1st Dose of Methotrexate

[DianneRose409]

I just took my first dose of Methotrexate 7.5mg. Is it fair to say that I felt some weird effects within a few minutes or am I just crazy?

[SheffieldJane]

Are they on the list of side effects?

Or like me, are you sitting in a state of tension, waiting for the weirdness to begin?

[DianneRose409 in reply to SheffieldJane]

I have been apprehensive since finding out I might need to take it. Not sure what I feel...just hoping it works.

[yorkieme in reply to DianneRose409]

I had my first dose (15mg/week) a week ago Friday,Folic acid Saturday. Not sure what you mean by weird side effects but I have suffered seriously with nausea starting mid week through to last night when I had my first serious food,a bowl of soup.

It does mention Nausea in the side effects but this has been something else,I took an extra Omeprazole yesterday,Sunday, as I couldn't contact anyone for advice and by last night it had eased up.

Like you I have been reluctant to take MXT.In my case because of the negative comments that I have read but my rheumatologist believes that Pred' has caused me some damage. Here is hoping it settles down. Good luck for the future.

[SheffieldJane in reply to yorkieme]

My Rheumatologist urged it on me very positively and compared it favourably to Pred. I am now on Tocilizumab. I have managed to taper the Pred very quickly. I am however, utterly wiped out. Not sure if it is the rapid taper or Tocilizumab. Others on here have not reported an adverse reaction to Tocilizumab.I have tapered from 40 mgs to 9 mgs in a matter of weeks as medically advised.

[yorkieme in reply to SheffieldJane]

I have to confess that much of the discussion regarding the various medications leaves me feeling a bit dumb,simply because I haven't a clue which are prescribed for a particular illness.

I am taking 20mg Pred' but my rheumy wants me off it,I understood that to mean completely off it but others have said no,you will still be on a lower dose even with Methotrexate. Although I now understand the value of Pred' generally (thanks to you and such as PMRpro plus others for helping me water down my initial visceral dislike,)I personally have had so many side effects such as cushingoid,weight increase,insomnia,oral thrush,fluid retention, fatigue and now a belief that it has caused me bone damage that I would just like to come off completely.

I have just received a tapering plan which brings me down from 20mg to 10mg over the next 11 weeks with the statement that "it is imperative that we reduce the steroids as this is causing the majority of his complications."

Is Tocilizumab the same as Methotrexate ? Will I end up staying on a low dose of Pred'? It is clear that I have a systemic inflammatory problem but my rheumy says it isn't PMR one minute then later on suggests it may be the onset of PMR They don't know because I was put on Pred' before seeing them and hence they have been unable to solidify the diagnosis.( I have had other issues such as pneumonia etc, which appears to have caused problems,i,e, hospital doctors/consultants, G.P.'s and Rheumatologists adding or removing or reducing medication,)

So,sorry for the ramble but maybe you can help explain one or two things for which I would be grateful.I feel a bit guilty asking all the time but it is a great source of info' for people like me.

I hope you are finding your energy levels are picking up,maybe it's a transitional issue a bit like tapering that's hit you but whatever it is it isn't nice. I am still learning about the impact of emotional stress on my illness but in particular what happens when I have a manic day.All these things to think about ?

Once again thanks for reading this,maybe it helped you sleep ?

[PMRpro Ambassador in reply to yorkieme]

For 50% of patients with GCA tcz gets them off pred altogether. The other half need a much lower dose. There is no way of assessing which group you belong to until you try it. Assuming that PMR and GCA have the same underlying cause, you would assume this may be the case in PMR patients. If it isn't PMR, i.e. is not due to IL-6 causing the inflammation, tcz probably won't work at all.

[SheffieldJane in reply to yorkieme]

We are all here to share experiences and wisdom gained, so don’t worry about that. I avoided Methotrexate because nothing I read suggested that it would be likely to help much and the side effects sounded daunting. On the other hand Ro-Actemra/Tocilizumab sounded more positive and the anecdotal evidence was good. It is prescribed for GCA patients who have had difficulty coming off Pred and perhaps drugs like Methotrexate have failed. It may even strike at the heart of the disease not just the inflammation. I have found tapering much easier with little or no pain. As I have said before, I experience sleep disturbance at night ( possibly when Entric Coated Prednisalone hits my system 2-3 am.) I am on 9 mgs.of Pred now. Then utter exhaustion after lunch and again around 4 pm. A swooning fatigue that is impossible to resist. I can adapt this into my routine as long as it is not harmful. I have noticed breathlessness when doing simple things like putting a sock on - this is new and I will talk to my Rheumatologist or the nurse. I am encouraged about the reduction in my Pred dose as I have suddenly developed side effects like steroid induced diabetes and cataracts. I hope that I can stick with it. I was lucky to be allowed to try it. It does not suit everyone. Methotrexate is a different type of drug to Tocilizumab. I believe that it is an effective arthritis drug. Tocilizumab is a drug used in the successful treatment of Rheumatoid Arthritis and has found to be effective for some forms of GCA. It was only authorised 18 months ago.

[yorkieme in reply to SheffieldJane]

Thank you for your reply,it's starting to feel less familiar and more normal to say to you and others your good health is in my thoughts and best wishes,and they are.Take care.

