Is anyone else on high dose of sulphasalazine? - NRAS

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Is anyone else on high dose of sulphasalazine?

Susie22 profile image
21 Replies

Hi! Due to a flare up of symptoms , s young house dr in my rheumatology department ( doing work experience as part of gp training) with no rheumatologist in the building has told me to increase my sulphasalazine tablets to 8 per day ( from 6) . This will be a dose of 4g. Is anyone else on this dose as it seems quite high?

Massive staff shortages at my hospital but I could phone emergency help line in morning. He seemed to think it was correct but tablet bottle says don't exceed 6 - agh!

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Susie22 profile image
Susie22
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21 Replies
keeta profile image
keeta

No on 6 thought that was high xx

Susie22 profile image
Susie22 in reply tokeeta

Yes, me too. I was put up from 4 to 6 a month ago - will keep to 6 until I have checked that he is right. Thanks xx

keeta profile image
keeta in reply toSusie22

What else are you on

Susie22 profile image
Susie22 in reply tokeeta

Hydro chloroquine 2 tabs a day. Failed on methotrexate. Have been flaring since May and steroid injections didn't do much. I also take 2 naproxen a day. Wouldn't mind if a rheumy had put amount up but it was this nice young gp trainee , think rheumatologist had phoned in sick 😬X

keeta profile image
keeta in reply toSusie22

I am on olumiant tablets and 6 sulf a day .can.t see why 8??

I.m not 100pc but better than for a long time .you need to ask why 8.

Keep us updated.x

Susie22 profile image
Susie22 in reply tokeeta

I will- thanks! Xx

keeta profile image
keeta in reply toSusie22

Xx

Creakywrists profile image
Creakywrists in reply toSusie22

At one point I was put up to 8 tablets from 6 by one of the doctors at the clinic - not my consultant. I was also on hydroxy and methotrexate. I queried it but was told that sometimes doctors increase the dose beyond the recommended limit if a drug is working. I was ok on 7 but began to feel really sick when I went up to 8. After I injected methotrexate the following day I got a very bad headache along with the sickness. I contacted the helpline and was told to cut back to the original level and drop it again if I still felt sick. I’ve been on 4 ever since and now take Benepali as well. I think 8 tablets is the dose of sulfasalazine used in ulcerative colitis

Susie22 profile image
Susie22 in reply toCreakywrists

Thanks for that , I'm not surprised that 8 sulphas... and methotrexate too would be hard to take! I think I'm going to phone the department tomorrow and query it. It all seems a battle- but this helpline is brilliant. Helps to know others experience the same ups and downs, doubts etc. Thanks again

barbieg profile image
barbieg

A locum Rheumatologist told me to increase my Sulfasalazine from 4 a day to 6. He told me 6 was the maximum dose so I would ring your RA helpline to check.

Susie22 profile image
Susie22 in reply tobarbieg

Thanks I will. The general consensus seems to be that 6 ( which I've been on for a month) should be the right amount. . I did query it with this duty doctor but feel he was looking at wrong chart maybe. Thanks again

helixhelix profile image
helixhelix

If you have Crohn's disease you can go up to 12 a day, ugh!! But I've not seen anyone on that sort of dose for RA. I was on 6 a day (3g) and that was quite enough.

Susie22 profile image
Susie22 in reply tohelixhelix

Thanks

Fra22-57 profile image
Fra22-57

I am only on 4 and when asked my rheumatologist if it could be increased he said I was on highest.another lie

Susie22 profile image
Susie22 in reply toFra22-57

Mine raised mine from 4-6 when my knees had suddenly got really bad . I had to go to 5 for a week first, then to 6. It has brought my blood tests back down a bit so seems to be working and I havnt had any different side effects but everyone is different- maybe there is a reason particular to you why it might not be a good idea, but worth asking again as it seems many are on 6

helixhelix profile image
helixhelix in reply toFra22-57

Like Susie says, perhaps there is something in your medical history that means the doctor felt that 4 should be your personal maximum. Or are you very small perhaps? As people also judge does in amounts per kilogram of you.

When I moved to France I was on 3g (6 pills) a day and my new rheumoltogist was not happy at all. She felt that 4 should be my maximum.

Fra22-57 profile image
Fra22-57 in reply tohelixhelix

I weigh 56kg I asked to be referred to a London hospital but they can only advise him.they said my RA was not managed enough so recommended Abatacept. It took 3 letters and me saying I would go to another rheumatologist for him to now take notice.hopen this helps

Scottishlad profile image
Scottishlad

When I was on Sulfasazine I used to spread my dose into three taking it morning, mid-afternoon and bedtime.

bpeal1 profile image
bpeal1

I was put up to 8 tablets a day a few months ago by my consultant and have had no issues and it does seem to have made a difference.

Maggsie profile image
Maggsie

I was once, many years ago, taking 18 a day. It was an error based on the Rheumy writing take 6 three times a day, which got translated into 18 a day. This went on for about 6 months with no-one, especially me, being any the wiser. It only got sorted when I told the nurse that it was making me very sick and I was throwing up the 6 tablets. She was horrified and immediately took me off them. Anyway, moral of the story is, it didn't do any lasting damage so 8 a day might be OK, but I would double check just in case.

My advice would be to ask a pharmacist if this is a safe dose

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