Any positive results from taking Methotrexate?

[Chris0808]

Does anyone have any positive results from taking Methotrexate? I am on 6 tablets 2.5 mg once a week. Plus I am taking 5 mg twice a day of Prednisone. I was diagnosed a couple of months ago with PMR.

[SheffieldJane]

How are you? I haven’t heard of that treatment protocol before? What was your start dose? Is your inflammation under control? Why is Methotrexate being considered so early in your disease? There is information about Methotrexate in FAQs on here. Also treatment regimes for PMR.

[Chris0808 in reply to SheffieldJane]

It is a long story it took 5 months before I got the correct diagnosis prior to that my neurologist had me on Dexamethasone which is another steroid because steroids were the only thing that helped my pain. So I had already been on a steroid for about 3 months before I finally went to a rheumatologist and got the correct diagnosis. The first month he put me on Prednisone 5 mg twice a day which doesn't totally take all the pain away but does a pretty good job of it most of the time. The main thing is that I can function with daily life. He would like to get me on a lower dose of Prednisone which is why he said that he started me on Methotrexate on my 2nd month. I have been on it for a month and not sure that I like the way that it makes me feel when I take it although it could all be in my head!!

[SheffieldJane in reply to Chris0808]

Is your diagnosis PMR or GCA?

[Chris0808 in reply to SheffieldJane]

My diagnosis is PMR . I guess that one question that I should be asking my Rheumatologist is why he put me on MTX so quickly??

[MrsNails in reply to Chris0808]

Hi Chris

I’m on Methotrexate (MTX) & it’s pretty much always worked for me (except when l was on too low a dose) I’ve recently tapered from 15mg to 10mg Pred & about ready to start my next taper.

I’ve written about My MTX Journey which you’ll find below in FAQ’s

healthunlocked.com/pmrgcauk...

If you have any questions please don’t hesitate to ask.

MrsN

[Chris0808 in reply to MrsNails]

I read your MTX journal - very informative you have been through a lot I really feel for you. I also really appreciate all of your sharing as it is a huge help to someone trying to find their way through all of this to the other side!! I guess that my only question is I am a 71 year old woman and as I mentioned I got diagnosed about 2 months ago although the symptoms were there for 6 months before the correct diagnosis of PMR. Should I already be put on the MTX or should I just stay on my 10 mg a day of Prednisone and see what happens. So far I am able to maintain with no big issues.

[leedeana in reply to MrsNails]

yes i am on a low dose of 15mg a week so does it make you tired i am and plus stomach issues

[leedeana in reply to Chris0808]

I am on Methotrexate for 6 months from hives or parasitical out break they dont know that and blexten for the itch but methotrexate makes me so tired and sick to stomach and just ugly i cant wait to get off it down to 4 pills a week and wont see specialist till end of Feb omg still get hives every day

[Chris0808 in reply to leedeana]

Thanks Leedeana for your reply just to update after doing my own investigating of MTX and never feeling "well" while taking it I went off of it after about a month and told my Dr that I was just going to stay on one drug the Prednisone. Since doing that I have been improving and feeling better. I have now gotten myself down to 3.5 mg of Prednisone and so far doing well. Sometimes I feel that you are better off just taking the one drug then combining with something else but I guess everyone has a different fit. If the MTX makes you feel that badly though I would consider discontinuing it.

[PMRpro Ambassador in reply to Chris0808]

Totally agree

[DorsetLady PMRGCAuk volunteer]

Can’t help on the MTX sorry, but would question why your Rheumy started you at 10mg - it’s a very low dose……guidelines state between 12.5 and 25mg, and most people seem to begin at 15mg.Guess it’s probably because you were on Dexamethasone previously……

Had you started at a higher dose you probably would have had a better result initially…albeit you say -

“doesn't totally take all the pain away but does a pretty good job of it most of the time. The main thing is that I can function with daily life”.

Rheumy may want you on a lower dose of steroids (it’s a recurring theme unfortunately), but personally I think the correct dose of one medication rather than too low a dose of steroids and MTX would be a better option, but then I’m not your doctor……

Not about MTX -but might find helpful - healthunlocked.com/pmrgcauk...

[MrsNails]

That’s a really a question to ask your Consultant - usually they suggest tapering the steroids monthly but if after a year you are not able to reduce as the PMR keeps reoccurring as you taper they tend to suggest Methotrexate as a ‘Steroid Sparer’ ie you get a better response from the Steroids.

I was at a PMR Roadshow about 5/6years ago & it was discussed there & suggested in the future it maybe treated with MTX & Pred from the beginning but have heard nothing more about that protocol…..

However, l’m noticing that more patients are being offered MTX along side Pred or at least more people are asking questions on here.

Kind Regards

MrsN

[Chris0808 in reply to MrsNails]

Thank you for your response this has all been very helpful.

