My Rheumatologist has prescribed Methotrexate to reduce symptoms which I am experiencing while reducing Prednisone. I have been reducing my dosage, 1 mg at a time. I am now at 7 mg, for three weeks. I am experiencing shoulder and hip discomfort, also fatigue. She said she did not want me on Prednisone after two years, and this drug could help. I have been on prednisone for one year and four months. Does anyone have experience with this drug?
Methotrexate prescribed to help in reducing predn... - PMRGCAuk
Methotrexate prescribed to help in reducing prednisone
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Hi Robin, unfortunately most of our forum members are probably asleep right now. There are plenty of members who are on or have been on Methotrexate and they will be able to give you advice on this drug in the morning. YBB
Yes I am on methotrexate. It is my second time trying it. I have been on prednisone for pmr for 3yrs and 6 mos. I am now at 13.5mg. The first time I was on meth. my dr. reduced my pred. too fast and I went into a major flare. I was on it for a little over a year and got down to 7 mg. I went off of it because I couldn't deal with the side effects. Hair falling out, mouth sores and I was having a lot of episodes of uti's and finding an antibiotic that I could take got to be very hard.. You can not mix antibiotics and methotrexate. Now, my dr. tells me not to take the methotrexate while on antibiotics and go back on the meth. once I am finished.
I am having a horrible time reducing the prednisone, that's why I decided to try the meth. once again. I give myself a shot of 6mg weekly.
Wouldn't you know, two weeks after starting it I developed a tooth infection.
Sometimes I don't think I can win for losing.
Good luck , hope it works for you. Don't reduce the pred. too fast!
Hi Linny3. Thanks for sharing your experience. I think my Rheumy will be advocating methotrexate on my next visit (currently on 7mgs and have been for many months). However I have persistent UTI's, plus tooth infections and skin infections so always taking antibiotics. Therefore I can go in armed with the fact methotrexate interferes with antibiotics. So thank you.
Hi Robin
Greetings from the U.K. just after 4am when l should be asleep 😴
This is my story so far on Methotrexate........
I'd been on Prednisolone for a couple of years 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.
Following my Retirement 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, 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, my resting pulse rate was 100+ 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 Pred 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 2016 I'm now at 7mg; l have been down to 5mg but have varied between 5mg -> 7.5mg
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.
If you do start it I hope you do well & if it doesn't suit you it can simply be stopped, there’s 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 at 5mg but other Doctors have differing protocols.
If you have any specific questions please ask on the forum or direct message me using the two speech bubbles at the bottom the page.
Best Wishes & Good Luck 🍀
Mrs N
UPDATE
August 2018
Things have now changed for me regarding Methotrexate as I had high ALT Levels the MXT was stopped; l had a Liver Scan which shows l have a fatty liver so at this time l cannot take Methotrexate.
January 2019
Following my Fibroscan there has not been any other damage to my Liver, all my specific liver blood tests are normal, Cholesterol Level Normal & No signs of diabetes.
Comment
I can honestly say I’m missing the impact Methotrexate had as my PMR is flaring at the moment & in the past l’ve been steady on 5mg Pred & Methotrexate 20mg
If you have a specific questions I’ll be happy to answer if l can.
My Liver issues were picked up quickly before had any symptoms that’s why they do the monthly blood test.
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Thank you for sharing. I will give it a go, and hopefully the benefits will outweigh the bad side effects.
It’s definitely worth a try, if it doesn’t suit you can simply stop it.
The nausea was my biggest hurdle & l sorted that quickly, just watch what you eat, keep it simple, you only start on a half a dose & don’t forget to drink a full glass of water with it. The Doctors keep an eye on you & you have regular blood tests. I’m prepared to go back on it again, so it can’t be all that bad.
Let us know how you get on🍀
MrsN
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That is the best , most comprehensive report on using MTX I have read so far.
It shows the difficulties of using it at certain times and side effects from personal experience , but also a good way to handle them.
As you eloquently point out , MTX might have it's faults , and may not be suitable for others, but Pred is also a double edged sword .
Many need that extra help to reduce , either for medical reasons which make the need to taper quicker more important , or , because of Pred tapering issues and other side effects.
For many people it is a positive change , others a life saver , others a big pain in the bum because they are less tolerant to that drug than to the steroids.
Unless systematically proved , however , no drugs we are offered are bad in themselves , it is the way an individual body reacts to them that might be bad.
Just like with Pred , if you are offered a steroid sparer it is sensible to double check it is a drug you can take with your own other medical conditions , other drugs , allergies and intolerances.
If there appears to be no medical reason not to try it , it is then your personal choice.
