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Just got done with seeing my Sclero specialist


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#1 greypilgrim256

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Posted 28 October 2014 - 05:28 AM

Well, after meeting with a sclero specialist I have been given a prescription for 7.5mg of Methotrexate a week.

Can anyone give me advice or their experience with this drug?. I have very little skin involvement (limited to fingers/hands), have significant GI involvement, and substantial joint pain/arthritis symptoms which is why I think they are going with the Methotrexate route.

Will be getting a full PFT soon to see if lung are affected.

Anyone have any experience with Methotrexate? I have read that it might be best to take it on a weekend or at night because a side effect is fatigue, nausea, etc.

 

My head is still spinning from all of this. 



#2 Joelf

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Posted 28 October 2014 - 09:26 AM

Hi Greypilgrim,

 

Thanks for the update regarding your appointment with your Sclero specialist.

 

I can't advise you from personal experience regarding Methotrexate, as I've never taken this drug (my consultant prescribed Azathioprine) however, I know many of our members have taken it with varying amounts of success.

 

I've included a link to our medical page on Methotrexate and also links to a couple of threads regarding it Methotrexate and Methotrexate - why am I on it?

 

I hope that they will give you some more information and I'm sure we'll have other members chiming in with some first hand advice.

 

I do sympathise; my head was spinning too, when I was first diagnosed! ;) :o

 

Kind regards,


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#3 Buttons

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Posted 28 October 2014 - 10:15 AM

Hi Greypilgrim,

 

I've been taking MTX for about 2 years and have found it to have helped me, I had lots of joint pain and a small amount of skin involvement to my hands & feet along with some GI issues & Raynauds. I started with 7.5 and gradually my dose was increased, I have blood tests done every month to check everything is OK. I take mine on a Thursday evening and at first it used to make me feel very queasy but that did pass as my body got used to the drug, I was told to sip a cola drink which surprisingly did help the queasiness but I don't bother any more. I do think its important to make sure you do take it at exactly the same time & of course same day each week because if I forget the time and take it later I find I do feel queasy again.

 

Buttons



#4 Amanda Thorpe

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Posted 28 October 2014 - 02:53 PM

Hello Greypilgrim

 

Over the years I have had about 3 or 4 tries at taking methotrexate and it never worked for me. First time round it initially made me tired and sick but then after a few weeks this settled down and all was well until about 10 months in when the headaches started so the methotrexate was stopped. I had another go at a lower dose as I had got up to 15mg but it was no good.

 

Most recently I have just tried it for 4 weeks and again ditched it. I was on 7.5mg and took it on a Tuesday to then spend all Wednesday asleep, then the headaches. My husband was keen for me to come off of it as I was so tired and dopey, I was anxious to come off of it too! Quality, quality, quality and you don't have that if you're medicated out of existence.

 

Bear in mind that you can have methotrexate by injection, you administer it yourself injecting it subcutaneously, if nausea is a real problem and also bear in mind that side effects can wear off after a few weeks as well as take a few weeks to appear. I hope it works well for you but make sure you have your blood tests!

 

Take care.


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#5 greypilgrim256

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Posted 29 October 2014 - 06:11 AM

I do have blood work scheduled every month for 6 months to monitor it.  I guess we'll just see what happens when I take it this weekend.  Thanks for the input.



#6 miocean

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Posted 29 October 2014 - 02:10 PM

Good luck with the methotextrate. I hope you have good results with very little side effects. 

 

miocean


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#7 Sweet

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Posted 30 October 2014 - 07:21 AM

This is a start! There are many on MTX, and of course everyone is different in how it affects as far as how much it helps or what side effects you will have if any. So please keep us posted!


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#8 greypilgrim256

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Posted 31 October 2014 - 07:38 AM

Oh also, my Sclero specialist was none to pleased about the long dose of Prednisone I have been on.  We are going to start tapering it when I start the methotrexate.  I told her I was just following my other rheumatologist's orders, who I guess wasn't aware of the dangers of taking Prednisone with Sclero.  He diagnosed me with MCTD, but now we think that was a wrong diagnosis because of my ANA pattern.  Now I am worried that I have been doing damage to my kidneys.  

 

I have been testing my urine at home with strips for protein and so far it seems okay.  She said to check my blood pressure often because high blood pressure will damage kidneys as well.  Is there specific symptoms that I should be on the look out for while I am tapering off the prednisone?  

 

Can anyone recommend where I can buy an affordable machine to blood pressure?  Rite Aid, Target?  

 

Thanks.



#9 miocean

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Posted 01 November 2014 - 02:27 AM

I can tell you what my symptoms preceding renal failure were. My feet were very swollen. My blood pressure skyrocketed. My urine was very foamy. I felt very sick.

Any of the drug stores will have blood pressure monitors but I got mine at Costco. Foamy urine can be caused by many things, sometimes it is from what was used to clean the toilet. I still get a little freaked out if I see foamy urine but know there can be many causes and I get tested a lot so I know I am not in rejection.

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#10 greypilgrim256

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Posted 17 November 2014 - 03:43 PM

Well this is the 3rd week of Methotrexate.  It is not a fun drug to be on.  Nothing like a cold rainy monday morning after MTX.   I may ask if I can be switched to Cellcept.  As far as the renal crisis goes I have been testing my urine at home with those dipsticks and sometimes they are coming up showing protein in urine.  Pee is usually bubbly too.  I am going for a 24 hour urine test this week.  My GFR is 112, and my serum levels were all good last blood work, but the fact that the home dispsticks are showing up with protein is not reassuring.  I know the Prednisone could do this, and am currently in the process of tapering it, but can MTX also cause kidney issues? 

 

I know Cellcept is usually prescribed if lung damage or kidney damage is present.  I will have to confer with sclero specialist. 



#11 Joelf

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Posted 18 November 2014 - 12:00 AM

Hi Greypilgrim,

 

I can see why you would be concerned about your kidneys and I understand that one of the less common side effects of MTX can be kidney toxicity particularly with high-doses of the drug.

 

If the symptoms are persisting I would suggest you go back to your Scleroderma specialist for her advice.

 

Kind regards,


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#12 greypilgrim256

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Posted 18 November 2014 - 09:56 AM

Thanks Joelf.  In the 1st piece of good news getting my diagnosis, I finally got my PFT results back and did very well on my FVC and DLCO!  With any luck it will stay that way. 



#13 Joelf

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Posted 18 November 2014 - 12:30 PM

I'm so pleased to hear that, Greypilgrim!! :emoticons-yes:

 

I remember how thrilled I was with my FVC and DLCO results after the first 6 monthly treatments I received, as there was such an improvement.

 

Here's to your Pulmonary results; may they continue the same way! :emoticons-clap:


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#14 miocean

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Posted 19 November 2014 - 02:37 AM

Great news on your lung function tests! 

 

miocean


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#15 greypilgrim256

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Posted 19 November 2014 - 09:51 AM

Thank you both.  I still think I am going to ask to be put on Cellcept as it is supposedly a much easier drug to tolerate with a much better success rate with scleroderma.  I have read dozens of personal testimonies and many clinical studies about Cellcept (mycophenalte mofetil) drastically reducing skin thickness and being much better for kidneys.  All I know is that the MTX makes me feel pretty run down. 

 

I know that there is a great controversy surrounding antibiotic treatment in the sclero community, but I did go see an antibiotic doctor.  I am still very intrigued by the idea of a mild medication like antibiotics being able to help with this illness.  I'm not sure I will go that route, but it is an option to explore.