GCA symptoms return, update on chest pain, Methotrexate added to Pred

[Horsewhisper]

Hello everyone, I hope you are are feeling as well as you can be. I had a hospital appointment yesterday as having slowly tapered in 2.5 mg drops from 30 mg to 25 mg over a period of 6 weeks, became more symptomatic again. (Night sweats, temporal headache, increased fatigue and malaise.) A scan of the temporal artery didn’t show any inflammation which is probably due to the Pred and he said I was in a flare. I need to get on top of the inflammation to prevent any further potential damage and eye involvement so he put me back up to 30 mg Pred and prescribed Methotrexate as well. We discussed other symptoms related to my UCTD diagnosis which have re-appeared in this flare at the lower dose such as nighttime choking episodes, difficulty swallowing and internal tremor and he said the MTX may help with these also. I also mentioned about the chest pain and he saw the results of last week’s echocardiogram had just been posted to my notes before my Rheumy appointment! Very timely. He said that I have some fluid around the heart and that this could all be part of an inflammatory response in this flare or something else, so to arrange a follow up call with the Cardio doc to get some answers.

A couple of questions - can anyone suggest the best way or suggest a workable regime to take MTX with Pred? What are the best ways to minimise the side effects of MTX? (Changes to diet, lifestyle, time of day to take it etc.)

Also to chuck into the mix, I currently have low Vit D, Calcium and Potassium along with raised PTH, so trying to stabilise these things too through diet and prescription supplements.) I have a blood test next week to review these levels along with Hba1c (been a bit naughty with pred-mania-induced lockdown baking and ice cream making!) Now on a low sugar, low carb eating plan.

Thanks for your input, I find this site along with Lupus UK invaluable for help and support 🙂

[Rimmy]

Hello I can't comment on Methotrexate but I have also had GCA flares and managed to taper down 'again' - in fact a couple of times now - from a repeat high dose to a moderate one - 16.5mg - which has taken a few months. Because you had those relapse type symptoms I am thinking you still need the 'higher' Pred dose regardless of adding in any other drug and its own possible raft of side effects like Methotrexate. I also can't say much about your heart issues but inflammation in the body generally can play havoc with lots of aspects of our biological functioning and some puzzling things may be interrelated.

I find your mention of an 'internal tremor' very interesting as this is something I have had intermittently for years although I also have an external 'essential tremor' on and off as well. I am also curious about what you call 'nightime choking' episodes. For sometime prior to having PMR/GCA I used to have (early in my sleep) a sensation of jolting awake and feeling 'panicky' - and this was not as some suggested sleep apnea . Since being on Pred (for over 3 years now) these have abated and I now think this was possibly another precursor or symptom of then undiagnosed GCA - although hard to say without any 'scientific evidence' - and maybe not at all the same as your experience. Just thinking of the range of symptoms people have raised over time here as maybe part of an inflammatory AI condition or conditions - and they are very broad !

[Horsewhisper in reply to Rimmy]

Hi Rimmy, many thanks for your response and for sharing your similar experiences. Yes I’m inclined to agree that these unusual/unexplainable symptoms are all part of AI conditions. For me, they have been attributed to UCTD. The nighttime choking which abated on the higher dose, is particularly alarming as several nights a week, I wake up with my heart racing, unable to breathe and with the feeling of something stuck in my throat. And yes, definitely feel panicky with it! The docs have never got to the bottom of it and I accept it is something I just have to live with. The internal tremor is something I feel on and off in the core of my body and around my face, but is it is not visible! I have had nerve induction and blood tests for various movement and AI related movement conditions, revealing nothing significant. Interesting that your tremor and nighttime choking have also abated with Pred, perhaps when the flare passes and I eventually ease down to a lower dose, I may benefit the same, here’s hoping! I’m going to try and take it easy in the next few days and just potter about with as much rest as possible, to get over this flare. I hope all is well with you and best wishes.