Sometimes , with care , following instructions to make taking a drug easier on your body , and giving your body time to rebalance to taking a new medication, it's worth trying it .
As it could work for you well , and if it doesn't you can always stop taking it , and at least you know and can cross it off the list.
Thanks Mrs N for your story xxx
Thanks Bee
I wrote it some time ago & l have updated it as l went along, l’ve also written a Post on Tips & Hints & l have sent a link to Robin
Angela x
You have done pretty well to get down to 7 mgs on your own! It was at that stage that I first hit trouble and flared for the first time. It is the dose that your Adrenal glands should begin to wake up, so you may feel more unwell as this process happens. For some folk Methotrexate helps them over this hump and relieves pain and discomfort. It is a bit hit and miss because at modest doses it is a drug for Arthritis. I didn’t want to take it because I feared the side effects. My Rheumatologist said “ ask any Rheumatologist, they would rather be on Methotrexate than Pred.”
I have managed to avoid it so far. PMR 3 years 4 months, Pred. 5 mgs, beginning a very slow taper to 4.5 mgs alternate days to address the Adrenal issue. Others will tell you that they took it without any trouble. I prefer the devil I know.
Sorry - but how does mtx help over the adrenal hump?
Unless I misunderstood my Rheumatologist, she said that my symptoms were now coming from Adrenal deficiency not PMR and Methotrexate would be helpful. Thinking about it though, that doesn’t make sense unless it has pain relieving properties. I certainly had more symptoms, pain included, at 7 mg. She also told me that it would make me slim and beautiful, don’t tell me that’s not true either! Honestly!! 🙄
Methotrexate doesn't act as a replacement for cortisol - pred can be used as a replacement therapy if required. For some people mtx often does smooth out the bumps when reducing pred, the withdrawal effects are less. But it can't help in any way with the return of adrenal function - unless it is letting you reduce the pred more easily since lack of pred is the trigger to the adrenal glands to produce cortisol. And of course, if it isn't PMR but some other form of inflammatory arthritis that is causing the pain it would probably help.
Um - I must be truthful! I gained 2lbs in the month on mtx - it was as if the mtx was enhancing the pred side effects, things I'd never had appeared, like hunger! Most people go off food with mtx though! It was the fatigue I simply couldn't deal with - that finished me in every sense.
Methotrexate is an antimetabolite , it's used in various different conditions that involve skin issues or arthralgia ( joint related pain ) .
As a steroid sparer, for those who have severe forms of the condition and are on a high dose of a steroid which cannot be increased .
Also, to alleviate joint pain and/ or skin issues , for those who have been on steroids long term and need to reduce it because of side effects , or , need extra support for their pain and inflammation while tapering off steroid medication.
It is also used for antiinflammatory medication for those with complex multi system disorders , or , a number of different AI and inflammatory conditions because it has a broad spectrum nature .
It can be used instead of steroids for people suffering with joint issues when steroids are not good for their other health conditions too.
It's taken for many different conditions , not just arthritis but psoriasis , eczema, lupus , Behcets among many , many others.
Juveniles can also use MTX for juvenile arthritis and skin issues.
I would assume a Rheumatologist would offer MTX to you to help you cope with additional arthralgia associated pain while still managing to taper off the steroids rather than to try to treat adrenal problems .
It sounds like they have concerns about your level of Fatigue and other symptoms and the possibility of adrenal dysfunction in the future unless you reduce your steroid load .
They probably also realise , you can't taper from Pred as quickly as they might want you because you are suffering various health issues so suggest it as a help with your other symptoms so you don't have to suffer without the additional pain relief of a steroid sparers.
MTX as a way to help you get below a level of Pred dose that will allow your adrenal function to restart not a cure for adrenal dysfunction .
It could have been suggested to allow them to have you on a lower dose for a certain period of time without the need to increase Pred again because of a flare of any sort of arthralgia pain that you might be suffering from ( not just PMR) so that they can then assess and test you for adrenal deficiency after your adrenal gland has had chance to start working again.
Hope that helps , I can see that the way your Rheumy has probably explained it could have been very confusing.
It is a pain trying to deal with so many things happening to our bodies at once isn't it?😥😥😫😦😭😤😩😞😔😴😴😴😴
Take care , and do post and chat when you need to , you are going through the mill by the sounds of it too at the moment and I am sure everyone else is like me and wants to send our SJ a big electric hug and our wishes that you get things sorted soon.
Hugs Bee xx
Thank you for sharing. I will give it a go, but am reluctant to add another drug with the potential of such adverse side effects.
