Hydroxychoroquine or sulfasulazine?: I am on... - NRAS

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Hydroxychoroquine or sulfasulazine?

smilelines profile image
11 Replies

I am on leflunimide and my rhuemotologist said in May we would be adding to that in September. She will give me a choice between the two mentioned. I am thinking I will pick the hydroxychoroquine as I think it might not be as hard on the liver as my enzymes are often elevated. Does anyone know anything they think I should be aware of to help me make my choice.

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smilelines profile image
smilelines
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11 Replies
MadBunny profile image
MadBunny

It's interesting that you have been given a choice. I have never been given any choice about meds- my consultant has always made that decision. To be honest I wouldn't have known enough to make an informed decision anyway. At the beginning I was put on Sulfasalazine. I can't recall having any problems ( it was 14 yrs ago though😁) apart from bright yellowy orange wee ( sorry tmi).When I was put on a biologic, 4 yrs ago , although the nurse explained the different ones to me, and how/ when they were administered, the consultant made the decision.

Maybe you could talk it through with a nurse if you're not sure? I hope you find the right one, that works for you. Sending you best wishes.

smilelines profile image
smilelines in reply to MadBunny

I know!!! Thanks for responding! I feel the same. I have told her several times that I have no education or understanding of any of this yet she still asks me to choose. The last time she asked we to pick between a reduced amount of methotrexate or the leflunimide. I asked my family doctor. He said since I ended in the hospital from the methotrexate leflunimide would be the way to go.

Sheila_G profile image
Sheila_G

I find it strange that you are able to choose. I don't really think this is fair. The experts should decide. I hope you get the right one for you. Good luck.

Wobbies profile image
Wobbies

Never wanted that choice as no idea. Hope you get the right drug.

Bryu profile image
Bryu

Hydroxychloroquine is easier to take as you have a fixed dose from the start .With Sulfasalazine you have to build up the dose slowly to several a day. You do also get orange coloured urine.At one time I had to choose between Sulfasalazine and Methotrexate and given leaflets to read. The nurse actually said they had no idea which worked best and it was trial and error!

I chose Sulfasalazine as it was less harsh but in the end didn't need it and just now on Hydroxychloroquine.

Leics profile image
Leics

I’ve had both in the past. Sulpha worked best for a fair while but then gave me problems hydroxy didn’t work for me but seemed a little kinder on the stomach. I had to watch my liver enzymes too but never elevated on either so that’s not much help I know. There are pro’s and cons to both and we are all different so in some respects it is a little trial and error. Did find that hydroxy stopped me being eaten alive by mosquitoes whilst on holiday and both my husband and children weren’t so lucky that was pre covid of course. Perhaps look at NRAS website and gain further information and make your choice from that. But I would add perhaps speaking to your consultant would be in order instead of the nurse. Whilst nurses are fantastic most of the time a consultant should make the decision for you not the nurse or yourself, in any event you’ll be better informed.

smilelines profile image
smilelines in reply to Leics

Here in Canada I just have the rhuemotologist. No consultant or nurse. Then I have my family doctor. It seems like you have a better system. Thank for your reply! I will look on the NRAS site.

Bagpuss2021 profile image
Bagpuss2021

You need to read as much as you can on the pro's and cons for each, then when armed with the facts make a choice. Good luck

ketiv74 profile image
ketiv74

I chose to go with Hydroxy along with Mtx (15 mg/wk) that I have been taking since past 2.5 years. I understand that is one of the milder meds considering Liver health with Mtx, as my enzymes have been going slightly up then down once in a while. The only downside is, it could take a long time to start working. I have been on HCQ since Jan of this year, it took almost 5 months for me to see its full effect. Things have been under control since then. All my blood work was good in recent check and each marker was in normal range.

I still get mild pain in joints if I overdo things but I usually do not need a painkiller and the pain goes away in a day or two. When I asked about this in my recent follow up apt, my Rheumy said that as long as I can do everything and do not need painkiller too often we will continue with HCQ + Mtx combo. I have not seen any side effects on HCQ. You do need to get regular eye check up though.

Anniebl24 profile image
Anniebl24

Hydroxychloroquine does have an association with eye problems so it would be worth reading up on that when considering the options.

KittyJ profile image
KittyJ in reply to Anniebl24

Very rare hydroxyl retinopathy though 😊

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