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methotrexate

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11 years 1 month ago #46797 by Paula399
methotrexate was created by Paula399
Would like to know if anyone has been treated with methotrexate for their ITP? And if so has it worked for them?

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11 years 1 month ago #46807 by Ann
Replied by Ann on topic methotrexate
Methotrexate is not one of the usual treatments for ITP. What else have you tried?

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11 years 1 month ago #46808 by juliannesmom
Replied by juliannesmom on topic methotrexate
Methotrexate is linked to a high risk of infections and cancer. You should really read as much as you can about it before you take it. I have never heard of anyone here using it to treat ITP, and I wouldn't think a hematologist would use it for that. It is used for rheumatoid arthritis and other crippling autoimmune disorders, and it has its place, but it really carries substantial risks, more than the average ITP case probably warrants. (Mind you, I've never been an ITP patient, just a mom of one.)
Norma
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11 years 1 month ago #46810 by Paula399
Replied by Paula399 on topic methotrexate
I already been treated with prednisone, decacron, IGV, now on the vplate once as needed, and taking methotrexate 4pills once a week, I been in treatment since October 2014 and haven't been able to keep my platelets at a steady and safe level.

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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11 years 1 month ago #46812 by Sandi
Replied by Sandi on topic methotrexate
Paula:

Methotrexate is not used for ITP. I've used it for Lupus and it has caused permanent damage to my lungs. I wish I'd never used it and I would never have used it for ITP.
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  • midwest6708
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  • ~ Janet ~ Diagnosed Sept. 2008
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11 years 1 month ago - 11 years 1 month ago #46821 by midwest6708
Replied by midwest6708 on topic methotrexate

Paula399 wrote: I... now on the vplate once as needed...

This caught my eye. What does that mean? Are you talking about NPlate?
NPlate isn't designed to be taken "as needed". It's a once a week treatment, unless a remission is eventually achieved. If your doctor is giving it to you only sporadically, it's an improper way to use it.

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11 years 1 month ago #46824 by milly
Replied by milly on topic methotrexate
I am with Sandi on this one, Sandi and I shared our methotrexate journey on here. Was on it for about 10 months, not for ITP though, long story but turns out it was a misdiagnosed condition.
The side effects are not to be taken lightly, my platelet count did increase while I was on it, but I also developed a heart mumer that wasn't there before I took it.

Would I take it for ITP...... No never,
There is no practice run in life.
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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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11 years 1 month ago #46825 by Sandi
Replied by Sandi on topic methotrexate
Good catch, Janet. I didn't see that.

N-Plate should be sued weekly and counts should be maintained around 50k.
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11 years 1 month ago - 11 years 1 month ago #46834 by Paula399
Replied by Paula399 on topic methotrexate
My doctor said if my platelet levels are high he dosen't want to give me the shot because of the risk of blood clogs so he won't give it to me. So he give it to me one week and skips a week then gives it to me again.

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11 years 1 month ago #46835 by Paula399
Replied by Paula399 on topic methotrexate
When I took my first shot of Nplate my platelets went up to 189. And my doctor didn't what to give me another shot because he said I would be at risk for blood clogs .

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11 years 1 month ago #46836 by Paula399
Replied by Paula399 on topic methotrexate
My first shot of Nplate made my platelets go to 189k and the doctor didn't want to give me another shot he said my plates were high and I could be at risk for blood clogs. So what happen when your platelets get really high is the doctor suppose to still give you the shot.

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11 years 1 month ago #46837 by Paula399
Replied by Paula399 on topic methotrexate
What happens if your platelets get really high is the doctor still suppose to give you the shot? My doctors didn't want to give to me the shot cause my platelets were at 189k and he said I was risk of bloodcclogs

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  • weirdjack
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11 years 1 month ago - 11 years 1 month ago #46842 by weirdjack
Replied by weirdjack on topic methotrexate

N-Plate should be sued weekly and counts should be maintained around 50k.


Well that is a little harsh...sued weekly? :)
Typos from the ID.


.

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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11 years 1 month ago #46843 by Sandi
Replied by Sandi on topic methotrexate
Paula - in that case, you are right. If counts are high, the shot can be skipped that week due to a risk of blood clots. However, it's possible that the dose needs to be lowered to obtain a stable count. If you are getting a response from N-Plate, then why even use Methotrexate?

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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11 years 1 month ago #46844 by Sandi
Replied by Sandi on topic methotrexate
Ha ha, Jack! Yes, I made a typo I see! :woohoo:

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11 years 1 month ago #46873 by juliannesmom
Replied by juliannesmom on topic methotrexate
Is your doctor a hematologist?
Norma

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11 years 1 month ago #46900 by Paula399
Replied by Paula399 on topic methotrexate
Yes he is hematologist, I was also have sjogrens so I believe the methotrexate is to treat that. :sick:

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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11 years 1 month ago #46902 by Sandi
Replied by Sandi on topic methotrexate
That makes more sense but a Rheumatologist should treat that.

