal. I worked out yesterday how long I've been ill and it's 13 years and 6 months, in that time I've never had a day without feeling tired and would love to remember what it feels like to not be. [woeisme] Sorry, didn't mean to outpour this bit. ?

WKJB said.

Thank you everyone, it took me so long to type my last reply that I missed all of yours. I appreciate all your replies.

The Prof always writes to GP and the Psychiatrist always faxes so they have copies of everything but it's their reaction when they see my drugs page on their screen. I have to tell them to look for the letters from consultants to see why I take so much.

I'll be seeing the Prof soon (23rd Aug, I think) so can discuss pain and lupus stuff with him. I just often wonder if I do take too much sometimes.

Ah Lois, poor pooch. ? Is it the same dog who used to take steroids?

Pinkjay. ? How are you keeping these days?

I also find me GP is far more worried about all ther meds I take compared to the specialist, thye always say im on too much

For me its

Predisolone..2.5mg daily(trying to drop and almost off it but been on for over 10 years at 20mg daily)

Hydroxychloride..200mg once a day

Methotrextate..immunosuppresent..17.5 mg weekly

folic acid..2.5 daily except for methotrexate day

Infliximab by infusion every 7 weeks

For pain

Diclofenic 50mg 4 times daily

tramadol 50mg 4 times daily or more if pain bad

Amitriptyline 20mg nightly

calchichew...when i can stand taking them

Orimorph..as required

Keppra for epilepsy...1oomg daily

fybrogel twice daily

So yes you do seem to take more meds than me but not huge amounts more

I would talk to your specialist as im sure the GP,s are not so used to meds in these huge quantities

Are you finding the drugs are helping? thats the bigger issue

Whats the plan now re todays diagnosis ?, i have a bone density scan soon.

I also find that if I take my meds early im not hungry all day

Do you think you can get your appt brought forward at all if you spoke to the prof secretary?

I'm not too bad at the mo thanks, came off all the dmards, I was just fed up with all the SE from them, I know a day will come when I will have to start them again though!

?

Oh MrsM I really do feel for you ?

I totally get your comment about wishing you didn't have to think about drugs for a day. I am on 1/10 of your level but it drives me mad to have alarms go off for inhalers, tablets etc! So I get where you are coming from.

I think one of the problems is that every person you see always has a different view/idea and you just have to go by who you trust and your own research. I think if at any point you aren't 100% happy then you ask for a 2nd opinion. It may well be that someone looking at you with fresh eyes can help. I see 3 people for my asthma, an allergy consultant (private), my GP and the Asthma nurse. All 3 say different things and suggest different drugs. It recently came to light that a locum GP I saw put me on two drugs that shouldn't be taken together and I'd be taking them for a year! So, I do think that part of the problem can be having too many people involved with the one issue.

I also think it helps to find someone who's a bit geeky about what they do and has an interest in you. My asthma nurse is like this and spent 40 minutes with me at the last visit. She's up on the very latest drugs, enjoys it and finds it all really exciting and interesting and that really helps. I do think this is where specialist come into their own as they only have one area to look after whereas GP's have to have a vast level of knowledge.

I know nothing about pain medication but if the above isn't working can they not look at other options? Is there say one or two stronger medications you can take instead of 4? have you looked into it yourself? I know google often isn't our friend with illness but I do find it useful to go armed with some knowledge.

Do you have a good faith in your Rheum Prof? Have you been to see anyone else? Maybe it's time to go and see another Lupus specialist off your own back just to see what they can offer. It may be nothing and it's in no way saying you lack trust in your current guy but I'm a big believer in 2nd options to make an informed choice. let's face it if I took my car to a mechanic and they said "It's going to cost £1k to fix it", I'd be off for a 2nd opinion but we seem reluctant to do this when it comes to health, which seems silly.

I really hope you get something sorted and can start to feel better!

You rang ?

Hey Mrs Magic, sorry to hear this is getting you down.

First the Zopiclone, I believe this is a hypnotic (sedative) rather than an anti-depressant, so just there to help you sleep. It should work within a couple of hours, and knock you out all night (half life = 5 hours). If it isn't helping you sleep, I'd make this known to the prescriber as it has some pretty rough effects. It is very much a "quick fix" drug as tollerance can build up within a matter of weeks, along with a withdrawal syndrome if you stop taking it suddenly.

