Why, when you are told you are doing so well, they ch... - NRAS

NRAS
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Why, when you are told you are doing so well, they change everything?

I have had a very tough few weeks. After being told how well I was doing with my RA, my medication, my lifestyle etc, they then decide to change everything. They reduced my MTX, they told me to stop taking painkillers, they prescribed Amitripylene, then Gabapentin. It made everything worse. I have been in agony and have had pain and headaches from hell ever since. My dry mouth came back and I was seriously down in the dumps

My GP told me one thing, another GP told me another, and a 3rd GP told me to not listen to either and to go back to what I was doing, as it was obviously working for me.

What a bloody ridiculous waste of time and money, my time and the NHS's money. I felt like screaming "Leave me alone, I was fine until you messed with everything".

I have now had an apology from my GP’s surgery and another appointment with my rheumatologist to try and put things straight. The third GP even told me to start taking the paracetamol again!!

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You are so good at listning to your own reactions try to hold on to this. You can alway tell the doc you don't want to change anything since you are doing fine if there is no clear medical reason, that makes sense, for the change. The Paracytamol change perhaps was one of these medical reasons(?) XSimba

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It was so interesting... my sister, who has private healthcare gets a whacking hour with her RA specialist and she asked him, on my behalf, about the paracetamol. She told him I only take 2 in the morning and sometimes 2 at night as well, and that I'd taken them for over 10 years. His response?? That's fine. Paracetamol is one of the safest painkillers. Much better that, than me be on something that causes addiction or side effects. The third GP says the same. I mean... they wonder why I'm stressed with all the back and forth.

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I do understand your confusion 😳The reality however being that doctors have variable knowledge about recent research. Not very unusual that the bad effects of meds are discovered after decades of use.:( I can understand that leaving a med after such a long time of use is not easy but personally I do encourage you to look into recent ( real ) research on the effects of P and have your doc explain to you what the risks are in your situation and how the med affects your body. Not enough to just say it's bad or good you need to know why.

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But they are not coming up with any alternatives so warning off paracetamol and having nothing for pain was hell.

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Ask your doc about Cyproheptadine ( not the brand name) This is a well known very safe antihistamine given to children, it has been studied extensively and prooven to have an abundance of benefits. Having done quite a lot of research on this med I can only say that this may be something to talk about with our doc. It's an over the counter med and trying it could be an alternative to what you have been offered to wean off P.

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Me to - if I get a text to go to GP to review my drugs I tell them Im fine - leave me alone - if however you get some thing wrong with you - you cant get an appointment for love nor money !!!!!!!!!!!!!! be firm with them - good luck xx

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Amitrptyline is well known to cause dry mouth my rheumy took me off it and much improved. x

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I was only on it for two nights and Gabapentin for 3 nights. I’ve still got dry mouth so not sure it was that. X

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Jules13, sadly I am not surprised, been there, done it, got the Tshirt with the GPs.

When you are stable again, my advice is to listen only to your rheumatologist, even then with a questioning mind.

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Yes but they were the ones that told me to come off the paracetamol and start taking amitriptylene. I’m fed up with it. What they don’t seem to realise is the stress and worry that comes with these changes is far worse for you. Arghhhhhhh.

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It is a very sad state of affairs, but I've learned to trust no one, question everything, read up, come to this forum for guidance, then make my own decisions on my care.

Why amytrptiline? What benifit ? Side Effects, less than paracetamol ( really/ explain please ?) other options ?

yes, aaarrggghhh

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They prescribed amitriptylene because I wasn’t having the best nights sleep and it also acts as a pain reliever. Lack of sleep

Is the main cause of pain or awareness of pain. So he was trying to get my sleep better and then maybe it would help my headache.

My headache is worse than ever so I don’t know what to do now.

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Jules13, I've been there with lack of sleep, and I did take amytryptaline for around a week last year, but found it worse in terms of side effects than not sleeping.

Each to their own, and amytryptaline is used widely, successfully by many people but it is a powerful tricyclic antidepressant (with many other usages, neuropathic pain, bowel issues etc)

It can treat migraines and tension headaches in some people, but a common side effect is headaches in others. It can also cause confusion, anxiety and agitation, which prevent people sleeping. All very individual.

Is your RD well controlled ? My experience is when the RD is well controlled, I sleep better, then everything is better. And the reverse.

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Yup my RA is really good. That was why I was so troubled that they said I was doing so well but wanted to change everything.

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Jules hi lovely . I'm a rotten sleeper but a friend of mine has ms and very aggressive . She recommended this montmorncy cherry 🍒 high strength to help with pain and to get a decent nights sleep . I was really sceptical but I refuse to take anymore tablets I've gone from 5 to 1 and the Humeria . So I've been taking it for 5 weeks . I've gone from 3 hours broken sleep to just over 5 . No it's not brilliant but it's getting more I'm not feeling as sore when I get up , but more importantly I'm not waking up in extreme pain . I have now ordered my second month put my mum and brother on them and both suffer with OA both are saying it's helping with the sleeping and I've not had a migraine headache or painkiller headache for 3 weeks . Maybe a coincidence who knows xx

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Gosh that’s fascinating. Just read about it. It’s so strange because my dad suffers from gout sometimes and I remember a woman saying cherries were good for it.

Definitely worth a try. It’s natural melatonin apparently. Thanks so much.

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Cherries are often seen as the best antiinflammatory fruit.😊

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Hope they help . I'm just happy to be getting 5 hours I'm almost nice to people now lol x

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You have my every sympathy, why are people only wise after the event?!?!

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Hi Jules

I only ever listen to my Rheumatologist. In fact my GP is fab. She said from the start "the Rheumatologist is the expert not me".

Joy

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