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The UKFibromyalgia Forums • View topic - Medication



Medication

All your questions and experiences of medication and treatments on the NHS or Private Healthcare.

Moderators: perseus, *Lisa*, FluppyPuffy

Re: Medication

Postby Pinkprincess205 » Sat May 05, 2012 3:36 pm

My doctor said none of these medication work for fibro. She said the only thing that does is paracetamol taken every 4 hrs.
Vic xx
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Re: Medication

Postby Melbi_UK » Sat May 05, 2012 6:49 pm

Mozza

I have both steroids tablets 7 mg a day, had to work up to that as at first he tried me on 10mg and was going to work down to a level that worked but the side effects were awful, I became tachicardic when resting, heartrate 140 at rest and blicnding, oh the blinding headaches.

7 mg seem to work well as far as side effects are concerned. During the day I don't think they help much (sounds strange) but I am not waking up much during the night is sheer agony on the side I'm sleeping on, this used to be an absolute nightmare for me. I knew I needed to move to freleive the pain but was so painful to move it scared me, used to have to count to 10 and move! Although I do still wake during the night wiht the pain it is nothing like it used to be and can now move to a new postion without the sheer agony. I also have steroid injections with a long lasting aneastetic (sp) every 2 to 3 months in my shoulders and knees (these areas are my worst and never give up day or night no matter what. I have the injection stuff in my fridge and just have to take it to my gp when I need it injecting, luckily he is specialiesd in giving these. Now, sometimes the injections work for a few weeks, other times they dont, my last ones didn't. :cry: I don't know why they work sometimes and not others as they are injected between the bones in the same place everythime.

Keep in mind if ytou decide to go down the root of long term steroid treatment you will also need toi be prescribed calcium replacement, carry a card with you at all times and avoid anyone who might have an infection or illness that you could catch as steroids supress the immune system.

I'm on:
Trazadone 300 mg (old style anti depressant, now used as a sleeping aid and also help my anxiety and depression) I have been on these for 5 years now as I started with depression and anxiety 2 years before I started with fibro.

Tramadol 400mg
Paracetamol 4000mg a day
Codienne 1000mg a day (mornings only instead of paracetamol) Just a little stronger to help me get going in a morning)
Lyrica (pregabalin) 300mg a day 150 morning and night
Steroid 7mg a day, will be increasing to 8mg next week in the hope it doesn't cause side effects
Steroid injections every 2/3 months, longer if possible.
Calcium replacement (to prevent brittle bone due to taking steroids long term)

I don't think anything works until I miss a dose and oh boy! Sheer agony! I don't think anything will work to relieve the pain completely, just take the edge of it so we can at least try and move around enough so we don't cease up completely.
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Medication

Postby Mozza » Sat May 05, 2012 9:17 pm

Oh my that just sounds so much but at the moment i really am willing to try anything as i'm so fed up of nothing lasting long. Thank you so much for taking the time to reply and will seriously have to consider the pros & cons, if any lol. Xxm
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Re: Medication

Postby Melbi_UK » Sat May 05, 2012 10:04 pm

It does sound a lot but I've resigned to the fact that ifI want some sort of life I have to endure the cons of the drugs. I'm starting on some pain management thing on Wednesday specifically for people with fibromyalgia organised through my rhemy, as you say you get to ta point you will try anything.

I'm hoping I get something out of it and eventually come off some of the tablets I'm taking. I've also been referred for CBT but also receive counselling every 2 weeks, but that is for my depression and anxiety and is ongoing through the nhs due to my bad history of overdosing. :yikes:

I'd certainly try and get more information from others here too as I've only been taking the steroid tablets for about 2 months now, with the hiccup of weaning off and going back on at a lower dose and working them up to a level that suits me. Rheumy reckoned 5mg daily is usually enough for fibro but 5 did nothing for me at all. If you do try them you will know at what level suits you and helps. Thgey also help give some longed for energy although the dorowsiness of the other drugs is atill there, its like adifferent type of eb=nergy and seems to allow me to understand my body better when oit comes to pacing myself. It is difficult to explain but woe be tide if anyone tried to take the steroids off me now lol

Good luck with whatever route you decide and I do hope others here will be able to throw some more light onto the use of steroids for fM
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Re: Medication

Postby Adele » Sun May 06, 2012 12:15 am

i must admit that i've never heard of steroids being an approved treatment for fibro and i don't know of anyone else on them.
anyone?
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Re: Medication

Postby Melbi_UK » Sun May 06, 2012 9:40 am

I don't think they are a recognised treatment for fibro but I'll explain the reason why they decided to try them on me.

I suffer from asthma and last year I suffered a severe chest infection which would just not go away. In the end I was put on long term anti biotics and steroids (2 months) When I came off them I remember so well saying to my GP can I not go back on the steroids as I had felt so much better on them pain wise. This is way before I got the diagnosis for fibro. He did say back then that I could go on them for the pain but I was worried sick about the side effects as my mum was on them for about 6 years and developed that brittle bone disease. Despite me mentioning this, the gp back them offered no suggestions of the calcium replacement so I declined.

As you will all know on your first visit to the rheumy you are asked loads of questions, history etc. I had mentioned the steroids and how much better I felt off them. Nothing was said at that time and she prescribed lyrica and to continue with the tramadol and paracetamol.

In the meantime she would write to my psychiatrist as she wanted to know if this other tablet she mentioned would be ok to take alongside the trazadone. They had a meeting and they wrote to my gp with suggestions of drugs that wouldn't interact with what I was already taking.

