Hydroxy panic

[Bon1]

Hi guys

Doc put me on hydroxy today to try and get the pred down. Just got home and popped the second one. Now I look at the box and see that it's called hydroxy sulfate and I am panicking because sulpsaalzine brought my liver enzymes up dangerously high. I've been told to avoid sulfa drugs. The internet seems to be saying that they are different but I am still getting my knickers in a right old twist.

Can anyone help with this query?

[nomoreheels]

No panic! The sulfate in hydroxychloroquine sulfate isn't the same as sulfa (the abbreviation of sulfonomides). Sulfate is a chemical salt in this instance, sulfuric acid, a medical grade used in meds. I've to not take sulfa drugs either as I also reacted to sulfasalazine, it's another alert on my medical records.

If you'd prefer to ask the Pharmacist where you have your scripts filled I'm sure he or she will be explain the differences for you Bon.

[Bon1 in reply to nomoreheels]

Oh wow thanks so much. I was getting more and more het up. And you've made me realise that when they asked me at the hospital pharmacy whether I had any allergies I said no. Clearly haven't got my head round all the changes I am stumbling through. Thanks again so very much.

[Bon1 in reply to Bon1]

But you take hydroxy right? Has it helped. My rheum didn't seem to think it would be enough for me - was talking biologics

[nomoreheels in reply to Bon1]

Not since 2009. It was my first DMARD & I was on 400mg a little over a year but it was becoming less effective so I started double therapy with MTX. It was stopped when it didn't help, MTX was increased & I was back to being ok again. It does work for many though as it did for my first year, it's the second most commonly prescribed DMARD after MTX I think, sometimes prescribed first if there's mild disease activity.

Did your Rheumy not explain why he was prescribing HCQ if he was talking biologics?

[Bon1 in reply to nomoreheels]

I think he thought let's give this a go. He said that if this combo worked it would be better than having to bring out the big guns!

Really appreciate your responses.

X

[nomoreheels in reply to Bon1]

So that's with MTX? I hope it works for you. I'm now on it with leflunomide, hanging on for dear life! My theory is the longer we can hold off the big guns the better. 😏

[Someonesmother]

I have an allergy to sulfa drugs too in a big way and I was able to take hydroxy well It did cause migraines at first but I was able to get those to stop by staggering the dose i.e. one every evening and one on Mon Wed and sun morning as well. It seemed to stop the migraines taking it that way. I had no problems with it increasing ,my liver levels and I have a damaged liver and am very cautious about what I take. Good luck.

[Mandalou]

It's not the same thing, confusing I know.

I too am massively allergic to Sulfasalazine and weirdly am allergic to Hydroxychloroquine too but not in a similar or dangerous way ( I just take a lot of antihistamine to combat an all over body itch)

So exactly as Nomoreheels says, dont worry Hydroxychloroquine Sulfate isn't a Sulfa drug.

Good luck with the treatment.

Mx

[Bon1 in reply to Mandalou]

Thank you Mandalou and Someone's mum! Really appreciate your answers as would need to be making a decision round about now as to whether to take the next pill!!

Oh and by the way - anybideas how long ( in a best case scenario) it might be before it does anything? I am desperate to get down on the pred. My dexa scan was not encouraging...

X

[Mandalou]

Morning Bon

Well I'm on Etanercept and Hydroxy because my liver goes bananas on Mthx and Leflunomide and Sulfasalazine nearly killed me.

I have just had my 8 weekly blood tests and my Liver ALT was the lowest it's been since diagnosis and I still enjoy a drink.

I've now been taking Hydroxychloroquine for over 18 months and combined with the Biologic seem to be holding me steady with a CRP of 2.

As soon as I started injecting Enbrel ( now Benepali) I started to reduce my Prednisalone it took two months to taper off and I haven't been back on it since.

Prednisalone is the devils drug IMHO, it saved me but gave me Diabetes ( now resolved) so I totally hope you can come off it like you say your bone scans weren't great.

I had huge doses of Pred at the start because my onset was so explosive and disabling but I'm doing really well now ( touch wood) and am back at work in a really physical role. I would say I'm 75% to 80% OK.

Still nervous about what each day can bring and I'm stiff first thing in the morning, I do the sideways creep down the stairs.

I hope Hydroxychloroquine makes a difference to you, they say it can take 6 months to get the full effect but in combination things can work much quicker.

If eventually your Rheumy does decide to go Biologic then I would say grab the chance as I felt benefit within the space of a month on Enbrel.

All the best to you

Mx

[Bon1 in reply to Mandalou]

Wow your story has some startling similarities to mine! Another member of the exclusive sulphsalazine tried to murder me club for one!

I've had higebsteroid doses too - I have also had hearing loss attacks because of how much my immune system hates me and the only way to Stop them is with IV steroids - on top of what I was already on for the arthritis!

But as you well know it's a Faustian pact we have no choice with.

Thanks so much for your very interesting reply. Another reminder that there is still hope!!

X

[Damaged]

I am allergic to Sulfa but did not react to Paquenil. Hope the same is true for you.But no need to panic. If it does affect liver the blood work will pick it up and it will be corrected. You should be on monthly blood work to monitor drug effects.