[lindyloy in reply to SheffieldJane]

Again, I have breathlessness sometimes, I always have when tapering Pred. I had a Synacthen test last year and am also taking Hydrocortisone as I wasn't producing enough, it was interfering with my sleep, so they reduced the dose. I was always wrecked in the morning with fatigue while on Pred. and leflunamide, I feel much more refreshed and energetic with Tocil. until after tea-time when I feel I could sleep on a clothes line!

[PMRpro Ambassador in reply to SheffieldJane]

A couple of people have mentioned excessive fatigue with tcz. It isn't common I don't think but it happens.

[lindyloy in reply to SheffieldJane]

Hi Sheffield Jane, I too feel zonked with Tociliz. Icouldn't sleep with Pred., now I'm out for the count with the injection, not so much fatigue, the sleep thing. I have just tapered down to 3mgs. of Pred along side it, I don't know what will happen after the years treatment ends, just hope for the best I suppose?

[PMRpro Ambassador in reply to lindyloy]

Is it the injection? Was it the same from the start? Some doctors forget that the tcz only deals with the IL-6 - it has no effect in persuading the adrenal function to return.

[lindyloy in reply to PMRpro]

Sorry PMR pro, just noticed your post, got it wrong, I'm confused now , the injection I think has worked, I feel more energised now, less fatigued, more sleepy. I was supposed to have a follow up Synacthen test, but with all that's going on, no joy there, I'm struggling to get advice about my blood tests which are due! My G.P.s receptionist advised me to write to my Dr. to let her know what's going on, alas I'm lost, hey ho!

[SheffieldJane in reply to lindyloy]

I have been told to have a Synacthen Test when I reach 5 mgs to ensure that my Adrenal glands are still capable of producing my body’s Cortisol requirements without Prednisalone. I may have to take low dose Pred for life, if not.

[DianneRose409 in reply to yorkieme]

Many thanks.

[MrsNails]

What kind of ‘weird effects’?

[PMRpro Ambassador]

If it was within a few minutes it could be association - it takes about an hour to be absorbed in the first place, I have heard people tell me their first dose of pred resulted in a reduction in symptoms in 20 minutes - objectively, not possible!

[DianneRose409 in reply to PMRpro]

I guess I was just apprehensive. So far, a little less than 12 hours later I feel a bit better. Can't wait till all my joints feel that way at 100%

[PMRpro Ambassador in reply to DianneRose409]

As I just said on another comment - if you are on injections that is a very different matter! It's there straight away.

[DianneRose409 in reply to PMRpro]

Almost 12hrs since my first injection of Methotrexate 7.5mg subcutaneously and already had 2 bouts of diarrhea. Wish me luck. Have a 10 hour shift today.

[PMRpro Ambassador in reply to DianneRose409]

Oh joy!!!! There are acceptable adverse effects - and some that just aren't ...

I know a lot of RA patients take their mtx on Friday night so that all their side effects are over the weekend and they can go to work on Monday. Not sure I could cope with never having a weekend or a substitute (I worked freelance and often worked weekends but did get free weekdays as a result).

[DianneRose409 in reply to PMRpro]

LOL. My schedule is strange...I work Friday, Saturday, Monday Tuesday. I called in to take only a half day today. Thank you all for your advice.

[Marijo1951]

I've been on MTX since December 2017, 10 mg per week for the first couple of months, then increased to 15 mg. Initially it did cause some diarrhoea but that stopped when the rheumy increased my folic acid from once a week to 5 times per week. The worst effect was an increase in the overwhelming fatigue that I was already experiencing. However I've found I can deal with this by taking the MTX at night, shortly before going to bed. Every Friday evening I set my alarm for 10 o'clock to remind me to take it.

[sarojbahia]

I have been taking methotrexate for years now,15mg probably about 7years I would say. I have not noticed any side effects but then I never read about the side effects as it is very off putting. For me it is a new lease of life. I must admit I do get tired but then I burn myself out a lot so not sure if it is mtx or just me. I may be one of the lucky ones but much prefer it to pred and other meds that I was on previously. Stay with it and see how it goes. I have spoken to many who have said it dosn't suit them. What were the weird effects? just out of interest xxx

[DianneRose409 in reply to sarojbahia]

Thank you for your response. I just felt as if the injection was infusing into all aspects of my body immediately. I am okay now.

[MrsNails in reply to DianneRose409]

That’s helpful, explaining it was the injection rather than the tablet form. Yes, you might have felt ‘odd’ initially but as you say it’s passed now.....

I’ve had Chemo & they tell you before what you might experience ie a burning sensation which will pass in a few seconds.

Or like when they give you contrast for a CT or MRI there can be a cold feeling etc.

Good Luck 🍀

MrsN

[PMRpro Ambassador in reply to DianneRose409]

Ah - if you use the injection form that is a different matter. It is in the system very quickly.

[Dobermanlover]

I have been taking MTX since January, initially in tablet form but changed to injecting myself after feeling very nauseous. Initially I was on 7.5mg which was then increased to 10 mg weekly. It has definitely been a help in my ability to do a bit more gardening and I have been able to reduce my Pred from 10 mg to 8 mg without feeling any worse. Having blood tests every 3 weeks is a bit of a bore but I realise they are necessary to check for any of the many side effects that may arise. I take folic acid every day except on my injection day and always take it last thing at night (MTX). The day after I do rest as I find this helps. Hope this helps - I was very scared after reading the side effects but the thought of being able to reduce Pred overrode those negatives.