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Methotrexate


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#1 Peter

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Posted 13 October 2010 - 07:36 AM

Hi,

It has been awhile since I have been on the forum and have the following question. I have now been on methotrexate for 10 months first on tablets and then on injection for the last 18 weeks. I am getting increased side effects. These consist of nausea, headaches, dizziness, and feeling low and a fuzziness throughout my body. I spoke to the rheumatology nurse and she suggested increasing my folic acid to 3 days and taking travel sickness tablets to counteract the nausea. My question is does anybody else suffer from these symptoms after being on medication for so long?

Recently I have increased my activity, I am now working three days, have got back on my bike once or twice a week doing approx 6 miles each time. Also I have been sailing a couple of times. Is there any chance that all this activity could be causing some of of what I am going through. I look forward to any replies.

Peter

#2 Amanda Thorpe

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Posted 13 October 2010 - 08:36 AM

Hello Peter

I'm sorry you're feeling so unwell. Are you having regular blood tests to make sure everything is okay?

Unfortunately I was taking mycophenolate for 10 months and encountered severe headaches and had to discontinue it in favour of methotrexate and have had no major side effects. If your doctor/nurse feel the methotrexate is causing your current symptoms is swapping to another immunosuppressant an option?

Yes over doing it, if you are, isn't going to help and will just exacerbate how you feel.

Take care and keep posting.
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#3 lizzie

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Posted 13 October 2010 - 11:03 AM

Hi Peter,

I can empathise with you on this. I have been on Methotrexate for 15 months and am miserable every weekend (I take it then as I work full-time)because of side effects - nausea, lethargy, lack of concentration and irritability. It's got to the point where I won't take the injection if I have something planned for the weekend. I would dearly love to discontinue it - but my rheumatologist is resistant to me doing so. As Amanda suggests, it could be worth asking about changing to another immunosupressant.

Initially I was on mycophenolate for several months, which I really liked- little in the way of side effects and plus a very good effect on my skin. However, due to an oesophageal bleed I had to discontinue it- although it was never certain that the Mycophenolate was the cause of it. I would certainly recommend it over Methotrexate. Unfortunately the rheumatologist says that I can't have Mycophenolate and that my choice is now limited to Methotrexate or Cyclophosphamide. As my skin is now almost back to normal, I am seriously considering discontinuing the Methotrexate as it has such an adverse effect on my quality of life.

Lizzie

#4 Joelf

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Posted 15 October 2010 - 02:57 AM

Hi Peter

Sorry to hear that you've been feeling poorly on Methotrexate. I can't really help with the symptoms you're experiencing as I am taking Azathioprine rather than Methotrexate, but in the beginning I did have a problem with my liver enzymes on that medication which was ultimately solved by reducing the dosage. I don't know whether that could be an option in your case?

As far as the amount of exercise goes I would agree with Amanda that you shouldn't be overdoing it; however the words 'pot', 'kettle' and 'black' come to mind for I am the world's worst when it comes to exercising as I would probably still be trying to go to the gym on my deathbed!! :rolleyes: :lol: One question I didn't ever ask my consultant when I was first diagnosed was "Can I go to the gym?" because I didn't want her to say that I couldn't!! ;) How sad is that?!! :lol: :lol: Perhaps you could just tone the intensity of the exercise down a little?

I do hope you're able to resolve the problem with your medication and that you soon feel better. :)

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#5 debonair susie

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Posted 16 October 2010 - 08:38 AM

Hi Peter,

As with you, I first used Methotrexate in pill form and switched over to injection method. Having been on it for 13 years, I experienced the same as you. It hadn't been suggested to me to take folic acid until several years later, so I experienced nausea too!

Ginger candy can also help with nausea, but I really like the idea of utilizing motion sickness medication to help combat the nausea you speak of.

I hope you are able to conquer the side effects soon, as it is so miserable, having to deal with our daily issues and then adding nausea, etc to the mix makes it no picnic!

Please keep us posted?
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#6 Peter

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Posted 08 December 2010 - 10:28 PM

Hi,

Update on my side effects since changing days and increasing the folic acid combined with injecting after I have eaten the majority of side effects have dissipated. I am unsure if this is due to the changes or a placebo effect. Any case it seems to have worked.

On another note has anyone experienced an increase flare ups during this weather?

Best regards,

Peter

#7 Joelf

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Posted 09 December 2010 - 01:30 AM

Hi Peter

That's very good news that your side effects have dissipated. :emoticons-yes:

I haven't had what I would describe as a flare up, but I do notice that my Raynaud's has been worse this year and my hands tend to ache more in the cold weather.

Perhaps I should take a long holiday in the Bahamas!......(I wish!! ;) :lol: )

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#8 Purr

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Posted 09 December 2010 - 03:28 AM

Hi Peter,

I'm having the same experiences as Joelf now that it is cold. Also, I am experiencing my first finger ulcer. They are literally and figuratively "a pain"! Think I'd better see the doctor.

I'm glad the methotrexate side effects are easing up. I've been on metho since November of '07. I have been doing a 1cc injection since December of 07. It work great for me. I hope it continues to do so.

Stay warm.

Purr :flowers:
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#9 Amanda Thorpe

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Posted 09 December 2010 - 03:41 AM

Hello Peter

Excellent news about the side effects! I can't say cold makes my scleroderma worse but as already said it has a major impact on Raynaud's. If you find it makes your Raynaud's worse have a look at our prevention tips.

Take care and keep posting.
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#10 Robyn Sims

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Posted 09 December 2010 - 06:55 PM

Hi Peter,

This is my first post on the forum.

For many years now I have been a member of Scleroderma Australia and have just joined the ISN support team as a moderator. The training has been a very interesting experience but I am sure well worthwhile. Thanks Amanda for the encouragement.

I thought you would be interested to know that our members here in Australia complain about the cold and it's affects on the body. I have seen photos of friends from Europe and can't image what it would be like to be knee deep in snow.

Rheumatologists I have met from sunny Queensland and further North have commented "Stop sending people with scleroderma to Queensland, they just gradually acclimatize". So it seems to me it is the old answer, layers upon layers upon layers. Of course we also have trouble with air conditioners in summer as well. Putting on clothes, then taking them off, a continual roundabout!!

Glad to hear that your experience with methotrexate seems to have settled.

Robyn Sims

#11 debonair susie

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Posted 16 December 2010 - 07:45 AM

So glad to read that you have found a way to combat the side effects of the MTX, Peter.

Now, if we could only find the perfect weather conditions, we could bottle it and keep it in good supply for those of us who could really use it!
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#12 Sacha

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Posted 04 January 2011 - 10:02 AM

I just wanted to add that when my daughter Katie, who is 8, started on methotrexate 3 months ago the side effects were horrible.

She would be so fatigued that it looked actually painful for her to breathe. She would be so exhausted and painfully white with really dark eyes. She also had terrible ulcers in her mouth and her hair was coming out in small clumps. But after having her folic acid increased these symptoms seem to have got a lot better. She seems to just be really out of sorts for about 3-6 hours now and although horrible to see her going through this, I'm hoping that they will disappear.

She still hates having those injections every week and keeps our district nurse on her toes as she chases her around the house. Well, it's good exercise I suppose; I would be pleased with that physical activity if only for 10 minutes.

#13 Amanda Thorpe

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Posted 05 January 2011 - 08:05 AM

Hello Sacha

Excellent news and thank you for sharing it! Good on Katie for her enthusiastic dislike of injections :emoticons-yes: , I'm 42 and can still be a baby when it comes to needles and I don't really have any reason to be!

Take care and keep posting.
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