My rheumatologist increased my methotrexate to seven 7.5mg tabs a week (I take them all at once, once a week). I took it on Sunday and have been experiencing increased pain and general achiness for the last three days. As though I am having a PMR flair, but definitely related to taking the methotrexate. Has anyone else experienced this?
methotrexate giving me pain: My rheumatologist... - PMRGCAuk
methotrexate giving me pain
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27 Replies
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Most likely your dose is too low, especially if you get relief the first few days, and it wears off.
in reply to GOOD_GRIEF
Unfortunately, my problem is that the methotrexate seems to be causing increased pain, not decreased pain, for the first few days after taking it. I am currently on 52.5 mg once a week.
HeronNS in reply to
Maybe the dose is now too high? This website suggests that most patients taking mtx for inflammatory arthritis take a lower dose than you are on:
arthritis.org/living-with-a...
in reply to HeronNS
Your reply made me double check the dosage. I made a mistake in my post--the methotrexate tabs are only 2.5 mg as you noted, making the total only 17.5 mg a week--much lower! Thank you. As the symptoms have now lasted almost 5 days, I am thinking that this is a full-blown PMR flair and not a reaction to the methotrexate. Ah well...the roller coaster continues.
HeronNS in reply to
Judging from what others have sometimes posted, including on this thread PMRpro, I wouldn't be so quick to dismiss mtx as the cause of the pain. And, surely, if mtx were doing the job it's supposed to you wouldn't be experiencing a flare???? But what do I know, never tried mtx! Hope you feel better soon, whatever is causing the aches.
Phew - that's a relief! But my aches did last most of the week - and it is a bit off-putting when the stuff meant to be making it easier to reduce (maybe) actually causes a flare!
in reply to GOOD_GRIEF
It’s usually only up to 20mg as a Steroid Sparer & 30mg for RA
PMRproAmbassador
Seven 7.5mg tablets? Are you sure - I thought the tablets came as 2.5mg. And 52.5mg is a very high dose for using alongside pred in PMR - it is usually up to 20mg.
But yes - one of the reasons for my deciding I'm not going to continue with the methotrexate experiment was that I experienced aches and pains that were just like PMR was in the 5 years I had it without pred at all. The fatigue became overwhelming after the first 2 weeks. I itched and had a few other niggles - none of which alone would have justified saying no, but to feel worse than I did without pred is NOT acceptable.
I really would query that dose though - it is very high. Normally the dose used in RA is up to 30mg
in reply to PMRpro
Several replies, including yours, made me double check the dosage. I made a mistake in my post--the methotrexate tabs are only 2.5 mg as you noted, making the total only 17.5 mg a week--much lower! Thank you. As the symptoms have now lasted almost 5 days, I am thinking that this is a full-blown PMR flair and not a reaction to the methotrexate. Ah well...the roller coaster continues.
As Heron says - keep an open mind. I wondered if it were a flare - and since stopping the mtx I feel fine, whereas before I felt worse than I did with PMR and no pred, though with less joint pain.
in reply to PMRpro
Thanks- I am thinking the the methotrexate is not doing the job it is supposed to as I am now up to 20mg/day of prednisone--when I tried to taper ended up with a major flair. Are there any alternatives that you have tried? Disease modifiers such as Humira?
Humira doesn't work in PMR/GCA - the biologic for them is Actemra/tocilizumab. Then it depends where you are - in the UK tocilizumab is only approved for GCA under certain circumstances and would not be available for PMR at all. It is being used for PMR in the USA when patients can get funding.
