Methotrexate

[kushami]

I have a small update.

After a bit of a struggle, I managed to restart HCQ (Plaquenil) and work up to my prescribed dose. I am still far away from the six months of taking it continuously that is needed to judge the effects (according to my rheumatologist).

I also read recently that in Sjogen’s syndrome six months is not considered long enough to judge whether it is working and that twelve months would be a better guide. I don’t have SS, but I will pinch that timeline.

Methotrexate is in my house, but I decided that it was too scary for now and locked it away in the medicine cabinet.

I am trying sulfasalazine instead. It is frequently combined with HCQ and is less scary than MTX, although it still requires monitoring with blood tests.

Apparently it turns your pee orange, so that will be festive

 

[kushami]

Well, the sulfasalazine and HCQ are used up, and I didn't notice any improvements apart from the HCQ getting rid of wrist pain, which it did way back when I first tried it.

The wrist pain was not bothersome; it only happened when I did weight-bearing activity, such as push-ups. However it is interesting because as I understand it HCQ has not been shown to improve regular age-related arthritis. And that wrist pain started when I was a bit young for osteoarthritis. So the fact that it went away so quickly shows something autoimmune/inflammatory is happening in my body.

It hasn't come back but I can't do push-ups now because of my "giant muscles out of nowhere" disease (suspected myotonia congenita).

On to methotrexate (MTX).

The dose for autoimmune conditions ranges from 5 to 20 mg. I have started with 2.5 mg and survived! (It is notorious for causing GI upset.) I actually suffered more with the folic acid you need to take with it.

I only have a small packet of tablets and it can take up to three months to take effect, so I'm not sure how this will go. I had a couple of parcels confiscated with warning letters from Customs, so I won't be ordering illicit items from overseas again for a while.

Will report back.

 

[kushami]

There are conflicting studies on the interaction between MTX and caffeine. To be on the safe side, I will avoid caffeine on the days before and after my once-weekly dose.

 

[kushami]

Lupus Encyclopedia article on minimising side effects while taking MTX:

https://www.lupusencyclopedia.com/methotrexate-for-lupus-prevent-side-effects/

 

[kushami]

Hmm, Something is Happening.

I can't type at length because of a finger injury, but either MTX is working unexpectedly quickly or LDN is finally working. Or perhaps they are doing something together.

I had MTX on Tuesday morning, and since Thursday morning I have been feeling better than usual when I wake up, and it lasts until lunchtime. Not normal (as in no fatigue, OCHOS symptoms), but definite improvement. Maybe 25% better than average.

I am still suffering from a bad afternoon/early evening slump, which I think is due to the brush with adrenal insufficiency I had in January. So maybe once that goes I will be feeling better all day – who knows?

Cannot do much with myself because I have to rest my hand. Even though it is my non-dominant hand, it still puts a spanner in the works. Have to wear splint for 8 weeks minimum.

It's lunchtime, have made and eaten salad roll, now starting to fade. Will report in full when hand allows it.

 

[kushami]

Mystery solved: it was the LDN making me feel better in the morning. Unfortunately, the weird dreams that caused me to drop it last time showed up again. I will reduce the dose or maybe give up on it. Can’t handle weird dreams.

Dose two of methotrexate today. 5mg. Minimum effective dose. Will see how it goes and may increase it after a few weeks.

 

[kushami]

Can suddenly tolerate folic acid, even though the first time I took it I got a horrible stomach ache. Maybe that was a coincidence. Anyway, that's one less thing to worry about.

 

[kushami]

The fatigue, a very common side effect, is a bit difficult to cope with on top of my usual fatigue. Apparently it subsides for some people.

Apart from that, all is proceeding smoothly. I am on 7.5mg once a week and will stick there for a total of three months.

 

[alyteetee]

The fatigue, a very common side effect, is a bit difficult to cope with on top of my usual fatigue. Apparently it subsides for some people.

Apart from that, all is proceeding smoothly. I am on 7.5mg once a week and will stick there for a total of three months.

did you end up getting methotrexate from alldaychemist? im in aus too, and am worried about the whole confiscation thing given i dont have a script. never ordered from that site before. i heard bpay is the best payment method too but keen to hear if you recommend something else! thanks

 

[kushami]

@alyteetee, I did get it from All Day Chemist. I have used the BPAY option to pay several times.

If your parcel is detected, Customs will send you a letter asking you to produce a prescription or the parcel will be destroyed. So if you do nothing, the parcel will be destroyed and you will receive another letter telling you that.

This has happened to me twice, but the process is very slow. All Day Chemist had already resent my order at no extra cost long before the first letter arrived. Just let ADC know if a parcel hasn’t arrived – I think I waited two weeks beyond the expected delivery date.

Another time, a parcel got held up over Christmas, and arrived months later after we thought it was lost so I ended up with two packets of that one!

Just make sure you don’t order anything that is a controlled substance. And I usually order the equivalent of three months’ supply so it doesn’t look like I’m planning to sell it on.

@heapsreal is an Aussie who is experienced at ordering from overseas and can comment on the process better than me.

 

[alyteetee]

@alyteetee, I did get it from All Day Chemist. I have used the BPAY option to pay several times.

If your parcel is detected, Customs will send you a letter asking you to produce a prescription or the parcel will be destroyed. So if you do nothing, the parcel will be destroyed and you will receive another letter telling you that.

This has happened to me twice, but the process is very slow. All Day Chemist had already resent my order at no extra cost long before the first letter arrived. Just let ADC know if a parcel hasn’t arrived – I think I waited two weeks beyond the expected delivery date.

Another time, a parcel got held up over Christmas, and arrived months later after we thought it was lost so I ended up with two packets of that one!

