Worried about husband

[Denny39]

Hi,

I’m worried about my husband who has had chrohns for 20+ years and has now been diagnosed with drug induced lupus from inflimab which they said would go away, but 9 month later it’s still there. He is 39.

3 weeks ago he had a major flare up from lupus and is still not right. He’s on 30mcg of steroids and just been put on hydroxychloroquine. He’s had no improvement, is in intense pain daily in his joints, can hardly walk or even take a shower and is very fatigued. He is taking morphine daily for the pain.

I feel really upset seeing him like this, plus I’m not in the best health myself with thyroid issues.

Does anyone know how long this will go on for him?

thanks

[Lizard28]

Hydroxy can take about 6weeks plus to get into the system, it’s not a quick fix, hopefully the steriods should calm the flare, if not I’d go back to your doctor and see if he can help.

[Denny39 in reply to Lizard28]

They have been reducing his steroids from 30 and now 20. But nothing is helping up to now.

Do you know how long a flare can last? Thanks

[Lizard28 in reply to Denny39]

Sorry can’t say how long it would last, everyone is different but if they have started reducing the steroids maybe you should call them and tell them how much pain your hubby is on. 20 or even 30 is still a small dose x

[Denny39 in reply to Lizard28]

What dose is a good dose to be on to help with pain and inflammation? Tbanks

[Lizard28 in reply to Denny39]

It really is up to what the doctor thinks he needs. I’ve been on steriods many times over the years and always started on 40.They probably don’t want him on them too long as you then have to taper slowly. I take 400 hydroxy just now and have been on that for many years. I do flare every so often but feel I am coping well. It honestly took quite a while before it started working as I also had to take my time as it upset my stomach, I hope this helps a little bit but we have to rely on our doctors especially where steriods are getting prescribed, I hated being on them but they were the only thing that worked for me getting inflammation down. Fingers crossed the medication will start working.

[Denny39 in reply to Lizard28]

He went to hospital early hours of this morning as was in severe pain, tummy and joints. They have said today he has a water injection and are keeping him in, bearing in mind he was in hospital 2 weeks ago for a week for the same thing and it hasn’t resolved. They said his inflammation markers are low. I don’t think they are getting to the bottom of what is going on.

[Lizard28 in reply to Denny39]

Sorry to hear this, I really hope they get to the root of the problem this time. Maybe the correct antibiotic will help him this time. Best wishes and you take care as well xx

[MusicalFurbaby]

Hi Denny, sorry to hear of your problems and your husband’s flare-up! I can certainly relate to joint pain, but it sounds like your husband’s pain is quite severe at the moment.

I’m on hydroxy but it took a good 2 months to kick in, plus they had to amend my dosage. Even then, I found hydroxy didn’t help with my joint pain (it helped with other things instead), but having said that, a lot of people do experience joint relief on hydroxy. Unfortunately, it may be a while before you know whether the drugs will help.

The only thing that helps with joint pain for me is turmeric. That and resting. Turmeric also takes a while to kick in (about a month for me) so it’s not an immediate thing. Otherwise, heat and ice packs might help.

I’m so sorry I can’t be of more help. Thinking of you both. Hope your husband experiences some relief soon 🌻🌈

[Denny39 in reply to MusicalFurbaby]

thanks for replying.

Can I ask what dose of hydrox you take?

Have you also tried methotrexate? That’s another drug they offered my husband but said hydrox was a better drug to try first.

[MusicalFurbaby in reply to Denny39]

I started on 200mg daily but that wasn’t enough, so the doc increased it to 400mg which seems to be helping. I’ve never taken methotrexate so I can’t help you there, sorry!

[Pipido36]

So sorry to hear about your husband. I know how painful it is when you have a lupus flareup. I guess the hydroxychloroquine will be helpful though it takes time to notice the difference. It took me about six weeks on steroids and hydroxychloroquine 400mg a day when I started to get better. That's was in 2003. I was put on 40 mg steroids which were reduced weekly and ended up taking 10 mg daily for years. At present I take 200mg hydroxychloroquine everyday and have since stopped prednisolone. I hope he gets better soon. 🤗

[Denny39 in reply to Pipido36]

Ny husband is on 400mg hydrox and 20mg steroids. He has only been on the hydrox for one week but currently had no improvement and is severe pain which he is taking morphine and amtripiline for. I am hoping once the hydrox kicks in he has improvement.

[Pipido36 in reply to Denny39]

Hi, I hope it will work.out for him, it can take time to get better after a flareup but it's an individual thing. some take longer than others to get better.

[Denny39 in reply to Pipido36]

He’s in hospital again, he had severe joint and tummy pain early hours of this morning. They said he’s got a water injections and his inflammation markers are low, but he was in hospital a few weeks ago with the same issue and it’s not resolved so I don’t think they are getting to the bottom of what’s going on or it is just a horrendous lupus flare.

[Pipido36 in reply to Denny39]

Sorry to hear about that. I hope they will get to the bottom of it. I know at times lupus flareup can be very difficult to manage. With time it will get better.

[KeepingUpBeat]

Hi Denny, I have been on and off hydroxychloroquine since December 2018. At that time I was told I needed to give it about three months for the drug to get fully into your system and to see any benefit. 400mg was too much for me it made me feel really ill so I stopped taking it. During the pandemic I had a flare up after contracting Covid and the rheumatology department put me back on the drug at a lower dose, 200mg. It helped to reduce chronic fatigue but that is all. It definitely did nothing for my chronic joint pains; hands/wrists, knees, shoulder and feet. I came off hydroxychloroquine in January 2024 with agreement of the rheumatologist because they decided I had either UCTD or Sjogren's, still investigating which condition it is. I would say if you are not experiencing very difficult side effects, stick with it and see if by the time you reach the the months marker some of your symptoms have eased or are no longer an issue. I have taken prednisolone which greatly relieved joint pains but the rheumatologist does not want this to form part of my long-term prescribed meds because of steroid side effects. I do hope things improve for you very soon.

[lilah-tiggy]

Hi Denny, I've been on hydroxychloroquine for two years I was first told that I was put on it for scleroderma then my Rheumatologist said it was for connective tissue disease and then told it was for Lupus, I can't seem to figure out why I've not been told the truth about exactly what I'm on this medication for. The other issue with this drug is that it can affect people's eyesight, and my eyes have deteriorated since being on the drug.