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11 years 1 month ago #46907 by Paula399
Replied by Paula399 on topic methotrexate
He looked at my medical history and seen I was diagnosed with sjogrens about two years age since I didn't take the meds that were prescribe to me he thinks that's maybe this is what is making my platelets go out of wack so maybe if we treat it my platelets would stabilize, what do you think? I am only trying this medication for a short time to see what happens hopefully my platelets stabilize.

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11 years 1 month ago - 11 years 1 month ago #46908 by Ann
Replied by Ann on topic methotrexate
It is true that if the ITP is secondary to something else like Sjogrens then treating the primary disorder, the Sjogrens, could help the ITP. However, if it were me I would want to be treated by a Sjogrens specialist rather than the ITP specialist. Methotrexate is usually only used when nothing else helps Sjogrens so to start there seems odd.

My ITP is also secondary to something else, but in my case it goes along with an immune deficiency disorder so I see an immunologist who treats that and the haematologist keeps a watch on platelet count. For me, it's important that I see the right specialist for the right disorder.
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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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11 years 1 month ago #46911 by Sandi
Replied by Sandi on topic methotrexate
I agree with Ann 100%. I would not feel comfortable with my Hemo treating a Rheumatological disorder. I have seen Methotrexate handed out before here by the wrong doctor and in both cases, it was not what should have been given. Does your Rheumatologist know about it?
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11 years 1 month ago #46919 by Paula399
Replied by Paula399 on topic methotrexate
I want to thank you two for your advice, I never seen it that way, but I see you two really know your stuff, I am new to this and all these medications but I am learning, I do want to educate myself on the disease that I have so I know what to expect. And what I should be taking when it comes to my medication.
Thank you again!
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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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11 years 1 month ago #46924 by Sandi
Replied by Sandi on topic methotrexate
Paula:

Just check with your Rheumatologist, okay? It may well be that he would agree with Methotrexate but if it is the wrong treatment, it could be causing you harm. That is a heavy duty drug and it is real chemotherapy. Death is one of the listed side effects.

Did he also prescribe folic acid as well? That should always be taken with Methotrexate. I worry when I see that drug being used callously when there may be a better way to treat.

Please let us know.
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10 years 10 months ago #48765 by Paula399
Replied by Paula399 on topic methotrexate
Hi Sandi I am back haven't been on for awhile my itp has been like a roller coaster ride, methotrexate I was on two months ago made me real sick had to be hospitalized, had also been on the Nplate shot since December of last year just stop taking it cause it stop working for me, my platelets just crashed on May 15 had to be hospitalized for four days got two treatments of ivig and put back on 70 mg of prednisone my platelets were at 16 doctor wants to put me promacta 50 mg but I can't afford the copayment of $1750.00 which I don't qualify for assistance because I am over the guide lines. And I was wondering maybe you could give me some advice since you are so knowledgeable in this field, I would appreciate any advise you can give me . Thank you Paula.

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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10 years 10 months ago #48769 by Sandi
Replied by Sandi on topic methotrexate
Paula:

I don't know enough about your specific events to suggest anything. Was N-Plate dosed properly? What happened prior to the crash? Sometimes, counts will drop if a dose is skipped or the dose is too low and if that happens, the dose should be raised for a few weeks, not stopped.

My suggestions would be to try a second opinion Hemo. Start fresh and see what someone else suggests.
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10 years 10 months ago #48770 by Paula399
Replied by Paula399 on topic methotrexate
The shots just didn't work for me my dose of Nplate was raised about three weeks ago and my platelets just kept dropping so I had to be hospitalized with a platelet count of 3 and this was right after the shot my platelets dropped. But thank you Sandi I appreciate you getting back to me.

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10 years 10 months ago - 10 years 10 months ago #48771 by Ann
Replied by Ann on topic methotrexate
Unless you went through the full ten doses of Nplate and then stayed on that dose for a few weeks, then I'd try it again. Most people just don't keep at it for long enough. I kept on dropping on it but with highering and lowering the dose often, and being patient I eventually got into a remission using it.

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10 years 10 months ago #48935 by Winnifred
Replied by Winnifred on topic methotrexate
Here's a link to a pdf all about Methotrexate:

www.arthritis.ca/document.doc?id=598

This drug when given for the right reasons can help but as other's have said make sure it is the right doctor! If you are getting the injections you must change the injection site each time. Some doctors prescribe vitamin D tablets to take for 2 days when your getting the injection. Can't remember if it is day before and day of or day of and day after!

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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10 years 10 months ago #48937 by Sandi
Replied by Sandi on topic methotrexate
I had to take folate while using Methotrexate.

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