PMR , dr added Methotrexate with my prednisone. Feeling hung over and hurting more than before. Has anyone had this effect? I’m fatigued all the time, hips shoulders , just kill me know. Wants me to taper to 7mg , but everytime I try it throws me back at least a week. Any suggestions??
Methotrexate, and prednisone : PMR , dr added... - PMRGCAuk
Methotrexate, and prednisone
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Huntinghelp
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DorsetLadyPMRGCAuk volunteer
Plenty of posts on MTX - have a look in FAQs MrsNails has written extensively on her experience with it -
healthunlocked.com/pmrgcauk...
Thanks! I’ll take a look
PMRproAmbassador
That's how I felt on MTX - I lasted a month. I felt worse on MTX than I ever did with untreated PMR for 5 years!
Post MTX dose "flu" is very common but it usually only lasts a day or so. It is used a lot in RA and patients often take it Friday evening so they can get to work on Monday!
Thanks. I’ve been on it a month and just have no energy and hurt worse than I have since I was diagnosed a year and half ago.
Yup - recognise that!
I have tried it 3 times. I can reduce the pred but feel bad doing it. You may be trying to reduce to soon. I was always told it take about 3 months to be affective in reduction of pred. Even with the Metho. I had to reduce by 1/4 mg very slow method, and I waited at least 2 months after being on metho. before I tried to reduce.
I was able to go from 16mg to 13 &1/2mg.
Good Luck
Hi, sorry about all the questions 1, what dose of Pred are you on?
2, What dose of MTX are you on?
3, How long have you been taking it?
4, Are you drinking plenty of water?
MrsN
I’m on 8mg of prednisone daily and a folic acid pill. MXT I’m on 20 mg once a week. Yes get plenty of fluids. I’m just so fatigued after a month of MXT and just hurt bad in hips and shoulders. Barely move by mornings, socks are a chore. But I live on a farm so o have no choice but to get up and do what ever I’m able on farm daily. But spring is around corner, chores going to increase 100 times, and I got to get back to somewhat normal as possible
I took my 5th dose of MXT on Friday
There was another farmer on recently -with obviously same issues - but cannot remember who. Should do, as have farmers in family, so of interest.
Do you have arable and livestock? Any help at all, or a one man band?
Mostly one man band. I don’t have livestock at moment. I mow my hay fields and sell the hay. I raise vegetables and sell those about a couple acres worth, which my wife helps in when time to pick. Then we trade out hay for a steer we process every other year for beef. And have a couple hogs
Ok….not too much in livestock then, which makes it a little bit easier….although as you say, spring will be busier.
Hopefully in another couple of months you will feel a bit better….but thing t9 need to discuss MTX with Rheumy/doctor…it doesn’t suit everybody.
How were you managing previously when just on Pred? Any specific reason MTX introduced?
Yeah prednisone I was doing good on. My Dr felt I needed something to try to get to 5mg. So he introduced MXT. But first 2 weeks upset stomach bad, then next 2 just real tired and hips, shoulders hurt like they about did before I started prednisone. Not as bad, before I couldn’t sit long, where ever a edge of seat hit back of my legs it hurt like crazy. I couldn’t driver over 7 miles before stopping to get out and stretch some before going 7 more. But that’s bad on a tractor I had to get on and off every 10 mins. So that is still better. But the soreness, and unable to bend well has got bad.
Well personally I would say you need slightly more Pred - and no MTX.
Too many doctors believe PMR is over in 2 years - it may be for some, but for an awful lot more it’s nearer 4 years or even 6.
So long as it’s carefully controlled on correct amount of Pred, you can still have a reasonable life and carry on working - with some adjustments.
Many docs seem to have an irrational fear of Pred, and what to throw other meds into the equation.
Think you need to discuss a better way ahead with your Rheumy - you want what works best for you -not him.
Omg I'm only into my 3rd week of Pred and can't believe what I read. I had absolutely no idea whatsoever just thought it would go and I'd be as fit and healthy as before... 😢
Me too! Probably believed this for about two months before learning otherwise. 🙃
It's going to take some getting used to, just can't walk, jog, run, basically move very fast first thing in the morning and then again around 4pm have awful muscle fatigue, pain, and take paracetamol. It's happening daily now.
I was a lucky one. My 15 mg pred sorted me completely, and I had no fatigue until my dose was down to much lower levels. Nevertheless I've been on pred since 2015, with attempts to taper to zero not ending well. My lowest best dose in all that time tends to hover around 2-2.5 although I have been lower, and with a flare quite a bit higher Back to the low levels again, took a year since flare! And have aged considerably. I cannot do now what I could easily manage when I was first on pred. Pred is a two-faced friend, but I still need him!
