After a telephone app today with my Rheumy finally decided to give Methotrexate a go , I just yo yo on prednisolone from 5 to 2.5 Mg and back up again have done for 6.5 years, think the only way I will ever get off steriods is with a sparing drug , the Rheumy said providing my body doesn’t completely throw a wobbler on MTX it is less harmful long term , I guess only time will tell, got an appointment in a couple of weeks to learn how to inject myself and get some base drug tests done . Anyone else gone down this path ? , I’ve been a little frightened of MTX , when you read it is used for chemo in larger doses . I can feel my anxiety rising just thinking about what is coming next 😩
After much debate trying MTX : After a telephone... - PMRGCAuk
After much debate trying MTX
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Gaz227
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Sorry meant base blood tests
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Do you mean you toggle from 2.5 to 5 and back? No doses in between?
No I use the dead slow system between 5 and 2.5 , took me since last xmas to get down to 2.5 , I was there for about 3 wells and it was gradually getting worse to the point where I had to increase. Started a slow taper again from 5 to 4 .
I'd suggest you stick at 3mg next time - half a mg really can be the difference at any level!! Even at 15mg! Arcoxia won't help PMR and it has more long terms risks than pred - don't care what any doctor says. And spend longer at a dose than you have been - sometimes a flare starts higher but you aren't there long enough for the symptoms to appear and it is later when you recognise it.
And unless he thinks you have an inflammatory arthritis I would postpone the MTX until you find out if a tad more pred is enough. Prof Dasgupta said to us last summer that he often keeps patients at 2-3mg long term because it reduces the risk of relapses. Which I take as a tacit admission that PMR DOESN'T go away as quickly as they'd like to have us believe! 1 or 2mg pred more has far fewer adverse effects than any of their so-called steroid sparers can bring with them.
And if you flare because of a taper step - add 5mg to the dose at which you flared for up to 10 days and then drop straight back to the dose above where you flared. Pred has never cured anything - it is a management strategy and you are looking for the lowest dose that manages you as well as the starting dose did. You seem to have arrived there with about 3mg - and that is a low dose that is safe enough to continue on for some time. There is no guarantee that MTX will get you entirely off pred so there could be the problem of being on 2 drugs instead of one at a low dose. I know which I'd choose.
I did say this to him about ending up on two drugs instead of one , then he said if Mtx doesn’t work for you as a sparing drug we can stop it . He said some people have better results with Hydrochlorine ( Sorry bad spelling of that drug) think you know which one I mean , but only if the MTX doesn’t doesn’t get the result we are hoping for . Either way it’s a catch 22 mine field .
????? Must be anecdotal evidence then because there have been no decent trials of it - the one there is is quite dodgy and published on a platform that at the time had a very poor reputation. The sooner someone funds a decent trial of their precious steroid-sparers in PMR the better. They seem to want to transfer experiences with RA to PMR and they are different diseases and mechanisms.
Have you had your adrenals glands tested - with a Cortisol test which can be done by your GP?
How long have you been yo-yoing?
I asked this morning for an adrenal test , I have asked many times before they just tell me it’s a waste of time , this morning was a different Rheumy and he said the same , been doing the yo yo thing for about 4 years now , tried staying on 2.5 with Arcoxia but as soon as I stopped the Arcoxia couldn’t function so much pain , my Rheumy thinks my main problem is Arthritis as it’s now all joint orientated. Plus they suspect SAPHO syndrome as I have severe sternum and clavicle issues .
Ask your GP to do a basal cortisol test - just a sample taken about 9am without having taken your pred for 24 hours. Nothing else. If the level is under 100 - adrenal insufficiency is ver likely. Above 450, normal function is almost certain. In between means a possibility of adrenal insufficiency that needs a synacthen test to sort out. Obviously, the lower the pred dose the better for accuracy but if you had been at 3mg or so for any length of time it shouldn't be far out.
pubmed.ncbi.nlm.nih.gov/286...
I’m back in 4 now will it still be accurate ?
If you do the test what happens next? If it is low what do you do ? If it is high then that means it isn't insufficiency. So what do you do?