If they are bad you can say no more and stop immediately - it's not a drug that you must taper off. That is what I did. I was really quite apprehensive - but none of the usual adverse effects appeared for me and it was very unexpected things that made me say no. I had said to the rheumy I would stop it while travelling to a conference - by the time we went the fatigue was becoming overwhelming and it took a week to start to feel normal again. Then I couldn't face going back to feeling so tired.
Just added a comment which might help you on this point in reply to Mrs Nails excellent description of her experience on MTX.
It might help to ease some of your worries on taking another drug or MTX if you want to read it.
Just told you as I Wasn't sure if you would get a notification of my reply as it was to Mrs N , but hope all of the advice from people who have taken the drug , or are used to trying new combos to help reduce the effects of Pred tapering will help you make a personal choice that is right for you.
Take care , let us know what you decide , and if you take MTX perhaps add to our knowledge in a month's time with your own experience. xx
i have been taking Methotrexate since the end of 2017. It was prescribed when I had a GCA flare for the second time when trying to taper to 25 mg pred per day. I started on 10 mg per week and this was increased to 15 mg per week after a few weeks when I didn't have any notable side effects. I take it on Friday night, setting my alarm for 10 p.m. to remind me. I also take folic acid 5 days per week. I have a blood test at the beginning of each month to monitor its effects on my liver - so far no problem. My feeling is that Methotrexate has helped me to taper my pred dose without further flares, but it's also true that I have tapered very slowly with the agreement of my rheumy - which everybody on this forum agrees is the sensible approach - so I can't say for sure how big a part the Methotrexate has played in enabling me to reduce.
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SHE may not want you on pred after 2 years - but she isn't in charge. The PMR is and the median duration of management of PMR with pred is just under SIX years:
medpagetoday.org/rheumatolo...
Methotrexate MAY help you REDUCE the pred dose to a slightly lower dose - it is extremely unlikely to get you off pred altogether and replace it. If it did they would use it first line in PMR. They don't.
I tried mtx - I lasted a month. My hair was coming out in clumps within a couple of weeks. I ached all over, itched and I was permanently hungry and put on 2lbs in a month - something that isn't an issue with just pred, even at 15mg which I had to go back to a few weeks after stopping the mtx as I had a big flare with some other issues added on. But for me the end was the fatigue - I could barely put one foot in front of the other and simply couldn't function. The mtx seemed to cause me to have steroid side effects that had never been a problem before so I said no. My rheumy accepted it without any argument.
Nevertheless, mtx does help some people get to a lower dose of pred so I still think it may be worth trying it - you might be one of the lucky ones. However - I refuse to believe that it is worth losing quality of life just to get the pred dose down a couple of mg and mts does also have potentially risky side effects.
But while it will possibly get you to a lower dose - it may not be very low and if you start to have PMR symptoms again that is the sign that you have got to your limit.
Thanks for sharing. I will give it a go, but am not willing to trade PMR symptoms for side effects that are even worse. We will see how I tolerate it.
Yes, My rheumy also suggested it and I chose not to take at first but a few months ago he pushed it again because of my flare ups in tapering...after 3 days on it, I felt relief and am now able to successfully go down from 9.5 to 9 to 8.5 pred in a month. I take 20mg once a week and folic acid each day and wish I had gone on it last fall. I could have been at 6 or less by now. Pat
I took Methiotrexate by injection to help reduce prednisone which it did. I thought I was doing well for side effects, my hair did thin despite taking folic acid and I had anemia which did not improve with iron tablets. Now I am aware I was unlucky but it is as well to know that this drug adds to your immune suppression. I was not quite aware enough and a gastric bug landed me in ITU with septic shock. My bone marrow was suppressed and I was producing very few white cells.
Methiotrexate was stopped but after a few months I started on Azaothioprine. I am down to 3 mg and have no long term damage from sepsis but knowledge is power and if I had another infection I would much quicker to get medical help.
Dr started mtx ( 7.5 ) last Nov after first flare.( Now I believe pred taper was too fast. ) Pred tapered to 5 mg., Mtx raised to 15 mg. Side effects galore. Extreme fatigue, change in food taste, appetite even poorer, hair falling out, sun sensitive, pains increased ( as if pred negated). Appeared to be starting another flare. Return to dr. Told her I did not like mtx. Pred raised to 12.5 and mtx reduced to 10 mg. Currently at that point. Pain decreased by 70% , other side effects still present. My body feels pretty good after mtx clears my system ( takes 2.3 days ). Will tolerate status quo until next appt. Then will discuss mtx (at most 7.5, if at all ) before slow, slow taper of pred. Hope this is not too long. Wanted to paint a clear picture. Also, bear in mind, I’m among the older ones, so goals and effects can be different. Please— will the knowledgeable ones give feedback. Your input has been invaluable.