[PMRpro Ambassador in reply to Rimmy]

I manage to choke in the daytime too!

[Horsewhisper in reply to PMRpro]

Eek! Not nice at all. I get occasional choking with food - as much as I love bread, it’s a choking hazard!

[tangocharlie in reply to Horsewhisper]

Give up bread it's a health hazard. Certainly for anyone who's got raised blood sugar levels due to Pred anyway (not saying you have - just general advice)

[Horsewhisper in reply to tangocharlie]

Indeed - I have had to cut right back, it caused bloating, flatulence and tummy pain - I don’t think we are designed to eat gluten anyway. I have one small slice of brown toast at the weekend as a little treat.

[tangocharlie in reply to Rimmy]

My rheumy thought I might have sleep apnea years ago so I got my GP to refer me to the sleep clinic, and sure enough, I did have it. I now have a CPAP machine at night. I've read in various forums that sleep apnea is common with people who have autoimmune conditions. I would wake up in the night in a kind of panic mode, gasping for breath and racing heart. I had mentioned it to my GP before when I was complaining about extreme fatigue but he never twigged it might be part of the problem.

[Rimmy in reply to tangocharlie]

This has abated with me without any such interventions since I started taking Pred - but is indicative that I may have had the AI condition - ie PMR/GCA for a while before diagnosis - an early 'symptom' one might say

[tangocharlie in reply to Rimmy]

Mine is better on Pred too, it gets worse as I reduce the Pred dose and my chest gets inflamed again

[Horsewhisper in reply to tangocharlie]

Interesting that you have had similar - it probably is all part of AI conditions. I have been offered a referral to a sleep clinic and may well do this once other stuff has settled down. My sister-in-law had sleep apnea and a CPAP machine - it really perked her up and she looked so much better for getting a decent sleep at night!

[tangocharlie in reply to Horsewhisper]

Yes I'd recommend it, and also ifyou get a CPAP machine get a water/humidifier attachment with it

[PMRpro Ambassador]

"suggest a workable regime to take MTX with Pred"

I think you may be overthinking this. You take MTX once a week - only ever once a week. Choose a day - until you know how YOU will react to it it is a bit difficult to decide which day. If you must work or have specific days where you have a committment you can't get out of then that may have a bearing but currently - most of us have neither. You can adjust the day later once you find out how you get on.

My rheumy told me to split the MTX dose, take half at night on the chosen day and the other half next morning. He finds that reduces the nausea problems - I certainly had no nausea at all. Some people find they feel decidedly fluey the day after taking it - those who work often take it at the weekend so they are able to manage work better. Many feel fine. The nausea can often be circumvented by switching to injections - they sometimes have other downsides.

You will/should also be given folic acid to reduce adverse effects. You never take that the same day as the MTX and how much you take depends on you and your rheumy. Some say take 1x 5mg per week the day after the MTX, others say 6 x 5mg per week, every day you don't take MTX. And anything in between. You need as much as you need of folic acid!

I noticed hair falling out in clumps within days of the first dose of MTX - that was me. I was permanently hungry and gained weight, about a kg in a month. That is very unusual! I bruised more. The worst for me was fatigue. It started in the second week and got steadily worse until the only good day I had was the day I would be taking the 1/2 dose of MTX in the evening! It was that that led to me saying no more. MTX seemed to lead to so-called pred adverse effects appearing - that I had never had before except with methyl prednisolone which I took for about 7 or 8 months.

But I must emphasise - everyone is different in how they react. However - don't be browbeaten into taking it if it makes you feel worse. There may be things you need to change - but maybe not. There is no real documentation from studies to show MTX will lead to a really significantly lower cumulative dose. The most positive study I have seen on its use in PMR said it took a year to get a noticeable drop in dose. And at a follow-up 5 years later (different paper) there were no differences in pred adverse effects.