If it is high, you are most likely to be fine and can carry on reducing pred and probably at a reasonable speed. If it is low, your adrenals aren't working YET, you carry on reducing very slowly, possibly switch to hydrocortisone as that stimulates return of adrenal function better but may not manage the PMR quite as well. If it is in the middle - there is justification for requesting a synacthen test.
HI GAZ.... This is the first time I heard about the Sapho thing...I have clavicle both sides neck both sides chest both sides, back up and down both sides pain.. I think it's PMR my rheumatologist doesn't ..I am on 8 mg prednisone it doesn't seem to help that much can you have the Sapho without any skin conditions at all? Im 60 yrs old.
Hi , I’m 61 yrs old and my Rheumy suspects Sapho could have been active for a few years now, I have no skin issues at all , I thought you had to have 2 of the conditions within the acronym but my Rheumy said one is enough to bring it to his attention , but the sternum pain and clavicle issues are classic signs , it also very commonly affects the upper spine and ankles . I have seen some people with the skin issues and it is very scary , 🤞keeping everything crossed it doesn’t come to that , but having PMR and other inflammatory immune conditions can easily be confused with it in the early stages . Also AS is sometimes miss diagnosed for it .
I’m so pleased to see this post as I’m haiA F2F with my rheumatologist in November and he’s expecting my decision on Mtx and I’m unsure of what to do , please let us know how you get on x
Will do , if it was just PMR I think I would have stayed on the low dose of Pred , but now the issues with SAPHO and other types of Arthritis have to be considered I think the game has changed for me.
I have been injecting methotrexate since Feb. without any side effects. I could not tolerate oral methotrexate though....but we all are different.
If you have a look at FAQ’s l’ve written various Posts in MTX - l am now on the Injections & they are very easy. Good Luck 🍀
I’m travelling right now but if you have any specific questions l’ll be home later.
MrsN
Thank you , I think I have a million questions go through my head each day remembering them is the problem ,
Do you experience a definite return of symptoms type flare when you have to up your dose. I felt pretty rough at those levels and it may have been the cortisol struggle. I too fear Methotrexate. My Rheumatologist is all for it. She said ask any Rheumatologist whether they would prefer to be on MTX or Pred and they would all prefer MTX. Hmmm! You will find self administered injections quite easy I think.
I have really tried hard to over come the reduction pain in the hope that it would reduce over the period of a few weeks but it doesn’t my arthritis just gets so chronic I just can’t function and am so miserable it affects us the whole family with my mood state , I am usually a very athletic person as I teach martial arts , but below 3 Mg I am an invalid , I was told the same as you by 2 Rheumy’s they would always opt for MTX over pred providing your body can deal with it , as the long term affects of pred can be significantly worse , I got to the stage after 6.5 years on pred if I don’t wean off it now it will be for life so I am going to give it a go , but I have a feeling I will always have to medicate my arthritis issues . Such is life I guess . 👍
Many times on here it has been said 5mg or under long term isn`t a problem. If I get to 5ish I may stay there. I`m surprised you have been offered MTX while being on such a low dose...I drop very slowly, half a mg a time....our bodies need to adjust...
I think he wants me on MTX as there is more going on than PMR , I think the Latin translation for POlymyalgia Rheumatic-a is many muscles pain , and my muscles don’t hurt at all , all my problems are skeletal .
What kind of Arthritis do you have RA? OA?
OA by the look of my X-rays and scans , my bloods for RA where negative, but the scans showed large Edema’s on my sternum clavicle’s , that’s when the SAPHO diagnosis was handed to me , I also have secondary Sjogrins syndrome which is extremely frustrating .
My Rheumy told me that a person can have RA without it showing on blood work. She had a term for it but I don't remember what she said.
Think that is referred to as zero negative RA , I asked my Rheumy whether that could be my problem and he said , as my joints are not warm and swollen in any way he was writing it off .
Are you absolutely sure all your arthritis pain is actually arthritis, not inadequately treated PMR? I wrestle with this myself. If a couple more mg of pred works it's probably better than introducing another medication, provided your pred level is low, which it seems is possible if you are okay at 4 and don't try to go to 3 too soon. This is the lecture I repeatedly give myself, btw, although no alternative or addition to pred has ever been offered me. 
