Sulphasazine : I saw both rheumatologist and... - NRAS

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Sulphasazine

PSAWarrior28 profile image
20 Replies

I saw both rheumatologist and ophthalmologist last week.

Good news - I'm having cataract surgery under general anaesthetic. Apparently its high risk hence general. I'm also down on prednisolone from 15mg to 12.5mg. I'm hoping to be symptom free reducing by 2.5mg.

Bad news - I'm now have to take sulpasazine and associated blood tests in addition to hymiroz, methotrexate, hydroxcloriquine. Just tired of the constant round of meds, blood tests. (I've a fear of needles)

Anyone on sulphasazine? Any side effects? How quickly did you see improvement,?

I asked whether I could stop hymiroz but it seems to be that it has kept scleritis under control and with surgery due next month, rheumatologist said she couldn't risk changing my meds. I guess I'm feeling sorry and frustrated with the constant hospital appointments, blood tests, checking for symptoms...and on and on. I guess I would love to wake up one day...just one day where it was normal....no pain, no pill reminder. Just one normal day. Until then I guess I have to keep going as giving up is not an option.

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PSAWarrior28
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20 Replies

That is a lot of medication. Don't know what to say other than it must be a real challenge balancing them. Hope you get on ok. Take care xx

PSAWarrior28 profile image
PSAWarrior28 in reply to

Thank you 😊

cathie profile image
cathie

Would you mind explaining why your cataract surgery is high risk? I’m on a waiting list - with trepidation!

PSAWarrior28 profile image
PSAWarrior28 in reply tocathie

The sclera on my eye is very thin (,thinner than most apparently) otherwise I would have had sedation. They've had to bring in ophthalmologist consultant from Moorfields to do the surgery at my local hospital. Its also high risk because I'm immunosuppressed and at higher risk of infection post surgery.

cathie profile image
cathie in reply toPSAWarrior28

Thanks. I will be sure to ask about risks involving Rituximab when I eventually get my appointment. That's useful to know. I'd known about the need to avoid post op infection already. I hope your op goes smoothly.

PSAWarrior28 profile image
PSAWarrior28 in reply tocathie

Thank you and hope your op is scheduled soon.

I forgot to mention that you cannot be in a flare at the time of surgery.

Jackie1947 profile image
Jackie1947 in reply tocathie

Don't be it's fine as I had both done 6 weeks apart with local anesthesia

cathie profile image
cathie in reply toJackie1947

Several people have told me the same - so in hope! Thanks

JanetJAM profile image
JanetJAM

Hi I would like to ask the same I have RA and episcleritis and I’m having a cataract pre assessment in July is there a risk having it done awake? I’m on methotrexate thank you x

PSAWarrior28 profile image
PSAWarrior28 in reply toJanetJAM

For me there are numerous risks. Need to ensure that scleritis is stable. Being immunosuppressed means high risk of infection. Also my sclera is very thin.

Fruitandnutcase profile image
Fruitandnutcase

I imagine it could be because of other conditions or drugs or even the shape and / or condition of PSAWarrior’s eye. A general will give the surgeon more time to work, or perhaps cause less inflammation, I also imagine every case is looked on on an individual basis.Good luck with it, your world is about to get a lot brighter - then you’ll notice the dust you might have missed or as in my friend’s case when I dropped her off at home afterwards, her walls weren’t painted the colour she thought she’d chosen.

PSAWarrior28 profile image
PSAWarrior28 in reply toFruitandnutcase

Thank you. That last sentence made me laugh 😆. 😆 🤣 😂

Vixen2 profile image
Vixen2

Hi PSAWarrior. I know how you feel. I’ve had all my bloody RA stuff since i was 21. (50 now). I’m sick of hospital appointments. I’ve been going to Moorfields Eye hospital since my 20’s too. I have Iritis (Inflammation of the eye). & Glaucoma (high eye pressure). I had a cataract removed from my left eye when i was 24 & another removed from my right eye when i was 40. I’ve also had loads of steroid injections IN my eyes. Steroid inplants injected INTO the eyes. A trabeculectomy, as the pressure was 50 in my right eye. (Glaucoma) & i’ve had hundreds of Iritis flare ups. Millions of steroid eye drops over the yrs. So i know how frustrating health crap can be. I hate, hate, hate going to Moorfields. The staff are lovely. Really caring & sympathetic. But it’s the waiting, waiting. The stress of trying to listen for your name. Patients talking loudly to eachother, on their phones. I had to go there last week. I know within minutes when the Iritis is going to strike. A deep ache in the eye, Pain in the light & bad vision. Very red eyes. So then i think. HERE WE BLOODY GO. I had to go there at 3am a couple of times. (So glad i never had kids!!) I’m very lucky. I only have to take 1 bus there. I live in Covent Garden. I walked to Holborn. Couldn’t get a cab or a bus. Was an awful night. I was in & out of my flat, all night. On the last attempt to get a bus. I saw a guy being mugged. A horrible guy on a bike was circling the rd. I knew he was scum. He looked at me to see if i had my phone out. (I never have a handbag on my shoulder anymore. I only carry a plastic bag). He saw i didn’t have anything worth stealing. He zoomed across the rd, spotted his prey. Next thing i heard. Was a man shouting & running. The scumbag shot off into the night. I tried to comfort the guy. (I’ve seen the same mugger, mugging on 3 occasions).I eventually got my bus. Got there at 3, like i said. I was told there was only 1 Dr on duty & they were on the wards. That occasion was extremely, extremely painful. I could hardly open my left eye. Was on anaesthetic drops & painkillers. I wasn’t actually seen until 10am. The Dr didn’t have a nice manner. Which is very rare. I was exhausted when i got home. My usual ‘therapy’ is a big bowl of soup, cuppa & comedy on my tablet!!

I always ramble. Sorry. Good luck with your surgery. Hope it goes well. X

Mollycorn1936 profile image
Mollycorn1936

I am on methotrexate and various other drugs for heart failure. I had my first caterach surgery ten weeks ago it was local anethetic and i didnt feel a thing it inly tiik about ten minutes. I am having my ither eye dine next monday You cant imagine the diference it makes.The whole world gets brighter..

PSAWarrior28 profile image
PSAWarrior28 in reply toMollycorn1936

I can't wait despite my trepidation about the surgery. Take care.

Jackie1947 profile image
Jackie1947 in reply toPSAWarrior28

It's fine and nothing too it. Local anesthesic eye drops and 10 mins later all done. You have to wear an eye patch over night but after first night I tapped down some clean guage. It's so you don't scratch it whilst in bed. Eye drops that's all that's prescribed. The difference it makes is amazing. Embrace it!

Hopeful1 profile image
Hopeful1

I have been on sulphasalazine and hydroxy since 2017. Methotrexate added later. I have been able to reduce metho and hydroxy but sulpha keeps me stable. I have been trouble free with it. If any stomach problems ask for the gastric coated ones. Good luck with the eyes.

I have been on Sulfasalazine for 10+ years. It must work as I can tell straight away if I miss a dose. I can’t remember , but it will probably take 1-3 months to kick in. Re: your cataracts, my dad had both his eyes done recently (one at a time), he said he’d never seen so clearly! All very straight forward.

Green230461 profile image
Green230461

Hope it works for you💐

Jackie1947 profile image
Jackie1947

Have been on Sulphasazine for 16 years never a problem. Your wee wee is the same colour as the tablets 😊 I had both my cataracts under local anesthesia. Good luck

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