Methotrexate

[Jamie751]

I thought I posted something yesterday but it didn’t appear this morning so here goes again - sorry if duplicated!

Please can anyone share their experiences of Methotrexate? I have just been prescribed Methotrexate, but before issuing it, Rheumy wants new blood test and X-ray. Long counselling letter from nurses at hospital, including a warning about alcohol and an entreaty not to get pregnant (!!) so much of the 6 page letter must be standard wording. But clearly this drug is a big departure from what I have been on. I have had PMR since November 18 and diagnosed GCA in July 20. I have tapered from 40mg Pred to 6mg currently and feel ok most of the time although easily get tired and depressed. The letter says likely side effects include fatigue, mouth ulcers, abnormal blood results, and hair thinning ... Anything else I wonder? I have blood test this week and X-ray next. I don’t think I have any option other than to start Methotrexate (plus of course folic acid daily) but would welcome comments from this forum.

[DorsetLady PMRGCAuk volunteer]

Hi

If you have a look at FAQs there are a couple of posts on MTX - have linked, but can be found on Pinned Posts or floating post which appears under your question -

healthunlocked.com/pmrgcauk...

[Jamie751 in reply to DorsetLady]

Hi - I’m not sure how I find a pinned post or a floating post - which bit of the menu do I look at please? I followed the link you kindly sent, but the result is not easily seen on my iPad ...

[DorsetLady PMRGCAuk volunteer in reply to Jamie751]

On a iPad the Pinned Posts are on right hand of screen below related posts and a bit about the charity. On iPhone scroll down the screen. FAQs post will appear as the second post on the screen on all devices.

[Jamie751 in reply to DorsetLady]

On the bottom of my screen are: Home, Communities, Notifications, Messages and Profile. I don’t see FAQ’s anywhere but am certainly looking in the wrong places!

[DorsetLady PMRGCAuk volunteer in reply to Jamie751]

iPad needs to be in landscape view -

Landscape view

[Jamie751 in reply to DorsetLady]

Annoyingly, the website doesn’t work in landscape view grrr

[DorsetLady PMRGCAuk volunteer in reply to Jamie751]

Is it Apple iPad? Thats what I’m on mainly and it’s fine.

Perhaps log out and log in again...or check your iPad settings.

[Jamie751 in reply to DorsetLady]

Yes it’s a quite modern iPad Pro and I only have this problem with Patient Access and this website. It used not to be the case ... I cannot see any of the posts on my iPhone - all I see is a screen saying “get notified” and asking me to post something. Maybe I should Re-load the app for both devices ...

[DorsetLady PMRGCAuk volunteer in reply to Jamie751]

Do you mean the App or the website? I believe the App is not being supported at the moment...so I would go with the website.

[Jamie751 in reply to DorsetLady]

Are you saying that the App doesn’t work - at all - and I must log into the website? If so, perhaps there should be a notice to that effect? Could you please send me a link to the website?

[DorsetLady PMRGCAuk volunteer in reply to Jamie751]

No I'm not saying the App doesn't work, but that it's not working as well as it should be at the moment, according to those that do use it......I don't personally.The HU App only works on portrait view, the website works on both that and landscape.

link to webpage - healthunlocked.com/pmrgcauk

[Jamie751 in reply to DorsetLady]

Thanks for that. Having logged in to the website for PMRGCAUk I can now view it in landscape, and the links work. I think that Fran Benson needs to know that I have spent the better part of 4 hours today, trying to get to the right part of your website - and your time too of course which is equally valuable. I now know not to use the app and to use the link you gave me, which is very helpful. Is there any way that a notice can posted somewhere on the site to explain this to the simpler contributors such as me? Maybe there is such a notice and I have missed it.

[DorsetLady PMRGCAuk volunteer in reply to Jamie751]

Already in hand - PMRpro , MrsNails & I are on the ball!

Not an army widow and long time public sector worker for nothing I have you know!

[Jamie751 in reply to DorsetLady]

I don’t for a minute doubt your resolution Dorset Lady!

[DorsetLady PMRGCAuk volunteer in reply to Jamie751]

😉

[PMRpro Ambassador in reply to Jamie751]

Do you mean your problems were with HealthUnlocked or the PMRGCAuk website? Fran is responsbile for the PMRGCAuk website but HealthUnlocked is a separate entity and we are just users. The link to their support centre at the bottom of this page.

[Jamie751 in reply to PMRpro]

As Dorset Lady has put, the matter is well in hand! Until yesterday I had not appreciated that Health Unlocked and PMRGCAUk are separate entities but we have to go through HU to get to the other.

[PMRpro Ambassador in reply to Jamie751]

My point exactly, Except as separate entities you don't have to go through one to access the other. They are stand-alone websites.

[MrsNails in reply to Jamie751]

Hi Jamie, PMRGAuk has its own Website & you can join then you can access by googling or use the Link to FAQ I sent you yesterday & it is in Helplines.

