More meds arghhh! Anyone else had to increase? - NRAS

NRAS

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More meds arghhh! Anyone else had to increase?

Hessie5 profile image
Hessie5
β€’19 Replies

Sorry having a arghhh moment 😬. Came back from Mr Rheumy - he said not happy with markers ESR 21, CRP 29. So he has given more meds this is my worst nightmare, but got to do what I have to do right? So herewith my list:

Increased Mtx from 15 to 20mg. He tried to reassure me and say in the US they go to 30 but not in the UK.

Increased folic acid daily except day of mtx

Added Hydroxychloroauine 200mg daily

And to help get rid of the inflammation in feet - remember I said cannot walk - he said I must take the Prednisolone: 4 per day for one week, 3 per day for one week, 2 per day for one week then 1 per day for one week then stop!

Anyone else feel flat after having to take all these meds. Swallowing those tablets today was so hard, had to force myself to say do it....

Oh and he said do it google or read forums as I guess the stories may encourage me to throw them all down the loo 🚽 Need my forums 😊

Was so encouraged about this food way of controlling RA, now thinking of why deprive myself as 3 months and still the same after eating so well!

Anyhow hope you all are coping and being positive, as we must. Blessing to you all, stay strong. I shall keep you posted.

I should add to this, he said I I definitely would need the injections, but cannot put me through until he takes me through this stage ! Has to be after 6 months, he said June now.

Anyone else on the increase of meds? Let me know how you coped, could do with reassurance on this prescribed cocktail. - as always big hug πŸ€—

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helixhelix profile image
helixhelix

It happens....at one point I was taking over 90 pills a week. I increased little by little, so it sort of snuck up on me that I was on such a huge cocktail. But yes, 20g MTX, 400mg Hydroxy and 3g of Sulphasalazine. Plus folic acid, anti-inflammatoires, a stomach protector and vit D and a few other things for other health conditions. But the important thing was that IT WORKED!

I've been more or less in remission now for several years, and have managed to drop back to 1.5g Sulpha so with the swap to injectable MTX I'm down to about 50 pills a week which feels like a real treat.

It's hard to get your head around, and hard to look at these pills as friends rather than enemies but it does become easier over time. I had some weekly pills boxes hand made for me (I wrote a post on them if you want to see them) and I found that helped make pill taking a positive part of the day rather than a chore that I wanted to avoid.

Hessie5 profile image
Hessie5 in reply to helixhelix

Wow, looks like my cocktail is bearable now you have shared yours.

Thank you so much for such a thoughtful reply, it made me smile. Mr Rheumy is keen for me to get to a 'remission' with a switch to the injections by June. So the lovely, inspirational bunch on this forum will be hearing about my eventful days. (Promise not to whinge).

Sending you a big THANKS, as you've given me the hope and big prod needed to just do this it βœ”οΈ. Three months, day 1 and counting.

So my cocktail of meds and healthy eating it is. Oh and a pill box from Amazon too!

Stay well, stay blessed.

helixhelix profile image
helixhelix in reply to Hessie5

These are my boxes,

healthunlocked.com/nras/pos...

A bit of a one-off, but the important thing to me was to change the way I felt about taking all these pills, so maybe you could find something that makes you smile too.

Hessie5 profile image
Hessie5 in reply to helixhelix

Oops sorry acted in haste - thank you 😊

Richgirl profile image
Richgirl in reply to helixhelix

Never mind. I'm koo koo. Now I understand. Your message was only written hrs ago. Your pill boxes picture was sent a year ago. I'm learning.🌻

bradfordjoanna profile image
bradfordjoanna in reply to helixhelix

Just looked at them. So cute and much nicer than the plastic ones. Like is all I struggle to feel positive about the drugs but this could help! Thanks

Hessie5 profile image
Hessie5 in reply to helixhelix

Forgot to say, love to have the info on the pill boxes if poss 😊 Thanks

Eiram50 profile image
Eiram50

HH is right. At my worst I was taking 23 tablets a day, seven days a week. Now down to 19 per day plus 10 Mtx per week - going in the right direction, I think!

It is Really difficult to get Ones head around taking so many meds but I know for me, much needed as without them, I wouldn't function so now I just close my eyes, pop them in and try not to think about it .

I am hopeful that in time, the amount of tablets I take will continue to reduce and I reach that blissful place that is remission . I hope this for you and all of us here.

Marie

Hessie5 profile image
Hessie5

Thank you Mary, needed to hear these words, comforting and consoling 😊. All the best!

Hessie5 profile image
Hessie5 in reply to Hessie5

Btw sorry Marie to spell your name incorrectly ! I need to slow down 😊

JEM95 profile image
JEM95

I'm on 22.5mg Methotrexate, Hydrixychloroquine, frolic acid 6 days a week plus taken Naproxen, Oneprazole and co-codamol at night. The thought of all those makes me quake in my shoes, but they work!

I feel fabulous (as fabulous as it gets with RA), I'm under control and whilst I still hurt I can lead a near normal life at the moment.

It is scary but I trust my rheumy and do as I'm told, and glad I did.

I've felt good before then haveca wobble and need to adjust my drug cocktail - but it does work. Just takes time.

Hang on in there πŸ˜€X

Hessie5 profile image
Hessie5 in reply to JEM95

Thanks for the encouragement! So I woke up this morning with pinches and tingly pain in right leg - went to the Drs who claimed not the Predinosone probably the nerves, just happened to start post the tablets consumed yesterday. Had to take another 4 this morning - praying on this one. It's all good 😊

Marykate7 profile image
Marykate7

Hi I am taking something similar to you. Not steroids but I take naproxen as I have osteo arthritis as well. Thought I'd be clever and cut Dion to one naproxen big mistake, gave been in agony for a month. Back on two then. You just have to take what you need to be 'normal'. Hugs to you, if you can bear them!

Hessie5 profile image
Hessie5 in reply to Marykate7

Agreed - I know how tricky it is for us all, but we push through. Taking it day by day. Have a lovely day weather looks great πŸŒ₯.

marie66 profile image
marie66

Pills, pills and more pills seems the order of the day and here's my list. ..

2 gabapentin x3 times daily

2 salfasalazine ( going up to 4 daily next week)

2 ranitidine x2 daily

1 iron

1 vitamin

2 anti nausea (day of and day after jab)

1 steroid

1 meloxicam

1 cocodomol

1 methotrexate jab weekly

I went from no meds to this crazy list of 116 a week over the last year since diagnosis.

M x

marie66 profile image
marie66 in reply to marie66

and I cut dairy and meat from my diet 10 months ago and still the RA is active! Fingers, hands, wrists, feet and ankles! I'll get there! M x

Hessie5 profile image
Hessie5 in reply to marie66

Thanks for sharing! Looks like we all have these exhaustive list to get through 😬

It does make you think - I did the same, deprived myself totally ate clean, so was disappointed when markers were slighy up. I said to my Rheumy, may as well eat fish and chips!

I am going to live life as best I can as there is no magic cure for RA just learning to cope with it. Have a glorious weekend πŸŒ₯

BonnieT profile image
BonnieT

I’m in the US. I have been on meds almost a year now and was gradually increased. I take 2.5MG tablets - 10 a week splitting the dose 5 tabs and 24 hours later 5 more. Take prednisone for flares and taper down the way you described. Hate it and still deal with the pain. My feet are the worst and my ankles seem always swollen. Wish you the best.

nomoreheels profile image
nomoreheels

It is something that happens, has often to me & many others. Try thinking of it as I do & we're (Rheumy & I) both attempting to get things under better control. Often the increased doses can be reduced again once it's achieved & your pred addition is a short course temporary to bridge the HCQ effects. This is your med regime for the moment, it may change again or you may remain on it for a while (excepting the pred) if it's as we hope & you respond positively. Actually it's one reason we need to be clear & honest when we're asked how we've been since our last appointment. I've just had an appointment & annoyingly left my list at home. As a result I forgot two very important events I've had since my last meet. It could have made a difference to one of my meds but still.

Some of us are on quite a few meds, each have their place & they also need their doses adjusting from time to time, it's the way of things so don't worry it will all become second nature to you too. I have 11, all but 3 oral, actually 10 now because one has been stopped for the time being, still 118 a week. I'm remaining on 20mg MTX til my next appointment when it will be reviewed again to see if I'm coping without the one that was stopped.

Chin up, hopefully they will make all the difference. πŸ˜‰

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