Have had my first rheumy appointment since diagnosed nov2015 with temporal arteritis.16 months and four flares later my doctor said he couldn,t cope and i would now be seeing someone else as we worked out that my intake of steroids over last six months has been an average of 35 daily.The lady i saw was very knowledgable and thinks i might have a bigger problem than first thought so am waiting for a full body and head scan,meanwhile have been started on 10mg methotrexate for 2 weeks 15mg for 2 weeks 20mg for two weeks.After two weeks i start reducing by 2and half pred every two weeks,am on 27and half to start.Iknow from some previous posts that i have seen that it doesn,t always have any success,but if there are people out there that have had an improvement in there intake of pred over a long peroid i would be more than happy to hear from you ,as at the moment i feel like i am running round in circles with everything gradually getting worse.

30 Replies

  • Hi denny-g

    I'm on Methotrexate now for the second time & was originally started on it to reduce from 18mg to 7mg which I did successfully. I don't have Temporal arteritis so my experience may be different, I have PMR & was stuck on 20mg for far too long.

    I can message you more details later if you think my experience of Methotrexate may help?

    Best Wishes

    Mrs N

  • hi Mrs Nails I thought i had replied but obviously not pretty useless at this on occasions.I would definitely like to hear of any experiences.I took my 1st dose 10mg friday night and woke with a horrendous headache Saturday morning which went after an hour and nothing since (fingers crossed)

  • Hi

    I am due to start Methotrexate in the next week or so, having blood tests next week.

    I was diagnosed in June 2015 with PMR/GCA and am unable to get below 10mgs and have had four flares ~ so I would also be interested to hear of any positive comments on Methotrexate.

    I said no in September when it was suggested i was then on 11mgs, I am now back to 12.5 - so no real reduction in almost 7 months, so even my GP (who had said to try just reducing stress etc and a little more time) is recommending it.

    Bit scary another nasty medication ..............

  • lesley2015 See my reply above, I can get back to you in a couple of hours & tell you about my experience on Methotrexate & I got from 18mg to 7mg then had to stop for Surgery but I'm back on it again, from choice as a steroid sparer.

    Catch you later

    Mrs N x

  • Oh yes please MrsNails, something positive would be great!

  • lesley2015 & denny-g

    My experience with Methotrexate

    I'd been on Prednisolone for a couple of years for PMR but could never get below 11mgs while I was working so l decided to retire early to see if I could get the dose lower without the stress of my busy job.

    I had two separate big flares & my Consultant at the time put me on 30mgx1week; 20mgx1week; 15mgx1week; he did this twice within a couple of months. It was from then on that things got out of hand & I had to keep going back to 20mg as 15mg was no longer holding the PMR at bay, it must have been about for around 10months, to be fair my GP was beside himself with worry, he eventually got me a referral to a new Consultant who started me on the Methotrexate. I really was not overly keen on this but by now I'd packed on 3stone & could barely walk without getting out of breath & my BP was through the roof, so there was no choice but to try it!

    I had the bloods & X-rays done then started on 10mg Methotrexate once a week for 2weeks plus Folic Acid 5mg on the other six days, then increasing the MXT to 20mg once per week.

    At first it was unremarkable but after about four weeks I suddenly started to find the smell of cooking made me nauseous (on MXT day) l tried changing it to take at night but still the nausea persisted if l smelt food cooking, l was offered injections but declined so l changed my MXT day, took a simple antiemetic, kept my food simple & within a week or so the nausea passed.

    I came down 1mg per month & happily got to 7mg when unfortunately l was diagnosed with Breast Cancer, so the Methotrexate had to be stopped for Surgery & then Chemo.

    For about six months post Chemo the PMR held at 5mg but then as it started to raise its head again, l went back to 7.5mg & asked for a re referral to the Rheumatologist, she started me back on the Methotrexate at the end of October & I'm now at 6.5mg & have been for about six weeks but l'm not reducing as we're going on Holiday on 14th so I don't want to rock the boat so to speak!

    Methotrexate is not an easy drug but then Prednisolone is a double edged sword, at first it did me good but then it started to cause me other issues. There are several people on this forum who've had bad experiences with MTX but I can only tell you my story & for me it did what the Doctors wanted.

    That's why when the PMR started flaring again, l was happy to increase to 7.5mg but I chose to ask to add in the Methotrexate again, this time with no issues whatsoever.

    It's very much a personal decision but for me it worked, I've experienced Chemotherapy since so Methotrexate for me second time around was an easy choice.

    I hope you both do well & if it doesn't suit you it can simply be stopped, no need to wean off it.

    Don't forget to the take your Folic Acid as prescribed, my Consultant recommend's the other six days but other people have differing protocols; also you need to have monthly blood tests.

    If you have any specific questions please ask on the forum or direct message me using the two speech bubbles at the top of the page.