No - personally I am very sceptical about the so-called steroid-sparers and I really only tried it to humour him! I don't think any of them are much better - although a friend with a PMR diagnosis was able to reduce her pred dose using mtx and last year got off pred altogether by using leflunomide. Now she has to attempt to get off it! She says she felt it "kick-in" one day and felt totally different. so - was it really PMR?
in reply to PMRpro
Thanks- I am in the US--I appreciate your input. I was diagnosed in late September 2017. I had discontinued using Advair 500/50 inhaler for asthma for over 2 years. A week after stopping the Advair, I was in a world of pain, as though every tendon in my body was inflamed. I had terrible stiffness and pain in my legs and feet and it was difficult to walk. At that time, I did not have pain in my shoulders, but had terrible pain in my elbows, wrists and hands. My other symptoms included feeling "fluish" and unwell, as well as having some brain fogginess. I was started on 10 mg of prednisone and had a great response within a few days--pain and stiffness reduces, brain fog gone. By December, however, I was at 20 mg prednisone and started on methotrexate. Since then, when I have tried to titrate down, I have had a return of symptoms--though this most recent "flair" was not triggered by trying to reduce the prednisone. I only know a couple of other people who have PMR and don't know where my symptoms fit in with "typical" symptoms of PMR. Feeling a bit discouraged and confused at this point. I have a decent rheumatologist, but she is not an expert in this disease and more recently wondered if I just have tendonitis. I have had plenty of tendonitis in my life (was very athletic), but my experience of this is that it is systemic and not localized. Are my symptoms similar to what others with PMR experience? Could use some help. Thanks.
The symptoms you have just listed there are VERY typical for PMR. There are other things that could mimic it in the early stages though. But I wouldn't include tendonitis - what a strange idea...
Tell me about how you have attempted to titrate down from 20mg. It sounds to me as if you had had it for a while at a low level but the inhaled steroids were enough to manage it. Since you stopped them the activity of the underlying autoimmune disorder that causes the symptoms we call PMR has increased. Did you have raised sed rate and CRP? Have you any other symptoms?
in reply to PMRpro
I was at 20 mg in Jan and went down to 15mg then after a month went to 12.5. At 12.5, I had a major flair, went back up to 15 with he plan of titrating down by 1mg each month. At 14 mg, was feeling bad again, so back up to 20mg at the end of June with a plan to titrate to 17.5 - first alternating with 20mg for a week. I have scheduled appt with the rheumatologist in August, but am planning to try and see her sooner. The plan will still be to titrate down more slowly.
The only elevated marker I have is ANA, which has been consistently elevated since I was first diagnosed. All other markers have been normal--SED rate, CRP, etc. I had a mildly elevated Cyclic Citrul PEP AB, IGG = 28 U/mL (called a week positive) in December 2017, but it has not been tested since.
My only other symptoms started with tendonitis in the plantar fascia, which then became a problem in both feet. The podiatrist ruled out plantar fasciitis. As my symptoms progressed, my feet became increasingly painful--I had to wear a boot on my right foot at night to keep it extended, otherwise I would wake up with my foot cramped up and in pain. I also developed severe stiffness in my legs--if I sat for 5 minutes, I would stiffen up and have to shuffle for a ways before I could walk normally. With the prednisone, the pain in my feet has gotten better, don't need the boot at night, and the stiffness has gone away.
One of the things that I find hardest during a flair is the brain fog I feel. It is hard to focus and feel out of it. I am still able to function pretty well, but not at the level I want to--which is pretty high. I am 67, but have enjoyed being incredibly active until this hit me. Hard to figure out how to live with it, especially when my doc does not seem to have a really good handle on PMR. Appreciate your input very much.
How much are you trying to do? The pred only manages the inflammation - and a lot of the rest is up to you with pacing and resting appropriately - lifestyle changes are pretty important.
I think lot of your problems are due to having tried to reduce too fast - and unfortunately once you get into a yoyo pattern with pred it is not unusual to have problems. In the very early days of our push of slower reduction there was a lady who'd had a similar experience. She had to go well above 20mg to be able to get her symptoms under control and then any time she tried to reduce she flared. She was probably the first person still at high doses who we suggested 1mg reductions - it worked and she eventually got to below 10mg without any problems.