[PMRpro Ambassador]

Why are you taking 5mg pred twice daily? The usual regimen is to take the entire dose once early in the day. Splitting MAY help some people but taking a single dose works well for most people and may be more effective.

Could you add some detail to your profile please? Knowing country of origin and a bit of history is very helpful in making approriate comments. I'm assuming you are in the US as you say prednisone but it is used in other countries too and knowing country is important as different countries have different rules and habits.

[Chris0808 in reply to PMRpro]

I am taking it twice a day as that is how it was specified on the prescription. I am a 71 year old white woman who lives in Hawaii. Prior to this I was in pretty good health although I have had 2 knee replacements over the last 5 years. I do have significant arthritis which I know is a major factor. I have no one in my family that has had anything like this as I know that it can be hereditary. I worry about the Methotrexate as it also states that it takes away a lot of your normal immunity to help fight off anything that you may get - not too excited about that!!

[MrsNails in reply to Chris0808]

Chris - l have never had an infection that was worse/more serious than anything l’d had before MTX - if you get a cough/cold/infection you are advised to stop the MTX until you are better anyway.

I always kept an eye on my white blood cell count & still do - but you just need to be a bit cautious around people who are sick/have coughs n colds. But with Mask Wearing & Covid Restrictions it’s actually benefitted people like me……

Just if you do get poorly, let your GP know straight away - particularly if you’ve been around Grandchildren who are at School & Nursery.

I’ve been on Chemotherapy at this time of the year but between my husband & myself we kept me safe n well, so it can be done. When you are on Chemo - your White Blood Cell Count is wiped out completely (needing injections to bring it back up to somewhere near normal) 😉

MrsN

[Chris0808 in reply to MrsNails]

We are supposed to do some foreign travel in January and I am thinking that it will not be a good thing to be immune compromised. I appreciate all of your feedback.Thank you

[PMRpro Ambassador in reply to Chris0808]

It isn't hereditary in the usual sense of the word - there is a tendency to be a genetic predisposition but of course, one's family has a similar genetic background so a family may have several cases but it isn't just genetic, it requires a lot of other things to affect the immune system before it is triggered.

[Chris0808 in reply to PMRpro]

Thank you good to know. It is too bad that it seems as though there has been so little research done on PMR it would be good to know what can trigger it??

[PMRpro Ambassador in reply to Chris0808]

There has actually been a lot of research done on autoimmune disease in general - but it isn't a sexy area to research - doesn't have the same cachet as children or cancer! It won;t be work directed specifically at PMR that will work out what causes it, it will be the general work looking at the immune system and what makes it go wrong.It is generally accept that things over our entire life pokes at the immune system - most people are aware that stress affects the immune system, but there is a whole range of other things including environmental factors, illness, surgery, accidents, emotional and physical stresses amongst other things, that can upset the immune system and eventually something is the straw that breaks the camel's back and the immune systems chucks in the towel and goes haywire, developing an autoimmune disorder. What illness you develop depends on which tissues are attacked but fundamentally the cause is similar for everything, Included in it is your genetic background and, in the case of PMR and GCA, aging. At least before they appear we have had a reasonably healthy life - a lot of autoimmune disorders appear during much earlier periods of life, even in childhood. And both PMR and GCA mostly burn out sooner or later - other a/i disorders such as lupus or RA don't.

[Chris0808 in reply to PMRpro]

Thank you for the reply - I will hope for a burn out!!!

[PMRCanada in reply to PMRpro]

I wish more research into alternative treatments for PMR was done. So few choices for us….prednisone, Methotrexate (which is primarily an RA treatment), rarely Actemra.

As you said, PMR/GCA usually impact people in their 70s, so not a huge draw to help that population. And pred is inexpensive to manufacture.

Hence we are left with few options (sigh).

[DorsetLady PMRGCAuk volunteer in reply to PMRCanada]

This comes up regularly - but honestly, what big pharmaceutical company is going to spend thousands if not millions on finding a new drug, when there is a tried, tested and cheap one (albeit not very pleasant for patients) already out there!

We need a millionaire/billionaire who has PMR or GCA to fund it…don’t happen to know one do you? No, nor me 🤨

[PMRpro Ambassador in reply to DorsetLady]

They ARE about to recruit for a "does MTX really work in PMR" study. And there is already one on leflunomide ...

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

With or without Pred?

[PMRpro Ambassador in reply to DorsetLady]

With, as a steroid sparer ..

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Guessed so….not sure there will ever be an “instead of” ,,,well to benefit this generation anyway. 😊

[PMRpro Ambassador in reply to DorsetLady]

New drugs are going to be of the expensive variety - MABs and the like (monoclonal antibodies) which aren't likely to be approved by the NHS for PMR until they come down significantly in price and to be honest I'd rather see a new antibiotic ahead of a new option for PMR.

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

…and not dished out like sweeties so we all don’t become resistant to it.