Methotrexate anyone?: I had my first appointment at... - PMRGCAuk

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Methotrexate anyone?

Omanain
Omanain

I had my first appointment at the rheumatology clinic 6 weeks ago where they diagnosed me with PMR and gave me a Depo-Mendrone injection. This wore off last week and I was in a lot of pain. I phoned the clinic and they put a prescription for 10mg daily dose of Prednisolone in the post. This seems to be working quite well.

This morning I have received from the nurse at the clinic a leaflet about Methotrexate and a note saying this would be prescribed at my next appointment on 30th July.

Is anyone taking Methotrexate? Is it working? Even in the leaflet the clinic sent me it does not mention PMR as a disorder that could benefit.

Any information would be greatly appreciated.

Thanks

33 Replies
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DorsetLady
DorsetLadyPMRGCAuk volunteer

Not personally. But some are - with varying results so you’ll get some feedback.

Many of us “oldies” are a little dubious about adding in another drug unless the Pred is not controlling your illness sufficiently. But we are all different so it suits some. Of course it has its own side effects as well, so that’s something to consider.

I suppose you could give it a try, if it suits then fine, if it doesn’t then you can always stop it. But get all the info you can, and if you decide no, then don’t be railroaded into it,

Omanain
Omanain
in reply to DorsetLady

My other concern is that I take pregabalin for for 'failed back surgery syndrome' and as far as I know pregabalin is an anti-epileptic drug, which is also used for pain conditions. The leaflet I received about Methotrexate says anti-epileptic medication should be avoided.

By the way the pregabalin is brilliant for my neuropathic pain but it does nothing for the PMR!!

Thanks HeronNS for the reminder about a bone density test. I am seeing my GP on Monday and hopefully he will be helpful. I'm afraid at 71 I find this is not always the case.

I will try not to be railroaded into anything and the more information I have the easier this will be.

It is wonderful to be able to post concerns here, get advice and hear other people's experiences.

Thanks

DorsetLady
DorsetLadyPMRGCAuk volunteer
in reply to Omanain

Think you need to discuss with GP and probably pharmacist re medication interactions. But I wouldn’t consider taking MTX anyway, as HeronNS says it doesn’t shortened to time on Pred that significantly- so why add in another drug?

Hidden
Hidden
in reply to Omanain

I always talk to the Pharmasist about any new drugs & possible interactions.

At the hospital where l had Chemo, they always insisted on a list of People’s Meds & l used to take my Repeat Prescription list which they preferred.

I always use the same Pharmacy for continuity & safety.

Best Wishes

Mrs N 💕

Daisychain12
Daisychain12
in reply to Hidden

Brilliant reply you are so smart to do that darling xxx

Is the 10 mg working? It's a low enough dose that it seems a bit pointless to add a "steroid-sparing" drug which may or may not work. You've only been on pred for a few weeks. I think there is, however, a theory that mtx works best to reduce the dose of pred if started early on in the steroid regime, so that may be the thinking at your clinic. As far as I know research shows that taking mtx does not shorten the length of time steroids need to be taken.

If they really want to help you, get a DXA scan to check your bone density sooner rather than later.

Don’t know if you’re aware, there’s a search facility on the forum. If you search for Methotrexate you’ll get a lot of hits. Should help you in your research.

Thank you for that reminder darling xxx

Thanks for that. I didn't know. I will do that now

I can only give my own experience. I have both GCA and PMR and started at 60 mg of pred per day. Twice I had severe GCA flares when trying to reduce to 25 gms per day. I was prescribed Methotrexate after the second flare and have since successfully reduced without flares. I'm now on 17.5 mg per day to reduce to 15 mg after 4 weeks. I feel (though can't be sure) that the Methotrexate has helped me and I haven't had any significant side effects except possibly some bouts of diarrhoea. Despite my positive experience, I am surprised that Mehtotrexate is being recommended to you in such different circumstances and when you are already taking medication that is counter-indicated for it.

Omanain
Omanain
in reply to Marijo1951

I have decided not to take it. It really does seem like taking a hammer to crack a nut. I am taking 10mg pred and my symptoms are quite well controlled.

I think your situations is a lot different to mine.

Glad to hear that you are having a positive experience.

Marijo1951
Marijo1951
in reply to Omanain

One thing I forgot to say is that when I started on Methotrexate I took it in the morning and felt lousy during the day. After a couple of weeks I started setting my alarm for 10 pm every Thursday and taking it before I went to bed and was fine the next day. So to anybody who does take it I recommend taking it at night. I can see why you don't want to in your circumstances. We're all grateful that medication is available but it isn't advisable to take meds that aren't essential.

PMRpro
PMRproAmbassador
in reply to Marijo1951

My rheumy said half at night, other half next morning, folic acid next morning. But none of that made any difference to the effects I experienced - itching, 2 day headache 3 days later and overwhelming fatigue.

Hidden
Hidden
in reply to PMRpro

I worked with a guy who was on MXT eventually he reduced to 4days a week at work, took his MXT on a Sunday Evening & had a down day on a Monday. He’s now on one of the new biologicals, has Retired early & enjoying life!

PMRpro
PMRproAmbassador
in reply to Hidden

I gather quite a lot of people do something similar - sacrifice their weekend to recover from "mtx flu". I suppose if it really controls RA symptoms well otherwise it is worth it. It was the fatigue that really finished me - but the diarrhoea was limiting to say the least and I really did feel worse than I used to without pred! I felt OK the day before and the day I took it, that was all.

