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 Post subject: Afraid.
 Post Posted: 11 May 2018 08:59 
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Joined: 07 Dec 2017 07:38
Posts: 50
I am really at rock bottom at the moment. I think Methotrexate is killing me. Sounds drastic I know but that is what I believe. I have lost 90% of my hair, I'm nauseas all the time, buzzing in my ears. Now my Dr tells me I am severely anaemic due to internal bleeding. It is my day to do the injection but I don't want to I'm really afraid at the moment.


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 Post subject: Re: Afraid.
 Post Posted: 11 May 2018 09:19 
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Joined: 21 Oct 2010 16:03
Posts: 23962
I can well understand your fear. Methotrexate can have side-effects but usually not such drastic ones.

I wonder if your rheumatology team are aware? How have your recent blood tests been?

Hair loss can occur but it's usually very mild - a few hairs on the pillow or in the wash basin after washing our hair.

Nausea, too, can be common. Less so with injections, though.

I don't think it normally causes buzzing in the ears. What did your GP say about this?

Anaemia due to a gastro bleed? What is your GP doing about this? Has he ordered an endoscopy?

Are you on stomach-protecting meds? Are you taking any other meds besides meth, either prescribed or over-the-counter?

I think you should ring your rheumatology helpline and hold back on the injection until you speak to them. Having said that meth might not be the culprit. NSAIDS such as ibuprofen and naproxen are more usual causes of stomach bleeds. You do need professional advice on this, though, and it's a shame your GP doesn't appear to have given either advice or help.

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'If you don’t find quantum mechanics baffling then you haven’t understood it.' (Niels Bohr)


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 Post subject: Re: Afraid.
 Post Posted: 11 May 2018 09:37 
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Joined: 15 Feb 2017 10:26
Posts: 190
i have been on methotrexate since 2005 with no side-effects that I know off, so am alarmed by your experience.

Definitely get professional advice, as there may well be other things going on.

I assume you take folic acid. Are the precautions the same as for oral, which I take, i.e. with glass of water after eating? Regular blood tests and action as appropriate?

Good luck.

I have myasthenia gravis and last year was experiencing increasing pains in my joints which I put down to reducing steriods after 19 years as others had said they experience them turns out to be arthritis in my toe, so never assume cause and effect, although it is tempting to do so.

Good luck.


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 Post subject: Re: Afraid.
 Post Posted: 11 May 2018 09:47 
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Joined: 07 Dec 2017 07:38
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I have just phoned my Rheumatology and have to wait for them to call me back. My Dr told me she has written to gastroenterology for there advice as to whether I need further investigations. My blood results are fine as far as I know I haven't been told otherwise. I am just so unhappy and afraid at he moment .I have been on MTX injection since November last year. I feel that I need help now instead of all this waiting.


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 Post subject: Re: Afraid.
 Post Posted: 11 May 2018 10:00 
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Joined: 21 Oct 2010 16:03
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Youyr GP might be going by your blood results in diagnosing anaemia. When I was a vegetarian my haemoglobin levels kept falling below the required standard. This meant that there could have been a small bleed somewhere so, on each occasion, it was investigated with an endoscopy and, when that was clear, a colonoscopy. There was no bleed and it was sorted with a course of iron pills. I now eat a small amount of meat weekly to keep up my iron levels and it works.

My rheumatologist was far less concerned as he said that RA can cause low levels of haemoglobin and so can the meds we take for it.

If your GP thought you were in danger of a 'proper' bleed I'm sure she'd have packed you straight off to the hospital They are always taken seriously. This is probably just what I've had ie low haemoglobin/ferritin levels on the blood tests indicating slight anaemia which is probably caused by the disease or meds and needs no treatment other than iron tablets.

Don't self-prescribe these, though. You have done the best thing by contacting your helpline. Wait for their response and, if they haven't got back to you by about 2pm, as it's Friday, try again.

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'If you don’t find quantum mechanics baffling then you haven’t understood it.' (Niels Bohr)


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 Post subject: Re: Afraid.
 Post Posted: 12 May 2018 11:16 
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Joined: 21 Oct 2010 16:03
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How's it going? Did anyone get back to you?

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'If you don’t find quantum mechanics baffling then you haven’t understood it.' (Niels Bohr)


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 Post subject: Re: Afraid.
 Post Posted: 12 May 2018 12:02 
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Joined: 07 Dec 2017 07:38
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Hi sticky no I haven't heard anything didn't respond at all to my message. :( I haven't taken my MTX should have been yesterday. I will wait and see if they get back to me on Monday.


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 Post subject: Re: Afraid.
 Post Posted: 26 May 2018 10:13 
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Joined: 21 Oct 2010 16:03
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We're a couple of weeks on now. How's it going? I presume they did get back to you. Are things any better?

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'If you don’t find quantum mechanics baffling then you haven’t understood it.' (Niels Bohr)


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 Post subject: Re: Afraid.
 Post Posted: 03 Jun 2018 07:32 
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Joined: 03 Jun 2018 07:09
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Hi bluejay and sticky, been looking at this post and interested because I too was on Methotrexate years ago. The conversation stopped so worried for you. Is all ok? I know how frustrating it is and how alone you feel when you sense something is just not right and no one seems to be listening. I hope you have got answers and are feeling better. We are all stuck between a rock and a hard place on these drugs. We want to be rid of Psoriasis or Arthritis but the drugs that help us also cause their own set of problems, sometimes leaving us thinking is it all worth it and am I comprising my health further. There’s always what I call ‘a trade off’. I’m on Cimzia injections and having a whole heap of problems making me worry about what I’m doing to myself. Wishing you the best.


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 Post subject: Re: Afraid.
 Post Posted: 04 Jun 2018 14:49 
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Joined: 21 Oct 2010 16:03
Posts: 23962
Quote:
We want to be rid of Psoriasis or Arthritis but the drugs that help us also cause their own set of problems, sometimes leaving us thinking is it all worth it and am I comprising my health further.

Having had RA for about 30 years before methotrexate began to be used for it I never think like that. I know it's worth it. I know I am regularly monitored for unwanted side-effects and I know that I never had a chance of 'being rid' of the RA.

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'If you don’t find quantum mechanics baffling then you haven’t understood it.' (Niels Bohr)


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