Methotrexate

[Rottsuzi]

Hi a little update seen the rheumatologist yesterday (not the bad one ) I have tapered down to 10mg but I have had jaw pain and limited opening of my mouth and sore when chewing so she wants another MRI done of the jaw and wants me to start on methotrexate because I can’t get down the preds and she thinks the jaw is TMJ she’s not convinced I have giant cell but some sort of inflammation 🤔 seems strange to me . Anyway would like some advice on methotrexate before I try this . Thank you

[MrsNails]

I have written about my experiences with Methotrexate, l will attach a link you’ll find them on FAQ

Kind Regards

MrsN

healthunlocked.com/pmrgcauk...

[Rottsuzi in reply to MrsNails]

Thank you

[SheffieldJane]

If you experience any issues with your eyes or a new unusual headache, I would urge you to go to A&E and not wait for the MRI to happen. I share your concern about GCA. A well equipped optician could be helpful in achieving a correct and timely diagnosis at this stage. My Rheumatologist asked me repeatedly about jaw symptoms before my GCA diagnosis - I had none. I was diagnosed by a specialist ultrasound scan.

[Rottsuzi in reply to SheffieldJane]

Hi Sheffieldjane , were you already on prednisolone when you got the ultrasound because they are saying there would be no point with being on prednisolone for so long and would get a negative result .

[SheffieldJane in reply to Rottsuzi]

Yes I was on low dose Prednisalone - 3 mgs. You are right in supposing that diagnostic tests would be ruined by Prednisalone, it will suppress the inflammation. Unfortunately, Methotrexate will not protect your eyes. It may, if you are lucky, enable you to reduce Pred quicker. This is why you need to be alert for the signs yourself.

[Rottsuzi in reply to SheffieldJane]

Hi I am going to stay on top of this I as m back up to 12 1/2 preds the jaw pain has improved but I still feel it , thanks so much x

[jinasc]

Do as Sheffield Jane has said, probable GCA is not to be ignored and those symptoms are classic. Please do not delay A&E and if they are unsure you can ask to see the Consultant in charge in A&E.

Never forget that with GCA you sight is in danger and once total or partial vision is lost, it is gone.

Medics like the one you are dealing with, worry me. GCA can and does occur when you have PMR.

[Rottsuzi in reply to jinasc]

Hi yes I feel the same and I can’t take the risk .

[PMRpro Ambassador]

It is fair enough to want to check it isn't TMJ, it can be a differential diagnosis for GCA. But I think in the meantime she shouldn't be pushing you to reduce the pred until she is sure.

Personally - I'd also want to wait for the result of that before starting mtx especially having got to 10mg on my own. If it IS TMJ then you will be able to reduce the pred without being afraid the symptoms are GCA and that is probably the real problem, On our experiences, 10mg for GCA after 18 months isn't bad at all.

And have a look at Related Posts to the right of my screen, not sure where they are on a phone. Lots of discussion about mtx there

[Rottsuzi in reply to PMRpro]

Hi she has put me back up to 12 1/2 but it’s when I’ve dropped to 10mg that I’m getting the jaw pain and I can’t eat or open my mouth properly, can you get a definite diagnosis for TMJ ? What gets me is I’ve had pmr for over a year and now seem to be showing symptoms of giant cell and they are still looking for something else now she’s saying rheumatoid , it’s like a rollercoaster ride very frustrating

[SheffieldJane in reply to Rottsuzi]

This is a scary stage. I would want to see what 30 mgs of Pred felt like. Nothing but GCA has these consequences on the eyesight. You may be, being considered young. Even I was told that the statistics were skewed by older women developing GCA. I persisted and yes it was there in my arteries. LVV/ GCA. I just don’t want anyone else to be missed for some “ idea fix” the doctor has about these diseases.

[Rottsuzi in reply to SheffieldJane]

I felt fine on 30mg but she said I need to get down the preds and that’s why she’s giving me methotrexate.

[PMRpro Ambassador in reply to Rottsuzi]

I'm not sure what imaging shows in TMJ - not sure what different things cause it. I have TMJ discomfort that is purely muscular - and that is a common cause. My physio worked on it for most of a session within a few days of it starting and that was it with so far no recurrence. One cause of the nerve pain in TMJ is structural with an artery touching the nerve and that shows on imaging.

mayoclinic.org/diseases-con...

PMR can progress to LVV or GCA at any time - possibly especially if the PMR isn;t diagnosed or properly managed to keep the inflammation down.

I would be seeking a second opinion from someone who doesn't have preconceptions - I've seen it so often that a rheumy decides it can't be PMR/GCA and keeps looking for zebras. It MIGHT be a zebra - but it could just as well be a mule.

[Rottsuzi in reply to PMRpro]

Hi I felt fine in January I was in Dubai visiting my daughter I got down to 6mg and I came home in March got my first vaccine and I have been all over the place since then , I have went right back the way and now on 121/2 and now having to bring in methotrexate which I didn’t want to do but don’t see much choice at the moment. I feel the doctor sits on the fence with no definite answers to what you actually have it’s very frustrating 😡

[PMRpro Ambassador in reply to Rottsuzi]

I think it was a flare triggered by the vaccine - and I personally wouldn't add mtx - but that's me.

[Rottsuzi in reply to PMRpro]

Hi , if it was a flare would that have caused all the jaw and head pain even at 121/2 now I can open my mouth or chew properly , yes it could be TMJ but I can’t keep going up and down the preds like this and I can’t get below 10 without the worry of the jaw and possibly giant cell so I don’t know what else to do , I feel the same about methotrexate but I want to get down the preds I hate the weight gain and my face swollen.

