Methotrexate side effects

[kiteekat]

Hi, I have GCA 2yrs & came off Prednisolone end August. Felt good during the summer, though tired month or so after withdrawal. Was started on Methotrexate in Jan 2022 after flare up & this continues. After coming off prednisolone I now found that I have stiff joints. I travelled several thousand miles over the summer and getting out of the car I was stiff and continue to be stiff after getting up from sitting position. I am also stiff getting out of bed, have pain down spine/pelvic area & MRI shows trochanteric bursitis in both hips. Do the side effects of Methotrexate have anything to do with this? Should I be looking to another med because of the side effects? I wonder if anyone has had similar experience following withdrawal?

[PMRpro Ambassador]

Sounds to me as if the PMR aspect of the GCA is still active and the MTX, not entirely surprisingly, doesn't manage it 100%. Prof Dasgupta, the UK GCA guru, was very much of the opinion that MTX doesn't have much of a role to play in GCA. Many PMR patients find that as little as 1mg or even less keeps inflammation under control - but after a few months on zero pred the inflammation builds up enough for the patient to notice the symptoms returning.

[kiteekat in reply to PMRpro]

Thank you for your comments. I wonder if you have any links to Prof Dasgupta's thinking ref GCA/methotrexate? My Rheum is the Dorset GCA expert who does the head scanning, so I'm thinking he is aware of Prof Dasgupta's theories. A 2nd Rheum who I have just started seeing privately works with him and is similarly fending off labelling my condition as polymyalgia saying I don't have active signs at present. He refers to deconditioning exacerbated by steroids. Inflammatory markers normal.

[PMRpro Ambassador in reply to kiteekat]

jinasc has the quote - I'll try and find it.

What does he class as "active signs"? Sometimes they are too keen on making it fit their ideas and put the blinkers on.

[kiteekat in reply to PMRpro]

Thanks, I look forward to receiving jinasc quote, as I'm not choosing to return to prednisolone for the time being. I'd rather suffer!

[PMRpro Ambassador in reply to kiteekat]

healthunlocked.com/pmrgcauk...

[DorsetLady PMRGCAuk volunteer]

Agree with PMRpro re. very small dose controlling symptoms ..and have to also say 2 years is not that long for many with GCA [plus PMR?] with or without MTX, despite what some doctors and guidelines may say.

Your activity during travelling over summer may have contributed to it flaring...

[PMRrunner]

In 2020 I was on leflunomide and managed a slow taper to 1mg of prednisolone when I had to stop the leflunomide due to side effects. In the next few months stiffness worsened and my inflammatory markers increased. Rheumatologist was reluctant to up the prednisolone and started me on Methotrexate, there was no real improvement in the stiffness though my inflammatory markers improved. In Dec 2021 I upped the prednisolone dose to 5mg. I was sceptical that such a small increase would be enough but the stiffness/pain reduced within a couple of weeks. I stayed on 5mg for over 6 months and I'm now on a very slow taper from 4.5mg to 4mg.

[Rugger]

I seem to be in a similar situation to you and PMRrunner. About 8 months ago I reached zero pred with the help of 2 years of Tocilizumab. My Rheumatologist started me on MTX, as she didn't want to leave me with no medication at all. In the past few of months I have become more stiff and we also put it down to deconditioning after 6 years of pred. However, I suddenly realised that my symptoms were so similar to those I had at the onset of PMR and this could actually be a flare! (My PMR involved bursitis in both hips as well as shoulders.) With my GP's consent, 2 weeks ago I started 5mg pred daily, with a significant improvement in all the aches and stiffness!

My CRP and ESR have risen slightly, although nowhere near as high as times during the last 6 years. I'm just off to the hospital for a repeat blood test and then waiting to hear from my Rheumatologist.

I am thinking that 8 months of MTX has not done much for my PMR or GCA if it's allowed the inflammation to build up. I'm more concerned about the GCA-LVV as it's less 'visible' than the PMR symptoms.

I felt well on Tocilizumab and am convinced it was the right drug for my type of inflammation, however, it is rationed to one year's treatment for GCA in the UK. (I had 2 years during to the pandemic.) Anyone starting it now needs to discuss what will happen when their allocation comes to an end.

All the best.