I have same issues. I’m good after morning prednisone till around 4pm then stiff and sore till next morning dose
Are you trying to do too much in the morning? It is all about pacing on your part, it is never JUST the pred.
The other possible answer is to split the dose - the antiinflammatory effect of pred only lasts 12-36 hours depending on the person. If you are at the low end of the range then symptoms will reemerge once the pred wears off - although 4pm is very soon really which makes me think you may be trying to run before you can walk and probably on slightly too low a total dose.
healthunlocked.com/pmrgcauk......
Yeah I got to do all my work on farm in mornings. Luckily it’s February and not as much as usual to do, but working on cleaning fence rows and mending fences, and just trying to get grounds plowed for spring plantings. It’s always something that needs done on the farm
In that case - I'd really try to take the dose earlier in the morning and split it too to help the evenings. It's always worth a try. And we know that people who have to work do tend to need a bit higher total dose. Often doctors don't get the need to work to get money to live though!
I split my dose and it works well for me. 6am 2mg and 6pm 3Mg. Will go down to 2 1/2 and 2 1/2 soon. Fingers crossed. I was taking MT but stopped it.
On the days I work other than horses I have started taking Pred around 4am then I'm OK for getting up. Trying to explain to a Dr that you can't just slow down, take it easy, the horses wont understand till they can go out full time in spring. My daughter and son in law farm milk, 250 pedigree holsteins with 5 Robots always plenty of work here 😏
Oh dear, not quite as simple as that…perhaps you need to have a read of this post - and prepare yourself for the long haul.
You will be fit and healthy again, but not as quickly as you may think.
One thing to bear in mind is that MTX might help you get lower in terms of PMR (but certainly not for everybody) it won’t help you breeze through the low adrenal phase. If you rush the reduction between 7-zero mg you can hit trouble with adrenal insufficiency. Some docs do seem to forget this. Do read the FAQ’s on adrenal function because you need to know. I also found dropping in 0.5mg steps every 4-14 weeks (depending on how I felt) instead of 1mg made life doable, though not always easy.
Cycli
Somebody else as well - only posted once I think…
As you say Prednisone, are you in the USA? Are you just looked after by your Doctor or to you have access to a Rheumatology Team with Nurse Practitioners? The first think that’s strikes me is maybe as well as the effects of the MTX your dose of Pred may not be keeping your symptoms under control & you’re also at around the Physiological Level of Steroids which is approx equivalent to the level of Cortisol we need anyway…….
Sorry but more questions - how long have you been diagnosed & how fast have you reduced? Have you ever felt better since starting the Pred?
MrsN
Was diagnosed a year and half ago. I have a Rheumatologist and nurse practitioner I see every 3 months, they do labs every visit. He has me to drop a mg a month when I can. I was trying to go to 7 but had to go back to 8. Yes when I was first diagnosed after about a year of wrong diagnoses I took prednisone for infection I got from honey bee stings, I rais them and while pulling honey got 30 stings. But prednisone was a notice stopped all my pain for most part
Then l’d suggest you ring your Nurse your Practitioner as they are very knowledgeable & they may give you a new regime. When did you last feel OK on Pred ie what dose? maybe they’ll suggest you can go back to that dose & continue with the MTX
MTX was no walk in the park for me but l persevered as l really didn’t have a choice as l was suffering badly from the side effects of Pred
I’ve had a couple of very good Rheumatologists & l started MTX at 18mg of Pred but they both recommended l drop by 1mg to 10mg & from then on by 0.5mg
I’m now on 25mg MTX by auto injector & l find it better than the tablets. I take 5mg Folic everyday except MTX Day. I’m currently on 10mg Pred & the Plan is to drop 0.5mg from 1st March.
I hope that helps & let us know what your Nurse says? MTX doesn’t suit everyone & does take some adjusting to….
Good Luck
MrsN
Will do! I was hoping it was maybe this drug causing it and not something else. I felt a lot more “normal” at 10 mg. But he wants me to get as low as possible, as do I. I’ve gained 30 lbs on this crazy meds. But it’s only thing that has helped the pain. Thanks for your help!
For weight gain - cut carbs….
I found 10mg to be a good dose for feeling I was ok and life was doable. Below that it gets harder because the false energy isn’t there and if you are too low for PMR it’ll certainly start to show and as I’ve said before your adrenal function needs to kick in but usually doesn’t straight away. Very very low carb diet is how we keep weight and blood sugar in check. ‘Healthy ’ diet alone doesn’t cut it because of the way Pred affects your metabolism.