There are so many different opinions , it’s a mine field which way to turn . I have tried to reduce pred so many times and just keep stumbling on the last couple of mg’s, I plan to ask my GP first thing Monday when I get home for a basal test as advised by PMR pro , depending on the outcome of that ( that’s if he will do one) I will decide the next step to take 👍
I'll say it again - you aren't heading relentlessly for zero. You are looking for the lowest effective dose and very large numbers of people need a couple of mg for a long time. Not because of adrenal problems but because the underlying cause of the PMR is still active.
As PMRpro says, most likely you still need that last couple of mg and nothing your doctor will suggest, no amount of willpower on your part, can change that. I took an entire year to taper from 2 mg to zero. Within a month I had to start pred again, and for some months I was okay back at 2, although I was unable to taper lower again. Then late last year, about six months after the zero adventure, I had a major flare, and I still need more pred than I had needed for several years. If I had known then what I know now, I would have stopped at 1 mg and not tried to taper off. But you don't know unless you try. You have tried, and it seems you are not ready, and if a couple or 3 or even 4 mg work, with a minimum of side effects, well then....? It's just a longer journey than any of us would like. I am sometimes cross about it, and then I remember how very lucky I am that I have a medication which helps me, gives me quality of life. It may have taken some things from me, but I without it I'd have pretty much nothing. Have a read of a lttle story I wrote relatively early in my journey. I might change the ending a bit now, but it did represent my ambivalence quite well:
Methotrexate is an arthritis drug that helps some people with PMR. Prednisalone doesn’t help osteoarthritis. I am sorry that you are going through a tough time. You are used to being so athletic. I imagine on better days your martial arts training has given you resources to draw upon. If your principal problem is arthritic pain then Methotrexate begins to seem like worth a try. There isn’t the tapering difficulty if you want to come off it I believe.
Pred is used in inflammatory arthritis - mainly for flares until any change in the DMARD kicks in. In rare cases it is used alone.
The difference is that pred works for most things inflammatory - like a universal spanner - DMARDs work for certain things. And while many people think it is preferable to take a DMARD than pred - it may well be if it works for your illness but they aren't outstanding in covering PMR. I prefer pred that works to MTX that made me feel so ill I couldn't keep on it long enough to find out if it would work for me. It doesn't even work for all RA patients and it can take up to 6 months to work that out!
I am on both and would prefer to inject methotrexate than take prednisone!
The mixed opinions show just how different we all are . I guess we just have to find the right path as an individual . I’m sure there will be one or two stumbles along the way .
Hi my rheumatologist said exactly the same long term methotrexate is better for you than prednisolone , we are trying to go on there advice so that’s why I gave it a try .
I have been very anxious about it too. Took my first dose last Monday and I haven’t spontaneously combusted yet. Feel fine so far, I know it is early days and don’t know how quickly any side effects would kick in but nothing so far. I was offered tablets not injections.
Hi , I felt exactly the same I could not get down past 6mg of prednisolone so gave methotrexate a try and have been on it now about 10 weeks . I started on 15mg of methotrexate but had to drop to 10 and folic acid 5 days just not the days you take the methotrexate the nausea was to much at 15 , I have actually felt fine the fatigue can be a bit much but it is anyway with preds and illness.
I’m debating on trying the injections it’s better on the stomach I am seeing my rheumatologist next week .
Hope it goes well for you .
Hi interesting, I take folic acid every day, including the day I take the methotrexate. Why did they tell you not to take the folic acid on the day you take the methotrexate? Just curious… ty
Apparently the FA stops the MTX working properly in some way. Somebody else will tell you how, I'm sure! I was told to leave 48 hours between doses.
Hi l’ll try & find you a scientific explanation but MTX depletes Folic Acid Levels in the Body so it needs to be replenished. However, conversely Folic Acid prevents the MTX working properly.
healthline.com/health/rheum...
How long have you been on MTX?
