Hydroxy Not Strong Enough. mattcass: Hi All, I'm... - NRAS

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Hydroxy Not Strong Enough. mattcass

mattcass profile image
13 Replies

Hi All, I'm 9 weeks into the Hydroxy course it says it can take up to 12 weeks well up till now the bad days are winning up till now, the side effects I can handle, The pain is a different matter as you all know but the last 4 days have been unbearable painkilling meds are not working or they are not strong enough, If Hydroxy does not work I will be resigned to painkillers only for my RA , Sorry for the Moan!! I have not slept since Thursday and that's me

lying in my bed everytime Fran looks in I pretend I'm sleeping no sense in the two of worrying if this is going to work. Matt

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Caza profile image
Caza

Hi Matt, I can only tell you that hydroxy works for me. I can't take any painkillers so that's all I'm on. Compared to how I was this time last yr, I'm so much better. I'm back to walking & swimming. I do still get flares but theyre few & far between now. From reading the posts I think I probably don't an aggressive form of RA although before I took hydroxy there were some days when I couldn't get out of bed or walk.

So hope they eventually work as well for you. Take care x

in reply toCaza

Hi Matt. I'm sorry the Hydroxy has not worked for you yet. I think you should give it a fighting chance because there are no alternatives for you and because my instincts tell me that it's a better drug for RA than people think but it works more slowly than the others so requires some patience you may not find easy to acquire when you are in a lot of pain as you are.

I took it for a year and am going to ask if I can take it again soon. The rheumy's plan was to re-introduce it with the MTX since I don't qualify for the bigger, more expensive drugs. I think I may be taken off MTX because of the neuro problems it might be the cause of. I actually found that my ESR was lowest yet when I was on Hydroxy. It is a first line DMARD for people with Lupus - which is a very serious disease and probably worse than RA for most sufferers so it can't be a weak drug. I think it just works differently to the other drugs and isn't as toxic - which is why you are allowed to be on it with your lung problems. Try and view it as a friend and ally if possible because it's got to be really for you. As Caza says it's worked for her and others too. Tilda x

mattcass profile image
mattcass in reply to

Hi Tilda thank you for your input,Matt

mattcass profile image
mattcass in reply toCaza

Hi Caza thank you for your reply, Matt

summer32 profile image
summer32

It may take a little longer matt?? ,when on gold it took so long about five months and was so gradual it suddenly dawned on me it had "worked" did wonder whether they could use this "old" drug for you??, it stopped working for me unfortunately but I had a good eighteen months or more on it.x

mattcass profile image
mattcass in reply tosummer32

Hi Summer, thank you for your reply it's Hydrooxy or nothing. Matt

avjh profile image
avjh

Hi Mattcass So sorry the hydroxy isn't working as well as you'd hoped. I remember being prescribed this when I was first diagnosed with RA and it did help but I was still in a lot of pain.

I know you are limited in what drugs you can take. I was only prescribed paracetemol but I was in such pain recently that I asked for stronger painkillers and was given tramadol 50mg.I can take up to 8 a day.They have really helped and I now manage to sleep a little longer.

Are you also limited in the kind of painkillers you can take?Maybe if you have a word with your GP they will be able to give you stronger pain meds.You must be exhausted.Heres hoping your RA will settle down soon.xx

mattcass profile image
mattcass in reply toavjh

Hi avjh thank you for your reply, Matt

allanah profile image
allanah

It might be just taking a while, they say "around" three months but it could be a few weeks more. Have you tried all the "natural" type pain relief eg hot pads, ice pads, heated blankets, they are always a source of comfort to me.

Sorry you are going through so many health issues at the moment but we are all thinking of you and instead of hugs , i will send you virtual gentle massage. xxxxxxA

mattcass profile image
mattcass in reply toallanah

Hi allanah, Thank you for your reply, I have tried everything even trawled the streets looking for my local drug dealer, (joke) Matt

allanah profile image
allanah in reply tomattcass

lol, ever tried coke? i tried it once but the ice cubes got stuck up my nose lol ( thats a record same joke twice in a week hurrah!!) xx

mistymeana profile image
mistymeana

Hi Matt, sorry to hear the hydroxy hasn't kicked in yet. Are you able to take steroids? My GP gave me a course of them while I was waiting for the hydroxy to kick in and they really helped take the edge off. I remember thinking I was going to be one of the unfortunate ones that hydroxy didn't help as it felt so long waiting but when it did kick in it was like a wonder drug for me. I do so hope you find the same relief x

Case profile image
Case

Hi Mattcass

I sympathise, unfortunately until I went onto anti tnf nothing worked.

PAIN however, I was given acupan, it's stronger still than tramadol. This was to enable me to get some sleep as tramadol and paracetomol was not working. It is horrendous not being able to sleep. I'm expecting that you're not working? Following taking acupan I felt out of it the next day, didn't allow myself to drive just in case.

Hope it starts to work for u, pain to reduce so u can sleep.

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