Hi Huntinghelp, my husband who has Giant Cell Arteritis, was put on Methotrexate with Prednisone coming up to 18 months, the Methotrexate is supposed to work in such a way to allow prednisone to be reduced and eventually come off these steroids, it does not work this way at all, my husband managed to take 7mg prednisone but the flare ups started, back to 10mg gradually tapering prednisone but every time he is down to 7mg same thing happens, the hospital now has asked him to stop Methotrexate, and the thing is he is on 7mg prednisone now and no flare ups ! it just goes to show methotrexate did not work, these doctors are experimenting ! Good luck.
Yeah mine told me he was hopeful it would work, as they want me to get down on prednisone. But I can’t take feeling like this everyday. I’ve not felt good since I started taking it. I’ve came down but had to increase. But I felt best at 10mg. But he thinks that’s to high of a sustained dose. I feel for your husband! I hate having to ask my wife to put socks on, take off, shoes, sometimes shirts because I can’t raise my arms.
It took me 4 years to get below 10mg reliably. I had a real relapse of the PMR when I was down below 5mg and was back to 15mg. And one way and another - it's taking over 4 years to reduce yet again.
Some people don't absorb as much of their oral dose as others - and so they appear to need a high dose. But they may not have bad adverse effects either - I have no loss of bone density, no loss of muscles, absolutely no sign of steroid induced diabetes (my Hba1c is36) and no other problems.And that is at 15mg for at least the last 2 years and some of the time above it. Not everyone reacts the same.
I honestly tells me to stop the MXT. I just feel awful on it. I was hoping maybe it was the meds instead of just me. But think it’s made me worse.
Hi there. I can’t add anything helpful but totally sympathise as that reflects my experience. In my 7th year of taking Pred I had reduced to 6 mgs and then MTX added. I tried for 6 months , tablets first then injections . Felt really lousy and exhausted and developed another inflammatory auto immune disease which has reached the parts PMR couldn’t 🤣particularly all the tiny joints in hands and feet.My rheumie hasn’ t contacted since , doc says they can’t help and I have an appointment to see Dr Rod Hughes (I’m in the uk )as a final attempt to try and understand the condition. This forum has been my only source of info . It’s tricky when you love your work but it can be heavy , I know . When pain is bad, driving around , I have to get into third as quickly as possible and stay there which isn’t easy as where I live is very uppy downy 😂🙈Hope you find a way through and spring brings plentiful growth 🌈
Given that the first line approach for almost all inflammatory arthritis is MTX - it obviously is a "fail" for you. So they should be moving on - before damage is done. They make a fuss about not seeing patients early in RA and co - doesn't seem surprising it happens though!
It works for many people but not everyone--like most medications.
I have been on pred almost 4 years for PMR. Started at 20mg and tapered down to 9mg. Been stuck at that dose for the last 2 years, and every time I tried to lower to 8.5mg, I flared.
I started Methotrexate Jan 4 of this year to help me taper my pred dose down. I’m one of the lucky ones in that my weekly injection of 25mg of MTX has caused very few side effects and I’m almost down to 8mg. My goal is to get down to 5mg, dropping 1mg every 6 weeks.
Mind you, I also had few side effects with pred either (changed my diet to low carb), but decided with my GP to see a rheumatologist to try and reduce my pred dose. At 9mg of pred alone I had very little pain and stiffness. I still don’t with the MTX, nor do I experience fatigue (yet).
It sounds like 10mg of pred is the lowest dose that addresses your inflammation to make life liveable. The MTX is obviously not agreeing with you, so a discussion with your rheumy, sooner than later is in order. You tried.
Most medical professionals want us off of pred ASAP. Despite wanting that too, our bodies don’t always follow the text book treatment plan. I could never go back to living with chronic pain and stiffness, hence why I stayed at 9mg for 2 years (while trying to taper every 6 months or so). Your physician is not the one living with the symptoms you are enduring, and I wouldn’t be considering lowering pred dose any further at this time.
We must advocate for our health and try to adjust along the way as PMR rarely affords us the same physical capacities as prior to diagnosis. A balance of rest and activity is key, so try and build up your activity slowly to meet the demands of springtime farming. Eventually you will figure out what medication and doses are needed, along with lifestyle adjustments, to be comfortable and functional.
I was diagnosed with PMR two and a half years ago. Managed to get down to 9mg prednisolone last year and then had my first big flare. Was off work for two months. I increased to 14mg. Rheumatologist started me on 15mg MTX September last year, ‘to get me off the steroids’. I had read it can take up to three months to take effect so didn’t start reducing until December. My GP was happy with this. I’m now down to 11mg. I have had additional pains since the flare but they seem to have gone this week. Spoke with Rheumatologist last week and he didn’t appear too happy that I wasn’t lower with Pred. He wants me to reduce 1mg a month for the next six months until I speak to him again. He suggested MTX may be increased. I explained that I was reducing using DSNS. To be honest I I will do my own thing until then and listen to my body.