[PMRpro Ambassador in reply to Rugger]

Really is something the UK doctors need to shout about. If you have RA, TCZ is unlimited; So why is it different for GCA and not even allowed for PMR? PMR is potentially just as disabling and we can clock up a LOT of pred with PMR.

[PMRpro Ambassador in reply to PMRpro]

Just had a look: after 20 years since approval, Humira is down to 800 euros a year. So In 7 years time, maybe the same will apply to tocilizumab but it will be too late for us ...

[LemonZest11 in reply to PMRpro]

In Australia, for a drug to be placed on our Pharmaceutical Benefits Scheme, it must undergo extensive testing/trials. Our State and Federal Health Ministers told me that trials had not progressed beyond 12 months for TCZ use for GCA and nil trials for PMR. It can still be prescribed, but the cost here goes to AU$850 for 4 pens. Doctors won't prescribe though, because of potential legal ramifications. I managed to source some funding to continue, but I had to complete paperwork absolving everyone should things go awry. So far, so good.

[PMRpro Ambassador in reply to LemonZest11]

NICE uses the same argument BUT it has been approved for longer term use and has been used for RA for years. So where is the difference?

[LemonZest11 in reply to PMRpro]

The difference is that there have been trials for RA. It gets down to Roche working with whomever(?) to get those trials done. They’re not in a hurry because of $$, so independent research is required. We’re a small and compliant group … we need noise and the powerful to make it happen.

[PMRpro Ambassador in reply to LemonZest11]

There are a couple of studies just or about to be published on use in PMR - and my rheumy was involved with them. He says it won't happen because there isn't enough money to be made out of it.

[Rugger in reply to PMRpro]

I do hope that you are able to stay on it for as long as needed - you certainly deserve to!

[PMRpro Ambassador in reply to Rugger]

As far as I know I can as long as I stay here. If I were to come back to the UK I assume that would be it! If I did come back there is a LOT I would lose in medical care ...

[LemonZest11 in reply to PMRpro]

And also one in Scandinavia but results inconclusive. It's working for you and that is great news. Your Rheumy sounds on the ball.

[GayatriMantra in reply to LemonZest11]

I've just joined this group, what has happened these last 2 yrs for you on TCZ and how did you get the TCZ? Do you know the cost now? I'm in Perth, WA recently diagnosed with GCA, lost the left eye to Macular degeneration & possible hemorrhage now only have right eye. I'm now on 20mg Prednisolone after initial 75mg dose by the ophthalmologist but the rheumatologist wants me to begin Methotextrate while weaning off Prednisolone. I do not want to take the Methotextrate for its side effects, I think they are worse than the Prednisolone. How did you find TCZ for side effects, what is ,your position now with GCA? Did anything go awry? I am prepared to pay if I can get TCZ if its better than Methotextrate for side effects and control of the GCA........ without relapses? I would like to hear your story and any information you can give. Trying to have some sort of quality of life while battling this disease, its been a huge shock.

[DorsetLady PMRGCAuk volunteer in reply to GayatriMantra]

Hi and welcome, if you look at LemonZest11’s profile you can read all her posts - see this -

healthunlocked.com/user/Lem...

[LemonZest11 in reply to GayatriMantra]

Hi there, Dorset Lady has kindly given you a link to my posts, which go back a while so I’ll break it down for you here. TCZ worked wonderfully for me to the point that once my 12 months allocation was up, I wanted to stay with it rather than go on methotrexate, which doesn’t really have good evidence of efficacy anyway. Firstly you need the support of your Rheumatologist, you cannot gain access to it without that, they write the script. I approached Roche directly and they told me that if my Rheumatologist agreed, they would supply me with subsidised access. Four epipens will cost you $850. Roche got my cost down to just under half. The experts on here have explained that TCZ doesn’t work for everyone because it only works on one of the mechanisms that cause GCA. I’d be talking to my Rheumatologist first to see if you can have that initial 12 months which will be covered by the PBS. See how it works for you before you approach Roche. Side effects were minimal. It affected my neutrophils which we addressed by changing to fortnightly and then 3 weekly jabs. Good luck and let me know if you need anything further.

[PMRpro Ambassador in reply to LemonZest11]

It doesn't work 100% for everyone - it does work to reduce the pred dose considerably though even if you don't get off pred altogether,