As for the quantities, I'm not a medic, but certainly you are at the higher end of medication, but then it is probably "normal" amongst Lupus sufferers.

The pain killers do seem slightly excessive though - if you are worried you should discuss reducing the dose in stages and see how you go - you might not necessarily feel that much worse (paracetamol / ibuprofen really are only good for a headache or taking the edge off a sprain). There may well be something stronger that you could take, but with fewer doses. You need to speak with your GP before taking any action though.

Hope they get your cocktail smoothed out ASAP !

Clodders, I did really well on para & tramadol when I broke my elbow (along with Oramorph <happy sigh> so maybe moving to tramadol and dumping some others could work.

? for you my love.

Are you not on Bonviva or any type of ibadronic acid for your bones? I get that every month (the treatment for pre-oseteoperosis) and I buy Osteocare which the GP is happy enough with. It costs about £4-5 a month. There is no real treatment for Osteopenia and apparently I'm at 8.6% risk of breaking any bone in the next year (hopefully the last one counts!) and 0.6% of breaking a hip in the next 10 years?! ? GP says it's a pretty standard diagnosis for someone on long term steroids. I just need to remember to take the Bonviva every month <slaps wrist> (actually, I best not do that, I might break it!)

I'm pretty certain I'll be back on immunosuppressants and think I'll push for methotrexate rather than azathioprine as that really didn't seem to help that awful much. Once a week sounds appeallng too

? Pinkjay. I'm glad you are managing at the moment.

Thanks Pooch, as always. I will see my Prof next month (I do trust him, I just with I could see him more..the problem with eminient consultants is they travel lots) and discuss it all with him. I'll look towards getting a second opinion if it doesn't go the way I hope. xx

P&aP, thank you ?

The Zopiclone is working and keeping me asleep but during the day I feel vile. It's gone from taking 45 mins to work to around 2-3 hours and gone from keeping me asleep for 13 hours to 8 hours. The side effects are horrible, MF tells me she calls them zimmerframes as it feels like you have been chewing on one all night and she's right. ? Bleugh.

I've never been sure why they are so insistant on me taking paracetamol and to be honest, I agree with you. They are bottom rung painkillers really although I accept they probably interact in a particular way with the other stuff. I used to take them combined as 500mg paracetamol and 30mg codeine before moving to the seperate dihydracodeine.

Thank you for your advice.

Thanks everyone. ??

? Mrs M, just to say if I was going back on the Methotrexate (very likely tbh) I would really consider the injections rather than the tablets, I was on 17.5mg weekly and the SE were just to much for me, I was told the injections are easier on the tummy etc, so I was going to give them a go next time.

?

I can't give you any advise on the medication, but I'm not surprised you are knackered taking all that.

I'm still waiting to see someone about the results of my DEXA scan. I was told my hip score (now I sound like a labrador ?) was low but my spine is fine. It could explain the severity of my hip break, although it was high impact it was a very bad break. I've chased it up with my GP and they are chasing the results to discuss if I need medication.

When I had the scan they gave me a diet sheet but didn't mention what supplements might be best. I might try the Osteocare in the meantime if you've been told that's a good one, thanks for posting the link.

I hope you get your medication sorted ?

Thanks for the tip Pinkjay! ? I sound nuts, don't I? Actually wanting to go on such a potent drug but I just can't carry on like this.

Lady G, you were told you had an old lady's injury too, weren't you? The only reason I got a full reconstruction was my age.

I'm at a high risk of osteoperosis anyway so always been aware. That plus steroids, I'm pretty doooomed! ? The GP said he was more than happy with me taking Osteocare (it's the cheapest individually Asda btw, £2.88 for 30 tabs and usually on 3 for 2 on Boots or on introductory £5.55 for 90 offer on Chemist Direct, if you have other things to buy) as it's equal if not better than the chewables on prescription (which ming) apparently. They are like horse tranquilisers though. ?

I hope you get your results back soon and that your bones aren't as bad as you fear. ?