You are flaring - you are flaring because the dose of pred you are at now is not enough to manage the inflammation - but I would suggest that is from reducing to dose too far too soon. Can't remember how long you have had a GCA diagnosis but it doesn't seem long to have reached 25mg.

Just looked - no, to have got from a starting dose that was pretty low anyway to 25mg since March 2020 is far too fast a reduction. Most people would take up to 6 months to get to 25mg. That is why you have a return of symptoms - and I would ask to be allowed to try a slower approach before trying methotrexate.

[Horsewhisper in reply to PMRpro]

Just brilliant - thanks so much PMRPro, all on one page too. Great advice, lots to think about and thanks again! 🤗

[PMRpro Ambassador in reply to Horsewhisper]

You did see the added paragraph at the end? I always worry when I edit a reply while someone could have been reading it ...

[Horsewhisper in reply to PMRpro]

Yes I did thanks - useful to know that getting down from 30 mg to 25 mg in 6 weeks is way too fast - Rheumy would have had me going even quicker! I’ll email the Rheumy team and suggest if I can adopt a slower approach before starting methotrexate and see what they say x

[PMRpro Ambassador in reply to Horsewhisper]

Did you only start at 30mg? That isn't even a recommended GCA dose - 40mg is the bottom of the range and only for non-complicated cases with no jaw pain or visual symptoms. Even then - it's the bare bones.

[Horsewhisper in reply to PMRpro]

Well they started me on 20 mg (because of Covid risks apparently) which did nothing, so they put me up to 30 mg and symptoms abated then. Since getting down to 25 mg, they have returned. Covid or no Covid, surely they should be a applying the correct dose for the symptoms? I’ll stay on 30 NHS for at least 3 weeks and see how I go...

[Rimmy in reply to Horsewhisper]

Yes they should - Covid is no excuse for an inadequate dose - after all what then would be the point !?

[PMRpro Ambassador in reply to Horsewhisper]

You should be shielding anyway - and using the wrong dose could have led to loss of sight. Yes, absolutely, they should be applying the right dose for the disease. I'm not impressed ...

[tangocharlie in reply to PMRpro]

Another thing to put on my list of 'things rheumatologists really ought to know'

[Marijo1951]

I've been taking MTX since December 2017. My only bit of advice is to take it at night shortly before going to bed. I found that if I took it during the day, I had to spend the rest of the day lying on the sofa as it made me so tired. I set my alarm for 10.30 p.m. every Friday to remind me.

[Horsewhisper in reply to Marijo1951]

Thanks for the suggestion, it’s useful to know as I will need to factor in family life along with a bit of work into the mix, regarding the day of the week I start taking it. Can I ask if the MTX affected your energy levels over the weekend when you took it in the Friday night?

[Marijo1951 in reply to Horsewhisper]

I don't think so. It's hard to be absolutely certain because of course I still have the 'deathly fatigue' of GCA and PMR, so I'm always tired to some extent. However I don't feel extra tired the weekend after taking MTX, whereas when I took it in the morning, I collapsed and more or less lost the rest of the day.

[Horsewhisper in reply to Marijo1951]

Ok thanks for the info, I think I might try the Friday night as the weekends are more manageable in terms of rest/commitments etc than during the week, if I am a bit knocked for 6 by the side effects

[Marijo1951 in reply to Horsewhisper]

Good luck!

[Susan1705]

Hi, diagnosed with GCA last June and prescribed methotrexate alongside pred that I was already on for PMR. I take on a Sunday and took a couple of months to adjust. Felt really tired on Monday and Tuesday. I took folic acid 3 times a week which helped. By September I had no side effects from the methotrexate. I take it after lunch and the pred with breakfast

[PMRpro Ambassador in reply to Susan1705]

Has it made reducing easier?

[Susan1705 in reply to PMRpro]

I am not convinced it has, was on 6mg before I had GCA as well as PMR all great and able to walk each day and minimal pain and stiffness. Am not yet down to the same level. I plan to talk to rheumatologist next week when I have a hospital appointment.