MrsN
I take folic acid daily. There are different schools of thought about folic acid decreasing the effectiveness of methotrexate.
I took MTx in tablet form a few years ago, shortly after being diagnosed, and it was not effective, however it is more effective in several patients if administered by injection. The doses used are far lower than used in oncology. I began injections some weeks ago now and so far have had no side effects, other than a severe headache after a glass of wine - so no alcohol. The needle is such a fine gauge that one hardly feels it penetrating the skin. I would certainly try it and see how you get on. Good luck.
I was on 10mgs of Pred when introduced to MTX for 3 months and which left me "half dead". It was then replaced by Leflunomide and I stopped after 6 weeks as I was now nearly dead. These two weren't my first time with IMMUNOSUPPRESSENTS as I had a similar experience five years earlier with Imuran but the Rhuinaltologist was persausive. ( Btw neither enabled me to taper the Pred and when I stopped taking the Leflunomide, I just went cold turkey for a month, before then re-introducing Pred and all was well at 10mgs again! And so on the basis of the above, I have no hesitation in saying "THAT IF MTX AND THE LIKES ARE THE ANSWER", THEN I DREAD TO THINK WHAT THE WQUESTION WAS".
Hi, I have been on the pill form 10 mg once a week going on four months now. I take it with food and never had a problem. I also take folic acid every day as directed by my doctor. I feel it is helping as I have been able to reduce my prednisone from 8 mg to 6. Time will tell, it takes time.
I will say however being below 5mg is great! Some say people stay on a little prednisone to keep the flair up. Why did your doctor recommended the injection? Worth a try with the pills first… best of luck. Let me know how you make out.
Same story here, but I definitely did not want MTX. I am now trying Leflunomide as I felt that was a less scary drug. Only 2 weeks in and it takes 2 months allow a quicker taper of 1 MG intervals. Main side effect so far is extra bathroom trips. Currently at 10 MG after 3 yes of PMR. I am not that optimistic it will work, only time and patience will tell.
Hi Gaz, it is scary starting a new drug. I'm in a similar situation to you with the pred. I've been on methotrexate before and am going to hospital tomorrow to have bloods so mtx injections can be restarted. I am desperate to be off pred. I've been on 2.5 - 5 mg for 4 years.
For me, I get 36-48 hours side effects from methotrexate, each time I have a dose, but have side effects every day from pred.
Happy to answer any questions but it is only my own experiences.
What sort of side effects does low dose pred give you?
From long-term pred (since 2017) - Gastric problems including GERD, raised blood sugar levels (now into the high end of prediabetes), skin sensitivity to the sun, bone density loss, weight gain, adrenal issues, mouth soreness, high blood pressure.
Over the years I have had so many stomach issues with pred , even the gastro resistant ones which I take now , I can’t take ppi’s get huge headaches from them , I take famitidine now but like all drugs they have their side effects also, my train of thought is if I get on with MTX , with timeI can rid my body of both pred and stomach drugs . I guess I will always have to take drugs for the arthritis if I wish to lead any sort of pain free life. Thanks for the reply , this thread has really started some Interesting opinions , on pred over Dmards and visa versa . I suppose it comes down to personal choices and the bodies ability to cope with certain drugs. 👍
The stomach issues are awful for me too Gaz. Even on gastro resistant, doesn't make a difference to me. I've been hospitalised twice to ger reflux under control. Long-term ppi use also giving me issues - really bad bloating and pain, polyps in my stomach. I reduced dowm from 40 to 20 of Esomeprazole a few weeks ago and that has actually helped a little.
I don't like being on any meds,but like you say,we need a chance at a pain free life. Different drugs work for different people. The benefit of Dmards over pred, for me personally, is it avoids the chronic underlying side effects I mention in my last post. Of course methotrexate isn't without side effects. Dmards and biologics actually slow down autoimmune diseases long-term, gets to the source of inflammation and prevents/reduces it, whereas steroids work daily to alleviate inflammation once it is there.
Unfortunately, we'll still need to taper off our pred, so will be on both for quite some time. I picked up some injections from hospital this morning.
When are you starting?
Got everything crossed for you x
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