Hello my love

my thoughts: you can do nothing about the lupus meds. nor the osteoporosis meds/calcium. absolutely necessary IMO

re depression meds: presume that amitriptyline/zopiclone is what works for you although amitriptyline is not a common drug for depression any more - but you're under psyh care so I guess you've tried the others first (eg citalopram venlafaxine etc) zopiclone is only licensed for short term use buit I have a small number of patients who take it long term under supervision of psych. addictive though.

It's the pain meds that are a bit odd tbh. Are you under pain specialist? I'd be tempted to get you off tramadol (dirty drug, lots of side effects) and dihidrocodeine (addictive, gives a bit of a high) and consolidate eg swap you onto MST or preferably a morphine patch like butrans, to be taken with the paracetamol and ibuprofen and gabapentin. but even doing that is only going to swap two drugs for one IYSWIM.

I suspect this is what you need, and needs must. Pain clinic is an idea though.

Oh, you definitely SHOULD be on paracetamol. They're safe and work synergistically with the stronger ones meaning you need less morphine. Def stay on these.

Oh Mrs M ? lovely as others said Im not suprised you are knackered and feel like you have been hit by a bus on that combo..

Im on not even a 5th of what you are and I feel like death warmed up sometimes (Diclofenac 50mg x 3 a day, amytriptaline 10mg daily, zopiclone 7.5mg as and when needed) so its not surprising you do

Ive been on the zopiclone now for about 18 months and am only prescribed 14 at a time but normally dont get them every month, my current GP doesnt like the idea of me being on them long term but my rheum doc and the sleep clinic agree I should be on them as and when so he likes it or lumps it...

The painkiller combo you are on does sound a little extreme to me as a pharmaceutical based person, mainly because tramadol and ibuprofen are very similar in action and I was always told you shouldnt take 2 NSAIDs together - though if your rheum prof has prescribed it Id assume he knows what he is doing (esp being a prof)

I really do hope you can sort something out soon, maybe try bringing your appt forward as someone suggested, and you start feeling better, you really do deserve some better luck with your health soon!!!

Rache, thank you so much, that's a real help. ? Sorry I'm so late in replying.

Re depression meds, I thought that too about amitrypiline but my psychiatrist told me it was often overlooked as an effective anti-depressant. I had tried all the others over a couple of years and as I was already on 75mg, he wanted to try doubling the dose rather than another AD. It's been working pretty well for 6 months. I had been starting to slip a bit and when I saw him last week, he said he wanted to add the extra 25mg of amitrypiline as a permanant thing and add on the 7.5mg of zopiclone for a month. Last year, my very worst moments were during the night and the psychiatrist is keen I sleep. I got worried about the addictiveness of another pill (I'm completely addicted to amitryptiline and have been for years, I can't sleep without it) and got my mum to look it up for me and discuss it with a pharmacist at her old work. The pharmacist said it would be used to teach my body to regulate my sleep times and she would definitely recommend I took it, so I did. I was worried that after the month, I wouldn't be able to sleep on my own but thought I would try.

Re pain, I really appreciate your advice. I've been referred to the pain management clinic but as you have to attend every day from 9am to 3pm for two weeks, it was decided I wasn't well enough for that. It's yoga, group work and looking to get you off pain medication rather than find efficient drugs. I would really like to see a pain specialist (if they exist here) as I think would be a real help. I'll ask again when I go next month and I'll mention the possibility of other things like you have mentioned. I don't mind the amount of drugs I take if what I am taking is working efficiently. I'll go and see my lovely gp (I think you are both very similar ?) when she's back from holidays to discuss things with her first as she is always very honest.

Thank you too Claire. ?

I just typed a huge reply and bloodywell lost it and now I am too muzzy to type it again.

So in an egg shell, I am sure there will be a pain team at your hospital who will help with your drugs (I have never been sent to clinics or told to do yoga and I am sure that's not what you need at the momen) I feel sure MST woud be better for you and could probably stop you having to take co codamol and the tramadol. Push for someone to see you, they really will be able to help.

Lots of love and sorry for this rubbish short post, don't blame it on the moonlight or sunshine, blame it on the hitched!

xxx

Oh Madge lovely, I'm sorry you have to take all that.

