Methotrexate

[Ninan]

@minkeygirl

Yes, doxy makes it a lot worse but I think it's because it gives me energy. Stuff that give me energy about 24 hours after taking them seem to modulate my immune system in some way. It works for a few days or weeks and then I have to raise the dose. And it makes my psoriasis worse. Just as rituximab did for the responders in the Norweigan study, who had pre existing psoriasis. And as Remicade does for a guy I know who gets better from it. LDN and doxycycline does this for me. And allergies but that's a bit different. Anyway, if you don't get energy from doxy then maybe it don't make your psoriasis worse either. At least not if you're like me.

I'm starting Methotrexate on Monday. You only take it once a week. I'm getting my labs done one week after the first dose and if they're ok I'll keep raising it with 2,5 mg every week until I reach 7,5 mg.

As if never having infections was normal. I didn't even get them from my BF when we lived together on 40 m2. Seven years without a cold is hardly normal. My dad's the same, he never gets viruses. He has Bechterews disease and psoriasis. Our diseases have a lot in common.

What immune modulators are you on?

 

[minkeygirl]

@Ninan I don't get amped from the doxy. I stopped the LDN since I don't think I was getting much benefit from it. From my waist down and my scalp is just a mess so I want to see if being off helps. My nails too are bad. Mine usually flairs with stress, but only in my nails. So something? Maybe the immune mods?

I was reading some RA forums and they only take 2.5 2x/week. If I do this I most likely will have to do it on my own. My NP will support me and run labs so.... What kind of doc is giving it to you? How often will you get blood work once you start titrating up?

I get sick once every few years with a cold or something. That's it. I don't know how important it is to get the vaccine challenge before I start the metho since treatment I think would be different. I need to contact the doc again and get the labs so I"ll have them with me when I go. I probably need regular labs done in October.

My dad had psoriasis really bad. Huge giant patches all over. I have small little spots all over my legs. Someone asked me once if it was flea bites.

I just started Arbidol. I'll do that M-F for a month, then go back to Isoprinosine. Do that for a month and switch to Cycloferon, then back to Arbidol. Something is helping me. Whether it's those or the Famvir or both I don't know but I was on them before the Famvir and I was feeling better.

Now to figure out my brain fog. That's what the doxy is for. If I could get a handle on that I'd feel much better.

 

[Ninan]

My doctor is a neurologist. Blood works should be done.... let me get the list. Once before treatment. They've also X-rayed my lungs to make sure they were ok. Then I will take 2,5 mg and do blood works one week after that. I'll have to wait and see if it comes out ok. If it does I can start the treatment. Then they do blood works every other week for three months. After that it's once a month. I think maybe if you're on it for a long time they start doing them every three months, but I'm not sure.

I'm on Famvir too but I think the dose I'm taking is too small. I think it gives me a tiny bit more psoriasis, though, and that usually comes with energy.

 

[minkeygirl]

That's interesting that a neurologist is giving it to you.

That's a lot of blood work, and maybe too hard for me since I don't drive. Plus I'd have to pay for the testing myself since I just starting seeing a new PCP who has no clue what I'm doing. I haven't tested the waters with him yet to see about testing for viruses etc to see how I'm doing with my protocol.

How much Famvir are you on? I'm taking 250 2x/day. I'm wondering about taking more but I'd like to find some information to give my doc so she'll be ok with it. She had to look into Famvir when I asked for it.

Keep me posted on how it works for you. I'd love to knock out my CMV and psoriasis.

 

[Ema]

My doctor is a neurologist. Blood works should be done.... let me get the list. Once before treatment. They've also X-rayed my lungs to make sure they were ok. Then I will take 2,5 mg and do blood works one week after that. I'll have to wait and see if it comes out ok. If it does I can start the treatment. Then they do blood works every other week for three months. After that it's once a month. I think maybe if you're on it for a long time they start doing them every three months, but I'm not sure.

I'd like to know what blood tests you're having done...this is really interesting to me.

 

[Ninan]

I'd like to know what blood tests you're having done...this is really interesting to me.

Check out this "Methotrexate monitoring form". It's figure no 1.

 

[minkeygirl]

I'm pretty sure the Rheumy I saw said a test a month after starting then if that was ok every 3 months. She said nothing about a chest X-ray.