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Thank you for sharing your experience. It is so helpful to read thorough details...it eases the anxiety of the unknown. I too am one of the older ones.😉
80 this month ( at times on this pmr journey it’s felt like 90 😳). This is a wonderful forum for our unknowns. All questions patiently answered. Restored my confidence in dr discussions as I had accurate info to propose ideas to her. Best of all, knowing others truly understand what you’re going through. My best to you.
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Thank you for the well wishes. I just turned 70, and have been healthy all my life, until now. Just trying to take it a day at a time. I agree that this forum is the best!
Hi
My rheumatologist also wanted to start me on MTX about 6 months ago when I was pretty un controlled and had to increase back up to 15mg Pred-( PMR since May 2018), however I refused and carried on my way with the help of this forum- for example a few weeks ago I was having a fair bit of pain reducing from 7mg to 6.5mg, I was about to go back up to 10mg of Pred but thought would sit it out and then I started feeling much better, could feel my body getting stronger and have been able to reduce easily since then- am currently on 4.5 mg and doing really well-that's not to say I won't flare again but the thing is if I had started MTX I would have said what a miracle drug it is etc thinking it was that that was helping- I personally didn't want to add in a second drug with all it's side effects just yet, unless I was stuck on a really high dose of steroids or getting some bad effects from them-Do listen to your body and do what you feel is right- you haven't been on Pred that long
Unfortunately i was on Methotrexate tablets,but was unwell on them so i tried the injections but i was still ill so had to stop it.I felt really unwell was sick,had the runs just felt terrible.But everyone is different you may find you are fine,think we have to try for yourself. Good Luck.xc
Thanks for the input. It seems to effect everyone differently. I hope I am one of the lucky ones.😊
Big hugs back !
Is the numbness in your left eye a new thing ?
How is the uvietis improving?
I was offered a operation a number of years ago , can't remember the exact name , it was to put the mesh in the area to protect the nerve from the pressure .
When they finished the assessments they also diagnosed the bilateral occipital Neuralgia and suggested beginning anaesthesia injections etc. first , then the GP stopped forwarding the recommendations ( probably because they didn't like the suggestion of putting me on Pregbalin instead of Garbepentin because of budgets )
So I was left on Garb and Tramadol etc. and coping until this last round of assessments brought the original letter to light .
With GCA and other issues I'm pretty glad that I didn't end up being sent down the surgery route now as it can cause other issues with pain and treatment.
Plus , as I've now been diagnosed with Degenerative stage JHS / EDS type 3 , invasive procedures are best avoided unless absolutely necessary because of healing issues.
I do know of a few people who have had this sort of operation though and suffered numbness long term.
But also others with general cerebral neuralgia like myself who ended up having forms of palsy rather than being a post operative side effect , so it might be worth getting some new nerve assessments if you haven't had one in a while.
The GCA and steroids have added to the numbness and some tingling for me too , but things are getting complicated now and I'm being referred to yet another specialist clinic ( at least that what the English Rheumy wants the Welsh GP are trying , yet again to say they aren't allowed to make referrals over the border , a stupid reason for not doing it to send to a Rheumatologist assessing me for Behcets that I am already seeing over the border!)
So it's to London to be assessed for Dysautonomia because of the increase of POTS / Autonomic Neuropathy as well before they finally decide exactly what to do.
I am clearly a phenomena worth sharing around!!!😋😂😂😂
Just wish they'd all just meet in one place at one time and sort things out a bit quicker for me as well as enjoying a game of Spot the Syndrome!!
More Hugs , Bee xx
That's me! I'm very , very special!!😋😂😂😂
Then again , so are you from the sound of things.
But yes , these cross border differences in the NHS do cause alot of complication and it's becoming quite a nightmare .
If I lived in England the Autonomic referral would have been done months ago because the Rheumy could have just done it without consent from the Welsh Health Authority , now , it has to be sent via the GP , and they do not like to do the paperwork or spend the money , so it's still not been sent through. I'm back at the Behcets clinic in a few weeks and will have to tell them it's gone no further and without those tests I can't start trying a new treatment .
I suppose your equivalent would be the differences between what is available through different insurance companies or policies , but at least it's probably easier moving insurer than having to move house to get the same treatment as other parts of your Country.
Plus , our ability to swap doctors is much more limited and needs to be done carefully to prevent the possibility of getting black listed as " troublemaker" then not being able to get local care at all , it's probably why we are all a little bit more concerned about complaining about our treatment too.
