Its been a very hard year for most of us. I have lost a son a sister a job and career, to top it all I was not seen by the Rheumatologist for obvious reasons. I was reducing and eventually stopped the Pred with predictable results so my mobility has been poor in recent months.
I saw the Rheumie today for the first time in nearly 2 years to discuss my PMR and GCA and it seems she is considering putting me on Methotrexate. Now as much as I'm desperate to get a life back one with legs that work and don't keep me awake I have to admit I'm a bit hesitant what with the risk of CoVid now that we seem to be in the middle of a third wave. I didn't think to ask her about the risks, we concentrated on the side effects but since getting home I have been ruminating about it.
I tentatively did a google search and only found a couple of reliable articles, One suggesting a link to increased risk but it did admit it was a small trial and further research was needed and another that seemed to suggest Methotrexate may even offer some additional protection from Sars CoV2. Of course this means I'm no further forward.
I'm sure others here on this page have been offered this medication and I'm hoping they had the foresight to ask the consultant the questions I should have.
Can anybody offer me their opinion please ?
I should add I am double vaccinated already.
Please forgive the photo. Its my son, the anniversary of his passing is coming up next week
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Travs
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I am sorry that recent times have been so filled with loss for you. I appreciate seeing the picture of your beautiful boy, I am so sorry that you lost him and your sister too.I do not have personal experience of Methotrexate as I was put off by the side effects. It is not clear whether you are back on Pred at all or how long you have had PMR/GCA. I am being treated with 9 mgs Pred and Tocilizumab injections. Are your particular worries vulnerability to Covid and it’s variants whilst being treated with immunosuppressants? A bit more background will help other members to respond to you in a more useful way. Kind wishes. Jane
Thank you Jane. Im not on Pred at all ATM I had reduced to zero a few months ago but the PMR started to come back when I went from 8 to 7 mg. I persisted as the GP convinced me the symptoms were because of the pred. It took me another 6 months to get to zero but now Im having to crawl up the stairs and have help to get off a chair. Im 57 FGS a former Marine and Paramedic Its so depressing and painful so I spoke up. part of the problem is my CRP is only slightly up, Rh factor normal so the diagnosis is tentative and made on symptoms alone. Nevertheless the Rhummie is prepared to start me on MTX, I think the plan is to add in 10mg Pred for a short time while it builds up. History is Stroke in 2013 which stopped me from working on ambulances, I took a promotion and had an office job. (stressful). First diagnosis of PMR in 2017 treated with 20 mg Pred. I didnt take it seriously though and it came back with a vengeance a year later so back on 20mg Pred then a provisional diagnosis of GCA pred up to 60mg quickly leading to Type 2 diabetes. Slowly reducing the pred since then. No input from Rhumie all through lockdown until yesterday. Im so tired of the leg pain and immobility Im willing to try anything but will I need to go back to shielding forever ?
It would be worth discussing Tocilizumab/Actemra injections (self administered, subcutaneous)with your Rheumatologist. Studies have shown that it really helps you to reduce Prednisalone whilst also dealing with the underlying disease. Figures on lack of relapse are encouraging. I was able to reduce my GCA Pred dose quite quickly. It is a very expensive drug and you have to meet certain criteria to be offered it. One of those maybe to try Methotrexate first. I also have the negative effects of long term steroid use ( another qualifying criteria). I feel hopeful for Tocilizumab. Nobody should be left to suffer in the way you have been. This time go really carefully, you are worth it!
Sooo sorry to hear of your loses. Being so ill yourself cannot have helped you deal with them.😥
As for MTX and covid (??). There doesn't seem to be too much info about it that is reliable. I refused to take it for my PMR and PA as it made me sick so I've kept to Pred (now on 4mg after 9 years). Many people are helped by it though I believe - your body, your choice.
Hi, So sorry to hear about your son and sister, how very sad for you.
As for methotrexate I too was started on this but it caused a lot of side effects and my rheumatologist took me off it. I’ve since tried various medication similar to methotrexate and all have caused massive side effects with me.
I take prednisolone and keep trying to reduce them, only to have a flare each time.
I think your body decides when it’s had enough of this illness and no amount of medication quickens the outcome.
That’s just my opinion, probably not what everyone wants to hear. I hate the fact fact my body is misbehaving and it’s taken me a long time to adjust but I’ve had to accept I’ve got GCA /PMR and learn to live with its restrictions.
You still need to take all precautions to protect yourself with all viruses.
I’ve no experience with the drug, but just wanted to say I’m so sorry the pandemic has hit you so terribly hard. Sending sympathy to you for your losses, and hope life turns around for you, S x
So sorry for your losses and a beautiful photo of your son. I’ve both GCA and PMR and have been on Methotrexate for more than two years. I’m down to 2mg prednisolone (it’s taken longer than expected, due to my inflammation levels). Apart from being a little tired the day after I took methotrexate (only in the early days) I’ve had no problems whatsoever. I get my bloods done monthly to keep a check that all is well. Hopefully one day I’ll be off both drugs but in the meantime so long as it’s keeping the diseases at bay I’m happy to continue. This is my experience, hope it helps x
Hi Travs I’m so very sorry about your son & your sister RIP - what a handsome young man, such a tragic loss.
I take Methotrexate & have since 2014 with two breaks one for Surgery & one for raised blood markers, which ultimately caused me many issues & a delay in resuming treatment. I am now back on MTX at a higher dose by injection & l’ve been able to reduce my Prednisolone to 10mg (again) it’s been a long time coming & l’m feeling much better.
I have written several Posts on MTX & you’ll find them in FAQ under Methotrexate, l will attach you a link.