    Best Wishes & Good Luck 🍀

    Mrs N

    PS l have PMR but not GCA

  • Thank you so much for sharing your experiences ..... it does seem to be an individual reaction so I am always optimistic, so lets hope it agrees with me.

    May I ask - did you suffer any extra weight gain or hair loss. Having put weight on I have finally seemed to find a way of losing weight, albeit slow, just lost half a stone and really do not want to put it back on!

    And with the nausea, were you actually sick or just felt it?

    Sorry for all the questions but there seems to be such negative comments about this, although I do have a couple of friends who take the injections for RA and are fine.

    Thank you again

  • Ask away Lesley, I don't mind at all, no l was never sick, it was the smell that made me nauseous, hot fat for Sunday Roasties to be exact, so l changed my day to avoid that & my husband cooked meat on the BBQ as it was May time, I mainly ate chicken from M&S pre cooked & gradually l got over it, the Team or GP will recommend an antiemetic if it affects you.

    The weight just melted away, l lost two stone from being on 20mg to when l got to 7mg.

    My hair had already started to thin with high dose steroids; there's been a thread on this/curly hair over the last couple of days. As l approached 10mg l could feel all the new tufts regrowing, so l think the Prednisolone had more of an impact on my hair than the MXT & l think it's Pred that's impacting on my hair regrowth after Chemo but as long as I've got eyebrows & more importantly eyelashes l'm happy enough with my wig!

    Hope that helps & if you think if anything else, please ask.

    Best Wishes

    Angela x

  • Thanks Angela

    That is great thank you so much. I lost my hair at the temples/hair line, especially when I was on a high dose of steroids, 40mgs, the GP said it was more likely to lose it from preds that MTX. It is growing back now.

    Thank you for the info, My husband doesn't cook (bless him, we have a digital cooker and he doesn;t know how it works!) so we may both go hungry.

    I hope you don't mind but If I may if I have any queries when I start I will bombard you with questions!!

    Thank you so much.

    Lesley x

  • Yes, of course & you can private message me if you prefer.

    Angela x

  • thank you MrsNails,I will continue on my treatment as it is early days for me and all i can do is hope for the best and keep my fingers crossed that the scan finds nothing really bad and that i manage to reduce my pred even only a little would a great help.I tell myself patience is needed and I have to believe that lol(not really good at patience !!!!).

  • I hope it all goes well for you & the results are good from the Scan. Yes, it's frustrating wanting the reduction to happen quickly, I used to work out when I thought I could be at a certain dose & was only ever disappointed as l never made it, so yes patience is definitely needed. Good Luck & let me know how it goes. 🍀

  • lesley2015 & denny-g

    I forgot to say, I used the dead slow method of reducing the steroids while l was on the Methotrexate & have again this time; l stayed at 7.5mg for the first two months, then started the DSM again & l am now on 6.5mg Holiday Dose 🚢

  • I was originally diagnosed with PMR and GCA in December 2012. After a time of Prednisolone only, inflammation levels fine, wean down the dose (fine) come off it - inflammation levels shoot up again, I was put on Methotrexate for about two years during which I got off Prednisolone completely with no sign of inflammation. When I got off the Methotrexate my inflammation levels shot up again. I was then diagnosed with aortitis, presumably what your doctor is afraid of and put onto 40 mg Prednisolone. Now on 25 mg Methotrexate by injection, Prednisolone down to 7, inflammation levels (so far) fine. Methotrexate does seem to be working for me. Incidentally, I took the pills the first time round, injections this time and I find the side effects of the Methotrexate are almost unnoticeable on the injections but were dreadful on the pills. Or perhaps my body just learned to cope in the eighteen months between the first time I came of Methotrexate. I don't know if this is possible. However, as PMRpro says, we are all different, but it does seem to work for me.

  • hi cornish jan many thanks for your reply,I was worried that it didnt work at all for gca ,so was good to read your story.It is such a good site to be on I must admit I spent the first six moths feeling very much on my own without any real understanding of what was wrong with me .And it now feels like there is a big extended family out there ,and there is always help and support . Denny

  • Hi denny-g,

    I can sympathise with the running round in circles feeling. I was the same until i found this wonderful group when I was about 20 months post diagnosis. I had been tried on Methotrexate and I'm afraid it didn't agree with me. I felt generally very ill, headachy, fluey and I started to lose my hair very quickly so came off it. I'm temporal arteritis too. Everyone reacts differently so hopefully you'll be OK.

    I'm back on a higher dose of pred following a flare before Christmas but I am coping with it a lot better with advice and encouragement from the love!y people on here. I've just started reducing again...very slowly!! 😀

  • Hi altywhite thanks for taking the time to reply to my post .Sorry it did,nt work for you At the moment, and only one 10 mg dose under my belt i have no idea if it will work for me or not .I am just keeping my fingers crossed and taking one step at a time .Will keep posting and let you know how I do. Keep on the dead slow and stop it will work,its just I keep flaring.