Steroids were on the list. I was asked if I would be willing to try these and was given a month to thing about it and the possible implications that could arise.

Also, when they do my bloods the one for inflammation always comes back slightly raised and the white cells are always high. Suggesting that I have imflammation somewhere, but all x rays and scans have come back clear apart from my hands and shoulders which the rheumy said I have the early stages of arthiritis but doesn't beleieve that to be the cause of my pain.

I decided to give the steroids a go and as I've said, they seem to do nothibg for me during the day apart from give me this strange kind of energy, but during sleep I no longer wake in sheer agony and too scared to move for the pain.

Since starting them I have heard from a handful of people on facebook that are also using them for fibro and do find some relief from them. I agree it is a strange one and it isn't recognised as a treatment for fibro, but for some it does seem to help one way or another.
and
I know there's a lot going on in my body other than the fibro but as the rheumy stated in the letter to my gp, she feels the pain I'm feeling is mainly from the fibromyalgia.

I'd never tell anyone not to try this or that if offered as fibro is sch a complicated illness and people react differently to different treatments. I just know that the rheumy suggested steroids, I was prescribed them after being given time to think about it and so far my pain is much better during sleep time. I still wake having to move because of the pain but it isn't as intense and can move easier to a new position.

As with all drugs, people should weigh up the pros and cons. xx
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Re: Medication

Postby Adele » Sun May 06, 2012 3:18 pm

thank you for that detailed reply. unfortunately seroids wouldn't be an option for me as i'm immuno-suppressed. finding the right meds ican be great fun. some painkillers such as tramadol and oxycontin bring on my epilepsy and ammies is one of the drugs that affects my heart, all needing hospital admissions. it wasn't the ammies but another drug left me in a high dependency cardiology ward with a resting pulse of 300. for now i am on a cocktail that could be better but at least it won't kill me. the painkillers make fluid build up on my lungs so i get chest infections and pneumonia but i can handle that.

i am interested in the use of steroids for fibro as i have tried every drug people mention on here. i am considering trying trazadone again. it has made me brachycardic in the past but i like it as an anti-d.
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Re: Medication

Postby just-me » Mon May 07, 2012 11:39 am

I've only just been diagnosed and I'm only on my usual Citalopram which I have been on for 3 or 4 years and have now started Amytriptyline. I started on a 10mg dose and was told I could take upto 30mg. I had my first 20mg dose last night but I'm still hurting. The cold weather doesn't help though.

I seem to have come out in a rash around my neck and jawline since starting the Ami though. :(
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Re: Medication

Postby shazq » Mon May 07, 2012 2:31 pm

Hi just-me

You should get the rash looked at by your GP as it could be side affects or an allergic reaction to the Ami`s. :hugs:
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Re: Medication

Postby just-me » Mon May 07, 2012 8:58 pm

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Re: Medication

Postby shazq » Tue May 08, 2012 3:14 pm

As a Public Moderator of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia.
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Re: Medication

Postby lala1626 » Wed May 09, 2012 8:13 pm

[quote="
Cannot promise that these will help, but I've found them much more effective than Lactulose. .[/quote]



i tried lactulose and it gave me really bad stomach cramps, i am now on macrogol that comes in a sachet and you just mix it with juice doesnt taste of anything but it works really well for me.
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They may need that smile,
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Re: Medication

Postby Kaitlynn » Mon May 14, 2012 7:13 pm

Hello all, I am getting really worried about my sister who has been diagnosed with FM a few months ago. I have been looking at the treatment everyone is having & worried she is taking ALL the medication that everyone else are mixing and matching (including Morphine patches, gabapentin, dihydrocodeine, amytriptiline, valium, sleeping tabs, omapretzol, reboxine, and diclofenac) and these are the only ones i know about. She is maxed out in all of the above and looks 'out her face' every day. I know you have to mix and match to see what works for you but surely she should not be taking all of the above to the extent she is and still be in severe pain. All she does is sleep constantly and i'm worried she is addicted to the medication. Please help.
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Re: Medication

Postby lala1626 » Mon May 14, 2012 7:50 pm

hi kaitlynn i agree with you your sister shouldnt be off her face all the time, has her dr not said anything about this?
how old is she?

im only 21 and not so long ago diagnosed so not an expert yet, my dr always says to me that he will not give me meds that will make me out of it all the time as i work and they dont want you to be out of it, does she realise that shes away with the fairies or just think everything is ok, and does she know you are concerned??

she is lucky to have you to care so much about her so :clap: :clap: :clap: to you!!! xx

my sister is a VERY selfish person and doesnt give a monkeys if im ok or not, i dont hear from her...not even a text.

anyway keep me posted xxxxxxxxxx
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Re: Medication

Postby Kaitlynn » Wed Jun 06, 2012 9:40 pm

Thanks for replies, i have challenged my sister and so has her hubby but this makes no difference. She thinks she is ok and just about manages to work,however it wont be long before she loses her job. She has been to pain clinic and her GP and her hubby has expressed his concern both when she has been there and when seeing GP himself. She told GP she feels drowsy and sleeps a lot - she is comatose 5 mins after she gets home at 4pm. GP told her hubby he cant discuss her even though he has said how bad she is, he also said cant discuss it with her GP either. Her hubby has now photographed and took video so that next time she goes to GP he will show him exactly what she's like. She does not think she has a problem and people outside (when we manage to get her out) think she's drunk.
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