Mtx update

[Doublef]

I managed to contact Rhumatology department andd informed them I no longer want to take Mtx. They did not sound to happy about it but after of stubborn from me they agreed and continue to take 30 mg of Pred. My heart only has 39% work rate and need to use my time better. My GCA is behaving, question is do I try to reduce the Pred.pre I have a appointment on the 18th.

[SheffieldJane]

Methotrexate only works for a small number of us - it is no miracle drug. Only reduce if the time feels right for you. No rushing as you know. Good luck. 🍀

[DorsetLady PMRGCAuk volunteer]

Hi,

No reducing for time being.. you’ve been through a lot recently, so don’t push things on the GCA front. Let things settle before you even consider tapering - and then well into the new year.

[SnazzyD]

As much as I’d want to get away from 30mg Pred asap, I’d keep that dose until things have settled as in your viral attack has abated and your body has recovered some from the MTX. When that is, I think only you can know. You can then report on 18th with some idea of where you are rather than be possibly feeling off because of withdrawal and not being sure if that is what it is. I’m sure there are different ways of looking at it though and we all have our own logic.

Methotrexate taking is your choice and no one else’s, it isn’t as if it is beneficial in 90% of GCA cases. Has anyone mentioned Actemra?

[Doublef in reply to SnazzyD]

Not heard of it

[Rugger in reply to Doublef]

Actemra is also known as Tocilizumab.

[SnazzyD]

Tocilizumab? Sorry, Actemra is a brand name.

[PMRpro Ambassador in reply to SnazzyD]

Ro-Actemra in Europe in general!

[Doublef in reply to PMRpro]

On reflection a few weeks on Mtx and low immunity I get a virus and a chest infection and end up in hospital. That's how I see it and not cleared up yet so my heart rate shoots up over 100 every time I move making me gasp for breath so all I can do is bed rest. I need some ideas how to get my immunity up fast.

[Pixix in reply to Doublef]

I don’t know your circumstances, but I have had immunity issues for six years (before I had PMR & pred). I ended up seeing a professor in charge of a large lung unit. He found no easy solution, I had taken so many doses of antibiotics (67 courses in 2 years, many IV), nothing worked any longer. So my husband & I shield every winter. No Christmas parties, no pubs, lunches out. That all stops 1 December. Everything is ordered online. Last year we were the only people wearing masks at an outside Christmas market! But I really can’t be sick for yet another Christmas!! If we need to go in a shop, or go to medical appointments we wear an FFP 2 mask. It gives better protection than disposable masks. I take an antibiotic all the time, 3 days a week, which helps as a preventative. I turn every cold into a six weeks chest infection, & then get asthma, too! Just a thought! Avoidance can be the key, rather than dealing with the bugs!!

[Doublef in reply to Pixix]

Im sheilding full stop, thanks for your input

[Pixix in reply to Doublef]

Good news! I hope it works for you. It’s hard turning down invites in the Christmas period, but if it’s friends who know you, they also know how sick you are & that it’s something you must do for your health. If they don’t understand, maybe they’re friends you don’t need! I never understand these people in shops with flu & bad colds…so incredibly selfish! At this time, they will be well for Christmas, but are inflicting misery on others as they cough their way round! Good luck!

[ab58sf in reply to Pixix]

I am so sorry, but unfortunately I am very careful also. I mask up everytime I go to the grocery, doctor office, etc. I may be the only one with a mask. I worship online most of the time now. If I go in person, I wear the mask. I am on 4mgs of prednisone and I don't want to be sick. My rheumatologist told me to mask and not take any vaccines. I do everything I can to avoid sickness which reeves up the PMR. I miss a lot of things I would love to attend, but being well trumps it all! Praying for remission!

[Pixix in reply to ab58sf]

Good! Just make sure you don’t rely on those disposable masks, they aren’t that great. If you want good protection from bugs, the FFP2 masks are far greater protection. I worked for a fine filtration company for over 20 years, & if you truly want to avoid illness, better to have a good mask!!

[PMRpro Ambassador in reply to Doublef]

There is no way to get immunity to shoot up - you should be taking measures to avoid an infection. FFP2 masks are good. I just used one while flying. Depending on how bad you are - Pixix has explained how.

If you develop any infection while on MTX you STOP the MTX until you are recovered. That is standard practice.

[Doublef in reply to PMRpro]

I decided to to take extra folic acid and there has been a definite definite improvement

[PMRpro Ambassador in reply to Doublef]

I don't understand why doctors don't give more folic acid - the majority of patients need far more than 1x per week/

[Doublef in reply to PMRpro]

Im taking 1 a day

[Rugger in reply to Doublef]

I was prescribed 5mg folic acid x6 days a week, just avoiding MTX day.

[Doublef in reply to Doublef]

Still no change low BP high pulse and end up on the floor out of breath on bedrest feeling down

[DorsetLady PMRGCAuk volunteer in reply to Doublef]

So sorry to hear this….is anyone addressing your issues? GP? Cardiologist? Rheumatologist?

[Doublef in reply to DorsetLady]

I have appointments arranged and discussion with GP Surgery

[DorsetLady PMRGCAuk volunteer in reply to Doublef]

I meant now rather than in a couple of weeks time...😔

[Doublef in reply to DorsetLady]

no, so drastic measures I stopped talking all medication except steroids, blood thinners and water tablets and After 24hours I feel better, BP 120/65 pulse 86, no nausea better appetite and breathing better. Next is process of illiminatioon asking time and time again is it the cocktail of meds and told no, I just need some sleep now

[PMRpro Ambassador in reply to Doublef]

So reintroduce them one at a time - I never understand why they throw a massive list at us all at once. But it is a good idea to look at the list first and and identify a heirarchy of need - anticoags and pred are top of the list, so what comes next?

[Doublef in reply to PMRpro]

Sac/Valsart I think will see how the next few hours go

[Doublef in reply to Doublef]

All good, ezetemebe next bisoprolol last

[allofaquandry]

Methotrexate didn't work for me. I developed a bad dry unproductive chest cough that just got worse until I was coughing through the early hours of the morning and yet had no cold symptoms etc. It took me quite some time and some research to realise it could be methotrexate related. Once I reported it to my Rheumatologist I was told to stop the methotrexate and very slowly, over some time, the coughing did stop.

FYI I was then prescribed Laflunomide, another steroid sparing drug and that didn't work either, it compromised my liver.

I don't know how helpful this is but I have found that people sharing their experiences has helped me.

Best wishes and good luck