Many people struggle with MTX & l’ve had issues with tiredness but personally l attribute the ability to reduce Prednisolone & feeling better to MTX
Kind Regards
MrsN
I’ve attached the link above, l’m heading out to the Dermatologist but will be back in a couple of hours so l’ll be happy to answer any questions later.
Thank you Mrs Nails, no not yet. Im to wait for the blood results then if appropriate start on 10mg Pred and Methotrexate. I think the plan was just a month or 2 on the Pred while the MTX gets to work then I guess reducing again to zero. Has anyone ever had a conversation with you regarding the MTX and CoVid risk ?
Hi, not about the Covid Risk but before l first went on MTX the risks were fully explained & l always took additional care around people who weren’t well. They take your blood tests 2weekly then monthly & one of the levels they check is your white blood cell count, so this is an indicator as to how your immune system is.
I’ll reply more just about to be called into see the Dermatologist…..
I think at the moment we are/were at a slight advantage due to mask wearing as that helps enormously, l did have a chat with my Rheumatologist last year & he said they were expecting Patients on DMARDS ie MTX to be more at risk but so far that had not been the case but we both agreed that could be due to Shielding & patients generally being more mindful.
I have had Chemo in the past & that wipes out your White Blood Count completely but l remained infection free due to diligent care when out n about, washing hands, using hand gel & wet wipes.
If you do catch a cold, cough etc you can stop your MTX; inform your GP who can prescribe Antibiotics if necessary.
For me now it’s just part & parcel of my life, it was only people who insist on trying to hug me or Mawh Mawh Kissing that l really tried to avoid, but obviously since Covid that hasn’t been an issue…..
For me Methotrexate has made a big difference to the dose of Pred l’ve needed to take. You’ll read more negative accounts than positive ones l’m afraid as some people do unfortunately suffer adverse effects.
How convinced is she that the problem is an inflammatory arthritis rather than a return of PMR? You were forced off the correct medication for PMR and we would have seen it all coming. MTX alone will NOT manage PMR, if it did they would use it rather than pred which they have a totally unreasonable fear of using. I've been on the forums for over 12 years and in that time I have come across only a couple of people where MTX replaced pred entirely. Most manage to reduce their pred dose by a few mg but still need some pred, mostly about 8mg it seems. Others are able to continue their reduction but it rarely is speedy and I would suspect these are the people who would be able to reduce anyway. Everyone is different, need different doses, take different times to reduce, tolerate different reduction steps.
There is an attempt to get funding for a proper trial with MTX to answer the questions about how well it works once and for all. Leflunomide looked very promising in a small study done by Dasgupta the best part of 30 years ago - but no-one has ever followed it up. It's more exciting to rabbit on about finding better medications than learning to use what they have well. I confidently DON'T expect the money to be forthcoming - I hope I'm wrong.
With MTX it comes down to how well you tolerate it. I lasted a month before the fatigue was so overwhelming for 6+ days a week that I said no more. I had no other MTX-side effects, they were all pred effects that I didn't normally experience and which were brought on by the MTX, it happens.
Is your rheumy aware of your medical history of pancreatitis? It is a rare side effect of MTX, probably more likely in the oncology setting (but rare doesn't mean it can be discounted entirely) and that it is more likely in combination with another immunosuppressant - does it also happen with pred? Given your history - how is your liver? MTX doesn't do livers any good.
Which ambo service are you with? Half my family have worked in the Service at some point in the last 15 years in various capacities!
Thanks PMRpro. I was with SWAST for 39 years sadly they couldn't find me any work from home at the start of the pandemic. I was diabetic morbidly obese and on 60mg pred so very high risk and needed to shield so they just let me go. Very disappointing after 39 years. 2 weeks later one of my sons took his own life. I dont know how Im still sane, perhaps im not ?Its fair to say the Pred caused my diabetes and I accept the risk of osteoporosis what they dont seem to appreciate is the impact of the PMR without it. It just gets worse and worse everyday off the pred. Its a massive undertaking to get out of bed then a day of pain to follow and back to bed. repeat Infinitum thats no life is it?
I think I may schedule a chat with my GP prior to swallowing the first Methotrexate pill since it doesnt sound like the silver bullet I was hoping for. As for the pancreatitis nobody has mentioned it, Im also on Omeprazole something I would be loathed to give up.
Im so glad I posted again in this forum, it always gives me angles I had not considered.
I had PMR for 5 years without any treatment - the GP didn't recognise it because my ESR/CRP were in normal range - the ESR wasn't normal for me though. I worked out what it was myself with many hours of online research - and it was a medical blog by a GP that provided the clues!
There is so much lived experience here that we see aspects a lot of doctors aren;t aware of. My own rheumy, who is a world name in the field, tells me he always learns something when we meet!
I have had PMR twice. The first time a GP misdiagnosed me as having RA and put me on methotrexate and Celebrex. I caught the flu and ended up in the hospital after an extremely high fever out of control. I wouldn't risk taking that for pmr. You sound like you need to continue with prednisone and experiment with time of day to best protect you from pain. Mine is 5 years on now and I am losing patience but sleep really helps. I am so sorry for your losses. I know my own losses were the stress that triggered this.
Thank you for posting the photo of your beautiful boy. I am very sorry for your losses.I have been on Methotrexate from the beginning along with 60mg prednisone as soon as GCA was confirmed. Started with 10mg to see how I tolerated it, then up to 15 and finally 20mg. I have no side effects attributed to MTX and certainly my prednisone tapering journey has been fairly smooth, with only a few minor flares.
The rheumatologist thinks the MTX is essential for an easier ride with prednisone and wants me to continue at least until I’m off prednisone.
I’ve been on folic acid all along, to mitigate the effects on my liver.
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