Medications

[Tash1987]

Is anyone on these medications and how are you coping with them

prednisolone

Lansoprazole

Hydroxychloroquine

Mycophenolate

Ramipril

[Ianrussell69]

Hi I’m on hydroxy been on it for 2yr no probs takes a long time to see any results though I’m also on ramipril for rainods it’s lowered my bop but done nothing for the rainods hpfully getting salidaphil for rainods but having to jump through hoops to get it

[Tash1987 in reply to Ianrussell69]

All the medication have being good, part from the prednisolone which I’ve gain a lot of weight 😔

[katidid in reply to Tash1987]

I’ve gained a lot of weight on steroids too. Unfortunately it’s a common side effect. I was hydroxy for about a year, but stopped due to stomach problems. It was against the advice of my physician tho.

[Wendy39]

Hi.

I’m on:

*Hydroxychloroquine 400mg a day

*MMF 3g a day

*Mepacrine 50mg three times a week

This combination works well for me. I’ve used prednisone but 5 weeks courses at a max dose of 20mg a day. I’ve not been on pred every day.

I think we’re all on different combinations and it seems to be very much trial and error to find which combination works for each lupus sufferer.

Hope you get some helpful replies.

Wendy

[Tash1987 in reply to Wendy39]

Thank you

[Curly1430]

I’m on top three plus cholchicine , pregabalin made me sick but it does settle best meds I’ve tried

[Joy_1]

Hi

I take the first 3 on your list. What works for me:

1 - coated Pred keeps heartburn down

2 - Lansoprazole just before I go to bed stops the heartburn

3 - splitting my HCQ dose cuts down trips to the loo

[Tash1987 in reply to Joy_1]

Oh ok I was wondering why I was going to the toilet to wee so much especially at night

[Joy_1 in reply to Tash1987]

Hi Tash

I was referring to no 2's not no. 1's.

Someone a while ago on the Forum was saying that they were only on HCQ and they were experiencing gut issues which included more than 1 visit a day to do a no. 2. So some folk advised splitting their HCQ dose as that is what had worked for them. Anyways I tried it and within about approx 10 days I saw a positive effect.

Not sure about increased frequency of no. 1's at night, maybe someone on the Forum has an answer to that one for you.

all the best

Joy

[Wendy39 in reply to Joy_1]

Yes, I take 1x 200mg in the morning & 1x 200mg in the evening. And I insist on Zentiva Hydroxychloroquine brand only. Some Hydroxychloroquine plays havoc with your guts.

[Joy_1 in reply to Wendy39]

Hi Wendy

Is that a coated version of HCQ? Some folk have said they take a coated version and that helps cut the gut issues as well as splitting the dose.

Certainly enteric coated Pred has really helped me.

Joy

[Wendy39 in reply to Joy_1]

Zentiva is the branded version. All others are cheaper generic versions. They have different fillers but the same active ingredient. Zentiva suits me. The others give me nasty side effects. But I always take my Hydroxy with a small glass of milk as well.

[Joy_1 in reply to Wendy39]

Thanks Wendy.

[Wolf_1]

Hello Tash1987

I am now on 2.5mg of prednisone after weening myself off originally 50mg(so weight gain can be controlled a lot better) I used to be on Hydroxy but had to stop because it was affecting my eyes 👀. I am on Lansoprazole 180mg for stomach although it does give me a bit of wind 💨. I was on Ramipril for my blood pressure but after the SLE took my kidneys and I received a kidney transplant, Ramipril is apparently not too good for your kidneys so I was put on Doxasosin 3mg and Amlodopine 10mg for my blood pressure. As for Mycophenolate Mofetil I am on 750mg in the morning and 750mg at nighttime with Tacrolimus 1mg day and night too. I also have Fibromyalgia so for the combined pain I take Pregablin, OxyContin and Oxycodone. It’s not ideal taking all these tablets but as most people will know it really is necessary although when a flare hits me the Prednisone has to be put up! I am in a constant battle in trying to reduce my pain killers, which is easily said than done. Life is so really hard when you have Lupus but it would be a lot harder without the damn tablets so as the majority of people on this forum we keep battling, keep fighting and keep rattling with all these damn tablets just to try and have some kind of a normal day!

Good Health Tash1987

Wolf_1🐺🦋😴💤

[Tash1987 in reply to Wolf_1]

Thank you for replying means a lot,