[PMRpro Ambassador in reply to Rottsuzi]

If I could get to 10-12mg on my own without mtx I would happily accept that - it doesn't mean you won't get lower, just not yet. I tried mtx and only lasted a month because of the adverse effects it caused for me that were as bad as PMR without pred at all! That may not happen - but it also may not get you to a significantly lower dose of pred and it is interfering with your immune system even more, which in the current climate I'm far from sure is a good thing.

Have you cut carbs drastically? Or read MrsNails diet story, 2st in 5 months last year? Both mean weight loss is possible, even at above 10mg pred. It is slow but I have lost a good 4kg since February - without additional exercise.

[Rottsuzi in reply to PMRpro]

Maybe I should have up the prednisolone to 15 to get the jaw pain and movement back , I’m trying to get down them too quick and the rheumatologist said I can’t have you on that high a prednisolone it’s too damaging for you . I have cut some carbs but not all need to try harder , I miss my exercising a the most I’m doing is a walk .

[PMRpro Ambassador in reply to Rottsuzi]

Is it really damaging? Doing what?

[Rottsuzi in reply to PMRpro]

That’s what she said it’s too damaging been on high preds

[PMRpro Ambassador in reply to Rottsuzi]

No, I meant what effects have you actually had? After 12 years on pred, much of it above 10mg, I have no identifiable adverse effects - nothing different from most women of a similar age. No cataracts, no loss of bone density, skin's OK, gained weight with PMR but lost it again while taking pred. Cholesterol and BP were raised before - partly due to the autoimmune part of PMR causing atrial fibrillation and pred helps manage that too. I do well on the dose of pred I'm on - trying to get it down leaves me in PMR pain and the a/f is worse, it is related to the vasculitis. Less pred would mean more of other medications to achieve a lesser QOL than I have now.

[Rottsuzi in reply to PMRpro]

Nothing too bad weight , sweats, mood swings possibly well that’s what my the family would say 🤦‍♀️ Everything went out of sorts when I took the head and jaw pain back in March .

[valb232 in reply to Rottsuzi]

Having had TMJ 30 years ago, and being treated for it, it did not bother me again until about a year ago. I had a CT scan for something else, and the radiologist discovered that I now have arthritis in my jaw. The symptoms are the same as TMJ. I am going to a craniofacial surgeon for treatment. My dentist said that the doctor can probably treat it with injections (cortisone, no doubt !); I don't really want more steroids, but I guess its better than the pain I have every time I eat, and sometimes when I'm talking. I would suggest you start with your dentist and go from there with what he suggests.

Good luck to you; I know how painful TMJ is; my jaw locked a few times, which was pretty scary, so don't wait.

[Rottsuzi in reply to valb232]

Hi I was thinking of going to the dentist just to ask there opinion I went back up to 12 1/2 of preds it helped a bit but the jaw still gets sore .

[HappyDiamonds]

I have GCA and the jaw symptoms you mention are exactly what I was experiencing before diagnosis, but not the only ones. I couldn't open my mouth wide enough to eat a banana, or get a toothbrush in my mouth properly to clean my teeth. Even had problems trying to chew a digestive biscuit with a cup of tea.

Please take onboard what the experts above had advised. I hope things go well for you.

[Rottsuzi in reply to HappyDiamonds]

Hi I’m exactly same I find the jaw can be stiff in the morning , did you have any ear pain ?

[HappyDiamonds in reply to Rottsuzi]

Yes, I was never quite sure whether I had sinus problems, ear ache, tooth ache or what. Had neck and head pain as well, night sweats, lost 3 stone in weight. It was such a relief to get a diagnosis after 6 to 8 months. Tried physio when I was told it was a trapped nerve and when I rang her after first session to say I couldn't open my mouth she thought it was TMJ - Wrong!

[SheffieldJane in reply to HappyDiamonds]

I get a severe pain in the upper jaw when I begin to eat sometimes, like a kind of reaction to a strong flavour. I think I have had something similar since childhood. Does this ring a bell with anyone? Saliva related maybe - I have a very dry mouth.

[HappyDiamonds in reply to SheffieldJane]

I have a very dry mouth but blamed that on Pred. I have also had a blocked salivary gland but that is totally different as swelling happened immediately I started eating. Solved that by sucking lemons and actually felt the blockage release.

[LIVEORDIEHEREIAM in reply to HappyDiamonds]

HappyDiamonds, I get that too. I have been able to ease the pressure by GENTLY rubbing the area. It amazes me how little it takes and how irritating that pressure can be! Lemons! Not me! This was at a peak when jaw claudication was, so had me very confused! Thankfully, my Dr. saw through it!

[HappyDiamonds in reply to LIVEORDIEHEREIAM]

Thank you for your advice, not pleasant is it? Made me feel like the Incredible Hulk as I felt the swelling come up. 😀

[valb232 in reply to SheffieldJane]

See your dentist; I assume you have them in the UK😁

[SheffieldJane in reply to valb232]

Of course we have dentists. 😂. This is an odd symptom since childhood.

[LIVEORDIEHEREIAM in reply to SheffieldJane]

SJ, That's what happens to me the second I put something tart in there! And, again, gently massaging my jaw has a huge effect because the saliva will squirt out and the pressure will ease. I have had this problem many, many years and only learned the "cure" since my dx with GCA. Hope you get relief.

[SheffieldJane in reply to LIVEORDIEHEREIAM]

It’s called “First bite Syndrome” there’s lots to read about it. Who knew? I have a syndrome.