Relapsing Polychondritis: Methotrexate and/or... - PMRGCAuk

PMRGCAuk

20,736 members38,984 posts

Relapsing Polychondritis

NorfolkWife profile image
6 Replies

Methotrexate and/or Prednisolone side effects? Anyone experiencing tremors with either of these drugs? Unusual hand tremor started in right hand after 3 or 4 weeks of 5mg Prednisolone. When the drug was stopped the tremor stopped. When the drug was re-started for increased symptoms, at a higher dose of 20mg a day, the tremor re-started 2 weeks later, moved to the right shoulder, then the jaw, then the left shoulder.

The condition being treated is relapsing polychondritis in a 66 year old male.

Methotrexate was started 5 weeks ago with a decreasing dose of Prednisolone at the same time (phasing off the Pred). Tremors have increased dramatically whilst taking the pred, and after 2 weeks of MTX, stroke like episode happened. Then again 4 weeks after beginning MTX, a second stroke like episode. MRI and blood tests did not reveal a stroke or TIA.

1. Has anyone experienced either tremors or stroke episodes on either of these drugs? 2. Has anyone got Relapsing Polychondritis who can share experiences and what might be alternative drugs or regime to treat it?

Written by
NorfolkWife profile image
NorfolkWife
To view profiles and participate in discussions please or .
Read more about...
6 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Hi,

You might get more information on the Vasculitus forum -

healthunlocked.com/vasculit...

Although patients on here take both Prednisolone and MTX (for Polymyalgia Rheumatica or Giant Cell Arteritis) and may help on the side effects we don’t know much about your particular illness…

Hope you get the advice you need.

NorfolkWife profile image
NorfolkWife in reply to DorsetLady

thank you!

PMRpro profile image
PMRproAmbassador

Sorry - we are "polymyalgia", a different disease so not sure about the vagaries of that. It is a multi-system (probably) autoimmune disorder but I really don't know where you are likely to find most help - the differential diagnoses seem to be more vasculitis but it itself isn't vascular in origin. It is a connective tissue disorder - maybe a lupus (amazing LupusUK forum on HU) or a rheumatology forum might have people with similar problems. Management is symptomatic - so we probably could offer some advice on some things.

rarediseases.org/rare-disea...

orpha.net/consor/cgi-bin/OC...

However - methotrexate (MTX) is a drug that potentiates the effects of pred and so increases the good and the bad effects impartially. The idea of using it with pred is that it improves the antiinflammatory action. When I was on MTX briefly, it didn't increase the antiinflammatory effect, but several side effects that are normally ascribed to pred which I had never had before in several years on pred alone appeared: constant hunger and weight gain (1kg in a month), joint and muscle aches and pains, palpitations and dizziness,

One of the drug groups known to cause tremor is corticosteroids - so if they are causing it and you also take MTX, that may well exacerbate the tremor.

It is very rare - so not a lot of opportunity to investigate alternative management protocols. There are other options mentioned in the second link I gave. However - like most a/i disease there is no known cure as such and it depends on symptoms management.

I was always under the impression that a TIA left no identifiable traces - which is how it is distinguished from a stroke. And signs of a a TIA can disappear within a very short time - in minutes, even before tests and scans can be done.

NorfolkWife profile image
NorfolkWife in reply to PMRpro

Thats all very helpful thank you.

We had one doctor yesterday admit that 'you could be experiencing side effects to the drugs'. But getting some kind of alternative medication to try so we can test that theory out is very difficult, not least because there's a huge wait in between appointments and they keep shunting us around to different departments.

I did not know that about TIA, but it seems that is what has happened as you say. No trace.

Thanks for taking time to send that, and the links. Will look them up.

piglette profile image
piglette

Have you contacted your doctor about it?

dphu profile image
dphu

I had a very bad reaction to methotrexate in September last year ~ “Methotrexate Induced Pulmonary Fibrosis”. It took nearly 3 weeks for the doctors to decide that it was something other than Covid despite the similar symptoms. My consultant had doubled my weekly injections to 20mg. Within a fortnight I was in hospital very ill. It’s a horrid drug and my body did not like it. I don’t think I will recover any acceptable lung function.😢. I would stick to the steroids in favour of the MTX

I have also recently suffered from costochondritis ~ very painful. You have my sympathy.

Not what you're looking for?

You may also like...

Speedy taper after relapse - safe?

recently experienced my first GCA/PMR flare about 10 weeks after having reached zero pred. So,...

Relapse after two weeks on 15mg Preds

I started taking 15mg of Preds two weeks ago and within hours began to get instant relief apart...

PMR possible relapse

thinking of just taking a larger dose of Pred and see how it responds after 24 hours any...

Tapering after relapse

working. He said to start 15 mg of prednisone today and to stay on for one week then go to 10 if I’m

Relapse with blurred vison

great to start another pred-journey, but the alternative is a lot worse of course ; ) And has...