Anybody here on methotrexate?

[clubdino]

Saw this article about methotrexate giving symptom relief to MPN patients. Just wondering if anybody has any experience with this?

ajmc.com/newsroom/40-year-o...

[piggie50]

Hi clubdino,

Like all drugs, what works for some does not necessarily work for all.

I had to start Methotrexate back in October for my RA. 20 mg per week and folic acid on the days I don’t take the methotrexate. I stopped Hydroxicarbamide at the same time on my heams instruction. Within three weeks my platelets had risen from 300 to 900. I had to re start the Hydroxicarbamide and now take both drugs with very careful monitoring. ( fortnightly blood tests)

So, to sum up, for me, methotrexate has no impact on my PV unfortunately.

Always worth a try, Steve, Sydney seems to be having some success with it.

Best wishes

Judy

[clubdino in reply to piggie50]

Hello. Thanks for your reply. I'm not looking for an impact on my numbers but only help for my pain. Do you feel it worked for your symptoms?

[piggie50 in reply to clubdino]

Luckily I don’t t have many symptoms from the PV, apart from fatigue and occasional itchyness. It makes no difference to these symptoms. I suffer much more from RA than PV, which it is helping as it is a DMARD (disease modifying anti rheumatic drug).

If you are just looking for pain relief then I would say methotrexate is not the drug for you.

[clubdino in reply to piggie50]

So the methotrexate does help with your pain from RA. I was concerned I had an autoimmune disease due to the nature of my pain. It feels like I have the flu permanently. Muscle, bone, and joint pain. Hurts to walk. But, I tested negative for the auto-immune diseases.

[piggie50 in reply to clubdino]

It’s hard to explain as it’s not a pain killer, it is reducing the swelling in the joints which in itself is helping with the pain. I still take paracetamol or codeine for pain when required.

Methotrexate is taken once per week in one dose.

It’s efficacy builds over 6 to 12 months. I was on steroids for 12 weeks previous to starting the methotrexate.

[clubdino in reply to piggie50]

Darn. It doesn't sound like it's going to help my pain. Guess I'll have to take the other med the doctor wanted me to try...the one that causes weight gain. 😖

[piggie50 in reply to clubdino]

I guess it depends what is causing your pain? Are you on any other drugs for your MPN?

[clubdino in reply to piggie50]

I'm not on any meds for my MPN. I just read another article that stated methotrexate can help with bone pain associated with MPNs so I think I will try it just to see what happens. It also said it can help with fatigue and fevers associated with MPNs and those are two other symptoms I struggle with. Fatigue has been a regular part of my life for so long that I can't imagine life without it anymore.

[piggie50 in reply to clubdino]

How did you get on at your appointment yesterday? I’ll be very interested in how you go.

[clubdino in reply to piggie50]

Hello. Thanks for asking. My doctor wasn't comfortable prescribing the Methotrexate. She said I would have to see a rheumatologist for that. She said Methotrexate needs a lot of following with bloodwork and eye appointments. I'm not sure how it effects the eyes but that did sound scary. So we are trying Gabapentin instead. Have a Happy New Year!

[piggie50 in reply to clubdino]

I hope this works for you. RA can affect the eyes, I’m not aware of Methotrexate affecting them although it can affect the lungs. I had to have a chest x ray before commencing, Yes, it’s a great breakthrough for MPN’s in that it is a cheaper drug, but it’s toxicity should not be overlooked. In my opinion it is just as toxic as Hydroxicarbamide.

Happy New Year to you too. Let’s hope for a better one for all of us.

[socrates_8]

Hey Dino...

Belated Xmas wishes & Happy New Year...

Yes! I am taking both Ruxolitinib & Methotrexate (MTX), as the Ruxolitinib is struggling to keep my Platelets under control.

However, thus far the Trial for MTX has had a measure of success...

Please see the Post on MATEs Aussie MPN Forum. Here's the Link:

mpn-mate.com/forum/viewtopi...

Best wishes buddy...

Steve

[clubdino in reply to socrates_8]

Hello Steve...Happy Holidays to you too. I skimmed over your post on your website very briefly...I plan on reading it more thoroughly in an hour or two when I can dedicate my full attention to it. I'm not hoping to lower my numbers as my numbers aren't very high even without treatment. I am more looking for pain relief. I've been on Cymbalta for my pain for about 7 months now but I have to discontinue it as it is making me lose my hair and it just isn't working very well for me anymore. I have a doctors appt Monday and I think I'm going to ask to try the methotrexate. I did see where you said the methotrexate was making you tired and that scares me as I am fatigued enough as it is. Thanks for the link and I can't wait to read more about your experience.

[clubdino in reply to clubdino]

Ahhh, saw that you are anemic so that may be contributing to your fatigue. I will say one thing that concerns me is the link between methotrexate and lymphoma.

[Bluetop]

From the forum in Sheffield in December, I understand that the team at Sheffield are trying to raise the funding for a full medical trial of this, the initial trial being small scale. Perhaps Dr Zeidler's slide will become available shortly.

[clubdino in reply to Bluetop]

Thanks for the info. I'm about to do my own medical trial, lol, as long as my doctor will prescribe it for me. I will be sure to post my results here.

[mhos61 in reply to clubdino]

It’s worth a shot in my opinion, as long as you’re monitored carefully with blood tests.

Methotrexate is the drug of choice for many autoimmune conditions ie, Lupus, RA, Chrohns etc. It suppresses the inflammatory process in these conditions. If this is what is driving your symptom burden, it may well help.

[clubdino in reply to mhos61]

Hi Mary. Right...I saw it helps with the cytokines...which I'm assuming is what causes my pain. Monday can't get here quick enough. I want to start it NOW, lol.

[mhos61 in reply to clubdino]

sheffield.ac.uk/news/nr/art...

The above is another interesting article. I’ve posted it before, so you may well have seen it. I hope that if you consider using methotrexate that it helps your symptom burden in some way...

Keep us updated

[clubdino in reply to mhos61]

Thanks for the link...I hadn't seen that article before. I will definitely let you know what happens.

[Bluetop in reply to clubdino]

Good luck with it! Let us know how you go on.