Hidden
Hidden
in reply to PMRpro

I didn’t realise you’d tried MTX recently until l read one of your replies. I alway & still do take it on a Sunday but never plan anything particular on a Monday just take it as it comes.

PMRpro
PMRproAmbassador
in reply to Hidden

One day would have been acceptable. It was a deal to keep my new rheumy happy! Actemra has been mentioned but that requires approval from Rome I think - somewhere!

Hidden
Hidden
in reply to PMRpro

Keep us updated x

PMRpro
PMRproAmbassador
in reply to Hidden

I will do. I'd intended waiting until the experiment was finished because I'm sure he wants to do SOMETHING! I do have very mixed feelings though! Maybe I just know too much :-(

My Rheumatologist put me on methotrexate after 2-1/2 months on prednisone. I also take two tabs of folic acid to offset the side effects--primarily sore mouth. I started out at 3 tabs (7.5 mg each) and am now at 7 table. I have not been able to successfully go down from 20 mg, but will start titrating slowly again. Methotrexate takes months to really kick in and I cannot tell whether it is making a difference. I will start titrating down again--more slowly this time--so maybe the methotrexate will help since I am at a higher dosage.

Hidden
Hidden
in reply to offtothebeach

Hi

I took MXT & successfully reduced from 18mg to 7mg, approx 1mg per month to 10mg & then by 0.5mg l then got interrupted by Breast Cancer........

I was off MXT for 15months but requested to go back on it as PMR was raising its head again.

I’m hovering around 7mg having successfully got down to 5mg but that’s more about my Adrenal Glands & Fatigue!

Best Wishes

Mrs N

PMRpro
PMRproAmbassador

Methotrexate (mtx) doesn't benefit the PMR directly. Some rheumatologists believe it allows the patient to manage on a lower dose of pred as it changes the way the body metabolises the pred. I took it for 4 weeks recently - and felt worse while on it than I ever did in the 5 years I had PMR without pred! I will not be trying again!

I suppose it is fair enough if you can take it and not suffer any side effects - but 30% of patients on mtx discontinue it because of various unpleasant effects. It takes a year to see any significant difference in the amount of pred you require. I believe it is perfectly possible to reduce without mtx if you go about it the right way: slowly and with small steps, not the size most doctors suggest.

A recent conversation with an immunologist confirmed my person objections - it is adding to the messing about with our immune systems with no guaranteed positive result. Once you are at 10mg pred you are almost at the physiological range - and once you are at the physiological range she is of the opinion there is not much point since it has already been shown recently that such doses in PMR do not create major problems even long term:

practicalpainmanagement.com...

Daisychain12
Daisychain12
in reply to PMRpro

Printed it out. Invaluable. Thank you. Xx

I was on MTX for a while, but then had problems with my gall bladder, and as MTX is supposed to dampen the immune system I was banned from it. I didn't find that it made much difference anyway!

I took this for the first 2 months along with prednisone , but I can't tell you if taking it made a difference or not, because as soon I was on the meds I was pain free. Methotrexate did give bi lateral rashes on my thighs and just after my bone scan, don't know if there was a connection between the scan and drugs, doctor says no. So i went off of it for a week, the rash subsided, went on it the week after the rash came back. So I am completely off methotrexate and just on prednisone

I am fairly pain free on 10mg pred. so I don't see the point in taking Methotrexate as well.

Only real problem I have at the moment is the fronts of my hands are very red and sore, as if they'd been sunburnt and my fingers a bit swollen. Don't know if this is due to the pred or the PMR.

How much pred are you taking?

Hidden
Hidden

I’m on Methotrexate (for the second time) to act as a Steroid Sparer & it works/ed for me.

I was at the Birmingham Roadshow where different Doctors were giving Lectures & one of them did mention that in the future it may become routine to use Methotrexate as well as Prednisolone on first diagnosis, which l though was quite interesting!

Best Wishes

Good Luck with your decision 🍀

Mrs N 💅🏼

PMRpro
PMRproAmbassador
in reply to Hidden

I think it tends to be used from the start routinely in Germany.

Hidden
Hidden

Hi, I am one that had the worst reaction on methotrexate. It made me feel sick and extremely hypoglycemic. I took it for 6 months not knowing it was what made me feel so ill. The only way I felt better was to eat, needless to say I gained 60 lbs in 6 months. I truly felt as if I was dying so didn’t care how much I ate. Once I was off it for a month I felt like a whole other person. It never helped me go down on prednisone.

I have finally taken charge of my weight and have lost 12 lbs since the 6th of last month.

God bless

Linda

Omanain
Omanain
in reply to Hidden

Well done for losing the weight.

It is difficult to know just what to do. Some things works so well for some people yet when they don't the effects are awful. Of course we don't know in advance which group we

will fall into!!

I think I have made up my mind not to take it, but I have to see my GP on Monday so I will listen to what he has to say.

The only reason I am a bit swayed is that my hands are so terribly sore, which makes many things difficult - even stroking my son's puppy hurts! I think this is caused by the pred so being able to reduce it without getting into a lot of pain is tempting.

Thanks for your support and again, well done.

Daisychain12
Daisychain12
in reply to Hidden

Oh Linda you poor darling. You really are doing magnificently. Xxxxx

Hi Omanain. Very glad I saw this. Good luck and sending you support xx

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