  • I'll keep my fingers crossed for you too, and yes please keep posting. 😀

  • Hello , this is my first post . It is interesting to see all the different reactions to the drugs involved . I was diagnosed with GCA and PMR 9 months ago . I was immediately put onto 65:5 mg prednisalone and 20 mg of methotrexate . I have not had any nasty reactions, tho I have a moon face and have gained a bit of fat , the worse was lack of sleep , my brain was on high alert always . Fortunately I have been permitted to slowly reduce prednisalone and am now down to 8 mg, now reducing by one mg per month until I see specialist again In 3 months . I am.getting some pain I shoulders and neck, but can cope with it with paracetamol and rest. I think I am coping ok , but it is all rather scarey . I live in Australia, I think we all must have a specialist we can trust completely, if you don't trust yours, please find another . Best wishes to all .Islandgirl50

  • Hi Island girl50,I also have a bit of a moon face,lucky with the weight as in 16 months only gained 8lb .but i do go to the gym 3 times a week and work out the best i can,as was worried about the pred and osteoporosis .I have started the methotrexate and so far only had a headache ,but as the rheumy started me on 10mg working upwards watch this space.Do you take folic acid and if so how much?This is my first rheumy and she seems to know what she is talking about so quite happy to do as i,m told and hope for the best,as pretty desperate to get any help!I am from the south west in England ,i bet your weather is a lot warmer than our weather at the wishes denny

  • Hi Denny , yes beautiful autumn weather here now . I love it , but am dreading winter , I live in central Victoria , and it does get very cold , we have extremes in out weather . I am taking pg 5 mg of folic acid Tuesday and another 5 mg on Thursdays ,, I take my methotrexate on Sundays ( 10 mg in morning , another 10 mg at night )!also take calcium and vit d daily and exercise as much as I can , I think whatever the side effects are , it's saving our sight , so we just have to be thankful these drugs are available . It's getting the right doses etc for each individual must be a nightmare for the specialists . Take care , stay positive , and have a great day ( 6am here ) sun not quite up , but in for another beautiful day . Islandgirl50

  • Hi Islandgirl50

    Thanks for your comments, so pleased yo have had a positive reaction so far. Like you I already have the moon face, some weight gain - although that is going down a little and had hair loss and the usual lack of sleep. I really want to reduce successfully off the preds and hope MTX may help, so although I know some cannot tolerate it, it is good to hear from those that have successfully taken it.

    I am from South East England, many miles away!

    Thank you!

  • MTX does not replace pred in PMR. It MAY allow a lower dose to manage the symptoms but as long as the underlying autoimmune disorder is creating inflammation you are likely to need some pred. Unless it isn't PMR in which case, the MTX may work on its own.

    I don't want to sound depressing - but don't expect too much or you will be disappointed.

  • PMRpro many thanks for replying ,I have been away .for a few days.I am not expecting anything really,just willing to try anything that may possibly work as they won,t operate on my cataracts until I manage to get down on my preds .So one foot in front of the other and hope for best

  • "they won,t operate on my cataracts"

    Why not? People have had cataracts done on 10mg - can't remember where you are. But it may be worth writing around and seeing if another surgeon will do it.

  • they will not operate on my cataracts as I keep flaring and getting oral thrush.As this could cause a fungal infection in eye if operated on ,I could then end up losing my eyesight ,which was the whole reason for going on steroids in the first place.I am still on 27.05 pred so hoping the methotrexate works for me as have already lost sight in left eye due to steroid induced cataract.Thankyou for your reply

  • Ah - fair enough.

  • So, I have had two doses of MTX and taking the 3rd tomorrow. GP has taken weekly bloods being over cautious he says).

    This week I have felt achy, extremely fatigued, nauseous and have had a head ache, it felt like my usual GCA pain, but have tried to ignore it.

    Seen my GP this afternoon and discussed fully, my bloods in relation to my MTX are fine, however, my ESR levels are raised, so he believes I am having yet another flare! He says the nausea may be the MTX but to carry on and assess after a couple of months, but raise my preds to cope with flare. I am seeing him next week again.

    Feeling frustrated to say the least.

  • hi Lesley,Have had 4 doses so far and am going to 20 mg this week.So far everything has been okay.Have had one blood test after two weeks and that was okay,no rise in esr or crp due to go down to 22/5 on friday started on 27/5 so am coming down at 2/5 every two weeks.Steroids that is.I just have to keep my fingers crossed as anything is better than the average of 35mg of steroids that i have been on for the last 7 months.Will keep my fingers crossed for you ,keep me updated and the best of luck

  • Oh thanks for letting me know - glad you are coming down on Preds and seem ok on MTX. I feel better on increased dose, back up to 15mgs which is frustrating as I was down to 8.5 - but that is the nature of the condition I guess but after almost 2 years had hoped to be a bit lower.

    Will let you know about progress and will also me interested to see how you get on.

    Best wishes.

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