MTX addition. Too early?

[THClover]

New to group. Thanks in advance to all trying to educate. Diagnosed withPMR with GCA components. 18 weeks on Prednisone. Starting at 15mg weaned to 10 mg within 9 weeks. Tried to go to 7.5 but Headache symptoms returned . Resolved going back to 10 mg. After another 3 weeks attempted to alternate 10 and 7.5 every other day. Felt good for 2 weeks then headaches returned. Back up to 10 with 90% improvement after 3 days. MD wants to add MTX. Scared to death of MTX. With 2 failed weaning attempts. Is it too early to consider MTX addition? Is it safe to have one cocktail a week on MTX? Never been a drinker but found alcohol helped with headaches. Sleep with THC supplement.

[PMRpro Ambassador]

Hi and welcome!

If there are "GCA components" - why were you started in a pred dose that is the low end of the PMR ramge? It may have been enough as it turns out - but once you get to 10mg, the recommendations in all tapering suggestions are for 1mg per month at most.

If they were a bit gentler in their approach they wouldn't end up trying to force patients to take another drug!!

This is a taper approach that reduced the flare rate from 3 in 5 to 1 in 5:

rcpe.ac.uk/sites/default/fi...

And they keep patients at 10mg for a year!

[THClover in reply to PMRpro]

Appreciate response. Probably started low as I didn’t want to admit I had the headaches at first. Scared! But once symptoms improved at low dose, I felt probably wasn’t as bad as others reported.

[DorsetLady PMRGCAuk volunteer]

Hi and welcome,

If you have “GCA components” then you probably need a higher dose of Pred… and what components.

Whatever you have 10/7.5mg reduction is too harsh on body - as is the alternate day approach [which seems to be very popular on your side of the pond] it to be much slower tapers…below 10mg the guidelines suggest 1mg reduction over 4-8 weeks,… depending on disease activity and patients wishes.

If you are being reduced sensibly there is probably no need to add in MTX.

You might like to have read of this intro/info post-

healthunlocked.com/pmrgcauk...

Plus this re CBD -

healthunlocked.com/pmrgcauk...

[Gaz227]

I’ve been on MTX injections for 2 years now hasn’t helped me reduce pred by even half a Mg , but no side effects to talk about a little tired occasionally but I am very active . I have a form of inflammatory arthritis so need Dmards to control it , been on pred 9 years now convinced my adrenals don’t work properly anymore but can’t get any help in sorting it out , been on 4.5mg pred for about 18 months every time I try and even drop .25 of a mg everything falls apart . My quality of life is good in comparison to a lot of people I have spoken to but don’t know what the future holds with this cocktail of drugs longer term . 10 minutes once a year in my opinon is not enough care when I drugs like these . Good luck reducing . 👍🤞

[AdoptMeow]

Your experiences should not be counted as failed attempts because you were following incorrect instructions. Methotrexate is a very serious drug, so hopefully a slow, even taper will be the answer.

There are a significant number of people who have MTHFR gene mutations who cannot process methotrexate. I tried it for 5 weeks and could not methylate so it made me quite sick. The rheumatologist just considered me noncompliant and told me "do not come back".

[Sandmason in reply to AdoptMeow]

I have the MTHFR gene also and take MethylMulti vitamins without iron. I am also a carrier of two hemochromatosis genes so I donate blood as often as I can. NutraHacker is free and will run your DNA for all kinds of tiny mutations. Promethease is also almost free. Oh and I also have 7 mutations which indicate glucocorticoid resistance!

Meanwhile I would also refuse methotrexate, the pros say it takes 6 months to help, if at all. Plaquenil is about as non-toxic as it gets. My one visit with a nasty rheum, he told me taking prednisone and plaquenil was toxic and 300 mg was too much for me. Well, sorry, it's 6-6.5mg per kilo of ideal body weight. I weigh 50 kilos, easy math. He also refused to give my PCP a diagnosis and said I had osteo and myositis/myalgia which is nonsense. He literally mocked me to my face for taking 13.25 mg prednisone! He never asked me one question about PMR, like do you have morning stiffness? I am absolutely a textbook case! My husband is an Internist, so is my daughter, but they can't order things like bloodwork because hubby no longer sees patients.