 

[Ninan]

I'm pretty sure the Rheumy I saw said a test a month after starting then if that was ok every 3 months. She said nothing about a chest X-ray.

I guess there are different opinions on what is needed.

 

[Ninan]

First MTX dose taken. No effect yet. It's been hours! My doctor friend says I'm a bit impatient. (I wish. I'm sick and tired of being a patient.)

 

[vli]

First MTX dose taken. No effect yet. It's been hours! My doctor friend says I'm a bit impatient. (I wish. I'm sick and tired of being a patient.)

Thank you so much for updating this thread about your progress, Ninan. I certainly appreciate it.

 

[minkeygirl]

@Ninan Are you cured yet? I'm like you. I want immediate gratification.

Can I ask how you got a Neuro to RX this for you vs. a Rheumy?

 

[Ninan]

@Ninan Are you cured yet? I'm like you. I want immediate gratification.

Can I ask how you got a Neuro to RX this for you vs. a Rheumy?

Sure, but it's pure luck. She is quite up to date on what's going on in Norway etc. But I guess having a lot of autoimmune diseases in my family helps. And having psoriasis myself. I've been trying to get to see a rheumathologist several times with no success. Hospitals generally don't accept ME/CFS patients here.

Nope, no effect yet. I guess I'll have to give it a few more hours.

No, seriously. First it'll take a month to titer up to the standard RA dose, 7,5 mg. Then probably several weeks before it starts working. If it does, which I seriously doubt.

Until then I might amuse you with stuff like metallic tastes in my mouth and nausea. Enjoy! Hoping to get rid of my psoriasis, though. That would be nice.

 

[minkeygirl]

I can't imagine a neuro here Rx'ing it for me, and that's if I can even get a referral to one. I need to get on the immunologist so I can get the vaccine challenge so I can find out what immune issues I have so I can then go back to the Rheumo who was willing to give me methotrexate. I have a ton of autoimmune stuff in my family too so you'd think it'd be a no brainer.

I need someone in my plan to give it to me so my insurance will pay for the lab work.

I'll can't wait to hear how you do with it. I never cared that much about my psoriasis but I swore if it got to my nails (my dad's nails were like petrified wood) that then I would do something. Now it's there.

I'm so jealous of metallic taste and nausea. Wish I was you! NOT

 

[vli]

No, seriously. First it'll take a month to titer up to the standard RA dose, 7,5 mg. Then probably several weeks before it starts working. If it does, which I seriously doubt.

It's interesting to hear you say that. At least you're not having unreasonably high expectations - always a good thing, I feel.

 

[Ninan]

It's interesting to hear you say that. At least you're not having unreasonably high expectations - always a good thing, I feel.

Not many of us have, do we? Most things don't work. And if they do they only work for some time. The reason I'm trying is that I know of a few patients who have had effect and hoping that I might be one of them. The reason I don't get my hopes up is that a lot of PWME:s take MTX for RA and other diseases and rarely seem to have any effect on their ME symptoms. I would guess it takes higher doses. From what I understand, MTX in the doses given for lymphoma (much higher than for RA) affect B-cells in a way that lower doses don't. They don't even know how low dose MTX works, just that it does, in some cases. But I'll let you know how it goes.

 

[minkeygirl]

@Ninan I'm with you. I never set out looking to be cured, just to slow down the progression of the disease so I can have a better qualify of life.

Unfortunately as many of us find, it takes feeling like crap for awhile, to see the benefits of things we are using. There are so many things they don't know why work, just as you say that it does.

 

[vli]

They don't even know how low dose MTX works, just that it does, in some cases. But I'll let you know how it goes.

Yes please! Thank you, so much.

 

[deleder2k]

How are you, @Ninan? How did MTX work out?

 

[Ninan]

How are you, @Ninan? How did MTX work out?

It's still on my shelf. I got B12 working again after three years and have great effect from it. Don't want to risk taking MTX now since it inhibits folate.

 

[energyoverload]

I took methotrexate @15mg weekly. It seemed to improve some symptoms of my POTS. However no effect on the core ME symptoms. Take methylfolate on days other than your injection day thus preventing deficiency. But be careful you need to watch liver function tests, mine became elevated despite milk thistle supplementation etc. Liver needs to be watched carefully!