It isn't even easy taking the option to go private because you can spend the money but then not be able to be given the drugs straight off by the private Doctor , as if you start treatment privately you can hit against then not being allowed to get that treatment continued by the NHS.
Also , unless your private doctor is approved or also works in the NHS system in your area the local medical care will not always recognise the diagnosis you receive and expect you to go through the system again anyway.
And you don't want to get any one from any area in the UK on the subject of finding a good NHS dentist with room on their books. Especially in Wales.
Basically , NHS has lots of good points and advantages , it can be a life saver , but some of its rules , or the way the primary care choose to read them , causes alot of unnecessary pain and delays for people with chronic conditions too.
I have previously written a Posts on Tips & Hints for taking Methotrexate which you may find helpful -
Thanks for sharing your experience.
That is a good point Dadcue , and although you are in the US , the policy , worked out by NICE for the NHS in the same as the one for US Insurance Companies.
Unless you are lucky enough to get on a trial for a drug early in your diagnosis , the procedure to get on biologics does require you to try the other first and second line drugs and ," prove" that you are in tolerant to them , or they do not work before you will be put onto biologic medications.
The only way this sort of process is bypassed is if you already have a pre-existing condition that has been confirmed at clinic that prevents you from using the drugs being offered to you.
I am currently going through the delaying process of being assessed for biologics at the moment.
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I have discussed your theory about adrenal suppression due to pred triggering PMR with a top research rheumy - they can think of no reason why it should. And it certainly can't be the case for the vast majority of PMR patients.
Hi Robin, absolutely new to Global Medical Forums but hey ho! Here goes. I’ve been diagnosed with Lupus SLE some 5 years now and been under a fabulous Consultant during this period. I’m now taking Methotrexate Injections of 20mg week from originally 15mg over the last 3 months from Tablets as like a few other members, I was also trying to reduce my daily reliability on Predisolone. At worst I was on periods of 30mg daily. But during this time I was on different trials of Immunosuppressant Azathioprine and Mycophenalate. But hey I’m now down to 6mg of Prednisone daily. Yes the next move is to start the reduction towards 5mg and below. Having had a good brief from my Consultant. Once below 5mg, I might start to get Adrenal Suppression symptoms of Vertigo, Nausea, Dizziness etc. Now should I experience any then I’m to go back to
5 mg and contact the Clinic who’ll organise at Syncatac Test following a week off Prednisone to actually see if my Adrenal Gland is going to play again. If not then a Dose if Steroids will be a permanent feature. Reducing Prednisone takes a lot of patience and withdrawal symptoms but hopefully the pain is worth it. Really hope you to can also cope. And for me MTX liquid form has proved a better choice of drug.
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Thank you for responding. I am now down to 4 mg of Prednisone. I am feeling fine. I have had no side effects with the MTX thus far. Keeping my fingers crossed.
Hi Robin
I have been on 20 mgs per week Methotrexate for 4 months along with 13-20 mgs prednisone for 10 months, trying to taper down the prednisone slowly. My daignosis is still unclear but either PMR, sero negative RA or spondalytis. I don't beleive in my case the methotrexate has helped. I have actually reduced my dose of methotrexate today from 20 mgs to 10 mgs as my hair has been falling out and getting very thin. By the time I see a Rheumatologist ( 6th April) I won't have much left. Accordng to the research only 1-3% of people experience hair loss taking methrexate- so I've been unlucky in that respect. If it had been helping me taper the prednisone I may have perservered with the drug, but can't see any advantages of taking it - only he obvious disadvantage. I have, however, heard its been a wonderful drug for some people.
Four months is not long if it IS RA, up to 6 months is usually quoted - and hair falling out is better addressed by increasing the dose of folic acid - you can go up to 5mg per day 6 days a week. I assume you were given folic acid?
Only 1-3% have hair loss? Really - find that hard to believe!!! Mine came out in clumps within days!
Hi PMRpro
Yes, I have been on 5 mgs per day Folic Acid ( 6 days) and taking Biotin. I realise that it can take up to 6 months before the effects of methotrexate take full effect, but I have already given up so much I love to this condition ( whatever condition it is). I am not prepared to give up all of my hair to it as well - and would like to retain some sense of dignity as I go forward on my journey. I realise I may have to review this decision in the future. Given that I have had virtually no support from a Rheumatologist in 10 months since developing this condition, I have had to try and manage this condition with the help of this format, my GP who confesses to being out of his depth and my reading and research. Not sure about the authenticity of the hair loss stats - found it on a medical website but it may not be accurate.