My major issue since last summer has been fatigue which I was putting down to the PMR, but now it’s appears I have sleep apnea. Lucky white heather! Now been referred to a sleep clinic.
Hope you better soon! I’m just glad it’s not in my head like some folks think. But my dr has been good with me. He tells me to go down if I can tolerate. But think I’ll be asking to get off the MXT if this don’t change in next few days.
It is good that your dr is understanding. That is a big help. We’re all different and we have to do what suits us best. Hope you start to feel better soon.
I'm taking 20mg via a relatively painless sub cut self injection once a week. The side effects seem to be minimal. It seems to be better tolerated via this route of administration. I hope you get some resolution soon. Good luck.
I have just come off MTX as the fatigue was unbearable. I tried the injections as well and it didnt improve. Some people it just doesnt suit.
Tried MTX felt worse & my hair started to fall out! So stopped after aprox 4wks. I'm on Pred & just trying to taper. I get very depressed, wake early feeling extremely anxious & I'm not sure if that's the steroids or the PMR - & of course it could be other factors in my life. Not being able to exercise properly (in the gym & on a rowing machine at home) does not help either. On the positive side after aprox 18 months I seem to be improving so keeping my fingers crossed! Keeping a positive outlook on life would appear to help recovery, but that has been difficult with the pandemic, & to go further, for some people, the fall out from Brexit - the country needs bringing together rather than the sowing of disaccord. So I'd keep away from MTX unless you really need to, it's used as a cancer treatment.
It is used as a cancer treatment at totally different doses - far far higher in chemotherapy than in rheumatology. You cannot compare the two situations.
As PMRpro has said it is used as Chemotherapy but at significantly higher doses. As someone who has had Chemotherapy & Methotrexate you simply cannot compare the two……
Yes MTX is used at much higher doses for cancer - but at a lower dose for PMR my hair DID start to shed & is noticeably curlier than before taking it, which has been commented on by friends, so it's not something that I'm just imagining. It would appear that some people can tolerate MTX & others not so.
Hello,
I have GCA not PMR so luckily don't suffer your pain symptoms - however, yes, as soon as I had Methotrexate added to my Pred (last July, I think) I felt even weaker and more wobbly, and sleepier. It seemed to exacerbate the Pred symptoms, in other words. Do hope you can sort it out.
Yes - for me the MTX resulted in side effects that are usually blamed on pred and which I'd never had before with prednisone or prednisolone. I had had them with methyl prednisolone though - that was truly awful!!
Wow! Thanks! Hope you get better
I have found that I really had to advocate (fight) the rheumatologist at every turn. They are on a relentless push to zero steroids and will try just about anything else to get you there, side effects be dammed. I refused MTX and my dr. was very frustrated with me. They were not happy with my rate of reduction either. At first I let them bully me into continuing to lower because my bloodwork was fine despite my symptoms slowly returning which resulted in me having to raise my dose again anyway. Eventually I succumbed to trying plaquenil which did seem to help a little however it started to destroy my liver. The dr. tried to say that plaquenil wasn’t the cause and I must be drinking alcohol or taking too much tylenol neither of which had I taken the entire time I was on plaquenil. That was the last straw. I fired the rheumatologist and asked my PCP to manage my prednisone taper. It will be 3 years in May for me. I am down to 2.5 mg. I takes me several months to get down another 0.5mg. I had a flare after my covid vaccine that put me from 3 back to 9 so getting back to 2.5 I think is very good. All this to say…. I learned that I can say NO… I can make choices about what doctor I will see… I won’t relentlessly push to zero at the expense of suffering… I still need to rest a lot and I do have stiff days and some pain on taper days so I try to balance that with less activity and the higher dose the next couple of days. I may never get to zero and I hope my PCP ends up okay with that. I will keep trying but at this point, it’s so low it’s not worth suffering just to say I did it! Personally if I were you, I would tell the rheumy that I was coming off MTX because of the side effects and increase the prednisone slightly for a bit to get back to where I was feeling okay. Then slowly start to taper again. It’s up to you if you want to try other things to get off the steroids. There are other things that can help some people but it all comes down to the side effects and effectiveness of the drugs for YOU personally! It’s worth seeing what they can offer you but read up on the side effects. And personally, I would want to be recovered from the MTX side effects before jumping onto another attempt of something else but I am conservative like that. I hope you get can get relief soon!
MTX gave me terrible malaise. Some days I had to go back to bed. Now, I eliminated it ( Dr. doesn't know yet 
I am on 10 mg Pred and never felt better since this nightmare started.
I also had hair loss and curly hair...i cut down to 5 mg meth a week and plan to stop soon...rheumy says as long as i am on pred, after 3 years down to 2.5mg, i must continue meth but having blood checked every 6 weeks, now 3 months is tiresome . I learned to be my own doctor.
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