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Methotrexate-why am I on it?


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#1 lou56

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Posted 02 April 2011 - 09:46 PM

Hi all

I am a new member, and was diagnosed with systemic sclerodera in 2004. My recent urine test and bloods revealed protein, (kidney involvement) and my echocardiogram showed one side of my heart contained fluid - and was larger than the other side. Also both of my hands and feet were xrayed and both hands showed sclerosis - my left hand has been swollen for 6 months - and my rheumatologist took a photo; he was really amazed.

After asking about my blood and urine test; all my doctor said was he wasn't happy at all about the results and didn't think my hand would get better.

I have been put on Methotrexate to be taken once a week for six months, and monthly blood tests - is the methotrexate used as an immunosuppressant, the same as Plaquenil? Or is the Methotrexate being given to me for my heart and kidneys - or just for the swelling and inflammation to my hand?

I am now on 20 medications per day, plus the methotrexate; this really worries me.
Also my doctor said if the methotrexate didn't work, he would try something else?

Is there someone out there with something similar happening to them?

Cheers
Lou :thank-you:

#2 Robyn Sims

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Posted 03 April 2011 - 01:43 AM

Hi Lou,

I can understand why you are confused about why you have been put on methotrexate when your doctor was not happy with the results of your urine and blood tests. However after doing a little search on this site I came up with the following:

"Methotrexate blocks several enzymes involved in the immune system. This affects actively growing cells such as those that are in the skin, blood, gastrointestinal tissues (i.e., stomach and intestines), and the immune system. However, it is not entirely clear how methotrexate decreases the severity of arthritis".

Yes, methotrexate is in immunosuppressant. It is very commonly used to treat scleroderma and I sympathise with you regarding the amount of drugs you are taking at the moment. I am pleased to hear that your doctor is closely monitoring you as well.

I know there will be others who will also post. I am confident that the methotrexate is not for your heart and kidneys, bearing in mind that I am no doctor, just someone who has a keen interest in the treatment of scleroderma.

I certainly hope that in six months time the swelling will have improved and you will keep posting to let us know how you are getting on.

Don't forget when you visit your specialist to take notes with you as we often forget to ask questions. The visit can be confusing and when you get home you wish you had of asked about this, that and the other. So annoying. Having another person with you can also be a great help in recalling what your doctor has actually said. Sometimes we hear the bad words and not the good ones!

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#3 Joelf

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Posted 03 April 2011 - 08:29 AM

Hi Lou,

Sorry to hear that you've got fresh concerns about your medication and in particular Methotrexate.

Robyn has given you some excellent advice regarding the Methotrexate and also regarding your specialist's visit. I have never taken either that particular immune suppressant (I'm on Azathioprine) or Plaquenil, so I'm afraid that I can't advise you from my own experience.

However, I have included links to Methotrexate and another Methotrexate link and also to Plaquenil which I hope you'll find informative and helpful.

I know that quite a few of our other members have experience of both Methotrexate and Plaquenil and I'm sure they will be along to offer you more personal advice.

Do please keep posting and let us know how you are faring.

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#4 Amanda Thorpe

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Posted 03 April 2011 - 11:37 AM

Hello Lou

I am on methotrexate to suppress my immune system, I do think I feel better on it, I certainly feel more tired if I miss a dose. With scleroderma rhematologists tend to take a two pronged attack by suppressing the immune system and treating symptoms which can result in many, many medications!

Take care and keep posting.
Amanda Thorpe
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#5 patvp1

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Posted 03 April 2011 - 09:36 PM

Decided to check the forum..as just got back from seeing my general practitioner, as I am unable to see specialist until the 4th July my general practitioner has put me on Methoblastin (10mg) once a week, Plaquenil (200mg) twice a day and folic acid, three to be taken today before I start the Methoblastin then one per day for three days after the Methoblastin..am feeling a little apprehensive about the whole thing :( but will give it a try and see what the outcome is..anything to relieve symptoms..silly to say..but I am glad someone else is in the same boat :emoticon-dont-know:

Meanwhile all the best to everyone :emoticons-group-hug: take care

Patvp

#6 lou56

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Posted 04 April 2011 - 01:04 AM

Hi Robyn
Thanks for your reply it has eased my mind some. When I go to my specialist I usually go by my self; my husband still works full time, and all my family live 7 hours away. My husband did go with me a few times , when he was really worried about me, or couldn't get there by myself.
I am lucky to have him; he has taken over most of the housework. It is very frustrating that I can't do all the things I used to do. You have to work around what you can and can't do and make the best of what you can do. I had a bad time and could hardly walk and ended up having physio at the hospital, and he suggested it would be good for me to join the Arthritis group so I could go to the hydrotherapy pool; well I joined and now go twice a week, it does give me a lot a relief, and there a a few ladies that have lupus, and four that have scleroderma. I have Osteoarthritis and Fibromyalga as well as the scleroderma; it's a nice group of ladies, and it gets me out of the house. I see my specialist again in June so time will tell with the methotrexate.
Thank you for your advice
Regards
Lou

#7 lou56

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Posted 04 April 2011 - 01:12 AM

Hi Jo
Thanks for the advice. I will look at the links. Sometimes things just overwhelm me, with so much medication.
I have noticed that I am not as tired as I used to be; it could be the methotrexate? I had to have a rest/sleep most days of the week, now it's only a couple of times. I will see my specialist again in June, so I hope that the medication will work. One year I was put on pain medication patches for my pain, it did work; but then you have to come off it and the pain comes back.
I do hope that this medication works; at least I dont feel sick on it.
Thanks again
Regards
Lou

#8 lou56

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Posted 04 April 2011 - 01:18 AM

Hi Amanda
I am glad to hear that I am not alone, taking all these drugs.
I don't feel as tired as I used to be on the methotrexate. I take my dose every Tuesday night, and it works until Sunday, so those two days I'm in pain.
The specialist did up the dose, so maybe he will again? He did say if this doesn't work he would take me off it and try something else, so time will tell
I see the rheumatologist again in June, so I hope this works.
Thanks
Regards
Lou

#9 lou56

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Posted 04 April 2011 - 01:22 AM

Hi Pat
All the best to you too. I am glad I'm not alone; but it does get a bit overwhelming sometimes.
Hope your medication works for you.
Regards
Lou :thank-you:

#10 Joelf

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Posted 04 April 2011 - 01:45 PM

Hi Lou,

I'm very pleased to hear that you're feeling a little better and less tired and that going to the hydrotherapy pool has helped you.