The brain fog WILL improve - but it may take a while. I'm pretty sure it is the PMR that does it although some people blame pred. So of course - it could well be both!
in reply to PMRpro
I am probably doing way to much!!! I am selling my house, Board President of a non-profit, Council Secretary for another no-profit, setting up a consulting business, socializing and trying to get in some exercise. Having a hard time figuring out how to slow down, though the PMR does a pretty good job of doing it for me. I have always been very physically active and even at the age of 67 am strong and fit. So this is a hard one for me. I cannot tell you how much I appreciate your input--especially about the brain fog--for me it is definitely the PMR and not the prednisone --if anything, the prednisone helps me think more clearly and focus more easily. I will work with my rheumatologist to titrate slowly, slowly. Also, as I write to you about all that I am doing, I have to slow things down--substantially.
Warm regards
You do - that is obvious!
Have a read:
healthunlocked.com/pmrgcauk......
And learn to use the most important 2 letter word in the English language: NO
You can qualify it in many ways to make it less harsh - but you have to make use of it and put YOU first.
in reply to PMRpro
Thanks for the link--the articles were helpful. Pacing is my new mantra :))
Hi
Are you sure they are 7.5mg? As they are usually only dispensed in 2.5mg, l take 8 making 20mg
The 2.5mg Tablet’s are a standard so people don’t get mixed up with their dose.........
Mrs N x
My Rheumatologist only prescribes up to 20mg as a Steroid Sparer & 30mg for RA
I’ve doubled checked & there are only 2.5mg & 10mg Tablets. In my MXT Record Book it explains why they only give you 2.5mg Tablets due to the risk of overdose.
Check your Tablets & let us know.
The highest dose I was on was 17.5 once a week (7 x 2.5). I have been on Methotrexate for about three years mainly at 15 mg a week for GCA. It is impossible to say if it has helped with steroid sparing. I have not had any problems with it.
I am very sorry you are experiencing such pain. I do hope it improves.
Penelope
I was on the methotrexate injections once a week. I don't remember the dose but I know it was low. I did not tolerate it. Still had stomach upset and lots of swelling. Was on it for 1&1/2 yrs. It probably helped with the inflammation but did not help in lowering the prednisone. I finally went off of it but the Dr. wants me on plaquinil now (sp?) I have a dr. I like a lot but wants the 15mg of pred. I am currently on to be reduced to under 10 as fast as I can. That just isn't going to happen very fast. Sure getting difficult to keep it all straight.
Good luck with the Methotrexate
Lin
Everyone’s chemistry is so different. I have some energy and little pain one day or some days. Then have no energy at all for a day or week. I can see no pattern, though increased stress and strenuous activity will wipe me out for a week. Work closely with a rheumatologist, they will help to see what drugs and dosages work best for you. Methrotrexate did absolutely nothing for me, but people have responded favorably. Find a rheumatologist you trust. My first rheumatologist’s assessments made me feel uneasy, so I changed to the doctor I am with now. As any profession, some are better than others. Find a doctor you trust. Make an appointment if you feel concerned. . It takes a while to understand what is normal for you.
I take 6 tablets (15 mg) every Thursday night. The only side effect I have experienced is extreme fatigue, which is the reason I take it at night rather than earlier. I have never experienced pain as a result of taking Methotrexate but, as others have pointed out, you seem to be on an unusually high dose. I think in my case it has done its job as a steroid sparer, as I have had no flares since I started taking it.
How long have you been taking methotrexate?
I am now on week 9 of 15mg a week and 13.25 of pred, in the first 2 weeks no obvious effect on anything, weeks 3 to 6 increasingly horrid side effects, digestive and swollen mouth and exhaustion for about 4 days.
Weeks 7 an 8 not too bad side effects.
GCA flair slightly better but then after 8 weeks it might have done anyway!
Pharmacist and a stand in GP say that the mtx does settle down, interestingly the rheumatologist consultant didn't, so I nearly chucked it in about week 6!
Seeing consultant soon so will see what she says, as constant headache is getting to me.
I think I need more pred not more mtx and believe me I really know dark side of it.
It is so difficult with this thing to know what is disease, what is treatment and what I am imagining - this is my consultant who talks about placebo effects being both good and bad!
Best of luck with the meds!
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