Just make sure you don’t order anything that is a controlled substance. And I usually order the equivalent of three months’ supply so it doesn’t look like I’m planning to sell it on.

@heapsreal is an Aussie who is experienced at ordering from overseas and can comment on the process better than me.

legendary, thank you. sounds familiar to others' experiences, nice to know someones got the actual med i'll be trying to get! they only sell in 30 tablets as the minimum on ADC (which if taking once a week is WAY longer than 3 months) but there's no option to buy less so i'll just give it a crack. Thanks!!

 

[kushami]

@alyteetee , depends on the dose I suppose, but the inspectors will probably not be thinking beyond “one tablet per day”. I suppose I meant not a large enough amount that it looks like you are planning to sell it. Brain fog!

 

[heapsreal]

@alyteetee, I did get it from All Day Chemist. I have used the BPAY option to pay several times.

If your parcel is detected, Customs will send you a letter asking you to produce a prescription or the parcel will be destroyed. So if you do nothing, the parcel will be destroyed and you will receive another letter telling you that.

This has happened to me twice, but the process is very slow. All Day Chemist had already resent my order at no extra cost long before the first letter arrived. Just let ADC know if a parcel hasn’t arrived – I think I waited two weeks beyond the expected delivery date.

Another time, a parcel got held up over Christmas, and arrived months later after we thought it was lost so I ended up with two packets of that one!

Just make sure you don’t order anything that is a controlled substance. And I usually order the equivalent of three months’ supply so it doesn’t look like I’m planning to sell it on.

@heapsreal is an Aussie who is experienced at ordering from overseas and can comment on the process better than me.

Totally agree with your post

 

[kushami]

@heapsreal , I picked it all up from you and the other helpful people on the pharmacy thread.

 

[kushami]

@alyteetee, just re-reading my post I did sound a bit blasé the other day. Customs/TGA will occasionally fine people, although there's not much information out there on why one person will get a warning letter and another will get a fine, or how they work out the size of the fine.

As far as I can tell, it seems to be related to amount ordered (if it looks like you intend to sell it), repeat offences, restricted substances, or the latest "trend" that the minister has told them to crack down on (e.g. bodybuilding, nootropics, COVID pseudoscience) so they can put out press releases making him look good.

I am feeling a bit concerned as to what I will do if methotrexate turns out to be effective for me. Ideally I'm hoping that, if it works, a few months of taking it will put me into remission, but supposing it helps only if ongoing. I can't be ordering illicit prescription drugs from All Day Chemist for the rest of my life!

Just this week I managed to get represcribed with hydroxychloroquine, so I am hoping to "leverage" an Australian prescription for methotrexate off the back of that in a few months.

In one way, I feel bad about doing this, as I have read stories of people with factitious disorder manipulating their way into getting unneeded treatments, and how easy it is for them.

In another way, I don't feel bad because the lack of help means I have no choice but manipulating my way into getting effective treatments for a genuine disorder.

Life takes you in funny directions. Maybe I'll get a book out of it one day. Or at least a blog article!

 

[kushami]

Slight crisis as I did not order far enough in advance from All Day Chemist. I may have to miss a week or two. However, autoimmune patients are advised to pause their weekly doses when having major scheduled surgery, so it won't be a disaster.

 

[kushami]

I have been confused about the folic acid and whether it was upsetting my insides or not. At one point I was also taking iron supplements, and I think I got a bit confused about when I was taking or not taking them, and thought the side effects had gone away.

Both did cause me GI upset, and, in the case of folic acid, "human whoopee cushion" level flatulence. I am currently eating lots of folate-rich and folic-acid-enriched foods while investigating my options for a different formulation.

 

[kushami]

Just wanted to add to this thread briefly because I requested my blood test results to be sent to me from my last specialist (the really hopeless autonomic one who charged like a wounded bull but never had any ideas of his own and I had to research and suggest everything myself).

To my surprise, I found that I had had what looks to be a decent selection of testing.

I was either not told (wouldn't put it past him) or had forgotten about getting various immune-related blood tests, such as rheumatoid factor, Sjogren's antibodies, and the various Ig's.

I think the tests were done at the day admission ward when I was trying saline infusions, so I never had a copy of the order in my hot little hand to peruse because it went through the hospital.

I am relieved to find out that they were done, and although almost everything was normal, I remain convinced that my OCHOS is autoimmune for all the previous reasons I wrote about in this thread.

The only abnormal result was an elevated C4 (complement 4). It doesn't point to anything specific, unfortunately, but I still feel a wee bit happy about it.

There are various possible causes of elevated C4, but the only one that applies to me is a possible inflammatory response or autoimmune something or other.

It's not much, but I'll take it!

 

[alyteetee]

Slight crisis as I did not order far enough in advance from All Day Chemist. I may have to miss a week or two. However, autoimmune patients are advised to pause their weekly doses when having major scheduled surgery, so it won't be a disaster.

hope you're doing okay off it! i placed my order and am waiting. its been 3 weeks though i expect it's normal for it to take much longer than this. you're probably better informed than me but if you're not doing well on folate perhaps methyl-folate will treat you better.

 

[kushami]

@alyteetee, it does take a while to arrive. I didn't allow enough extra time for my order, and I forgot about Easter, and it's possible that my package has been confiscated. ADC will resend, but that will take another week or two.

I should be fine without it for a couple of weeks. There's no particular downside (apart from symptoms coming back if you haven't been on it for long enough to bridge a gap). I might even use this as an opportunity to try to get testing again.

I have thought about the methyl-folate, but I'm a bit tired of buying supplements and not being able to use them. I've got three bottles of iron supplements that I can't use. Asked around the family and nobody needs them either. I have crushed the basic folate tablets in a mortar and pestle and am having a tiny bit with each meal.