[Jamie751 in reply to MrsNails]

Thanks Mrs Nails - your advice is very helpful and I can now find my way into all of the PMRGCAUK website, so I’m a happy bunny

[Koalajane]

I am sorry to ask but why are you being put on methotrexate?

[Jamie751 in reply to Koalajane]

Well, that’s an interesting one. I don’t really know. The pandemic here has had a bad effect on our NHS - an under statement. The appointment with Rheumy I should have had in January didn’t happen and in March I wrote a polite letter to the Rheumy, which resulted in a telephone consultation and advice to go on to Methotrexate, so that I could come off Pred. Rheumy is relying on blood test results only and I haven’t had a scan for GCA since late last year, which still showed inflammation in the arteries. I get the impression that the NHS needs to be seen to be taking action ...

[Jamie751 in reply to Koalajane]

I omitted to put that I have had T2 diabetes for a number of years and maybe Rheumy is advising taking Methotrexate so that I can get rid of Pred and thus reduce blood sugar. I must ask him ...

[Koalajane]

Oh, I have type 2 which from changing my diet is now in remission. I was diagnosed 4 years ago with PMR and about 4 months later with type 2. I am only down to 4.5mg and never had it suggested that I should take methotrexate

[Jamie751 in reply to Koalajane]

I think it’s a question I must put to Rheumy! Thanks KJ

[DorsetLady PMRGCAuk volunteer]

To be honest don’t see the point in adding in another drug if you are down to 6mg with both PMR and GCA - good going within 3 years.

Another set of side effects, and 6mg of Pred is a low dose.......fatigue and depression more likely adrenals stuttering into life and diabetes....than Pred.

[Jamie751 in reply to DorsetLady]

That is very helpful DL. Many thanks! I'm having trouble with the technology - the links don't seem to be working in the FAQ section.

[DorsetLady PMRGCAuk volunteer in reply to Jamie751]

do you mean on App?

just seen MrsNails reply..

[Jamie751 in reply to DorsetLady]

No, on the website and on my pc

[DorsetLady PMRGCAuk volunteer in reply to Jamie751]

Perhaps you should report issue to HU...see More alongside your avatar top right of screen , drop down menu...gives Help option.

[Jamie751]

Thanks Mrs N - I’m having difficulty with getting that information and DL has suggested I try logging in to the website not through the App.

[MrsNails in reply to Jamie751]

Jamie

The App is not working as well as it did, if you want to access links you need to use the Web Based Version & they will open there OK

Bad enough having PMR without navigating technology that isn’t playing fair 😉

MrsN

[Jamie751 in reply to MrsNails]

Thanks Mrs N - I’ll get in that way! I agree with your sentiments!!

[Jamie751 in reply to Jamie751]

I've logged in to the website and FAQ's. Pressing the links doesn't work I'm afraid. I would like to download the leaflet on Methotrexate, but it isn't available. B**** technology!!

[PMRpro Ambassador in reply to Jamie751]

Not HU's FAQs, OUR FAQs, a link to which appears on a computer immediately below YOUR post in a box of its own.

[Jamie751 in reply to PMRpro]

What you put is quite clear, but what I see on my PC screen is not. There is no box under my posts.

[PMRpro Ambassador in reply to Jamie751]

The original post at the top of the thread.

There is a row of boxes saying Reply, Liked, Save, Report

Then under that "Featured Post" with a box below it saying

Got a question, try our FAQs

with a link

[MrsNails]

Try This Jamie

FAQ ~ Frequently Asked Questions

Don’t Use The App the links won’t Open - Sorry

healthunlocked.com/pmrgcauk...

[PMRpro Ambassador]

If I were at 6mg from 40mg in just over 2 years - nothing would get me to try MTX. i was at a lot more than 6mg so agreed to try it but it made me feel so unwell I stopped after a months as I couldn't function. It seemed to cause a couple of problems at the time which have never properly resolved. Probably me!!!

[piglette]

I think I would not be as keen as you are about going onto Methotrexate at only 6mg of pred. What do you think triggered this suggestion, did you tell them something was wrong? If I were you I would read up on it more and then ask for more of an explanation. I would not take Methotrexate for the sake of it.

[Coffeebeans]

I'm on 15mg of sub cut MTX because I struggle to taper the pred - currently at 10mg.

I'm 4 weeks in and having some side effects, it's messing with my menstrual cycle (on top of perimenopause) and I'm tired. I'm also struggling to sleep which is not like me but all manageable so far. It's too early to see if it's working well but I have noticed feeling less unwell but no change in pain levels yet.

I would question why they are suggesting MTX for you now? You have got to a good low level and presume you will continue a nice slow taper? I would be keen to clarify this with rheumatologist first.

[Hidden]

Hi thereI have been taking MTX for about 10 weeks and have experienced no problems with it.

My situation is different as I have rheumatoid arthritis as well as PMR, so am primarily taking the MTX to reduce the joint damage that RA can cause.

I have no noticeable side-effects apart from feeling a bit tired and grotty on the day after taking the MTX.

Good luck with your decision.