Your pain clinic sounds weird. I was recently referred to the one here and had a consultation with a consultant who did a poky thing and identified that I have most pain in 3 areas and has recommended I have injections of steroids and anti inflamotories directy into those areas. I have to have the first one at 4 today (eek). It seems a strange thing to go to a pain clinic an have them try to get you off the meds totally, I know in an ideal world that should work but sometimes pain is too strong to be tackled by other methods.

I'm sure there must be a pain specialist somewhere near you who can try and get you on a combination of things that actually work. ?

Thank you MF and Bowski. ?

I'm sorry your long reply was eaten, thank you for taking the time to type it when you feel so poo yourself. ? I won't blame it on the moonlight or sunlight, I promise.

When I went to the pain management clinic interview (yes, an interview ?), I filled out a gazillion forms, had a tour and was asked by a nurse why I thought I wouldn't manage every day. She talked me round, said I was being negative and that I should give it a try. I decided to do it, got psyched up and positive, then was called in by top doctor in the clinic and told I wasn't suitable for the programme as my general health wasn't good enough. I was gutted. I wasn't even well enough to go to a clinic at the hospital. I got so upset that H had to come and meet me from work. ?

I assumed that was the only pain clinic at the hospital but after hearing about MF's pain team, it got me wondering if that was available here too. It sounds like something I could get a lot from and get my drugs re-jigged by specialists. There has to be something that would work more efficiently than what I'm taking. I'm definitely going to speak to Dr Kate (she uses her first name, how cool is that?) and then the Prof to see where I can go next.

Bowski, I hope you get on ok today. ? The steroid injections aren't to bad at all. They can sting a bit afterwards but nothing to worry about. xx

Mrs M ?

People only look askance 'cos you're so young and gorgeous.

That kind of regieme looks reasonably common to me. If you need it you need it, what else are you going to do?

I'm sure Rache is right that you could play round with your opiates if you need to change things, but it doesn't sound terrible to me.

As others have said, zopiclone is 'only' a sleeping tablet and if it's not helping then I'd feel free to stop it... maybe after a phone call to your psych.

And if you want to do the pain course, go badger them. ? You're a better judge than they are of what you can manage.

Bloody horrible autoimmune disorders.

Awww poor you ☹️ ? Hope you can get it sorted and maybe take fewer. I'm on 7 tablets a day for various things, an inhaler and a nose spray and that seems like loads to me, so must be a nightmare for you!

Thank you Zoay. ?

I could have managed at the time but there is genuinely no way I could do every day for two weeks now. Blah.

You are very lovely,. ?

Thanks Gryfon too. 7 is still a lot for most people. xx

I think you are amazing to be doing as well as you are. amatriptaline knocks me for six, i take 50 mg nightly to help with pain through the night but it absolutly knocks me out.

hopefully you can acess a good pain team and can get help. a friend of mine had a huge success with the morphine patches.

Just a thought Mrs M have you seen a sleep clinic? Not sure where your nearest one would be but Id have thought Liverpool Uni would have one, I attended one at Papworth Hospital near Cambridge and it was very useful and I got some tips from them, I do seem to be sleeping a bit better at the moment (please dont let this jinx it)

It might help with the sleep side of things...

Much like Monkey Fingers, a long reply from me was eaten by hitched, although mine was rather woe is me.

I called the hospital to double check appt as I couldn't find letter and it's a week earlier than I thought. It's while I'm at my mum's for a rest and for several reasons, I need a break and would have been there now if a friend wasn't visiting Liverpool this weekend. I've had to change it, begging the Prof's secretary they could see me before or even a week later, telling them how I'm feeling but the earliest they could give me is 26th September. I'm gutted. She's said there is a SOS list I could go on but that's what I was asking for today. ? My fault and I'm gutted.

I'm also not going to be seeing my psychotherapist for a month now as the PCT centre I see him is being used for Tamiflu distrubution and I just can't sit in a waiting room (one large waiting room for 16 clinic rooms a dentist) with people who have been in direct contact with Swine Flu. I've already been told I should be staying at home for the forceable future, which I'm not doing but I am being very careful where I go and who I mix with. I think a Tamiflu centre might not be too careful. ?

J-jO, thank you. ?

ILS, it's not something I've considered. I'm glad it's working for you and certainly something to consider. xx