I do hope that you continue to improve; a combination of successful medication and meeting other sufferers can certainly help and make you feel much less isolated.

Do let us know how you get on with your appointment in June, won't you?

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#11 Amanda Thorpe

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Posted 04 April 2011 - 04:24 PM

Glad to hear it Lou, it's good to know that there are other drugs to try if methotrexate proves unsuccessful but it sounds so far so good.

Take care and keep posting.
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#12 patvp1

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Posted 04 April 2011 - 06:06 PM

Hi all - Must admit after the read out supplied by the chemist I was more than a little apprehensive especially when I read "may also be called a chemotherapy medicine"..bit scary :blink: but I suppose they print the WORST things that can happen LOL.
By the by - does anyone else have cramping of tendons and muscles, my general practitioner says it is normal ? Sometimes in the middle of the night it is unbearable..weird I know !! Drove for a couple of hours yesterday and last night paid for it especially the leg I use on the accelerator Aaaagh.

As always..Pat

#13 Amanda Thorpe

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Posted 05 April 2011 - 03:42 PM

Hello Pat

I suffer with cramp in my hands and feet and was told it was because of Raynaud's so keeping them warm helps. When I get cramp in the toe(s) it quickly spreads to all of them and my way of dealing with it is to immobilise all the toes so they can't cramp up. I do this by putting thick wadges of rolled up tissue paper between every toe, it's not very comfortable because it takes a lot of rolled up tissue paper to prevent movement but it's less painful than the cramp and it works for me.

Cramp can be mighty fierce and painful!

Take care.
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#14 uknlv18

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Posted 05 April 2011 - 04:07 PM

Hi Pat,

I get cramps all over, feet, toes, hands, fingers, torso, abdomen, thighs, calves, and the weirdest place in my chin area! Was told it was caused by a Vit. D difficiency and am on supplements now, which help a bit. They are not every time I move anymore but I still get them, if I get cold then it is worse. Lately I have been getting bad cramps in my knees, and it makes it difficult to walk. I try to drink plenty of liquids and also eat bananas as that seems to help as well.

Jean

#15 lizzie

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Posted 06 April 2011 - 01:06 PM

Hi Pat, I can certainly relate to the cramps, get them often in feet, mainly at night but also sometimes in the daytime. I asked the rheumatologist - he said was definitely a sclero thing, but said he was reluctant to give medication ( I.e quinine) to treat it because of side effects.

Lizzie

#16 Amanda Thorpe

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Posted 06 April 2011 - 01:23 PM

Oh I forgot about the cramp I get in my calves, knees, abdomen and back! Mnd you the foot cramp is the worst because it lasts the longest.

Take care.
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#17 judyt

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Posted 06 April 2011 - 04:34 PM

Hello to all you cramp sufferers,

Has anybody tried Magnesium? Years ago my general practitioner said ailments like 'restless legs' and cramp can be caused by shortage of magnesium in the diet. My son and husband both tried it and it certainly helps. Mind you, neither of them have Sclero. but as we know, not everything is to do with that - we can get 'normal' problems too.

Ian buys it from a health food shop, it comes as a homeopathic type tablet and he takes them every day. I think it is Magnesium Sulphate, or maybe it is Magnesium Phosphate. Sorry, he is not home at the moment to ask.

I don't think it is just a NZ thing, as some deficiencies are. For instance we have poor dental health here because there is very little naturally occurring fluoride here whereas in the UK you have good teeth because of the fluoride.

Farm animals here get some diseases due to lack of zinc in the soil - and so it goes on for both man and beast it seems.

Warm hugs to you all - gentle ones so as not to cause more cramps!!

Judyt

#18 Shelley Ensz

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Posted 06 April 2011 - 07:44 PM

Hi Judy,

My doctor also prescribed magnesium for times when I am plagued with muscle spasms, tics and charley horses. It really does help me, but most particularly to take long term and not only when the problem arises.

However, none of us with scleroderma should ever self-prescribe any sort of vitamins or minerals, we all need to consult our doctors for all supplements since our condition is so complex and things can interact with our other meds, or perhaps even the supplement is not the right approach for us. I've also been prescribed other things, like muscle relaxants but the side effects (worsened drowsiness and fatigue) were too much for me to handle long term.
Warm Hugs,

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#19 patvp1

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Posted 17 April 2011 - 08:26 PM

Hi all - And thanks for all advice re cramps etc.

Am now into second week of medication (methoblastin and Plaquenil) and so far so good :P I know I have a long way to go !! but already seem to be getting my energy back or maybe it is wishful thinking on my part :VeryHappy:
All the best and a very Happy Holidays to one and all :emoticons-line-dance:

As always..Patvp

#20 Robyn Sims

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Posted 17 April 2011 - 11:54 PM

Hi Pat,
Glad to hear that all is going well so far. Sometimes the fact that you know that others are listening and really care can make the world of difference too.

Hope the improvement continues. :emoticons-group-hug: