New meds from rheumy: Hi everyone, hope we are all... - PMRGCAuk

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New meds from rheumy

Sue8 profile image
Sue8
6 Replies

Hi everyone, hope we are all doing ok.

I have been up and down over the past few weeks. I eventually had to increase back up on the pred to 20mg as advised by my rheumy helpline then a week ago I dropped by 5mg to 15mg again as advised. I knew it was a huge drop but I was back to see my consultant yesterday so I wanted to show him how bad it gets.

Anyway had a really bad weekend but I hung in there and needless to say by the time I saw my rheumy I was not as bad, typical. So as my crp is up to 29 again he knows that the MTX is not working for me. He toyed with the idea to increase it to 25mg but because of my hair thinning and already on folic acid 6 days a week he decided against it. So instead he has added another DMARD in Hydroxychloroquine 200mg twice daily. He said it works well with MTX and to try it. However as my crp is not going down and I flare every time I reduce the pred he has kept me on 15mg pred til I go back in 3 months. I thought this was funny as at my last visit he wanted me off the pred as soon as poss.

I asked about my swollen neck and shoulder muscles and he said it was the pred causing it along with my furry face lol.

Now because of all the pain I get in my legs from hips down I asked him if there was a possible elment of Fibro added in as the leg pain did not really fit in with the RA or PMR well not all of it anyway. He confirmed that I had got a degree of fybro also to which I laughed and said "oh why not, one more ain't gonna matter"

So I left with another illness and another med to add to my smartie box :(

The new med can take up to 12 weeks to work also so ibuprofen it is then til it does.

Oh the joys :)

Keep smiling

Sue

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Sue8
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6 Replies

Hi Sue,

so sorry you're having such a hard time, but at least your rheumy is pulling out all the stops to try and get you through all of this.

You never know, staying on the 15mg for quite a while might settle a lot of your symptoms down. Let's hope so. Try not to worry about the side effects because they really do get less severe as the doses drop. Easy for me to say, I know, but I really did feel like a hairy pig, but I got through it and now I look OK again.

Wishing you lots of luck - chin up, pace yourself as usual and don't lose hope.

Pats. xxx

meggies profile image
meggies

Hello Sue,

I don't normally post on here - I'm on the NE forum. I'm sorry to hear you're having such a hard time of things.

Reason I'm posting is that I was a bit alarmed when I saw you were taking Ibuprofen with Mtxe. I take Mtxe & was told at the start not (under any circumstances) to take any NSAID's such as Ibuprofen or anything aspirin based. Also taking Ibuprofen, other than the very occasional one, is not recommended either because of the increased risk of stomach problems as both NSAID's & steroids are not good for the stomach.

Only the information given to me Sue, but maybe worth checking it out - are they prescribed Ibuprofen or over the counter ones? I would be surprised if your pharmacist hadn't mentioned something.

Margaret

Sue8 profile image
Sue8 in reply tomeggies

it has been cleared by my rheumy. I was given naproxen but they upset my IBS so the hospital said ibuprofen and paracetamol. Yes the pharmasist picked up on it but only to ask if it had been explained and what contraindications were.. I also have lanzoprazole to protect my stomach

meggies profile image
meggies in reply toSue8

That's ok then Sue. The word 'Ibuprofen' does leap out at me I'm afraid. Pre diagnosis, so no steroids or Mtxe then, I was prescribed Ibuprofen. I was already taking Lansoprazole, but 2 days of the 'bright pink smarties' and I was in A & E with a gastric bleed.

Ibuprofen increases the plasma concentration of Mtxe, so it is unusual to combine them.

floramay profile image
floramay

hi sue i have RA,PMR,FIBRO, AND COLITIS sick of pain from head to toe, but i keep taken the pills, gone from size12 to16 but hey ho hopely there will be light at end of tunnel, not just for me but all of us.takecare x

Sue8 profile image
Sue8 in reply tofloramay

with you all the way when you say sick of the pain. Just been chatting to my parents and said that I can't believe that a year ago I could walk to town 2 or 3 times a week and now can't walk there at all. But yes hey ho onwards and upwards and pop those pils

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