He also lectured me that it was unethical for hubby to prescribe for me, which it is not. I'd rather not have hubby as my doctor, but he is brilliant and has 40 years of experience.

[AtopicGuy]

Headache is a common side effect of THC (tetrahydrocannabinol), the active ingredient in marijuana/cannabis products:

mayoclinic.org/drugs-supple...

It can also cause rebound headaches in those who suffer migraines:

headaches.org/heads-up-epis...

[AtopicGuy]

GCA often damages eyesight by affecting blood flow to the optic nerve, which is part of the central nervous system (CNS). According to this paper, three studies have shown that THC also reduces blood flow within the CNS, thus increasing the risk of stroke or TIA:

ncbi.nlm.nih.gov/pmc/articl...

"In the CNS, THC has been shown to increase cerebral vasculature tone and central BP, which in turn has been shown to decrease cerebrovascular blood flow. This decrease in cerebrovascular blood flow has been associated with an increased risk of cerebral vascular accident (CVA) and transient ischemic attack (TIA)."

The same paper describes the well known association between marijuana/cannabis use and inflammatory disease of the blood vessels, "cannabis arteritis". However, it seems likely that this risk comes predominately from smoking, rather than exposure to THC by eating.

[Olympian]

I think you are tapering too quickly I only reduce by1mg every 4/6 weeks now down to 2.5 and so far good .Good luck

[Bcol in reply to Olympian]

Even that by my standards is very quick. I work on an a DL five week taper at 0.5mg and even then only start the next decrease if all seems well.

[Hosers2]

You might want to reduce in 1mg increments per month. Not a fan of MTX, so I can’t really give you any ideas there.

When I got down to 7.5mgs Prednisone, I had begun to develop Macular Degeneration. Make sure you see an ophthalmologist at least once a year.

Good luck. I was, also, 71 when PMR hit me. And I have a pretty good idea why. I had been taking Simvastatin five years earlier and had all the same symptoms then (only one at a time though) over the space of three years on Simvastatin. I quit statins cold turkey and immediately recovered.

[KASHMIRI1]

I take Methotrexate and its been very good and has helped with reductions of steroids. It sounds scary but isn't. If you get nausea there are anti nausea pills out there that will help. Also its a drug that you can just stop unlike others that need tapering. It does take a while to get into the system my rheumy said up to 3 months. I was advised to not drink while taking it and the same with steroids if possible.

[THClover]

Now really need help!!!

Discussed with my Rheum concerns over starting MTX and just using a slower taper and reducing no more than 1 mg every 4 weeks.Been on prednisone now for 20 weeks currently symptom free again for 2.5 weeks. CRP and ESR now normal. He says MTX safer than long term prednisone and wants me to stay at 10 mg for another week then drop to 7.5. Would readdress addition of MTX after 4 weeks on 7.5mg. I just know drop to 7.5 will precipitate a flare. Not sure what to do?

[PMRpro Ambassador in reply to THClover]

You would get more replies if you post this as a new thread - few people follow a thread so won't see your question, just me and DL.

MTX doesn't often replace pred - whatever he thinks. It MAY allow you to reduce the dose of pred but how much is a variable feast. And it often takes a few months before it takes enough effect to allow you to reduce faster than without. To tell you to reduce 2.5mg at a time immediately is asking for trouble even if MTX will work for you.

But our care should be the result of an agreement between the doctor and ourselves - and it is also OK to disagree with them and say no thank you. And at the very least - wait a couple of months before tapering and only 1mg at a time.

[Bcol in reply to THClover]

Can't help on MTX as never been on it or had it suggested. I think that another chat with your Rheumy is needed. I suspect that there are not many here who would advocate or survive a 2.5mg drop from 10.0mg. Many would find a 2.5mg drop too much from 15.0mg even though that is the recommended way. We would recommend no more than a 10% drop. As you say it is very likely to precipitate a flare and you will end up taking even more Pred than you would with a slower taper. Why is he so keen on getting you on MTX, it's early days yet? Do you have enough Pred to ignore the suggestion for the time being, if not is your own doctor able/willing to step in?

[THClover in reply to Bcol]

Waiting to hear from my primary physician. Thanks