Would be grateful if anyone has experienced any of this could give me some advice x

[Ambennett]

Hi there hope you are all managing well. I am mum to a 20 year old diagnosed at 18 with lupus, raynaulds, livedo and a few others..

she manages relatively well however been having massive flare since beginning of march. Pain meds have been increased and making her so sick.. was eventually given kenolog last week, and now on day 7 and pain went from 9/10 to 7/8 although swelling in hands has noticeablely reduced.. previously kenalog has worked amazing. Has anyone had an injection and taken as long to help or I'd be grateful for any other options for her.. she cant stomach much more pain relief as so sickly..

She already has a difficult time getting BlackRock hydrooxychloroquine, as can only tolerate yellow ones, if anyone knows why?

Also been given option to get tests for belimumab infusions in addition to metoject and hydrooxychloroquine if anyone can give us any information on experience etc I'd be so grateful.

Shes going into her last year at university this year and really wants to try and get better and get out of this pain. Thank you ×

[Apricot100]

Hi Ambennett, I'm afraid i can't offer advice -- I have Lupus but have only heard and have experience of Hydroxy from your list. I'm sure others on this group have though.

Wishing you and your daughter well - I have 11 and 9yr old daughters. It is so hard to see them ill.

Xx

[Ambennett in reply to Apricot100]

Hi there,

Thank you ever so much for replying, I really appreciate it..

Her main medication she takes atm is hydrooxychloroquine (blackrock)and metoject (injection methotrexate) and the kenalog she had last week is the steroid injection however doesnt seem to have had a great effect this time..

Thank you so much for taking the time to reply to me and I also hope you are keeping well and your girls managing well at the minute with the lockdown.

Thanks again, xx

[Bebe76]

Some people cannot tolerate the Quinoric brand of hydroxychloriquine. I think it is the fillers that are used by this manufacturer.

[Ambennett in reply to Bebe76]

Hi there, thank you so much for kindly replying to me. I'm ever so grateful.

She did have quinoric amongst others of the hydrooxychloroquine and takes 400mg daily. All of the white coloured ones have made her so sick but seems to manage the BlackRock version easily however it is problematic to get it as apparently the pharmacy cant order specific brands although have been fantastic and have kept a few months supply for her just now after months of not having it.

I thought perhaps the film coating but others mentioned they too are film coated so was just curious as to what the difference could be.

Shes having a difficult time just now with flare and pain relief is also making her so sick.. so any advice is greatly appreciated.

Thank you again for taking the time to message. I hope you are also keeping well..

Take care,

Xx

[Bebe76 in reply to Ambennett]

Thank you. I hope your daughter finds some relief soon.

[Hooray37]

hello from the USA . sorry to hear of your daughter's pain. here in the states many different

drugs are used to treat lupus. i have lupus/sjogren's and i take METHOTREXATE 10 mg

once a week and it has helped me. Many people take REMICAID for their joint pain

with good results. As you know all of these drugs have some side effects but we all need

to find out what works best for us plus having a good rheumatologist can make all the

difference. I have suffered with extreme dry eye for years and spent lots of money

on over the counter drops which worked for a time. Finally seen at one of our top

eye institutes in Philadelphia and was give a rx for AUTOLOGOUS SERUM TEARS.

I was skeptical but followed through with the procedure and I can tell you that it

has been astounding. So we just have to keep on searching . I can also say that

any kind of stress will start a flare but your daughter needs to try and be positive

which is hard to do when you are suffering. Best of luck and I will keep you in

my prayers.

Maureen

[KellyInTexas]

Hello,

I’m very sorry to hear of the difficult time your daughter is having.

The manufacturer Zentiva seems to be better tolerated than others for those with GI upset.

The culprits are the excipients talc and polyvinyl alcohol.

Often times patients with mast cell activation syndrome tend to have more trouble with excipients.

Patients with Antiphospholipid syndrome ( APS) tend to have mast cell activation syndrome, According to my Rheumatoligist , who trained under Prof Graham Hughes at London Bridge.

You say you have Raynauds and livedo- do make sure you do not also have Antiphospholipid Syndrome.